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**SSA Policy Conference**

**Immune System Disorders in the Disability Programs**

February 18, 2003

**Welcome, Opening Remarks and Purpose**

**Overview of the Disability Programs**

Sue Roecker, Associate Commissioner

for Disability Programs 4

**Overview of the Disability Process for**

**Adults and Children - How We Use Listings**

Barry Eigen, Executive Program Policy Officer 14

**Summary of Major Themes from the**

**Philadelphia Conference**

Donna Sue Bongardt, Executive Assistant

To Martin Gerry, Deputy Commissioner for

Disability and Income Security Programs

Nancy Schoenberg, Special Assistant to the

Office of the Deputy Commissioner for

Disability and Income Security Programs 34

**Session One Topic: HIV Listings**

Paul Volberding, MD, HIV Medicine Association 43

Hayley Gorenberg, Lambda Legal Defense and

Education Fund 57

Jane Gelfand, Positive Resource Center 86

Howard A. Grossman, MD, American Academy

of HIV Medicine 132

Eric C. Ciasullo, HIV/AIDS Return to

Work Initiative 162

Leslie F. Kline Capelle, HIV & AIDS Legal

Services Alliance, Inc. 190

**Session Two: Questions for the Audience**

Moderator by Susan Lauritzen, MD

SF Regional Office Medical Consultant 211

**Closing Remarks**

Sue Roecker, Association Commissioner

for Disability Programs 255

KEYNOTE: "\-\--" denotes inaudible in the transcript.

"\*" denotes word was phonetically spelled.

[P A R T I C I P A N T S]{.underline}

[Table One]{.underline}:

Paul Volberding

Hayley Gorenberg

Jane Gelfand

Howard Grossman

Leslie Kline Capelle

Eric Ciasullo

[Table Two]{.underline}:

Donna Sue Bongardt

Nancy Schoenberg

Barry Eigen

Sue Roecker

Susan Lauritzen

Patty Robidart

Sandra Moore

Sarah Patterson

Stephen Raffanti

Martin Gerry

[P]{.underline} [R]{.underline} [O]{.underline} [C]{.underline}
[E]{.underline} [E]{.underline} [D]{.underline} [I]{.underline}
[N]{.underline} [G]{.underline} [S]{.underline}

(8:45 a.m.)

**[Welcome, Opening Remarks and Purpose]{.underline}**

**[Overview of the Disability Programs]{.underline}**

**by Sue Roecker**

MS. ROBIDART: Good morning. My name is Patty Robidart. I am the Deputy
Regional Commissioner for Social Security here in the San Francisco
region, and it's a great honor for us to have today's and tomorrow's
sessions. We were tickled that the best of SSA has come out to listen to
what the public has to say about our immune system and

about listings.

Some of the people who are here with us today are not only from
Baltimore, but we have some of our executives also from the regional
office who will spending the day with you. So during the course of the
day please feel comfortable going \-- introduce yourselves and really
spend today and tomorrow if you're coming in tomorrow also getting to
know the folks who actually will be working on presenting a policy that
represents your best \-\--.

I'd like to introduce two facilitators that we're going to have today
from the San Francisco region. One is Sandra Moore. She'll be
facilitating this morning, and the other is Dr. Susan Lauritzen. Sue, do
you want to raise your hand? There, okay. Thank you.

Also our first speaker this morning is Sue Roecker. Sue is the Associate
Commissioner for the Office of Disability Programs. In the federal
government they do give us titles. Anyhow, Susan has spent much of her
adult life in disability policy, has lots of background and certainly is
a person who best is able to work with the tools and information that
you'll be furnishing today in \-\--. Sue.

MS. ROECKER: Thank you. Thanks, everybody, and let me just start by
welcoming you all and thanking you for coming. Please take the
opportunity to talk during the sessions when there is opportunity to ask
questions or make comments and also take advantage of the break time and
lunch time to talk to some of the SSA folks or to talk to each other.
Please make use of the time, and again thank you so much for coming.

Before I go through a little bit about the programs themselves just as a
primary in terms of Social Security disability I wanted to make sure you
all know that you have a binder that's in that little blue bag. It's not
just all little goodies. It's there is a binder. It has the agenda for
today and tomorrow. Today we are focusing on HIV. Tomorrow we're
focusing on non-HIV or everything else in the immune system. There is an
agenda. I guess it's in about the second tab back, an evaluation form
that we would be very appreciative if you would fill out for us. The
presentations that were available ahead of time are hard-copied in your
binder. There are several that didn't get here ahead of time, so they're
not in there but certainly my presentation and Barry's presentation are
in here as well as others. Then handouts in the back include the advance
notice of proposed rule making that was published and the current immune
system listing. So those are the materials that we have available right
now. I understand if you are interested we can get the other
presentations emailed and out to a mailing list. So if they are not in
here we can certainly get them to you.

Okay. This morning I'm going to do a very quick overview of the
disability programs just to \-- for those of you who aren't available
with some of the words and the lingo and the language and perhaps know
quite a bit about the medical aspects, may not know of the grounding in
terms of the program. Barry is going to take you \-- Barry Eigen is
going to take you through the disability determination kinds of things
with the listings and so forth, again just to give you a grounding in
how we make these decisions and how we use these listings.

We are here to get your input, so please, please take advantage of us
being here, of you being here. This is all about trying to get input to
help us write the notice of proposed rule making. We have not put pen to
paper yet on that. This is the opportunity to help guide what we want to
propose in that NPRM.

So what we are doing is looking at the immune system here today and
tomorrow, but we also \-- this is all part of an overall effort to
update all of the listings. We have listings for every body system and
rules that really govern the issue \-\-- disability claims. So this part
of that overall process for updating the listings, and we're taking
special care to make sure that we get public input for the immune system
as well as the mental system, too.

In 2003, just to give you some examples of what we've been doing
recently, we had a new rule on post-polio and a new listing, new final
regulation listing for ALS. We did publish the advanced notice of
proposed rule making for both the immune system and for mental.

The disability program is actually two programs by statute. There is
what we call the SSDI, the Title 2 program. It's a Social Security
program for workers and earned \-- people who have paid into the system,
and there is a supplemental security income program, SSI or Title 16,
which is really a needs-based program. The SSDI covers the workers,
disabled widows or widowers of workers, and disabled adult children. SSI
is both for adults and for children. The difference is the SSDI people
work and pay FICA taxes into the Social Security trust fund. SSI is from
general revenues from taxes.

With SSDI there's a five-month waiting period from the time your
disability begins. With SSI it's an immediate eligibility in terms of
payment, and it's needs based so that folks who could not easily wait
five months to get payments

\-\-- SSI. In SSDI there is no presumptive disability like there is in
SSI. Somebody because of needs if we have enough information, say we are
going to presume they are disabled based on some information, we can
start payments immediately while we then adjudicate the claim. In SSDI
we can go back 12 months. In SSI there is no retroactivity. Again, it is
a needs-based program from this point forward.

In SSDI there is no separate program for children. It's only for
disabled adult children of covered workers, and in SSI there is both an
adult and children benefit. Children under 18 can be eligible and
entitled if they are disabled. In SSDI after 24 months with a few
exceptions where you can get Medicare coverage earlier, basically the
norm is that you can have Medicare coverage after 24 months of being on
SSDI or Title 2 disability. With SSI that is the gateway to Medicare and
medical assistance.

How many people receive benefits? And what we did was just look at for
the immune system and for HIV. For Title 2, that's the SSDI, HIV there
are a little over 70,000 people receiving benefits. In all other immune
system disorders for Title 2 there are about 177,000 people. In SSI for
HIV there are over 45,000, and in SSI for all other the immune system
disorders there are a little over 61,000. Now, there is a little slight
double count there because some people get both Title 2 or SSDI and SSI.
So some people are in both categories, but those give you some sense of
the number of people that we are serving in these categories.

How do we make decisions, not from a medical standpoint, but how does
this process work? Well, it's kind of a unique process and some of you
probably know this and are very familiar with it, and some of you are
probably very confused because it's somewhat of an unusual situation. We
have a federal-state partnership, and we have some of our state partners
here today. But the actual disability determination is made by a state
agency that we call the Disability Determination Services or DDS. And
the rest of the process is really a federal SSA process which includes
local field offices, the tele-service centers, and people can call on
our 800 number either for information, to set up appointments, and so
forth, or you can also access us online. You can apply for Title 2
disability online at the website. You can fill out the disability
reports, which are those comprehensive forms that we ask you to fill out
that give us information about your medical sources, the who has been
treating you, hospitalizations, prescription drugs you might be taking.
So those reports can be filled out online and Title 2 disability
applications can be done online. You can also come into a field office
in person and file, or you can do it by mail. You can do it by phone.

But once that is taken, after we have all of those informations and we
get also signed release forms so we can get medicals \-- that's a very
important part. All of that information is then sent to DDS, and the
state DDS working for us, for SSA, will then develop the claim. We get
the medical evidence of record or MER as we call it. They try to get
information from treating sources that have been seeing you, evidence or
records from hospital, et cetera, and as well as other kinds of sources
of information that would be helpful in evaluating disability. If need
be they will purchase consultant exams or CEs to fill out the picture of
how your impairment or impairments might affect your ability to
function, and then they would make a disability determination, and
that's a team concept with a medical consultant, physician, and a
disability examiner who has been trained to make these determinations.
Then they also refer cases for vocational rehabilitation.

That's the initial level, but we do have appellate process, an appeals
process. The first level of appeal if you get an unfavorable decision
and wish to appeal it after the initial determination is to what we call
reconsideration. The state DDS actually processes the reconsideration.
This is primarily a paper-based review of the record, although they will
update the record for any additional information and then make another
decision, another determination. If that's unfavorable and you wish to
appeal it you can then appeal and ask for a hearing before an
administrative judge. This is de novo hearing. And finally the last
administrative appeal is a request for a review by the appeals council.
That again is an SSA component and function, and after the
administrative appeals process you can always appeal to Federal District
Court and so on. So we have an extensive appeals process.

Now in terms of rule making as we're talking about these medical
listings that are used, and Barry is going to explain how we use them,
there is a prescribed process in rule making that we are bound to follow
and we do follow. What we've done is pretty much said before we start
that official rule-making process with a notice of proposed rule making
we want to have much more open kinds of interaction. We want to talk to
folks; we want to get input. So we've used a vehicle called advanced
notice of proposed rule making which allows us to have meetings like
this, discussions, allows us to get some comments and to get comments
from anyone who is interested and would like to participate. So we've
used that for both the mental impairments listing that we're working on
as well as the immune system. We've had meetings like this. We had one
in Washington, DC for mental impairment, we had one in Philadelphia for
the immune system, and now we're having this one here. These have been
very beneficial so far, and we're very optimistic today it will be just
as beneficial as the ones we've had to date.

Based on all that input and all the interaction we will then go back and
start writing the notice of proposed rule making. That gets published,
and there's a chance for formal public comments on that NPRM. We then
consider those comments, and then we prepare a final rule that then
clears through the official process through the Office of Management and
Budget and then is published once it's cleared as a final regulation,
and then it becomes official and is binding on all of our adjudicators.

We have a website for comments. This is a screen shot of what the
website looks like, and this is what we will continue to use as we go
through the rule-making process for the NPRM \-- and with all of them.
We also have a really wonderful website in general, \"Social Security
Online\" or ssa.gov, and again all this information is in your binder.
This is the URL that will get you there. Here is just a screen shot of
what \-- if you go into the SSA website and you say, \"Well, I want to
know about the disability programs. I want to know more about the
program.\" We have all kinds of information available. This is the
homepage for the disability program. We also have \-- this is if you
want to file online. This is the first screen shot you see if you say
you want to file online. It walks you through that. All the rules and
regulations are available online. There's all kinds of links to various
information that we use in evaluating disability, and then finally we
have a really good work site for anybody who is interested in \"How do I
return to work? How do I fit work into this whole disability process?\"
There are all kinds of work incentives and work programs, and they're
all \-- you can find information on that on the website.

So unless there are just some general questions about the disability
program or why you are here, or as they say when you get on an airplane,
if you're not going to San Francisco you might want to get off now. So
if you're not here for the immune system meeting you might want to
leave. You can get free coffee of course but \--.

So if there isn't anything else let me introduce Barry Eigen who is the
Executive Program Policy Officer. Again, we really do like our titles,
but Barry is one of disability policy experts and he is going to walk us
through how we use listings and how we make decisions.

**[Overview of the Disability Process for Adults and
Children]{.underline}**

**[How We Use Listings]{.underline}**

**Barry Eigen, Executive Program Policy Officer**

MR. EIGEN: I'll turn this on while I'm doing this. I don't like my
title. One of the reasons I don't like my title is that in the
government we're big on turning words that make up acronyms,
abbreviations that make acronyms into acronyms, and my title spells
EPPO, E-P-P-O, like Groucho, Harpo \--. Anyway, so what I am is
basically the chief policy one for the disability program. We're the
people who write all of these instructions starting with the formal
instruction, regulations which are binding not only on our adjudicators,
but they're generally binding even on courts with certain ways of \--
well, it doesn't matter. They generally are, and we write many other
kinds of instructions, too. For example, the post-polio was a different
kind of an instruction than a regulation. That's what we call a Social
Security ruling, and we do all that sort of thing in our department.

Anyway, my job here today is there's good news and bad news. The bad
news is what I have to talk about is a little bit dry, but the good news
is, first of all, it's important. Because I think even though many and
probably even most of the people in this room know what I'm going to
talk about. I think it's important that we all understand the issue in
the same way, this issue of how to revise \-- how and whether to revise
various sections of the immune body system in our listing of
impairments. So I'm going to go through some various basic stuff and
focus on what the listings are and how the immune system is constructed,
and along the way I'm going to give you some things to think about.

The idea I think as you \-- I feel bad having my back to you like that
\-- is the idea is to put yourself in our position and say suppose
you're a bureaucrat in Washington and you're administrating this
gigantic program that pays tens and tens of billions of dollars, and
you've got all these thousands of adjudicators that Sue just described
and you have to write instructions that say if a person comes to you and
says, \"I have X,\" how do I decide whether the person is disabled and
say to yourself what are the kinds of problems people like we would have
as we try to come up with useful, understandable, up-to-date rules that
will remain up to date for a reasonable amount of time. That's a very
relevant issue for this particular subject as most of you know, and I'll
talk about some more. So anyway, that's what I'm going to do. The other
good news is I talk really fast, so I'll probably be done soon. Okay.
Next slide please.

So to start with the driest thing of all, remember in high school in
your civics class the first thing that happens is the legislative
branch, the Congress, makes the law. The President has sign it, but
basically it's the legislative branch; and here's what the law says is
the definition of disability that we must follow. Everything flows from
this, and there's three things to notice about this definition. I won't
read it. Does anybody need help reading the slides? Okay. I won't read
it.

There's three things to notice. The first is it's very, very strict. The
first line explains that you have to be unable to do any substantial
gainful activity, and it's a work cast based on an ability to function.
The second thing to notice is that the inability to work has to be
mainly because of your medical condition, your physical or mental
condition, and as a matter of fact we consider combinations of
conditions. The third thing to notice is that there's also what we call
a duration requirement in the definition of disability. It's not enough
to be unable to work by reason of your impairment, but the impairment
needs to endure for at least 12 continuous months or to be expected to
result in death. Next slide.

Now the law doesn't say a lot more about this definition of disability,
but it does say a little more; and the next paragraph is especially
important, and there are some words that I have bolded on this slide
because you'll see that they will show up in our regulations that say
how to implement this standard in the law. So the law goes on to say
when we're figuring out whether you're unable to do substantial gainful
activity we have to consider whether your impairments are severe enough
to prevent you from doing that, but we also have to consider whether you
can do not only your previous work but also any other kind of work, and
we have to consider your age, education, and work experience. So as a
practical matter for example if it was possible to have a person who is
22 years old and a person who was 62 years old who have exactly the same
medical impairment with exactly the same effect it's possible under this
definition in the law that we would say that the 62-year-old is disabled
but the 22-year-old is not from using rules that I'll explain to you
briefly in a little bit.

Now another thing this law goes on to say that's not on the slide, and
this is a very interesting point, is that it doesn't matter whether
there are any job openings, it doesn't matter whether there are jobs you
can do that exist near where you live, and it doesn't matter whether you
would be hired if you applied for the job. Now the reason the law says
that is to explain that the definition isn't really a definition to
determine whether you can go back to work. It's just a way of describing
medical severity. It's a way of saying how bad does your disability have
to be in order to qualify for benefits.

Okay. So that's very dry. Now we go to the next slide, and here's what
our regulations say. So now we're into the executive branch, which is
why there's a picture of the White House. What the law says is \-- we
don't say very much, but Congress says to us that we can write more
detailed instructions that explain how to implement the law, and the way
we do the disability for everybody except for children who apply for
SSI, who we have a different definition of disability and a different
way of determining disability, is this. So this applies to everybody
under what Sue called SSDI or Title 2 and also all adults under SSI. The
only reason I'm not mentioning children now is it's a whole other
subject and the issue about the listings for children is the same as the
issue is for adults. So there's no reason to keep going back and forth
and explaining all that.

So what we do is we take that definition with all the bolded words that
I mentioned before and we've created what doctors like to call an
algorithm. It's a series of steps that you start at the first step and
you see if you can find out the answer, and if you can't, if you can't
decide the case, you go on to the next step and you see if you can find
out the answer, and so on and so on and so on, until you get all the way
down to the fifth step. If you read them all together you'll see it
looks just like the definition of disability we just read, \"Are you
able to engage in substantial gainful activity by reason of any
medically severe impairment?\" PRW stands for past relevant work. So
that means are you able to do your previous work, and finally at step
five your other work.

Now the reason we do it this way is we know from decade of experience
that it's often possible to make a decision in a case without going all
the way through that whole big, long definition of disability. So for
example, the definition of disability starts with inability to engage in
substantial gainful activity. Well, if you have a person who is actually
engaging in substantial gainful activity the person is obviously able to
do that regardless of how serious the medical impairment is. So what our
algorithm or sequential evaluation process says is there's no point in
going on because we can't possibly find you disabled under the statute
because you're able to do substantial gainful activity.

Now the next two steps, I'm going to focus on them a little longer than
the last two steps, are what we often call just \-- we call the
screening steps, and the reason we call them screening steps is that
they're a quick way of deciding that person is not disabled or that
person is disabled without having to go through the rest of the
definition of disability. Now we'll go to the next slide and we'll show
that.

So, by the way, substantial gainful activity is not the focus of this
meeting, but for the most part it's an amount of earnings that a person
has in the course of a month. The amount changes each year. This year
it's \$810 a month for people who aren't blind. It's more for people who
are blind because that's in the statute.

So now we're at the second step, and the second step asks two questions.
First of all, this is pretty obvious, do you even have a medical
impairment, and both our statute and our regulations explain that to
show whether you have a medical impairment you have to present us with
medical evidence consisting of \-- these are actual words in our rules
and the law \-- signs, symptoms, and laboratory findings. The law also
says that you can never establish disability based on your symptoms
alone. Your symptoms are what you tell us you feel as a result of your
condition. So for example pain, nervousness, fatigue in and of itself,
that's not sufficient to show that you have a medical impairment. So you
have to have some sort of objective medical findings. Also they have to
be severe, but the reason I have the word severe in quotes on the slide
is that it's what we call a term of art in our program. To us the word
severe doesn't mean something that's very severe. It just means that you
have more than a slight or minimal impact on your ability to do a basic
work-related activity. There's a similar definition for children. So
there's a picture here that shows most people have severe impairments,
and it's a low hurdle to jump over to get to the next step.

But if you happen to not have a medically determinable impairment or
your impairment is not severe we have to say that you're not disabled.
If you do, however, which most people, the great majority of people do,
we ask the opposite question. Is it so severe that we should just go
ahead and decide we don't care if you're 22, we don't care if you're 62,
we don't care what you've done for a living in the past, what your past
work is. Everybody who comes in the door, are you disabled based on this
medical severity? And that's where the listings come in. Let's go to the
next slide please.

Now the listings \-- this is what our regulations look like, by the way,
and it's divided up into chapters. It's a huge book with tiny print. But
in one of the chapters in an appendix is the section called the listing
of impairments, and what it is is it's a list of medical conditions that
adults and children can have divided up into body systems very much like
what you learned about in high school. You know, muscular, skeletal, and
cardiovascular, and now we have the immune system; and within those body
systems we have particular rules that describe sometimes specific kinds
of impairments, like AIDS for example, with particular medical findings
and sometimes medical and functional findings. In fact the HIV listing
illustrates both of those things, and if you have exactly what it says
in that rule we say you're disabled where we say that you have an
impairment that meets one of our listings, which is what all this says.

Now the other thing the slide says that's important to notice is the
phrase any gainful activity, which you might notice is different from
the standard in the statute which is any substantial gainful activity.
The reason \-- that's not a typo. The reason is that the listings are
supposed to be more serious impairments than it would take to show that
a person is disabled if we went through the entire process all the way
to the fifth step, because we are not considering whether the person can
do previous work or any other work and we're not considering age,
education, and work experience. We're just saying you have this, you're
disabled. Next slide please.

These are the body systems. There's nothing to say about them except to
notice that we do have two sets of listings. One for what we call
adults, people who are age 18 and older, and anybody under the age of 18
is a child in our program. Sometimes we can use the adult rules for
children, but never the other way around. That's just a small point.
Okay. Next slide.

Now I'll go through this one pretty quickly, too. But it's to illustrate
what I was talking about in the beginning, which is pretend you're a
bureaucrat and you need to figure out how you're going to go about this
process and what problems you might encounter. It's to get you thinking.
We were a little bit late in coming up with rules for HIV infection in
our regulations. Many of you know we did have instructions for
evaluating HIV before this; for example, in one of these Social Security
rulings I mention and even in other kinds of instructions before. Part
of the reason for this is we're not medical scientists. We're just
people who dispense benefits, and we have to follow what the medical
science is, and so it's \-- we have to wait until people know more and
more and more before we can write good, clear rules that everybody can
use, and as you all know and as many of your comments indicated this is
a moving target. HIV has been a moving target. In fact, I can tell you
that even when we were writing the 1993 rules the medicine was changing
while we were writing the rule. So and now as your comments have pointed
out there have been tremendous changes in the past 10 or 11 years since
we published our rules. So one of the things to think about is how can
we write rules that will at least be current by the time we \-- when we
publish them they won't already be out of date and that will endure for
a long enough time so that we'll be able to keep using them for a while
as medical science keeps changing.

Okay. Now if you look at \-- now you have to do something. Look at the
back tabs of your books where you have the two handouts that show copies
of the listings. If the first one says 114.00 that's okay. That's the
one for children. That's the part B(1), but you can look at either one
of them. It's just to illustrate what listings look like and what the
various sections are for. How am I doing on time by the way? I'm
probably a little over.

MS. : No. You're fine.

MR. EIGEN: I'm okay? I'm almost done. I promise. The very last tab.
Anyway, each body system is itself divided up into two sections. The
first section is introductory material, and you can see that in either
of the two handouts in your back tab. It starts with 14.00 or 114.00,
and there's a lot of dense text with little letters and numbers next to
it, lots of paragraph. If you riffle through the pages until you're
about halfway through you'll notice it suddenly starts to look like \--
more like an outline. The part that looks more like an outline, these
single lines with numbers that are higher than 14-00, like 14.02 or
114.02, those are the actual listings. Those are the rules that show
whether you are disabled, and they're the listings you can meet and be
found disabled.

So what's the introductory text for? Next slide. The introductory text
is very important, as many of your comments pointed out, because it
provides guidance for a number of things. For one thing, it defines many
of the words that are in the listings, the ones that the \-- second half
of the listings. For example, if we say something has to be disseminated
we say what disseminated means. Or if we say you have to demonstrate
that you have HIV there's a part that explains what evidence you need to
show that you have HIV infection, and there's even another part that
explains what you have to show to show that you have one of the
manifestations of HIV infection. Of course this was a very important
focus of the comments. There's a fairly long section on the effects of
treatment of which many of you commentors were quite critical and made
many actually very good suggestions about the current state of the art
of treatment, what's good, what's not good. So there's a fairly long
section on that, and in each of these parts we also back in '93 tried to
include specific guidance about evaluating the particular effects of HIV
infection in women and girls and in children in general, particularly
young children. So those are focuses of things that we should talk
about, how we can fix them, update them, what needs to be done to them
if anything, that sort of thing.

The introductory text is also important because we've often used the
information in the introductory text to evaluate claims even not under
the listings to provide guidance to our adjudicators on things to look
for when they're evaluating a case, even if they are considering whether
you can do your previous work or other work. So there we're able to talk
more. That's why you see those long paragraphs and long discussions,
because it's more of a guidance document than the actual rules in the
listings, the rules that we call listings.

Then there are the listings proper. They are the things that look like
\-- like I said, the outlines. They have numbers from 14.02 up to 14.09
or 114.02 to 114.09. The HIV listing is at 14.08 and 114.08, and as most
of you know it's divided up. But the great majority of a listing is a
group of categories of various kinds of manifestations a person can
have. You see examples of that, and then within those categories are the
names of particular things that you can have. So for example under
bacterial we have tuberculosis, that sort of thing.

The last two listings are probably the most interesting for us, because
they are for the people who are not the most obviously disabled the way
some of the earlier listings describe people. So 14.08M, which has a
different letter in the corresponding childhood rules because there's an
extra listing in the childhood rules, is for people who don't have
impairments that are obviously so severe that we should presume that
they're disabled just by seeing that they have the illness. But they
describe people who get sick a lot, who get sick repeatedly, and it's a
way of trying to include people who are like that, who \-- their immune
systems are so compromised that even though they might appear in between
to be not so bad you can see if you look at them longitudinally that
they're not doing well on a 12-month basis.

Then of course the last listing in each of these sections, which was a
great focus of the comments, was our attempt include a listing for
people who have some of the vaguer, more symptomatic manifestations of
HIV infection and have very serious functional limitations. As probably
all of you know, we based those functional limitations on the domains of
functioning in the corresponding mental disorders listings for adults
and children and try to translate them into terms that would be
appropriate for physical function. For example in the mental disorders
listings we have a \-- for adults we have a domain of activities of
daily living. Well, there is no reason why a person who has a physical
impairment couldn't have a serious limitation in the ability to go
shopping and get out and do those sorts of activities just like a person
who has a mental disorder would have those kinds of problems. So that
was our attempt to incorporate that sort of functional assessment within
the listing. Okay. Next slide.

Okay. That was it. It's going to go really fast now. What happens if you
don't have an impairment that meets a listing? First, most important \--
I'll probably say this several times in the next couple of days \--
you're not denied. Nobody ever gets denied just because they don't have
an impairment that meets a listing because the listing step is only a
way of screening people into the program, not out. So the first thing we
ask before we leave the listing is even if you're not having an
impairment that meets \-- that's exactly what it says in the listings,
maybe you have something that's just as bad, and so we have a very
complicated policy for determining what we call medical equivalents. I
won't go into it now, partly because of the time limits, but partly
because it's not really relevant to what we're going to talk about today
I think. Next.

And then just to finish out the sequence, if you don't have an
impairment that meets or medically equals one of our listings \-- when
did you put that out, 10 minutes ago? That was the two-minute warning.
But the next question, remember the definition of disability, is can you
nevertheless based on what we call RFC, the residual functional
capacity, what are you able to do physically and mentally despite your
severe impairment. Can you do your previous work, and if not can you
make an adjustment to other work considering your age, education, and
work experience? And that gets you through the whole definition.

So then the last substantive slide \-- I won't read all this. I think
I've made the point. These are just from reading through the comments
and just from thinking about what would I worry about hearing from you
if I was updating the listings. These are the kinds of questions I would
hope you would ask yourselves as you discuss and give us advice over the
remainder of today. I want to focus on the next-to-last, because it's a
difficult issue, particularly in a group of advocates. One of the things
you have to remember is the listings presume that everybody who walks in
the door is disabled, irrespective of anything. If they have what's in
the listings they're disabled. So the question I would ask you is as you
read through all the various things are they correctly identifying
people who should and shouldn't be on the role \-- who should be on the
roles. Are they under-inclusive, but also are they over-inclusive in
some cases? We have a responsibility to do the right things in these
rules and to make sure. So I just wanted to point that out. It's a hard
thing to say, but it is something we have to think about.

I think I'm done. If there is time I can answer some questions, if not
\--

MS. : There's time.

MR. EIGEN: Questions? Yes, I tie my own bow ties.

(Laughter.)

MR. EIGEN: Well, okay.

MS. GELFAND: How familiar are you with the process that happens at DDS?

MR. EIGEN: The question is how familiar am about the process?

MS. GELFAND: Right. In terms of how HIV claims are adjudicated in
actuality according to regulations.

MR. EIGEN: I think I know where you're going. Could you pick that up?
Could everybody hear the question? Let me put a fine point on it. Are
you asking whether the DDSs correctly follow our rules?

MS. GELFAND: \-\-- ask that one, which \-\-- also be speaking about, but
I'm wondering \-- since we have so many people here I'm wondering. These
are the regulations. Do we know if they're being followed, and do you
all know if they are being followed?

MR. EIGEN: Here's \-- do you want me to answer it?

MS. : \-\--.

MS. GELFAND: How do you know if our rules are being followed?

MS. ROECKER: We have a quality assurance program and we have \-\--
review. About half of the favorable decisions that the DDSs do are \--
by statute are reviewed by federal reviewers, and that's \-\--. But we
also do a random sample of all cases that the DDSs adjudicate, and they
are reviewed by federal reviewers, and they are returned as errors if in
fact there's an indication the decision is not correct or if there's
something missing in the case that would be \-- could affect the
decision. So how do we know they're following our rules? We know it from
this ongoing sample. That gives us an indication. Do we know about each
and every case that they adjudicate? No. We don't because we don't look
at each and every case, but we have a sense from this random sampling.

MR. EIGEN: And the one thing I would add to that, too, is that \--
particularly for advocates who represent people at the hearing level \--
we only see part of the picture. As a matter of fact, DDS is in any \--
in the past year or so for example, allow \-- I would say 900,000 cases
for last year, something in that range at the initial level, and you
just never see those cases. So there are lots and lots of people who
come in and are allowed right away by the DDSs correctly following our
rules. But part of the problem is when you're dealing with a mountain of
cases, cases in the millions, it's just not going to work as
consistently as you wish it would, and so we know that there are \-- I
mean, we have OHA, Office of Hearings and Appeals, that deals with
hundreds of thousands of cases every year, and they allow a great
number, more than half as a matter of fact. So obviously there's
something not right. You know?

MS. ROECKER: And I would just add even though we have this ongoing
quality assurance review and we have \-\-- review that's not to say that
we're satisfied that it's working as well as it could. So we are looking
at all \-\--.

MS. PATTERSON: Do you have an specific data on the number of HIV cases
let's say that are reversed at the administrative law judge hearing? I
mean separated out from the other. I mean 55 percent or so are granted.
I know I

win probably 90 percent of my cases, and a lot are HIV cases. So I'm
wondering if there's any specific pull out of data on HIV or if it's
just aggregated with the others.

MS. ROECKER: I don't have that with me, and I know getting \-- sometimes
getting OHA data is not easy for my staff to get, but if you just give
me your card I'll talk to you afterwards and we'll see if we can get it
certainly.

MR. EIGEN: It's unlikely we'll be able to get good data because they
don't coding data about impairments at the OHA level.

MS. ROECKER: Breaking it out even for all the body system \-\--
sometimes is really difficult. You know, just because of the way the
cases are \-- you know, that would be management information data that
we wouldn't necessarily have.

MS. : \-\-- people raise their hands.

MS. ROECKER: Any other questions?

MR. : \-\-- evaluations and timeliness.

MS. ROECKER: Timeliness? We also track what we call the process \-\--
which would be the elapsed time. We track processing time. So we do that
and we generate data on a monthly basis as far as how DDSs are doing. We
also know how field offices are doing, that front NPC, the intake piece.
We know how hearing offices are doing. So we do track processing time
throughout the entire process.

MR. : \-\--?

MS. ROECKER: There is some, and one of the things we see is work loads
don't come in evenly either. Right now we have some states where the
increase in disability applications is up, you know, 10, 12, 15 percent.
Other states it's up about two or three percent over last year. So when
we get those uneven increases it means that at least in the short of
term some of the offices are not able to keep up and it wouldn't be as
timely in places where the increase \-\-- great.

MR. : How about the administrative \-\-- normal or \-\--?

MS. ROECKER: At the hearing level? That processing time now I believe is
standing about less than a year, yes, less than 12 months. We've seen a
nice steady decrease and we're of course looking for ever better
performance in that area. Again, part of it is work loads, and they
don't come in evenly at the hearing level either. Any other questions?

MS. CAPELLE: I actually have a question for Barry. Can you hear me? Is
it picking it up? The numbers that you mentioned, 70,500 on Title 2 that
are HIV, are those approvals per year?

MS. : That's total on the \-\--.

MS. CAPELLE: Total on the roles right now. Okay. Thank you.

MS. MOORE: Any other questions? Okay. We're going to move on. Thank you
very much, Sue and Barry. Okay. As we said earlier, Social Security is
gathering information from coast to coast on the perspectives. We're
writing the immune system listings. Another policy conference was held
in Philadelphia in December of 2003. Next we have two young ladies that
will bring us a summary of the major themes from the Philadelphia
conference. We have Donna Sue Bongardt and Nancy Schoenberg.

**[Summary of Major Themes from the Philadelphia
Conference]{.underline}**

**by Donna Sue Bongardt and Nancy Schoenberg**

MS. BONGARDT: Good morning. It's nice to see some familiar faces in the
crowd. My name is Donna Sue Bongardt and I have had the very good
fortune of working in the Office of Disability and Income Security
Programs for the past three years on a variety of assignments, but most
recently with Martin Gerry on some new disability changes that we're
implementing at the Administration and also on the listings. With me is
Nancy Schoenberg who is the newest member of our team who is on detail
to us from the Office of Hearings and Appeals where she is a supervisory
attorney.

About a month ago Martin and Pat Jonas, our Assistant Deputy
Commissioner, asked Nancy and I if we would be willing to do a recap on
the themes from our Philadelphia experience that we did have back in
December in an effort to share with you not only what we did and why we
did it, but also what we learned and how it benefits the agency. So I
hope that you will indulge us this morning as we act out rather than
present those findings. I would like to note that I am very grateful to
have come behind Barry who went through all the technical information
because anything we say up here we're not negating anything that Barry
has said. We're just building on it. So I'm not going to go into all
those details, so that was good, and I guess we'll get started.

MS. SCHOENBERG: Is this on? Everybody can hear me? How do I advance this
thing? I just click? Legal disclaimer: The story you are about to be
told is based on actual events. The characters are completely
fictitious. Any resemblance to persons living or dead is purely
coincidental. The views presented here are a composite of those
expressed in Philadelphia on December 15^th^, 2003. None of this
constitutes official guidance. Instead the Social Security
Administration hopes to gain more knowledge and understanding in San
Francisco and to build on what was heard and discussed in Philadelphia.

The scene: Two Social Security employees are talking at the end of the
day. One works in the Office of Disability and Income Security Programs.
The other is a total burnout from some other part of the agency.

MS. BONGARDT: It's going to take a while for Nancy to get changed.

(Pause.)

MS. SCHOENBERG: Yo, Donna Sue, come on.

MS. BONGARDT: Ah, gosh. Hi, Nancy. Boy, I completely lost track of time.
I've been so busy working on this Powerpoint presentation.

MS. SCHOENBERG: And you look like you could use a break. All work and no
play might make \-\-- Sue a boring girl.

MS. BONGARDT: Oh, I know, but I'm getting ready for this policy
conference in San Francisco. \-\-- asked me if I would be willing to do
a recap of the major themes from our Philadelphia conference that we had
back in December.

MS. SCHOENBERG: What do you do at these conferences and who comes to
them?

MS. BONGARDT: Well, we go out to discuss our latest advanced notice of
proposed rule making, and we invite everyone who commented on it in an
effort to hear what they have to say first hand. Most of the attendees
are either individuals who have the disorders who those who are really
knowledgeable about them. They're doctors, advocates, special interest
groups, and others who are out there assisting people applying for
disability benefits.

MS. SCHOENBERG: Well, how does that help us do the rule?

MS. BONGARDT: Oh, Nancy, these people have so much to teach us, things
that we might not be aware of if we didn't take the time to listen.

MS. SCHOENBERG: Like what?

MS. BONGARDT: Well, like how diseases affect women differently than men
and how the effects of multiple impairments are exponential rather than
linear.

MS. SCHOENBERG: Well, can you quickly break it down?

MS. BONGARDT: Okay. Say someone has an autoimmune disease like Lupus.

MS. SCHOENBERG: All right.

MS. BONGARDT: Okay. Well, did you know that when someone has Lupus or
any other autoimmune disease that they're more likely to develop another
autoimmune disease?

MS. SCHOENBERG: No. I didn't know that.

MS. BONGARDT: Right. It's actually very common. So when someone has two
autoimmune diseases the effects aren't exactly double. They're more like
triple or quadruple.

MS. SCHOENBERG: Does the same thing happen with people who have HIV?
Like they have the virus but they might also have hepatitis C? So either
one can make them feel bad, but the two together make them feel, well,
exponentially fatigued rather than linearly fatigued.

MS. BONGARDT: Exactly.

MS. SCHOENBERG: What else did you learn in Philadelphia?

MS. BONGARDT: Well, some of the most eye-opening presentations came from
doctors who actually treat HIV patients. They shared with us what a
rapidly changing field HIV is. So when you talk about looking for a
qualified doctor who can weigh in on severity you need someone who has
an active practice who is abreast of all the latest treatments in the
field and devotes a substantial percentage of their caseload to treating
HIV patients.

MS. SCHOENBERG: Well, that's just fine if you live in a big city. But
what if you don't live near a place with a lot of specialists? Like say
you're from the Midwest, like a state like Kansas, like a \-\-- town
like Lawrence. What do you do then?

MS. BONGARDT: Well, you're right, Nancy. Many people don't live near big
cities and they don't have access to specialized care, much less
state-of-the-art care.

MS. SCHOENBERG: So what is the state-of-the-art care for HIV these days?

MS. BONGARDT: I'm glad you asked. I've been studying this. HIV patients
are put in very strict regimens of dose-sensitive medications that
require 100 percent adherence. If they miss even one dose it can
significantly diminish the treatment's effectiveness. These medications
are very hard to tolerate and the side effects can often be as disabling
as the disease itself.

MS. SCHOENBERG: How awful. Makes me depressed just thinking about it. Do
people who have HIV and other immune disorders suffer from depression? I
mean, is that a common factor?

MS. BONGARDT: Yes, Nancy. Actually it is. Many of the people with immune
disorders do suffer from depression, whether it's a direct side effect
of the medication or as a direct result of the disease; and when someone
is depressed it affects their ability to adhere to their treatment,
which in term can affect or diminish the efficacy of the treatment.

MS. SCHOENBERG: Kind of a vicious cycle.

MS. BONGARDT: It can be.

MS. SCHOENBERG: But if the person's depression is controlled with
medication and they're compliant with the rest of their treatment
regimen won't their condition be stable?

MS. BONGARDT: That's not quite that simple, Nancy. These diseases are
chronic. They wax and wane. They have good days, they have bad days, and
when a person seems better it's not necessarily that the condition is
any better. It's often that it's just better managed, which can be
misinterpreted. The fact that illness is managed doesn't necessarily
mean that they can or should work. Working can trigger a flare-up or
interfere with treatment.

MS. SCHOENBERG: So what is the answer, Donna Sue?

MS. BONGARDT: I don't know that there is any one answer. Some people
want to work, but they need to pace themselves. Other people don't \--
they want to stop working, but they can't because they'll lose their
health insurance.

MS. SCHOENBERG: Is there any middle ground?

MS. BONGARDT: I suppose the ideal situation would be if they could find
employers who are willing to allow them to work flexible schedules at
alternative job sites, maybe do some work from home, and guarantee them
health insurance. But that's not the easiest combination to find.

MS. SCHOENBERG: Yeah, our rules are pretty rigid. If you don't work you
can't be disabled, and if you're disabled you can't get government \--
unless you're disabled you can't get government-sponsored health
insurance.

MS. BONGARDT: You're right. And once a person's health insurance lapses
they can become uninsurable because they have a serious pre-existing
condition.

MS. SCHOENBERG: Isn't there something SSA can do to help?

MS. BONGARDT: Well, I think we are trying to help, Nancy. We're thinking
broader than we have in the past. But we're bound by the statutory
definition of disability, which requires a person's illness to last at
least 12 months or be considered terminal.

MS. SCHOENBERG: Well, I don't have enough sick leave to cover 12 months,
and I sure don't have enough money saved to pay my bills if I didn't
have a paycheck coming in. I can't even imagine not having health
insurance. How do these people survive?

MS. BONGARDT: Well, Nancy, it's difficult and many are frustrated. The
good news is that we're trying to change what we can, to be responsive
and to listen to how we can make our rules better. The end result is the
people appreciate it. That's what they told us in Philadelphia.

MS. SCHOENBERG: Well, Donna Sue, this policy stuff sounds pretty cool.

MS. BONGARDT: It really is. It's about the changing needs of people with
disabilities and designing rules that are flexible enough to change if
those treatments do. It's dynamic.

MS. SCHOENBERG: I think I might like to be part of something like that.

MS. BONGARDT: Nancy, we could use every person that has the desire to
make a difference. How many people can go to work every day and feel
that their efforts affect millions?

MS. SCHOENBERG: Not very many, but I'd really like to be one of them.

MS. BONGARDT: Well, I'll let you know if we have any postings. In the
meantime we better get going. Tomorrow is going to be here before we
know it.

MS. SCHOENBERG: Yep. Don't forget your Powerpoint.

MS. BONGARDT: Oh, yeah. Thanks.

(Applause.)

MS. BONGARDT: \-\-- me 10 minutes to tie this bow tie this morning.

Ms. : Thank you very much.

MS. BONGARDT: No questions.

**[Session One Topic: NIV Listings]{.underline}**

MS. MOORE: Well, I think you can hear me. I can't operate this mic right
now. The next thing that we will do is we will go \-- over the next few
hours we'll hear from guest speakers, and we're very grateful to have
you all here today. You'll have the opportunity to ask questions after
each speaker. The first speaker that we will hear from is Paul
Volberding, MD, from HIV Medicine Association. He's coming up the back.

**Presentation by** **Paul Volberding, MD**

DR. VOLBERDING: Let me explain a little bit about my background, why I'm
here. In part because I represent the HIV Medicine Association. I'm the
President of that organization now, that one and the one that Dr.
Grossman represents, the American Academy of HIV Medicine, together work
to bring in essentially all HIV experts in the country. So we speak with
a sense of responsibility for the members that we serve. I'm also an
HIV-experienced clinician based here in San Francisco, and my other
reason to be interested in this discussion is that one of my textbooks
was cited by the Supreme Court in the original American Disabilities Act
that got HIV infection accepted as a disability. So I've been interested
in the topic and \--

MS. : Do you want your \-\--?

DR. VOLBERDING: Oh, good. Point it there or anywhere? So that's the
background. What I'm going to do is present some information. I'm going
to go through it quickly because I do hope we have a few minutes for
discussions. I have to leave to get back to the hospital, but Dr.
Grossman is at least as expert as I am in taking care of the patients
and can talk about \-- that's the other disadvantage of being here.
(Phone ringing.) I want to thank Andrea \-\-- who is in the audience and
Christine Levitsky who worked for the HIVMA that helped put the
materials together that you'll see.

So a lot of issues are raised in this debate. One is the fact that a lot
of people with HIV don't know they're infected or at some level know
they're infected but have chosen not to act on that. Often then \--.
(Phone ringing.) Tell you what? Let me take a one-second break and I'm
just going to turn it off. Whoever it is they can find me later.

The problem that that poses is that first of all there's a public health
issue because those people can and in some cases unfortunately are still
transmitting the virus to others. But the other problem it poses is that
in many cases they are the ones who come to our clinics now with very
advanced disease, and so all of the advances that we made in terms of
keeping people healthier with medications are in some cases
unfortunately lost because people present very late. We see here that 39
percent of people even in the era of effective antiretroviral therapy
progressed \-\-- AIDS within a year, and a lot of that is driven by
people who present with untreated advanced disease.

The other thing that we'll talk about in brief is an issue that concerns
all of us immensely, which is that the drugs that we use which on the
one hand have converted this to a chronic disease have a great burden of
toxicities, and given that patients we hope are going to stay on therapy
for 30 or 40 years as this becomes more of a truly chronic disease we
know that the toxicities are not just in the short run, but are
accumulating. That's especially true with some of the metabolic
problems, and as this slide says the heart disease that we are
increasingly realizing is clearly accelerated both by HIV infection
perhaps because of the inflammatory state that exists with the chronic
infection and perhaps because of the elevated lipids that come about
because of medications.

Other problems that we see include mental impairments. The severe
dementia is much less common these days. I'm sure you've seen this in
cases that you've looked at. But the more subtle but still debilitating
mental impairment is there, and there was a presentation just last week
at the retrovirus conference showing that even people on active
antiretroviral therapy there is still progression of brain damage, and
other things are equally important.

This is perhaps a little overstated in terms of the deadly side effects.
These are side effects that are \-- we don't like, but they're certainly
better than the alternative of untreated HIV infection. But nevertheless
many patients are not progressing and actually dying either as a result
of the side effects of the drugs, cumulative again side effects of the
drugs, or because of other underlining coincident diseases that are
allowed to express themselves and in some cases express themselves more
rapidly in the setting of HIV infection. If you look at this then, the
crescent on this, the yellow crescent represents people who die of AIDS
who die from other than AIDS causes, and we would expect that as our
antiretroviral therapy keeps people from dying of AIDS that that
fraction will actually continue to increase. It will be very important
then to see what patients with AIDS are dying from. If it's just the
expected mortality of that age group we wouldn't attribute it to HIV or
its therapy, but obviously if we see unusual things such as liver
disease causing accelerated death we would expect that that's caused by
this problem.

HIV itself causes problems, but the therapy as I mentioned also causes
many of the problems that our patients are seeing, and sometimes it's
difficult for us to tell which is which, whether it's direct affects of
HIV or from the therapy. In the case of diabetes there's no doubt that
there is a genetic \-\-- to diabetes that patients that have a tendency
to diabetes are the ones most a risk, but when we see that we see the
acceleration of that development of diabetes in the setting of HIV
therapy. Especially some of the protease inhibitors which have been most
associated with glucose abnormalities. Indinavir is the best example,
but others as well, and you see here the prevalence of diabetes
increasing in HIV infection.

In my earlier life before I focused exclusively on HIV I was an
oncologist, and it's been of interest to me to watch some of the cancers
in HIV essentially disappear. We essentially no longer see central
nervous system lymphomas except again in the untreated patients coming
in from the street. But other cancers are either stable in their
incidents \-- non-Hodgkins lymphomas in the periphery are relatively
stable.

Other cancers we think are probably increasing still in the setting of
HIV, and as you see here there's a wide range of cancers where the
yellow bar on this graph has increased incidence compared to
non-HIV-infected people. In this case from a VA registry put together by
McGinnis. So cancers are being seen. One of the cancers that we expect
to see more is liver cancer because of the coincident HBV and HCV
infection. Again, as patients live longer with their HIV infection. Anal
cancers which are already very much more common in gay men, we see an
acceleration of the dysplasia in people that are co-infected with HIV.
So again we know that there are many conditions that are going to
continue to be seen.

This shows again that while some conditions are less common in the set
of effective HIV therapy, tuberculosis fortunately in the past few years
has decreased in the United States in the setting of HIV. PCP and \-\--
other opportunistic infections that used to be so central to the
management of HIV are much less common. Others are unchanged.
Community-acquired pneumonia for example, dementia although probably
less severe dementia, and others as I mentioned are increasing.

At the top of the list is liver disease that is highlighted in the next
couple of slides. Liver disease is now in many clinics the leading cause
of death in HIV infection and it's not considered an AIDS-defining
condition, but in many cases it's because of an acceleration of
hepatitis C virus because of the immune deficiency of HIV. At least 25
percent of people with HIV infection are co-infected with hep C. That
goes up to nearly 100 percent in some populations. Injection drug users
in Baltimore have nearly 100 percent co-infection with hep C. Most of
those people in the United States are co-infected with the worst form of
hep C, variant one, which is the least responsive to therapy. I was a
co-chair of an ACTG trial that was just presented last week again at the
retrovirus conference, and the outcome with aggressive management of hep
C in the setting of HIV in genotype one was only about 15 percent
sustained viralogic response. So a very difficult condition causing many
people to have accelerating liver disease.

Psychiatric disorders are common. Substance use is also very common in
the setting of HIV, and in the panel that I'm also on now at the
Institute of Medicine where we're looking at public financing of HIV
care we're making \-- the report should be out soon. We make a real case
for the inclusion of substance use and mental health treatment as part
of the spectrum of HIV care. Because they are so common and because the
problems posed in the use of antiretroviral therapies which require
close adherence in the setting of somebody who has a perhaps untreated
or partially treated mental illness, ongoing substance use, is obviously
very daunting.

I mentioned most of this already, that with co-infection with hep C and
HIV we see higher levels of hepatitis C, more rapid progression to
liver-related disease including cirrhosis, and we would expect again as
people live longer with their HIV infection that have had a cellular
cancer there is no reason to think it won't become a more common
problem. We haven't talked as much about hepatitis B co-infection.
That's also a common problem, especially in the gay community, and where
we not have more effective treatment again for hep B and for HIV again
we can I think expect to see more cancers and liver failures as a
result. Patients with co-infection do worse overall in ways that we
don't fully understand, but when we do batteries of health status
patients with hep C HIV co-infection perform less well. So in terms of
chronic problems and chronic disabilities for many of our patients this
is a real issue.

Now along with \-- if I were going to kind of focus on a couple things
toxicity is a treatment. Co-infections would be one issue. The other
huge issue is drug resistance. Obviously in the few minutes that we have
I don't have time to go into it in any detail, but drug resistance is a
huge problem for our patients. In various surveys of chronic populations
in the country upwards of 50 percent of people have some degree of drug
resistance to antiretroviral drugs, often nearly complete resistance
across the spectrum of drugs that we have. Not only that, but there's
more and more believable data that shows that many of the people that
are getting infected are getting infected with drug-resistant virus and
that once infected with the drug-resistant virus that that virus goes
away very slowly in the infected person. So a big problem for us, and
again summarized on this now somewhat older slide, rates of drug
resistance to various classes in various parts of the country range up
to 25 percent of the reinfected people having at least some evidence of
acquired drug-resistant virus.

What the links between funding and treatment? You know this I'm sure
better than any of us, but people with HIV are on a hodgepodge of public
and private financing that represents the healthcare system, perhaps
unfortunately. But patients have Medicaid or Medical in California,
Medicare plays a major role, and at this point more than 50,000 people
if I can go back \-- I can't \-- are on that \--

MR. : Just use the mouse \-\--.

DR. VOLBERDING. And you can tell I barely \-\-- anything \-\-- my spare
time. So in terms of the comments, we have some specific suggestions. I
think these are in materials that you've been giving if I'm not
mistaken. Again the points that we're making are that specific patients
are still diagnosed late in the course of disease. There are conditions
that we think should be appropriately added to the listings. Provisions
for providers with expertise or experienced physicians because I'll show
you a little bit of data. There's not a great data out there, but
there's some data and I think it's becoming obvious given the
complexities of the drugs that we use issues of drug interactions, drug
resistance, that if you have HIV you best be taken care of by somebody
who knows what he or she is doing. So we think that as the financing and
disability issues are addressed that these important issues to put on
the table.

Patients with HIV often get better, and the physician is often in a
tough spot as I know you know. A patient who otherwise would have
progressed inexorably to die of AIDS now might look and feel relatively
well and be back at work. But for many of our patients if the patient is
not considered disabled they no longer have evidence to the medication
support that keeps they healthy. So the dilemma that we have is that we
need some way to have the physician not have to feel that we are in a
sense lying about the physical capabilities of our patients and yet not
do things that result in the withdrawal of medicines that have changed
the face of this disease. So it's a tough job that I think we all know
we all have in the disability experience.

The last point, I think it's the last slide, is that physicians that
know what they're doing again do a better job. This is data that shows
that with respect to medication adherence the outcome is much better
with an experienced physician, which I think is probably no surprise.
I've raced through a number of things. Again, I'm happy to answer some
questions, but I'm competent that in terms of anything that I can say
medically that Dr. Grossman can do it as well. Yes?

MS. : \-\--.

DR. VOLBERDING: Yes. I'll just point because I don't know your names.

MR. : If you could just expand on the discussion of diabetes, whether
the increased prevalence is type one or type two, treatment, and you
mentioned protease inhibitors I think and the impact on potentially
causing \-\-- those types of \-\--.

DR. VOLBERDING: Yes. Protease inhibitors impair

\-- cause insulin resistance. So it ends up being \-- in some of the
patients it ends up being more of a type one diabetes. \-\-- diabetes is
less common than abnormal glucose tolerance so far, but I think that's
certainly something that's worth watching. Again, the whole issue of
population that's living with the disease longer and being able to
express their genetic lode for \-\-- is another issue. So that's going
to take obviously large databases to sort out. Same issue we face with
cardiovascular disease. We see people getting MIs, but if they're
55-year-old men who have a family history of cardiac disease where we
can't be too sure that's it's an HIV-related problem, although I think
there is strong data that suggests that to some degree it is. Other \--?
Yes?

MR. : We're actively exploring right now the possibility of doing some
demonstrations that would focus on people who are HIV-positive that
would involve providing ongoing medical access to health insurance,
medical care, which might be done decoupled from cash benefits and work.

Right now there really are two federal programs. You mentioned Medicaid
and Medicare. One of the things that we've been looking at is the
question whether either or both of those in combination really provide
the adequate type of coverage that would be needed or whether it would
be better to try to design some kind of a package which we would \-\--
in the private health insurance market. So I wondered if you, one, had
some comments on the accuracy of coverage and then also if you could
give us an idea of who might be particularly familiar with that.

DR. VOLBERDING: So a lot of these issues will be addressed in some
detail in the \-\-- report, again which is coming out shortly where we
looked at all these issues. Without giving anything away, I think it's
fair to say that we've addressed some of the concerns you've raised in
the report.

So Medical, Medicaid, and Medicare do great, but they certainly don't do
enough, and the problem that we see is enormous state-to-state variation
in the benefits, which drugs they have access, do they have access the
full year or not, do the number of drugs make the physician have to
choose between antiretrovirals and other classes of drugs. So all these
have not been resolved in the current system of financing. So if more
could be done either in the private or public insurance to smooth this
out across the country we would really love it. Obviously there are huge
political issues that we face in changing the current system. The other
problem we have is \-\-- and \-\-- funding for the drugs, which you get
in various \-\--.

MR. : So it's mostly an issue around \-\-- drug coverage. Are there
other issues \-\--?

DR. VOLBERDING: At this point the largest share of the cost of AIDS
care, just the direct medical costs, is the drugs. As this is shifted to
an outpatient, more chronic disease hospitalization and ancillary
services are less of an issue. But again as I said, substance use,
mental health and other non-AIDS-related conditions like hep C are huge
issues that have to be dealt with, too, and my concern is that some of
the programs are focused on kind of the old definitions of AIDS and
focus just on antiretroviral drugs, not appreciating the complexity of
what we're seeing.

DR. GROSSMAN: Can I just make a comment? I mean, I think that the issues
that Paul has pointed to of variations state to state are crucial, but
especially when you look at a state like California that's had like the
best benefits next to New York and now seems to be cutting back in great
measure. I think it's too variable. I think if you're going to put a
system like this in place you really need to

\-- if it's a demonstration project you need to demonstrate your own
medical coverage, because it's just so widely variable and we started to
see people dying while they're on waiting lists in places like West
Virginia. Maybe you heard that in Philadelphia as well. But in the ADAP
it's equally as variable and \--

MR. : And vulnerable.

DR. GROSSMAN: And vulnerable, right, and medical coverage, what services
are covered state to state. It's not just drugs, because, you know, what
kind of clinical services are covered state to state is widely variable
as well.

DR. VOLBERDING: Actually I think it's probably time to \--.

MS. : You got time.

DR. VOLBERDING: All right. Well, I didn't see anymore hands, so I \-- I
was giving myself a graceful way to leave. Yes, go ahead.

MS. GELFAND: I'm wondering if you could comment on these concurrent
conditions such as diabetes, hep C, and how they make \-- contribute to
fatigue for people that are also living with HIV, et cetera, and how \--
it's seems like with DDS and with the hearing office and with medical
experts there's not a great understanding of fatigue as also a part of
not just HIV and/or medication, but of these concurrent conditions.

DR. VOLBERDING: Yes, sure.

MS. GELFAND: \-\-- have AIDs as well as hep C, et cetera.

DR. VOLBERDING: As I passed through in that one slide, I think you can
get at some of this with quality of life measurements which have shown
just what you're saying, that there are more of these
difficult-to-measure \-- especially for a clinician. How do I if you say
you're tired \-- I mean, I don't know how to measure that. If you say
you have peripheral neuropathy, pain \-- which is another thing I didn't
mention, but it's a very common problem, and it's still very common in
our patient population. I can't measure that, but I know that patients
are impaired. You know, I don't know anyone who would willingly become
infected with HIV. It's still a serious illness, and I think the issues
that you raise are important aspects of it.

DR. GROSSMAN: I'm going to go into a lot of detail on that and quality
of life.

DR. VOLBERDING: Okay. Thank you.

(Applause.)

MS. MOORE: Okay. Our next guest speaker is Hayley Gorenberg from Lambda
Legal Defense and Education Fund.

**Presentation by Hayley Gorenberg**

MS. GORENBERG: \-\-- rescuing the clicker. I want the techno gadget.

DR. GROSSMAN: See, this is a public-private partnership, because I
supplied all these gadgets.

MS. GORENBERG: We're all in training. Okay. Always a tough call coming
after the doctors. I'm going to try not to impersonate a doctor, yet to
acknowledge the medical information that informs the practice, and to do
that as a lawyer and somebody who has worked with a lot of HIV
disability cases.

Here we are. Okay. He'll teach me later. All right. The epidemic in
2004, where are we here more than 10 years after the listings were last
examined by SSA? We see clearly that for some, perhaps many of the
claimants, HIV no longer means a quick death. That's a good thing, but
it's complicated, because we've moved entirely through what I would call
the heyday of \-\-- antiretroviral treatment that blasted on the scene
in the mid '90s. When I say we've moved through the heyday I mean that
because we now have encountered the advent of drug-resistant virus which
has severely complicated the picture of treatment, as the doctors will
say in much more detail than I will, so that today's experience shows
the possibility of extended lives. Again, a good thing, but a
complicated one because severe symptoms are still \-\-- experienced as
are debilitating side effects from the ongoing impact of the drugs that
actually are extending life for many people, and along with that comes
chronic health consequences that Dr. Volberding acknowledged, that Dr.
Grossman will talk about in detail, and that we see in our practice
working with people with HIV who are also claimants with the Social
Security Administration whose chronic health consequences increase \--
include but aren't limited to lymphomas, lipid disorders, and then
there's also attendant organ damage, very often of the liver. It can
also be on the kidneys from \-- it could become co-infection. It could
certainly be medication, ongoing \--.

At Lambda Legal where I work as AIDS Project Director we have worked for
about 30 days, a little more actually, on all aspects of legal issues of
concern to the lesbian, gay, bisexual, and transgendered community in
litigation and in our policy work. We brought very early an AIDS
discrimination lawsuit and in fact incorporated HIV advocacy in our
mission in the early '80s and have continued to work strongly because
\-- well, originally at least looking at the mission because of the
impact on the LGBT community. We have nationwide offices. I'm from our
headquarters office in New York City. We have offices as well in
Atlanta, in Dallas, Chicago, and Los Angeles, and we run healthfests
that reach regionally so that we take calls from all over the nation
from people who are seeking legal assistance in a variety of issues,
LGBT connected and also HIV discrimination, HIV advocacy, access to
healthcare, ongoing needs that affect access to healthcare of people who
are continuing to experience HIV often for decades.

Our current docket is very active in some areas that I think related to
what is complicating the experience of HIV that the Social Security
Administration is looking at, because when I look at our current docket
I see for instance that we have a fair amount of activity in transplant
rights for people with HIV. This issue didn't come up in the early
years, but as people are living longer and we begin to see an impact on
the liver, impact on kidneys, you know, transplants rights become
significant. Access to benefits continues to be an ongoing challenge,
and I include particularly ADAP here because one of things that I know
we're looking at is, you know, how \-- what is the intersection of the
benefits provided through the Social Security Administration and access
to other kinds of benefits including ADAP. We see a severe strain on the
ADAP system, and I'll talk about some of the specifics there, but \--
you know, I know that that's something, that that system is one that
Social Security looks to to see what's the balance here, what's the
interplay of access to benefits; and ADAP's pressures right now,
inadequate funding and the limitations attendant to that, is pretty
important.

We see nursing home discrimination cases. We see that on the increase.
We actually are currently handling a case where a person with HIV who
needed nursing assistance for other reasons \-- he had obviously ongoing
HIV treatment to deal with, but also had suffered a stroke and aneurism
and was rejected sequentially by half a dozen nursing homes after they
learned of his HIV status.

And in the mix of our national work obviously high on our agenda was to
respond to Social Security when we say the notice that HIV listings
would be looked at again. We wanted to be responsive to that, wanted to
work with others to come up with a full set of recommendations that we
could incorporate our knowledge. I would add that in addition to doing
the nationwide impact and advocacy litigation support and the actual
litigation that LAMBDA does that many of us including myself in the AIDS
project have legal services backgrounds and have worked for many years
before we came to do this national impact work doing direct
representation, having people come to our office and having very large
dockets of people who are, you know, individuals, you know, seeking
benefits, seeking services. So we come from that individual experience
as well. So it's not just \-\-- type of thing.

The Social Security Administration collaboration that we're working on,
well, when we did see Social Security's notice one of the things that we
did was to draw together a nationwide group to just reach out really in
a very open way and to ask for advocates around the country who had any
interest in the issue to join with us. And we reached beyond just the
legal experts, but also started incorporating medical experts. And it
was a really very open process to say who is interesting, who wants to
talk about what should happen here, and those folks collaborated with us
in conference calls and research and in drafting our comments which are
available at the Social Security website as well as on our website at
LAMBDA. Approximately 40 signatories again from the legal and the
medical field joined together, ultimately signed to comments to submit
them, and that clearly represents thousands of clients' experiences.

And the conclusion across the board was that the listings did have
ongoing validity despite a greatly changed environment, and I must say
that I was personally struck by that. Because like I said, we went into
this in a very open way to say, you know, anybody with interest who are
interested in working with you let's provide the infrastructure, the
conference calls, so that everybody can participate, and it was striking
the uniformity of vision and analysis that we say that people really
were seeing that there might be \-- you know, some provisions and
modifications to be made, but that there was a sound of validity in what
had been drafted more than 10 years ago, and maybe that goes to Mr.
Eigen's point. You know, maybe there was a very good job done there
while folks were looking ahead to say how do we draft something that
will stand the test of time, and we see that it stood pretty well.
Although in our almost 30 pages of comments, which obviously, you know,
I'm not going to go into in detail, we did make suggestions for even
greater accuracy.

Some of those suggestions include reflecting current diagnostic
techniques. So also the listings themselves, you know, we were looking
at them and we were saying, well, yes, you know, those have this ongoing
validity that I'm talking about, but some of those listings were not
reflecting the current diagnostic techniques. So the method of
diagnosing and sort of rendering the listing, establishing the listing,
was out of step, even though the listing itself was valid.

There were various I call them \-\-- of experiences of the symptoms that
people with HIV endure, and some of comments add a little more
specificity and some adjustments to the symptoms that, you know, 11
years after the listings were last revised \-\-- people are
experiencing. Again, a deep recognition of side effects and what it
really means to live with the side effects and the impact of medications
ongoing for it could be decades seems just central to what revisions
could be made to make the listings more accurate.

A theme that surfaced again and again was the issue of giving a proper
regard to various sources of proof. So clearly the medical doctors that
we have with us and who are submitting their records and reports and all
of these things are very important to determinations, but that also we
thought that there are other sources that are central to rounding out
the picture of what somebody with HIV is experiencing, particularly when
they have multiple impairments, maybe, you know, double or triple
diagnoses. That there are other people around them that could be, you
know \-- oops. I skipped ahead. I'm not going to take it back. It's
going to send me back there. Okay. Oh, thank you. Just getting used to
driving this one.

So there are other folks who are around. The doctors in the practice
that are around the patient who are significant to the full picture of
understanding HIV as it's experienced by an individual claimant, and
those could include clinical social workers, and they could include
nurse practitioners and they could include, you know, family and friends
who are assisting with the daily life of somebody living with HIV. And
when we presented this and I talked in Philadelphia there was somebody
who spoke, you know, during the question and answer period and pointed
out that some of these points are acknowledged in various sections of
Social Security's materials, and I think that that's true. So I'm not
contesting that, but I think that we might consider moving some of those
acknowledgments to more visible places so that in a sort of training way
and as the claims are evaluated it's more likely that those useful
points of guidance will actually be picked up.

So we had some discussion of this in Philadelphia, and I don't back away
from this point because I still think that we experience persistently a
failure to accord the proper respect to all these various sources of
proof that are important in understanding the cases. So I come to the
conclusion that part of the problem is these things aren't in the right
places and we need to move them to places that are more obvious in a
sort of training and ongoing sense, and so when we look at the preface
and the introductions and that type of thing \-\--.

The experience of opportunistic infections, the opportunistic infections
are obviously a core of the listings, and so I think Social Security is
clearly asking us the question of, you know, what again the ongoing
\-\-- opportunistic infections is a core of the listings; and what we
see, and it's useful I guess for me to follow on the heels of Dr.
Volberding, is that if you have just such a significant portion of the
population of HIV that doesn't realize that the infected \-- that you
have people go down quite a road of infection before they come into any
kind of care or treatment, and they may come in in a health crisis.
They're coming in with a diagnosis of opportunistic infection, and that
because of where they're coming in in the stage of their HIV it really
just \-- you know, anybody who is coming in with these opportunistic
infections, coming in with an indicator of compromised health, an
indicator of health instability, and the fact that they have gone down
the road to the point where they've developed an opportunistic
infection, whether they were in treatment or not in treatment prior to
that, means they are at a point of instability in their health that is
\-\-- with Social Security's determination that somebody is disabled. So
those opportunistic infections are still real indicators.

I would also add to that from the point of view somebody who has, you
know, worked on developed cases and figuring out where the problem
points are in the cases that when somebody comes into care as a result
of the opportunistic infection and they haven't been in care before that
there's going to be also a certain lack of medical records and
documentation that proceeds that diagnosis. So that if the opportunistic
infection was not present as a listing then, disabled as they are, they
would lack the other documentation that would round out that picture. So
without having the OIs in the mix of the listings you can see a
significant number of people who would be coming in that would be
disabled, but without that indicator as part of the listings then
there'd be a real problem with recognizing actual disability.

As so again, you know, coming back to our theme, treatment makes for a
long life, and that's a good thing, but the health instability may
continue for quite a significant period of time and, you know, certainly
beyond the durational requirement for Social Security's findings of
disability. Click. Oh, okay.

And here I'll go a bit local. The Stops AIDS Project, really one of the
country's premier prevention projects, premier HIV prevention projects
here locally in San Francisco has developed models for years and years
to work prevention. One of their most recent campaigns came from their
own clients with HIVs feeling that there wasn't enough activity in the
community to prevent new infections and that perhaps part of that,
though not all of it, was an erroneous perception that living with HIV
was no longer such a problem since the medications were available. So
this is people with HIV saying, you know, what can we do to send into
the community the message that, you know, what I'm experiencing here is
not something you want, not something you can live with easily. This is
a major impact on your life, and it's not being adequately, you know,
recognized. How can we send the message from our lived experience so
that other folks will get more interested in provision?

So this is the Stop AIDS Project, a few slides from their campaign
called \"HIV Is No Picnic,\" and again developed by people with HIV
wanting to talk about their experiences I think. Some of the text, and a
lot of it came through again and again, was \"Don't get me wrong. I'm
really glad to be alive, but HIV is no picnic.\" That was the theme, and
these are the posters that again I said the people with HIV developed.
So talking about different symptoms and experiences both with HIV and
with the side effects of their medication and just talking about what
their experiencing and why living with HIV is so difficult. You know,
there's a little text there that I'm not going to read, but just in
talking about the severity of diarrhea is such a common side effect, the
severity of side effects from medication such as, you know, lipid \-\--
distribution \-\--, night sweats, what it's like to experience those,
what effect to have them interfere with sleeping, interfere \-- you
know, create fatigue, contribute to a just an awful experience of
disease.

I think I went through those \-- or maybe I'm not. Here, help. Thank
you. Okay. HIV is a civil rights issue. I did want to hit that in the
course of the presentation because it's clear from a public health point
of view and I've heard several public health experts speak of it, that
the way HIV moves through a population is very linked to deprivation of
civil rights, and then when people have their rights abridged, when
they're marginalized, when they have very little control over their
lives, sexual or otherwise, that that will contribute to HIV infection.
So that you see as HIV has moved through the population over the years
that it's more and more tied to civil rights issues, to abridgement of
civil rights in other ways; and what that means and the meaning of my
first line there under fighting discrimination is that for people
working both in service organizations for people with HIV and within the
Social Security Administration seeing these cases come to you, you are
fighting discrimination because you're getting cases that are coming to
you layered with all the different kinds of abuses that people have
experienced in society. So you're getting cases that are multilayered
not only with, you know, double or triple diagnoses, but also with all
kinds of other socio-economic problems that contribute to people not
being able to protect themselves very well and ending up HIV positive.
So every type of marginalization contributes to a vulnerability to
infection, and that's why these cases have gotten more and more
complicated.

So what are some of the factors we might be talking about? Clearly
poverty, access to health care, access to education and those kinds of
resources, domestic violence is going to impact the way \-\-- protect
themselves to be safe, homelessness. So many different aspects of that.
I mean, homelessness that can interfere with peoples ability to actually
protect themselves because they don't have shelter, interfere with their
ability to participate in their own healthcare, to be stable in a place
where they can get ongoing healthcare to be able to protect their
medications and be able to take their medications.

And mental illness we hit on already, and I think it's extremely
important. \-\-- is a theme again and again that mental illness both
predating and postdating HIV infection is a big impediment for our
clients for claimants with the Social Security Administration. It's
going to interfere with their access to treatment. It's going to
interfere with their ongoing treatment ability to comply with treatment,
otherwise impact their health; and it is in the form of depression and
anxiety quite commonly, but I've got to say I'm hearing more and more
medical practitioners talking about the great incident of bipolar
disorder with their clients with HIV, schizophrenia, really just every
type of mental illness.

And again the effects of the deprivation, you know, \-\-- vulnerability
to infection, challenges to access. I think we can go through this
pretty quickly. Continuity of treatment, adherence, and I'd add to it
difficulty with actually navigating your processes at the Social
Security Administration to actually managing to get their applications
together, managing to find it through layers of appeals, you know,
managing to go actually in person before a judge. I mean, you know, all
of these different socio-economic factors going to impact their ability
to actually make through the system, and that's another reason it's
going to be all the more important to get the listings right so that
people who shouldn't be going through those processes aren't going
through those processes because they need a listing that's legitimate
and should be recognized.

So that lead me to the effects of unnecessary appeals. So what happens
when we don't get this right either because the listings aren't right or
because some of your rules and guidances aren't followed at those \--
you know, in the trenches where these cases are coming in. What happens?
Well, these cases have to work their way up to the point where maybe now
because the organization finally gets the client, this could be a couple
of years down the road, and handles a hearing.

Well, the claimant ultimately receives the benefits in most cases. So,
you know, the case filing gets to a level where the information is heard
if they have the proper advocacy. You know, if this case has gone
through unnecessary appeals which means that it is a justifiable case
and they finally get the help they need they will ultimately receive the
benefits. But what's happened in the meantime? Click.

The stress of actually participating in that process has aggravated the
symptoms and a lack of prompt access to the benefits has damaged their
health, and that means that their treatment is going to be more
expensive; and I didn't put lots of stats in this presentation, but I
think many people in this room have seen the statistics, and you're
talking about treatment over the course of a lifetime when HIV is much
less controlled and treatment wasn't accessible earlier. Treatment that
is just, you know, multiple times the costs that it would have been if
the HIV could have been controlled with earlier access and stability in
the person's life, and the stability is facilitated by the benefits from
Social Security. So that's what, you know, I really want to say, is that
the claimant will be further impaired by unnecessary appeals if we don't
get this right in stabilizing their health and that that's going to
severely impair any potential that they might have to return to work
down the line and to be productive \-- which we hope that many people
would have the opportunity to be, but that's not possible for many. It's
going to be less possible if they don't have the proper support and
benefits, and clearly a piece of the picture that makes this so
difficult to deal with and maybe makes HIV more specialized in certain
ways than other impairments is this \-\-- episodic expression for many
people and episodic experience of the clients so that people have these
good and bad days and, you know, I think some of the \-- are you going
to try to draw out what a pattern could be, and there are so many
patterns for different people that, you know, maybe Monday the client
could manage a schedule, and maybe Tuesday the client could do that as
well, but Wednesday they'd have this overwhelming fatigue and actually
couldn't get out of bed. Just, you know, couldn't even control their
sleeping to the point where \-\-- hours and hours in bed, and the next
day might need to be near a bathroom. Just really, you know, not more
than \-\-- a bathroom because of gastrointestinal distress from
medications that are actually allowing them to live. Well, you know, you
look at them on a Monday or Tuesday and maybe things could be okay. You
know, Dr. Grossman or other doctors \-\-- than I can, but if this is the
kind of Wednesday or Thursday someone is typically experiencing then
they're not going to be working a job, that we know, and to hit them and
assess them on a Monday because it's not an accurate picture of what
they experience or what they can really do.

We've talked a bit about the importance of using the expertise of these
organizations with so many capable doctors like the HIVMA or the
American Academy of HIV Medicine, and I want to not be naive to suggest
that I think that the Social Security Administration is going to be able
to afford to import all these doctors on all of the cases when you run
through the tens of thousands of cases that you handle. However, you
know, I must say that the significance of denials in the cases is so
powerful that it seems important that there must be some way to involve
the HIV physicians, people with that expertise, before the denials
happen. So I ask the question, is there a way to incorporate that if
you're not going to say that they are present for all of the cases, and
maybe they don't need to be as present for the cases that are being
granted, but before these denials happen. Because it is a specialized
and complex area of medicine can there be a way to involve this
expertise that will address co-infections and, you know, have a special
knowledge about that that will address the incidents of multiple
diagnoses and that sort of synergistic effect of multiple diagnoses
because the whole is greater than the sum of the parts. We need the
expertise to understand that looking at the nuts and bolts of some of
these cases, what happens with issues of proof and the problems that
we've seen as we've experienced the cases certainly since the last
revision of the listings. The challenge of proving combined impairments,
a lot of these cases that are getting through that shouldn't have been
denied but are denied and come for instance at the ALJ level are
combined impairments where the proof is complicated.

\-\-- paragraph N can't be ignored, and we've made suggestions in our
comments for ways to treat paragraph N to make it more effective, but
many of these cases that are called the unwarranted appeals, the appeals
that shouldn't have had to happen, are paragraph N cases. So I think
again one of the challenges would be how to revise paragraph N and the
guidance that goes into Social Security Administration's other documents
to have paragraph N well understood by everybody. So this is cases
again, you know, recognizing that especially in the managed care
scenario many doctors have less time with their patients, looking at the
non-MD sources as supplements to the medical information that Social
Security is getting, making sure they're accorded their due.

Another proof issue that I think we see is a pretty significant
impediment to have cases handled the way they should is that the side
effects are under-documented and I think there are a couple of different
ways in which they're under-documented. I think that they're
under-documented and under-recorded when they are expected, and so it is
expected that there would be satisfactory medication when there are
common or ongoing side effects and the patient is going to come in with
them again, and again and again, because they are unavoidable. Because
the patient is taking the regimen of medication perhaps that he or she
can manage to tolerate and their \-\-- responding to it, but they still
have to look at these side effects. They're not going to go off this
medication because they are managing to get through the day and they are
perhaps more responsive on this medication than on others. They are
going to stick with it if they can, but they have expected common or
ongoing and unavoidable side effects, and those just don't \-\--. They
don't get recorded in the way that we like or as consistently or as
powerfully explained as we would like. So are there ways to look to the
\-\-- other sources to fully understand the impact? Are the ways to
revise the forms perhaps that the Social Security Administration uses,
submits to doctors, that type of thing, to get these side effects more
consistently recorded because they round out the proper picture of
what's going on with the client?

Return to work is something that is, you know, an important \-\-- to the
questions Social Security is asking, whether the challenges of return to
work for folks who are on benefits who need to be on benefits, leaving
and returning smoothly, going in and out of the work force. Clearly a
large impediment. Bureaucratically it's understandable \-\-- remains a
major impediment. Notice of problems so that people understand what's
happening with their payments and with their eligibility and payment
problems. People being underpaid, overpaid, or having delayed payments
are going to significantly impair the ability to attempt work I would
say. And along with those interruptions are the bureaucratic
difficulties with keeping track of people's eligibility and accurately
recording and processing their eligibility is the access to services
that were interrupted because that's connected to their eligibility, and
that is a significant problem. It would be a significant problem for
anybody, but an especially significant problem for people with HIV
because it's a continuity of care required to avoid resistant virus.
When we look at what the safety net might be and what might happen if
they're not covered from Social Security benefits then we see that other
coverage is not generally available as expressed in the current ADAP
crisis where we have states that are rationing care, we have states with
wait lists, and as Dr. Grossman mentioned we have reports of folks who
die on wait lists and that problem seems to be increasing, and we have
cutoffs that are threatened.

\-\-- did significant work in Texas which was suggesting at one point
this year to not only limit its list but to actually cut off people who
had already gone onto benefits. Huge problem obviously if you understand
resistance. I mean, a problem, you know, obviously for every individual,
a tragedy. But if you understand drug resistance and that people had
achieved access to their medication and now would have it cut off not
because of a medical reason but because of a \-- you know, an ADAP
funding crisis, and we see some of the same things being discussed
actually in California. You realize this is a rolling problem and that
ADAP can be looked at to be the safety net for the Social Security
Administration system with a link to medical benefits.

Again like I said, I mean I don't want to discount to somebody who is
working primarily in the area of HIV the significance of a cut off of
benefits or of not getting services for people with other problems and
other impairments, so I don't mean to do that at all. However, when
you're dealing with a virus that can mutate very quickly and you can
create resistance to entire classes of drugs, I think that going beyond
the individual suffering that you have when people aren't properly in
the benefits programs to which they should have access you have a public
health threat with HIV that's very different from that that you have
with other conditions. Because the risk of interrupted treatment not
only diminish the individual health, but lead to this, you know,
mutation and resistance to medication which affects community health
rather than just the individual who is suffering from the lack.

All right. My last individual \-- you know, my try at an inspirational
slide here. I think that, you know, I am pleased that Social Security
has reached out as it has to really open up these policy conferences and
to bring in people, you know, both on the east coast and now here on the
west. And I realize that this is early on in your process, and, you
know, if as you are saying you have not drafted thing yet that there
will be, you know, a long road to go, and so I do sincerely hope that
this is really an ongoing collaboration and that we will have plenty of
time afterwards. And my contact of information I think should be in the
materials, but, you know, I'm there. I'm there in New York, and Lady
Liberty is for all of us because, I mean, people really do look to the
program, you know, for hope when they are in need. And, you know, it's a
significant program and a public health intervention that you all are
doing within the Administration, and so I and the other folks who
collaborated on our extensive comments look forward to continuing to
collaborate and continuing with you.

MS. MOORE: Are there any questions for Hayley Gorenberg? \-\-- questions
if you could just say your name and where you are from so we can get
that on the transcription that would be great.

MR EIGEN: Barry Eigen, SSA. First I want to compliment LAMBDA Legal on
their comments. I've read them several times now I want you to know, and
they're very interesting, thoughtful, and helpful. I have a question
about your 14.08N comment. The comment was actually pretty short, and
all it recommended was that we expand the list of symptoms that we give
examples of in 14.08N, and my question is should we be taking that in
the context of your other recommendations to beef up the preparatory
material for \-- that explains how one gathers evidence about
functioning and evaluates it, what weight you give to it? Your whole
speech about various sources of evidence, about the symptoms the person
is experiencing, that sort of thing. Do those two things go together?
And the other part to that is can we take from that that you think that
the particularly functional criteria under 14.08N are still okay,
because you didn't say anything about them.

MS. GORENBERG: Well, I think that perhaps given the new questions that
you all are asking this conference that we could expand what we said,
you know, particular the functional criteria, I think that there is
plenty in there that remains good and remains strong, but that 14.08 is
particularly susceptible to this issue of maybe not having enough
guidance so that when \-- so that it gets put into practice the way that
we would like to see, and so I think that you're right to \-- I agree
with linking it with the preparatory information and there could be more
guidance on how actually to use 14.08, and I think that Leslie is going
to talk a bit more about her experience and maybe Jane. I see Jane \-\--
as well \-- with individual clients and how when they're in with \-- you
know, with the judge that they have seen that 14.08 doesn't get put into
play as it should. And so we hope that there could be more guidance in
an introductory way because I do view that preface material as sort of
training material, instructional material, and we have less of a problem
with substantively what's working in 14.08. We actually think that a lot
of that quite good, and more a problem in fact that we don't feel like
it's getting used properly in many, many of the cases, and they're going
to be talking about that from their individual claimant experience
representing people.

MS. PATTERSON: My name is Sarah Patterson. I'm an attorney, and just as
a little background I've been practicing Social Security law
representing claimants for 20 years, all during the '90s in San
Francisco, so very involved with the epidemic at that time. I also
worked for a year in the Ryan White Agency in Portland, Oregon. I would
just really reiterate what Hayley said. I think the 14.08N section is
probably the part that needs the most attention in the revisions. I won
all my cases on that part of the listing, and, you know, that's good
news/bad news, a love/hate relationship. But these people should have
been granted benefits from the get go, and the information just isn't
properly gathered.

The 4814 form that physicians sometimes fills out

\-- although I would say practically never is that form sent out by the
DDS. It's the first time when I send it to people that they're getting
it. But even physicians who are trained in doing these case don't \--
you know, they don't check off the manifestations part of it. They don't
check off the domain things, and so the information just is not clear
what needs to be done. I spend all of my time explaining this to
physicians or in training I've done for other lawyers. It's a very
subtle part of the listing, but I'm sure \-\-- from benefit rights who
say the same thing.

This is where the cases are won because the opportunistic infections are
basically ignored by the DDSs at this point. Their attitude is, well,
medications are taking care of that; it's not that big a deal anymore.
So you got the law here that says what the opportunistic infections are.
It used to be in the early '90s if you had one of those checked off, you
know, you won. Now it's kind of, well, \-\-- it's over, you know, no big
deal. But so 14.08N is like the dispositive part of it, and it's so
unclear.

MS. MOORE: Any other questions?

MS. : Hello. I'm \-\-- medical consultant for Missouri \-\--. Has LAMBDA
or any other legal organization done any work about trying to
systematically inform HIV treating physicians that they should return
our calls? Because we do individual case-by-case adjudications and
there's tons of these cases if I could just talk to the doctor I would
talk to the doctor. I \-\-- my cell phone at night. You know? I know
they're really busy. I know they're managed care. Docs are not going to
return my calls. I mean, it's a huge issue with us, and we would like to
reach out to them, at least my office, and we can't.

MS. GORENBERG: Hmm, I can't say that we have \-\-- question. You know,
we're how we can most effectively do it to \-- you know, when I say for
instance one of the things we were looking at is forms that can most
easily and properly reflect the patient's experience with HIV. One of
the things that we'd be looking to there is to create forms that are
forms people can deal with and get through and complete expeditiously
and effectively and get that to you all, and so to get physician input
on those forms. Yes. Let me just to turn it over to a doctor. That would
work best.

DR. GROSSMAN: Let me try some practical things. I think, number one, you
need to start to include email addresses on those forms because they're
not there, and a lot of us like to communicate by email. It's a little
bit easier. Second thing is I've never a message from anybody that said
you can call me all hours of the night. Ordinarily when I try to call
anybody back in a government agency after 4:00 p.m. I get a recording,
so \-- and, you know, I can't make those calls 10 times a day. So making
sure there's some access. The third thing that I'll speak to a little
bit more is that we've got practitioners who are as qualified as we are
to do this stuff, nurse practitioners and PAs, and, you know, my PA can
write for narcotics in New York but can't sign a disability form. So,
you know, I think we need to come up to speed on the fact that there are
more practitioners involved in this. That would probably help you get
access. They return phone calls better than we do.

MS. MOORE: Any other questions? Okay. Before we move on to our next
wonderful speaker we have a short announcement, and then we'll take a
15-minute break.

MS. SCHOENBERG: Hi. This is Nancy again. I just want to make sure you
guys know that we have two Powerpoint presentations in the course book,
right before the handout section. One is HIV-oriented and the other one
is for tomorrow's program.

MS. MOORE: Okay. Let's come back at 11:00.

(Whereupon, a short break was taken.)

MS. MOORE: Okay. I want to remind you to not forget the evaluation
before you leave today. It's somewhere in the middle of your binder
there. So please complete that. Before we begin Sue Roecker would like
to make a few comments.

MS. ROECKER: I just wanted to talk for a second about email and email
usage in terms of disability claims folders, and I was just talking to
Dr. Grossman a little bit so hopefully this won't be a surprise to him,
but we are working on developing what we call the electronic disability
claims folder. As part of that, medical records will be electronic in
our database, and we will either be scanning in records that we get in
paper or we're also building a mechanism, transport mechanism, for
treating physicians and

\-\-- and so forth to send us records electronically; and then we would
store then electronically and view them electronically, et cetera.

As part of that we are testing or beginning to test a secure website. So
rather than using unsecured email to transport medical information,
which under HIPA not too many physicians would want to do that because
of the possible consequences, rather than do that we are looking at a
secure website that we would then send an email message to a physician,
a hospital, whatever, and say we're \-- you have a request for
information from SSA on a secure website. They would have already been
issued a pin and a password to then go into that secure website, look at
what we're asking for, fill it out, attach their records, you know,
there are treatment records that we're looking for and attach those
electronically. Then send us the email back that says, \"I've posted
this to the secure website.\"

So we're starting to look at that. So that's one of the ways we think
you can be HIPA compliant and also try to use email and those kinds of
things to get to very busy doctors and treating physicians as well as
other folks. So we are looking at that. We're looking at other ways we
can get the information from treating physicians. That's the kind of
thing that we really need, and quite often as you've heard talking for
five minutes to a doctor can make all the difference in understanding
the information we already have and putting together a complete picture
of that claimant.

So anyway, just to let you know we're doing that, but we do have some
limitations first of all. HIPA is a, you know, very definite limitation
on how we send information electronically and how we provide it, and
also in the federal sector we have electronic records management
requirements that we have to meet that we're working on, too. So anyway,
just to let you know.

MS. MOORE: Did everyone get a Powerpoint handout for Jane Gelfand? If
you did not could you raise your hand? Okay. We ran out. Now, did anyone
accidentally pick up two or more? Okay. Could you share yours with one
of those who don't? Any others? Any others that don't have a Powerpoint?
Raise your hand. Okay. Very good. See how that worked out? Perfectly.
Okay. The next speaker we have Jane Gelfand from Positive Resource
Center.

**Presentation by Jane Gelfand**

MS. GELFAND: Can everyone hear me? Is the microphone working? Yeah?
Wonderful. First of all, thank you so much for having me. I'm just
absolutely thrilled to be here. My name is Jane Gelfand. I'm an attorney
and the benefits counseling program director at an agency here in San
Francisco. We're called Positive Resource Center and we're going to be
talking a little bit more about \-\-- and what we do. I'm also an
appointed member of the State Bar of California's Committee on Sexual
Orientation and Gender Identity \-\--, and through that committee we've
also worked on reports that talk about access and fairness in the Court
system, and a lot of those are crossover issues that we see with the
Social Security Administration. Also just to let you know is that \--
the organizers of this conference have been wonderful \-- have this
Powerpoint as well, and so if you need a copy of it you can probably
contact them. Correct? Hope so.

Our Positive Resource Center, again we're here in San Francisco. The
mission is to assist people who are living with HIV and AIDS through
trying to make the most informed choices possible around either benefits
and/or work. Sometimes we're working with people concurrently, sometimes
not, and I'll talk to a little bit about the trends that we've seen with
these two main client programs and what happened per se when we \-\-- in
'96 versus in '98 versus in 2004. We were actually founded by a former
SSA employee and incorporated in 1988. I always say we \-\-- for 15
years, but now it's actually 16. So we've been around for 16 years,
founded by this employee of SSA because she saw that people were dying
before they got their benefits. I would love to say that in 2004 things
have changed. However, I really don't think they have changed
substantially enough, in part what I'm going to talk about today.

What we do in our benefits counseling program, we're a little bit
different than some other agencies because we're hands on. We do direct
representation. Our staff include about four attorneys, legal interns, a
legal assistant, a benefits advocate. We have language capacities, speak
four different languages fluently, et cetera. We serve about 1,200
people living with HIV/AIDS per year and represent those people mostly
around Social Security. We also look at any and all public and private
disability and common health insurance benefits, job protection
benefits, et cetera. So we're really quite proficient in again looking
at this vast array of benefits, people's eligibility for them, and how
every single program has different eligibility requirements.

We represent people at all levels of these four levels for Social
Security application. We represent people at the initial level, at the
reconsideration level, at the hearing level, and at the appeals council
level. A lot of attorneys do direct representation only once cases get
to a hearing. We're actually there in the beginning, and so we see such
a vast array we're really able to spot trends that are happening at the
initial level, the reconsideration level, and at the hearing office, and
similarly at appeals council level.

We work also with a citywide advocacy workgroup. It's chaired by the San
Francisco Department of Public Health, and through that we were able to
feed in comments, public comments that were signed off by Dr. Mitch Katz
to Social Security when asking for comments on the proposed changes to
the listings. The citywide workgroup is really comprised of a vast array
of people. We have all the local SSA offices represented, the Department
of Human Services, Department of Public Health, and representatives and
attorneys and advocates as well. Through that workgroup we'll also able
to sort of communicate and talk about what we're seeing and really be
able to put our information together and put our best thinking hats
together in terms of really trying to address things on a systemwide
basis as well.

Because we represent people at all these different levels we actually
come into very close contact always with the local Social Security
office. In California is called DAPD. Nationwide it's DDS, and so I'm
going to use for the rest of presentation DDS. We work very closely with
DDS. I've been over there many times. I've spoken to all the supervisors
there. I've gone to the top of DDS in California to work very closely at
the initial reconsideration level with DDS because they are making the
medical determinations.

I also have two documents up here that I'm probably going to give to
Barry at the end that were generated. One of them is an internal
document from DDS we shared with our workgroup and another of them is a
report that was actually done by Social Security talking about what's
happening at DDS right now.

In terms of training, some conferences again, I've been at Positive
Research Center and doing this work for over six \-\--. JT Swanson here.
He was our supervising attorney as well doing this work for over three
years, and we've been around for over 16 years. So we really have a
plethora of knowledge being here in San Francisco, being able to see so
many people and work with them and really see what trends are happening
in the community and as well within the Social Security system. Again,
we're also members of this California State Bar committee and I already
talked about who our staff includes.

When we talk about state caseloads we're talking about big caseloads. We
usually represent about 200 people per staff attorney at all levels of
appeal. So again, we're seeing people at all levels. We're always trying
to win at the initial level, and I always say I would love to put us out
of business. How can we put ourselves out of business? If the
regulations as they are written now were actually followed I don't think
we would need to be around. I really believe that. If the regulations as
is without changes were actually followed we would not need benefits
representation. If people that were eligible could apply for benefits
and could get them then we wouldn't need to be here. Unfortunately we
don't see that happening. We didn't see it in 1988, we don't see it in
2004, and that's a lot of what I'm going to be talking about as well.

In terms of what are all of our goals, I think these are shared goals,
and please correct me if I'm wrong. But shared goals from Social
Security, from disabled individuals, and from advocates is to guarantee
this minimal level of health insurance and income for qualified aged,
blind, or disabled people, especially including people living with HIV
and AIDS, who are unable to work. Through access to these benefits it
really does improve access to treatment, medication, methadone
maintenance, housing and home support, attendant care, transportation,
food, et cetera. Vocational rehabilitation when we talk about return to
work, often your ticket into the Department of Rehabilitation is through
Social Security award. So without that it's very hard to talk about
returning to work if people don't have benefits to begin with. Through
all of this it really does increase people's quality of life because
often for the first time people are able to get housing to be able to
store medication that they have to store in a refrigerator, et cetera,
to really be able to live in a baseline standard of care that we would
like to think we would everyone in this country to be eligible for.

And then also a huge goal, and again, this is what I really want to talk
about, is to try to enforce the proper adjudication of the current
regulations, which again from our practice standpoint we don't see
happening, and that any code changes really accurately reflect the
current medical standards of disabled people living with HIV/AIDS. To
that I really defer to the doctors on the panel who have spoken, one
quite eloquently and Dr. Grossman I'm sure will be as eloquent about
these changes in the medical standards.

Barriers to accessing benefits right now as they exist under 14.08,
which is what we're talking about, the first category are more sort of
social political barriers, but also certainly barriers within SSA. A lot
were mentioned by Hayley, and I just want to second them. Poverty, lack
of resources, homelessness, and we know that these things don't make
people disabled under SSA, but they certainly complicate people's
picture. No space often to prepare and store medication is a big issue
for our clients. If they're on an antiretroviral treatment oftentimes
some of those meds need to be stored in refrigerators. No housing, no
refrigerator, no medication.

Concurrent often terminal health conditions in addition to HIV/AIDS,
we've only seen an increase in this. So people coming in with after
having two heart attacks, diabetes, myelitis, hepatitis C. I was trying
to think what's beyond quadruple diagnosed, and for the doctors in the
room how would you say five, six, seven diagnoses? I'd be curious.

DR. GROSSMAN: Multiple diagnoses.

(Laughter.)

MS. GELFAND: Right. So we have to gone beyond quadruple. For most of our
clients if they're living with more than four conditions usually two or
three of those are terminal conditions. Mental health is almost always a
part of anyone living with a terminal condition, and in fact it would be
quite shocking if anyone has a terminal condition and doesn't have some
element of mental health involved. Still people are usually disabled
because of 14.08, and I'm going to talk more about A through N, but
they're usually disabled based on those listings. Mental health is a
part of it, other co-infections are a part of it, but usually 14.08
really speaks to it. It's just not being properly adjudicated, and
that's what we see. Mental health conditions again, we see mental health
all the time. Sometimes if there's any mention of substance use that's
an automatic denial.

There's not a proper evaluation around materiality, and again we're
going to talk more about DDS and how we get better justice \-\--, which
we love \-\--. All of the \-\-- qualities that Hayley also spoke to
happen I feel throughout all levels of the Social Security process
because none of us in this society are immune from this level of
discrimination that happens on a daily basis because of the country that
we live in, and by that I mean again gay, lesbian, bisexual,
transgendered discrimination raises some gender bias, stigma and bias
facing people with disabilities and specifically people with HIV and
AIDS. I've been at hearings where judges have asked, \"How did you
contract HIV?\" And I really want to know how is that relevant to
meeting the listing level impairment. Right? How is that relevant? So
HIV in and of itself is a stigmatized disease, often much more
stigmatized than other disease groups, and that's also one of the ways
that it's really different than other conditions as well.

Apart from all these biases that happen \-- again I could go on and on
about all \-\-- Social Security really not understanding issues around
transgendered people, often using inappropriate pronouns, saying various
offensive and inflammatory remarks. We have one judge at the hearing
office who has a particular bias against transgendered people, both
claimants, attorneys, and providers. Other people, again we know another
judge that has a bias against females. Again, every case that we have
has a female treating provider, a female attorney and a female client.
We know that they're going to get denied when they go to this one judge.
So again, no system I think is immune from these, and I'm not faulting
Social Security for having it in their system as well, but it is there
just like in every other place.

The next part that I want to address, the last part here, is really
things that have happened within Social Security that I think can really
be addressed and changed to really work in a way that improves and
covers and makes the system run better for people. We know that welfare
reform of 1996 happened. I know. We know. Some of us here know, and it
really had a devastating impact on a lot of people that are otherwise
disabled and qualify for benefits. A lot of people for example with the
drug and alcohol rules changing, these people came back disabled under
other conditions, and I don't know the percentage of those people that
requalified under \-- after the \--

MR. : It was most of them \-\--.

MS. GELFAND: Most people. Most people. That should tell us something.
Substance use is not again properly evaluated around materiality. Right?
There are tremendous people cut off. They almost all requalified. Why?
Because they're living with concurrent conditions. It wasn't the
substance use. It was the mental health. It was HIV. It was other
conditions. So that again should tell us something.

We work on a variety of issues, not just this. So we work on the all the
\-\-- regs. Right now this is another conference, another day to talk
about those. But we have so many people right now that are so sick and
disabled, have a 20-year-old warrant out in Florida for not completing
their last hour of community services, and they're cut off their
benefits. Where do they go from there? Down hill, into the street, and
out into the street outside of the hotel that we're at right now.

What else do I want to say? Immigration status restrictions, again in
California we created a program through activism called CAPI, Cash
Assistant Program for Immigrants. We know that that program is in
jeopardy with our new governor, and we're very concerned about that as
well.

The next part, gaps in key knowledge and skill areas of DDS to
adjudicate claims. Actually I just got this report. I don't know if you
all have seen this or are familiar with it, but it was produced by the
United States General Accounting Office on the Social Security
Administration, and it just came out January, 2004, and in there they
actually cite \-- and I would be more than happy to give this to you as
well. They actually cited their gaps in key knowledge and skills area of
DDS to adjudicate claims. The life span of DDS analyst is less than two
years. They don't know the regulations. They often don't know the
regulations. I don't fault them again. I think it's really the system. I
know that they have 200 cases as well. So do we. It's a hard system.
Right? And oftentimes it's easier to adjudicate a claim with a denial
than with an allowance because it might take a little bit more work. So
what we see is that DDS again, and I'll go more into this, may not have
the proper training to really adjudicate these claims. Lack of
consisting following of the regulations including the adjudication again
at 14.08 as it stands now, and again we see this at all levels.

So I was really struggling in trying to prepare this presentation about
changes. What are we looking for when we change things? And sort of
sometimes what I talk about when we do return-to-work issues for people
on benefits is sometimes we have to do some old housecleaning first
before we can talk about the future; and I think that really if there
could be some stressed from this conference it would be that we really
need to clean up actually what has been happening up until this point,
how regulations have not been followed, how they need to be followed,
how there needs to accountability, and then we can talk about expansions
and change as well. But as it stands right now, and other advocates may
be able to speak to this, I can tell you almost all of my cases and
their stories \-- and I mentioned one or two, but again we don't see
that 14.08 is followed as it is right now.

Accountability, implementation again of the current regulations. Again
in this report on page 24 they said at least \-\-- of the examiners need
additional training, especially around evaluation of the weight to be
given to medical evidence from a treating physician and the assessment
of an applicant's symptoms. What we see is that treating sources are not
acknowledged. They're in the regulations. If a treating source sees a
claimant three times they are a treating source. They get the weight of
the evidence. DDS often does not acknowledge that there's a treating
source when they write up a case, even though all \-- I would say
probably 100 percent of our clients have treating sources, 100 percent.
Why? We're in San Francisco. We work closely with San Francisco
Department of Public Health. We work closely with private physicians.
They all have treating sources, and yet you'll see in a couple of slides
down the line how CEs, consultative exams, are set up for each and every
one of those clients. Why is that? Why? Because there's an improper
evaluation, again the weight of the evidence, and it's the kind of thing
we see.

Currently there's a systematic failure to seek out and develop treating
sources of medical evidence. I have an internal document that was
circulated at our citywide group that I want to actually give to you,
and this was an internal treating document from DDS here in California,
State of California CL. In here their internal training document is
absolutely against the regulations of how to develop a claim. There was
a class action lawsuit actually brought against DAPD here in California
because of these very reasons, and this is part of what I'm talking
about so I want to share with you.

So part of what they say in that report is that when they get a case
what do they do first? Do they ask for treating source evidence? No.
They set up a CE. Thank you. And the regulations say first, first and
foremost, if you set up a CE within 20 days of receiving a claim it's
improper. It's improper; 10 days to request from treating, wait, another
request goes out, another 10 days. You cannot set up CEs like that. So
what we see is every single case that goes to DDS they have an immediate
CE set up for them. Why? You're being trained that way to set those up.
I don't fault them individual again. I think they have a lot of
pressure. They have a lot of pressure with their cases to close cases,
to push cases, and again it's easier to close a case setting up a CE,
having a client not being able to attend because of their ability, and
then being able to deny that claim \-- and again, I'm going to talk
about CEs.

These CEs, do people know what I'm talking about, consultative
examinations? So these CEs are often unnecessarily scheduled, both under
the Code of Federal Regulations and the POMS, and too much weight is
given to the opinions of these non-treating medical examiners who often
generate reports that don't adequately address the complicated nature of
HIV disease.

What happens in these evaluations? Does anybody have a story of someone
that went to a CE and what happened? Sarah?

MS. : I have several.

MS. PATTERSON: I had one where the consultant examiner didn't believe
the person had HIV.

MS. GELFAND: How interesting.

MS. PATTERSON: And another one where the fact that I asked for the
treating physician to do whatever you would call it \--

MS. GELFAND: Right.

MS. PATTERSON: The \-\-- examination, it was used as evidence that the
person was capable enough to demand that the treating physician do this,
so must be sort of, you know, able to do \-\--.

MS. GELFAND: Great. So usually what we hear from clients, they're
actually sent to two different places in San Francisco. Again, I've been
over to DDS, and these two places have their flyers up. There are
probably 200 flyers actually per each of these two spots. These are two
places in San Francisco that they do no primary care. These are not
clinics. They're not safe. They don't have the proper equipment. They
see people for five minutes. They don't take blood work, which they
shouldn't anyway. What am I going to be able to tell about Sarah through
what I call a drunk driving test? Right? \"Walk to the door, walk back,
you have the ability to work,\" and this is what happens in these CEs. I
was in another conference where a doctor said that he thought after
reviewing these reports that over 95 percent of these CEs nationwide
were fraudulent. Why? If you look at the \-- help with the ears, nose,
and throat examine. EGNT?

DR. GROSSMAN: ENT.

MS. GELFAND: Thank you. Basically what this one doctor had said is that
in all of these reports they had come to a conclusion about that, yet
none of these people's ears, nose, or throats were looked at. Right?
This happens all the time. The five-minute evaluation, these people
don't know about HIV. They're not in primary care practice, and right
now another \-- which I won't mention, but another agency in San
Francisco is looking at class action lawsuits against these two offices
that set up these CEs. Cost effective for Social Security sometimes and
in order to deny a claim, and often produces what we call unfavorable
evidence, and it's quite problematic I say again.

DR. RAFFANTI: \-\-- I keep coming back to this \-\-- San Francisco and
your experiences in San Francisco, and I heard about the \-\--. I
practice in a state that is surrounded by nine states so I \-\--. But,
you know, what you described does not seem to be the case in Tennessee
for example.

MS. GELFAND: Oh. Great.

DR. RAFFANTI: It doesn't seem like we have a problem at this level. We
have other problems, and then there are some \-\-- seems like the only
way you be declared disabled is to die, and that's not exaggeration.
That's really the way it is.

MS. GELFAND: I agree.

DR. RAFFANTI: And the reason I came to this meeting is so much of this
is really heavily weighted by the coastal experiences, you know? And I'm
not 100 percent sure it really reflects what's going on nationally; and,
you know, I know that there's a QA system that mentioned earlier, but I
would probably challenge some of that with my experience.

MS. GELFAND: I'm going to talk about that, too.

DR. RAFFANTI: So I think we have to keep in mind that what you're doing
is extremely \-- you know, it's great, it's interesting, and it's
obviously cutting edge, but it is here; and that's a big call for a lot
of us, and I think that what's wrong with the system if we're going to
talk about fixing it we really have to look at different areas of the
country if we're going to do our housecleaning. You know? Because it's
very different in different places.

MS. GELFAND: I think those are excellent points, and again housecleaning
you would clean your bathroom different than maybe you would clean your
kitchen. Right? And identify different issues, so maybe actually
regionwide, maybe that's next on the agenda to figure out what's
happening. What scares me is that we're in San Francisco. We should
actually be having the best of everything here to some degree. We're in
an urban area. We should be the hippest in terms of medical treatment,
in terms of how things are handled, in terms of taking care of people
with HIV and AIDS who often come here because they're fleeing
discrimination in other states. We should be an example. Right? We
should be the best, and yet we're not, and it sounds like maybe
Tennessee is doing a better job.

DR. RAFFANTI: Actually \-\--.

MS. GELFAND: There you go. There you go. But your point is definitely
well taken, and I want to say again even though we speak at national
conferences we train people throughout California, so we're often
getting rural experience related to us. We have people call us from
around the country, so we do have a huge body of knowledge, yet
obviously not the entire game, and I would never want to be the entire
game. So I think it's many comments, and thank you again for yours, and
please keep piping in if I'm not speaking specifically to what's
happening in your area.

Again, these consultative exams again might not be an issue in
Tennessee. Here they are, and it may be because again these two places
have actually entered whatever kind of informal contract they've entered
with DDS so all the CEs go to them. Right? All them go to them. For the
psychological consultative examinations what I've been told is, a)
they're less than 40 minutes. If anyone has done psychological testing
\-- has anyone in the room \-- does anyone administer psychological
testing? We know that those tests are actually four-plus hours that they
take. So what they often do at the AIDS consultative exams is ask one
out of every 20 questions and score someone based on that.

At the most what I've seen from consultative exams is that they'll agree
with symptoms, but they'll say that people have no functional
limitations. Why? They know who is paying them to do the evaluation, and
they know how to get more referrals off them; and, again, this is what I
see in terms of a pattern of practice of working with over 1,200 people
every single year for the past six years and learning from my
predecessors for the past 15 years.

There's a systematic failure, and this is one of the things that DDS was
sued on here in California. Again, maybe not in Tennessee, but in
California certainly. Systematic failure to review, monitor, supervise,
or oversee the adequacy of these consultative exams or examiners. They
are frequently biased against the applicant, and again oftentimes not
their fault. They don't know about HIV often, and again if I walked up
to anyone \-- just Sarah, and I keep using you because you're sitting in
front of me. If I walked up to Sarah who is living with HIV what can I
tell from her about her symptoms and her limitations? Probably not a
lot. Whereas if I was being treated on a regular basis by Dr. Grossman,
he knew me well, he had been running tests on me, I had been talking to
him about my symptoms and my reasonable limitations, he would be the
treating source and the best person to really talk about what that is.

Oftentimes what we see is that a treating source \-- again, all of
clients have treating sources. They write out the 4814, they write out
the \-\-- functional limitations, they write out everything that meets a
listing level impairment, and yet they still get denied. And on these
RFC, these residual functional capacity reports that get generated at
the initial and reconsideration level, when it says on the very last
page, \"Is there a treating source? Yes. Does your opinion disagree with
them? Yes. If yes, state why,\" I have never, not once, seen anything
written in that. I don't know if any other advocate has at a hearing,
when you get the file at the hearing level.

MS. CAPELLE: I've seen a couple, but generally the comment is something
about a treating physician has simply repeated self-declared statements
by patient which are not considered credible. But there's no explanation
about why the patient cannot be credible when discussing their illness
with their treating source. That's what \--.

MS. GELFAND: So again they're often left blank. Again, accountability,
what needs to happen and what we're seeing right now. Presumptive
eligibility is one of the most important and lifesaving things for
people living with HIV and AIDs. It's sometimes the only way to get
immediate taps into Medicaid, into income benefits, and to actually save
people before they die on the street. It's for people who again have no
\-- have almost no income, no resources. Presumptive eligibility if any
changes are to made I feel like it must stay intact. It is one of the
most important things for our clients. It's at the initial level only,
and in expanding this I would like to see it actually expanded at the
reconsideration and hearing level as well, that people would be eligible
for presumptive eligibility. That means that you get into pay now
pending a decision.

What's suppose to happen is you can do this either through the local
office or through DDS. We see patterns and practices before the local
office would never do it, even though the regs are actually the same for
the local office and DDS. We trained all the local offices that actually
the regs do say that they should do it, so now they do it. DDS now has
stopped allowing presumptive payments across the board and are now
saying that you need to give us 28,000 other things before we'll grant
it, which is again against the regulations from what I would say. So we
see again presumptive eligibility, so important, so crucial, so
lifesaving, still not followed.

Appointment of representation. We fill out people that represent people,
that's attorneys and non-attorneys. We fill out what's called a form
1696. Under that there are certain duties that we are bound by. We when
sign that we are bound by it, and please hold me responsible to those.
Rights? Hold me responsible. As well Social Security is bound by certain
duties when there's one on file.

What we see is when we send these appointment of rep ones in they are
often not attached to the file. They are not sent over to DDS. They are
repeatedly lost. I don't know where they go. They fall into a pit in the
middle of somewhere; I'm not sure where. What happens, what I've been
told from all the Social Security local offices, is for

Title 2 apps there's actually no section in there to say, \"Do you have
a lawyer or not? Who is that person?\" There's no section. The only
place they can put it in is the comments at the local office. So this
might be a procedural problem that hopeful can be resolved with Title 2
apps.

What happens is again we're not put on there as the appointment of rep.
For some cases I have faxed that appointment of representative form
probably 25 times to different sources, and we're still not on file and
it's a very time-consuming process. Therefore, again, once that
appointment of rep is in the file clients should not be called by
anyone, by DDS, et cetera. They should be calling us. It doesn't happen.
I often get calls from DDS saying, \"I just called your client and
\--.\" That's my most favorite message. It happens all the time. We're
not cc'd on paperwork. Therefore people are sent these consultative exam
requests when actually we've already submitted all the treating source
evidence, and/or can you get the treating source to do what would be
required under the CE, which is usually a physical examination. What
would I do if Dr. Grossman was a treating doc? I would send him the
physical examination form that we've copied that necessary from the CEs
and have the treating source fill out the physical examination form
rather than having myself go to a CE to get that physical examination
form done. Again, this is a huge problem, and maybe something for
another day as well, but the appointment of representative is so
important.

And just to combat some things, people that apply who are unrepresented,
over 70 percent of those people are denied at the initial level versus
people that are represented, more than 90 percent are successful. Why is
that? Why does it require a representative when that person's condition
hasn't changed? So what is going on in terms of that difference? Of
those 70 percent that are denied most of those people will not appeal
their initial denial, and instead they'll file another initial app.
Actually I went to another conference that Social Security said finally
multiple initial applications is a tip off for a fraud investigation.
But most people don't know about appeal rights, and it's their very
disability that may prevent them from understanding that. I barely
understand appeal rights, right? We all barely understand appeal rights.
So we often see again people do not appeal.

If people are finally able to get to that hearing level we're more than
90 percent successful, and why are we there instead of at the initial
level? And that's a great question that I would love to find out about.
So that's another big issue that we often are looking at.

Again I talked a little bit about this, the last thing, the systematic
failure to really properly evaluate the materiality of alcohol and drug
use. For example, I just went to a hearing. This person had 100 T-cells,
chronic diarrhea, and has been a heroin user. The medical expert there
was a retired cardiologist. He didn't see or know or acknowledge all of
the vast symptoms that this person was living with. It's a perfect
14.08N case, repeated symptoms resulting in marked limitations. We had a
4814 by the treating doctor, a physical exam form, a letter that further
explained this person's treatment, and this person had chronic diarrhea.
So medical people, in terms of heroin or opiates, what does that do to
you? Does it make you have diarrhea? No. It makes you constipated,
right? So this was part of my reason. I was, huh, interesting. This
substance use has nothing to do with what's happening. We got turned
down at the hearing office. The appeals council overturned it, did not
even remand it approved the case. And retired cardiologist, what can you
say about it? He didn't know what heroin was practically. So in terms of
heroin, diarrhea, constipation, these are the complicated things that
people need to trained on, especially medical experts, as well as anyone
who is touching these claims.

I'm almost done. I'm almost done. Again, I defer to the medical
presentations. I think they're really great about CD4 and viral load.
They're not the only indicators. What we see is when people have low
numbers people can have five T-cells and be denied in a second. Right?
Five T-cells can be denied in a second. So when people have actually
worried about numbers it doesn't help their case. However, if people
have what they consider good numbers it hurts you. It hurts your case.
Even if you still have of the repeated symptoms and marked limitations,
and that's what we see over and over and over again. And again, these
are not the indicators and there are really incredible information about
the killer virus that may hide in other areas. You may still have an
\-\-- viral load, but again the virus may be somewhere else.

Adjudication of 14.08N must be followed and maintained; and, Barry,
according to what you were talking about earlier, this is the most
important listing under 14.08, the most important. It's also the most
misunderstood and the most not adjudicated properly. We have so many
people regardless of their CD4 count that fit into this listing, and
this is one we usually win at the hearing level. We should be winning it
at the initial.

We have so many examples of people that have no substance use that have
low numbers. They have repeated symptoms. They have a treating source.
They have marked limitations. They made this listing. Denial after
denial after denial. Why? Because what's often cited is they don't have
any opportunistic infections, which really are not part of any
definitions in here. The first 41 are really not opportunistic
infections according to the medical community. They kind of mirror them,
but they're really not the same. So again 14.08N is so important. If
anything it should be maintained, it should be expanded, and it should
be really given the weight that it's given. There has been a pattern of
practice I think of AIDS fatigue with these evaluators that often think
now people with HIV are not disabled, period, across the board, and so
therefore, again, 14.08N is not adjudicated; and/or these are seen what
you were talking about, Barry, to begin with, an equivalent of like
chronic fatigue syndrome, an equivalent of fibromyalgia. Symptoms are
real. Symptoms resulting from HIV are real. They're debilitating.
They're chronic. As Hayley pointed out, you may have two good days out
of the week. What's happening the other three to five days? People are
debilitated. We have people come to our office; they have charted every
single bathroom they can get to between where they're coming from and
where our office is, and they know every single bathroom. This is a
condition that people are living with.

Proper oversight of DDS must occur, and again looking at this report
that was generated \-- and this was given actually to the Committee on
Ways and Means, House of Representatives, et cetera. They really talk
about the pitfalls of DDS and the adjudication process there. Some of
the doctors \-- and I know there might be some in this room who sound
like true experts that are really proficient in HIV and have continuing
education. When we asked DDS here if the doctors on their teams knew
about HIV or received trainings around HIV they said that they did not
and in fact just continuing medical education was sufficient. I know
because I do continuing legal education that that may or may not be in
my field. It may or may not help me in my work. Right? It's just a
requirement of our license. So these doctors are often not trained
around HIV, often again have not done primary care, are not up on the
latest treatments, haven't had a training by Dr. Volberding or by Dr.
Grossman, do not know really about HIV and what's happening with HIV and
again thing that's it gone away and it's better, and everything is fine
and people are not disabled anymore.

Again, presumptive eligibility we talked about; and then
HIV/AIDS-specific trainings, and that's for all examiners, which include
analysts at DDS, the doctors that sit behind the analysts at DDS, the
doctors at DDS and hearing offices, and the doctors that are being \--
that people are being sent to for consultative examinations. I think Dr.
Grossman might speak to more to this. Maybe?

DR. GROSSMAN: No, but I would make the comment that it seems a bit
shortsighted to use special, you know, CE groups. It seems to me that
the public hospitals are in trouble. They're looking for funding
streams, and it would be very easy in a situation where there's a whole
lot more oversight over what would happen to set up a clinic within the
public hospital system to do that evaluation. It would make a lot of
people happy.

MS. GELFAND: And actually what the regulations say is that before they
set up that CE they're supposed to go back to the treating source. Have
any advocates seen that happen?

MS. : Never.

MS. GELFAND: Never. They never do that. They set up the CE instead. So
again, HIV/AIDS-specific training. The retired cardiologist at my
hearing did not help us out. He did not know about HIV. He had no idea
about drugs, implications, materiality, mental health, et cetera, and
didn't know what oral thrush was. Did not know. I've had another expert
who could not pronounce candidiasis.

DR. GROSSMAN: And again I think that there are places like a visiting
nurse service for example that has a lot of trained people, nurses and
nurse practitioners, who are probably underutilized in HIV right now
because we don't do a lot \-- as much home care as we used to. Those
would be the kind of experts, and then you would also be supporting a
great nonprofit like ANS.

MS. GELFAND: Okay. Thanks. This might be my last slide, and then I'm
really curious to see if there are questions. So need for expansion of
concurrent conditions that exist. If we're looking at expanding,
hepatitis C again from Dr. Volberding's report, we can see there's such
a high prevalence rate of co-infection. Right now under 14.08 it just
refers back to 5.05. Right? It refers back to the hepatitis C listing.
So someone who is co-infected, their HIV status actually may or may not
be a part of that evaluation process if we're just going back to the
pure hep C listing. The hep C listing as it is, 5.05, should be changed.
It really talks about requiring end-stage liver failure. Most of our
clients living with HIV will never be eligible for a transplant. By the
time they've reached that level they're going to die. They're going to
die.

So what we see is so many people co-infected, yet again this hep C
listing is really not reflective of what's happening for them.
Additionally, a lot of people with hep C have fatigue as a symptom, and
again I'm wondering if

Dr. Grossman would talk about that in his presentation. But what we've
known, we need to know \-- always we're undercover medical people
because we need to know a little bit about medicine to do this stuff.
But what we see is that a very common side effect of living with hep C
is fatigue \-- along with HIV fatigue, diabetes mellitus fatigue. We
have a lot of fatigue components. It's different than just a
self-reported symptom at that point. That is objective evidence.

Standalone conditions, these standalone conditions, and these are the
\-- one of the questions I think for this afternoon as well. We don't
see the standalone conditions being adjudicated. Esophageal candidiasis,
I've lost cases where it's clearly documented that there is esophageal
candidiasis, that the treating physician has documented that. It's a
listing level impairment. What do they want? They want to do a full
functional assessment and then deny the case. It happens all the time.

So in answer to this afternoon's question should we do away with some of
these, they're not being followed right now. There's been a change in
pattern and practice again so that we don't see people qualifying under
A through M when they should. There's a lot of small print for a lot of
the other conditions, caryopses sarcoma for example, candidiasis,
diarrhea, anemia. There's a lot of small print that is not reflective of
opportunistic infections. The small print after those A through M
listings I think should be really looked at and analyzed and maybe done
away with some of the small print.

Again, denials improperly cite all kinds of things, improperly cite the
regulations. They say, oh, there are no opportunistic infections so
you're not disabled. That's not part of 14.08 unless someone could tell
me otherwise. It's not, you know, you have no \-\--. It's you don't meet
anything between 14.08A through M or something else. So the denials
often cite the wrong regulations, and again some of these conditions A
through M should more adequate \-- the diarrhea one especially I think
could be changed to adequately reflect that.

Hope. Do we have hope? Patterns and practice again. I don't know what to
change, but all I can tell you is we talk to so many people and people
leave so many interesting voice mails on my machine that I learn things
like certain doctors are blacklisted at DDS, even though that's not
supposed to happen. Analysts will tell me that. Again, patterns and
practices have really changed over I would say the past four years.
Claimants living with HIV still die before receipt of benefits. JT just
had a client pass away while it was \-- he had already been denied at
the initial and it was pending at the reconsideration level, and he
died.

Oversight at DDS is limited. We have so many successes now at the
hearing office without submitting any new evidence. We submit no new
evidence, but they have been denied at the reconsideration level.
They're approved at the hearing level because at the hearing office
there is a greater understanding of the regulations, and so it's
wonderful actually now that we have these cases. We would love to win an
initial. We should win in initial. They're going to hearing with no new
evidence and they're being approved because \--

MS. : Without hearings.

MS. GELFAND: Without hearings, on the record decisions without hearings.
They're just being approved with a paper file in hand, and I can't tell
you. This trend has just been enormous, and it sounds like it's the same
in Oregon, which is fascinating to me. So it might not be in Tennessee,
right? But in Oregon and then in California this is what we're seeing.

HIV and AIDS is more complicated. When I first learned about these
proposed changes I was thinking in mine, huh, I wonder if Social
Security is thinking that it's actually less complicated, or that, you
know, HIV has been cured through medication. Quite the opposite. HIV is
so complicated. It's more complicated. As the doctor again has talked
about, we don't know some of these long-term effects of medication.
There are all these other concurrent conditions that can happen; early
onset of diabetes, hepatitis C, heart attacks is a main thing. Someone
told me the other day that they had \-- the lipodystrophy had actually
been in their bloodstream, and I'm not sure if that's medically
accurate, but they had all these fatty deposits in their bloodstream.
There's all kinds of other conditions that people are now living with
and people are coming to us with. Cancer, HIV, diabetes, hep C, et
cetera. Right? So this is where we get into the multiple diagnosed.

Two minutes and I'm done. Again, resistant strains of HIV, and the
doctor will talk more about those. Many people living with HIV and AIDS
who attempt to return work are on expedited reinstatement. In '96 in the
onset of protease we saw a lot of crossover clients, people that had
been on benefits and did a lot of attempts at return to work. A lot of
those people were successful at that. A lot of people are no longer
successful at that, and what we're seeing now is between our two main
programs we actually share fewer and fewer clients. Most of our clients
at this point are so disabled from HIV their return to work is really
not an option. Even though what do people want to do the most usually?
It's work. People want to work. It's not a lack of wanting to do it.
It's a lack of being able to do it.

So in just my closing comments, in terms of bringing dignity to people
living with HIV and AIDS I think the Social Security Administration as
well as all of us in this room have a huge part in doing that; to bring
some humanity to the system, to make the regulations be followed, and to
provide dignity in that way to allow benefits for people who are
qualified. If things are expanded, if the definitions are expanded,
hopefully it's expanded with some of these thoughts in mind as well.
Questions?

MR. : \-\-- mic, but stand up.

MS. : Can you say your name?

MR. SKLAR: Sure. I'm Glenn Sklar from Social Security, Baltimore. Again
thank you for your comments. We really do appreciate those, and I just
want to emphasize that the overall point of this conference is to listen
and not necessary debate tough subjects, and you raised some really
tough points. I wanted to at least take note of a couple of those.

One of those includes an allegation of bias, and another of patterns and
practices and not actually treating patients in terms of consultative
examiners, and we would like to talk further. If you do have additional
information it would certainly \-- I would certainly like to hear it.
Those of the types of things I wouldn't want to leave on the record
without having addressed fully. I think that's really important.

The second point was hope, and I know there are a couple of folks
sitting at this table who may be able to give you a little bit of hope
on a couple of issues, particularly in the quality assurance areas and
expert medical units, and with that I will turn the mic to whoever is
willing to grab it.

MR. GERRY: I guess just taking \--

MS. : Can you say your name?

MR. GERRY: Oh. Martin Gerry.

MS. : Thank you.

MR. GERRY: On the expert unit, I mean, we're \-- the Commissioner
announced about a new proposed approach \-\-- determination that calls
for the creation of central medical expert units, basically replacing
the medical expertise structures now in the DDS, and one of those proto
things that \-- and we've been getting comments on that at the
discussions around the proposed approach.

But one of the questions I hoped we would get people talking about
sometime during these discussions would be \-- because there's been so
many references I think to the expertise that's needed is \-\-- with
electronic records transmission, which is what we're actually in the
process of actively implementing right now. We could basically refer
case files to any medical expert in the country, including medical
experts who are actively practicing medicine, not necessarily people who
are full-time employees of the government or of any other \-\--.

So one of the things that I'd be very interested in at some point is
getting people's feedback on how \-\-- structured and what combinations
of people might best be able to deal with different kinds of situations.
What I mean by that is for example because geography is really not a
problem in terms of looking at this if there are so-called paragraph N
cases that should be dealt with by people with particular expertise
presumably they could be referred to \-\-- with particular expertise,
and you could also \-- the other possibility would be to have kind of
backups and backups. You have people with certain \-\-- expertise who
would have an option to \-\-- people with greater expertise in a
particular subarea, especially when you realize that your \-\-- across
the country in this practical manner.

So that, I think that one of the things that would be very interesting
either in these discussions or even through the comment process is to
try to get a sense of how we would do that. I think the case has been
made both in Philadelphia and here even without talking about this idea

\-\-- idea, but how to set that up. And as a practical matter you talked
about nurse practitioners, you talked about other health experts other
than physicians. How would they fit into that? How would you set up that
kind of \-\--? That's something I think would be very interesting.

DR. GROSSMAN: Well, I have some things about \--

MS. GELFAND: You've given me hope.

DR. GROSSMAN: \-- how we're actually just defining the specialist and
how \-- and the qualified specialist. But, you know, I like the \-- I
think the idea of the electronic record is a great one, but some of the
stuff has to also happen with physical exam. But there isn't any reason
why you can't have a central office with electronic linkup to your
experts in Washington or wherever you're going to put them who can do a
physical exam over the internet. You know, with perhaps a nurse in the
room, but to centralize it, you know, in any major city and do it that
way. We certainly are doing that kind of medicine, you know,
long-distance medicine in other ways.

MS. GELFAND: You've given me hope. Thank you, and I certainly don't mean
any of this as disrespect to the Social Security Administration. It's
quite the opposite. I have the upmost respect and that's why I do this
work, and that's why I stay engaged and involved. With our agency, and
this is really the mission of our agency, it's truly work with people
who are living with HIV and AIDS, and if they can work to try to set up
the proper tools to get them to work through vocational training. If
they cannot work, to try to get them benefits. So we work very closely,
again, with Social Security. These are just again the trends that we can
see over so much time.

I just want to say one comment about the random sampling \-- and how to
say it. What we've seen with this random sampling is actually it's only
Title 2 allowances that go to a random sample. We've seen no Title 16
cases go and we've seen no denials go. I would love to see cases that
have been denied at the initial level actually go to the quality review
branch in California. Tennessee may be different \--

MR. : \-\-- not a Tennessee question.

MS. GELFAND: Right. Other places may be different.

MR. : Obviously different.

MS. ROECKER: I \-\-- talk to Jane. I just have to say you may not have
seen a Title 16 case, but the random sample is done electronically. The
cases are tracked that are selected. You know, we go after those cases
to put them in for federal review. So your experience may be that, but
that's not how the sample is selected. So they do include all kinds of
cases, Title 2, Title 16, allowances and denials, adults, children, et
cetera.

MS. GELFAND: And there may be different levels and people participating
in the quality review branch \--

MS. ROECKER: Well, the percentage is different.

MS. GELFAND: \-- because this is the one in Richmond here in California.

MS. ROECKER: Yes.

MS. : It's the same \-\--.

MS. : It's part of the same \-\-- sampling.

MS. ROECKER: No. So I mean if \-- yes. The percentage that's selected in
any state is different from state to state because workloads are
different. California is huge, so as a percentage we don't select as
high a percent as we might for Nevada for instance. We get at least a
certain number of cases so we get a sense of the whole state, but the
percent for the QA part of it is the same whether it's Title 2 or Title
16. Now as I said before, we do have a statutory requirement to review
50 percent of the allowances. So that's Title 2 allowances. So that's
why you probably have a lot more experience with cases, Title 2 cases,
being reviewed. That's the pre-effectuation review, and that's by law
required of us. The QA is a random, across-the-board selection; and so
your experience has probably been more with Title 2 because the 50
percent, whereas there's a very small percentage selected for QA, but
that's across the board.

MS. GELFAND: We've been tracking it on our database so we can actually
\-- we track claims when they close, what we think the outcome is from
the analyst, and how they've gotten to \-\--. So that's all that I can
share with you is what we've seen in our experience, which may be
different than other people's and the people that are sitting on the
other side of \-\--.

DR. RAFFANTI: Mentioned 70 percent of people without representatives are
denied? \-\-- 90 were okay with representatives, 70 percent without
representatives. Are you saying that that's from the initial just fill
out the form? Do you know how that's changed over time in your
experience? I mean, do you guys have data that goes back for 16 years?

MS. GELFAND: I don't think it has changed over time, and those are
studies that I think came out of New York that were actually looking
federally. And then \-\-- just put out \-- which is an organization for
Social Security representatives, put out a study that said at
reconsideration level if people actually make it there less than 10
percent; and they did a state-by-state breakdown, and I forget what it
was for Tennessee. There were some states where only four percent recons
were approved. The max was 10 percent. So I love getting my hands on
those studies to find out why is that when people are represented. Is it
because we're actually having Social Security follow the regs? You know,
nothing is changing with that person again, but why is that discrepancy?

MS. : They have a question in the back.

MS. : Yes. Please state your name, too, for the transcription and your
agency. Thank you.

MS. HALL: I'm Sheila Hall. I work at the East Bay Community Law Center
\-\-- AIDS Law Project.

MS. GELFAND: Hi, Sheila.

MS. HALL: Hello, Jane. And I just wanted to really echo what Jane has
said here today, that we have had almost identical experience problems
with DDS here; and I know that we're not here today to talk about DDS so
much, but it's such an integral part. If we could change the listing and
make it perfect, but it's going to make any difference if it's not being
\-- if the regulations are not being followed and they're not getting
the right evidence, and they don't wait to develop the case so that we
can get the treating physicians for the ones that \-\-- and have the
blood work. And the CE, the problem with the CEs is huge, and I just
don't know, you know, how it's going to change even if we get the
listing perfect if that part doesn't change.

I also wanted to say I missed the beginning when you were discussing the
QA. \-\-- Social Security, but a frustrating thing that's happening
right now, I have two clients' whose cases were tentatively approved at
DDS and I keep waiting and waiting and waiting. It's been like six
weeks, seven weeks, and these are AIDS cases. You know, what happened to
\-- you know, terminal cases being expedited? I have no idea when we're
going to get the case sent back so those persons can get \-\-- paid, I
have people who have no money left. I mean, they are becoming homeless
waiting and waiting, and all I can hear is, \"Well, it was picked up for
QA. We'll let you know.\" I don't know. It could be a month. It could be
two weeks. It's very frustrating when people are very sick and have
their money \-\-- because they're not on presumptive \-\--.

MS. : Barry \-\-- part of it, but I'll get

you \-\--.

MR. EIGEN: Oh. I didn't know. Sorry. Barry Eigen again. I actually have
a question for the feds and the state folks who are here, as well as
Jane. One of the things that struck me \-- but this is really kind of
all the subject of today's meeting. But when we hear that people are
having kind of systemic problems we hate that. Regional offices hate
that. State, the people who run the state agencies hate to find out
about that, and they want to do something about it. So I guess my
question is have you talked to the people who administer the state
agency or are representatives in the regional offices to see if you
could improve the situation? Maybe they're just not \-\--. Maybe they're
not even aware, but \--.

MS. GELFAND: I have. We've talked to everyone. We've had meetings,
repeat meetings.

MS. ROECKER: Well, then \-- this is Sue Roecker. Then we do have people
here that have been listening to you from the regional office, Diane
Truen is in charge of the Center for Disability Programs here and Patty
Robidart who is the Deputy Regional Commissioner. So all the local
problems \-- and not that California local, but from a national
standpoint. All the local problems that you've been describing I'm sure
that they would be glad to continue talking to you and getting any
specifics you have. Anybody, you know, that's here from the San
Francisco area that would like to talk to them about that, and then they
can start taking some appropriate action.

MS. GELFAND: Great. I would love that. We've actually met with the
highest staff at DDS here, and we've had absolutely no impact; and they
basically reiterated that they're following regulations, which again
\-\--. So it would be wonderful to talk further, and I hope that this
information has been useful in terms of looking at patterns of practice,
what's actually happening, and Sheila Hall's comment. Sheila is the HIV
Legal Service Director at East Bay Community Law Center and is an expert
as well around Social Security representation and echoed everything I
said, which to some degree again hearing it from Sarah Patterson in
Oregon \-- it can't be that off the mark, right? So, you know, we do see
these patterns and trends. We talk at a citywide group, and everyone
shares that experience. So again maybe not in Tennessee, maybe not in
other places, but certainly here in San Francisco we're fairly organized
amount advocate groups as well as Department of Health, and the pattern
is the same. It's not just coming out of either Positive Resource Center
or our clients or \-- you know what I'm saying? It really is a pattern
of practice.

MR. WARREN: Tommy Warren, Alabama DDS Director and \-\-- I'm not from
California.

(Laughter.)

MS. GELFAND: Can we sent our cases to you?

MR. WARREN: And I talk slower than most of us in Alabama. But it sounds
like there is a problem. You know, I can't speak for California. I will
say I will go back to Alabama and see if we have these problems, but we
meet with groups in Alabama a minimum of once a year on HIV. And every
one of you has hit on problems that we have throughout the community is
the disability process, and we need to work together to resolve these. I
always say we don't need to dwell on one claim as what's happened, but
the thing about the Terry process really disturbs me because I know I
handle those personally. If I know it's a Terry case or a dire need I
pick the phone up and call the DQB, and they're very responsive in the
Atlanta region; and, you know, I hope we can work together and resolve a
lot of these things that you're saying, and I'm definitely going to go
back and take a look because, you know, I think we need to look in the
mirror at the DDS and see how we can improve.

You know, I just want to say that, you know, I'm going to tell you
something about the CE process. Sometimes we don't buy a full
examination, and I get a lot of complaints and I'm the complaint person.
The buck stops with me, and a lot of times when we don't buy the full
examination and surely the doctor didn't see them the full 10 minutes,
but we follow a specific portion of an examination that we need to
document the file. And that is one of the most misunderstood things in
the consultive examination process, and I wish I could say I could solve
all your problems. I can't, but if we've got them in Alabama we're going
to know about them next week.

MS. GELFAND: Okay. Wonderful. Thank you. I know we're going to send our
cases to you. Sarah and I decided. We're all going to go to Alabama.

MR. WARREN: Do that and then \-\-- will have to send money for us to do
it.

MS. MOORE: Great dialog going on. Does anyone have anything else? Any
other comments from any other areas, any other states?

MS. GELFAND: Thanks so much. Sorry I went overtime.

MS. MOORE: Great dialog.

(Applause.)

MS. MOORE: Okay, Dr. Grossman. It's before lunch, so the pressure is on
you. Next we have Howard A. Grossman from American Academy of HIV
Medicine; and if he goes over we'll go get our lunch, and we'll come
back and he'll continue.

DR. GROSSMAN: I'll take a break.

**Presentation by Howard A. Grossman, MD**

DR. GROSSMAN: I feel like I have all this to live up to, that people
kept saying, \"Well, Dr. Grossman is going to take care of this,\" and
\"Dr. Grossman is going to do that.\" It's a real pleasure to be here
today. I was in San Francisco. As Paul already said we were just here
for a week for the retrovirus conference and the weather was so
beautiful, and then I went away. I got home on Sunday, and I guess you
guys had lousy weather for the last bunch of days, and now it's
beautiful again. So you're welcome. Just, you know, doctors think
they're God, right?

And I really would like to compliment, as I say, on these meetings. I
think they're really great, and I was really impressed by the
presentation earlier that recapped Philadelphia, because I think it
really captured a lot of the comments that I tried to make and that
other people were making, and I for one am not used to government
agencies listening this closely. So, you know, I really appreciate that
and I think you should be saluted for it.

So I'm going to go back to medical. So we got \-- we had what? We had
doctor, lawyer, lawyer, doctor, and then we have lawyer, right? And talk
about the HIV, but I wanted to start by just introducing the American
Academy of HIV Medicine. Dr. Volberding was representing the HIV Medical
Association. We're two groups that have formed in the last couple of
years to try to define a medical specialty around HIV and define what
goes into that.

This is our mission statement. The Academy is an independent
organization. HIVMA is part of the Infectious Disease Society of America
and dedicated to promoting excellence in HIV/AIDS care, and we do this
through advocacy and education. We're committed to supporting our
providers as well as insuring better care of those living with HIV and
AIDS. Our big goal is increasing access to care, and we have a
searchable list of HIV specialists on our website. So this is a resource
that you can use, and the website is aahivm.org and you can use that to
access doctors around the country, including in rural areas and things
like that. Really we have people in all 50 states. We work on insuring
the viability of HIV practices, and that includes publicly-funded ones
as well as private practices.

We try to lower barriers to people becoming specialists by centralizing
the process and providing the education that people need, and we're
continually assembling and updating a study guide that's really the most
current source of information about HIV. So that also might be something
you want to access, which you can do through our website. This year we
put out a two-volume set of basically everything you need to know about
HIV, all the core knowledge. It's full of resources, full of references.
It's an amazing thing. It was put together by about 50 of the top HIV
treaters in the country and run by Charles Farley who some of you in
California may know from LA, and just it's a really great resource and
it's going to \-- it's constantly updated, so it really is very current.

MS. GELFAND: Is that online did you say?

DR. GROSSMAN: You can buy it online.

MS. GELFAND: You can buy \-\--?

DR. GROSSMAN: At the Academy website.

MS. GELFAND: Okay.

DR. GROSSMAN: And you'll see on that website it's a great resource for
non-practitioners as well. All the important meetings are listed there.
There's a whole lot of resources that are sort of open resources. There
are some that are just open to members.

These are our chapters, and we represent about 1,800 members now. We
probably take care of about 275,000 HIV patients. If you look at our
membership it is pretty diverse. We have family practitioners, general
practitioners. We're about evenly split when you look at internal
medicine and infectious diseases, and we are \-- we were the first and
still probably the only organization that has nurse practitioners and
PAs as full voting members, equal members on the board, the whole thing,
because we feel that in those professions they have the proficiency to
treat HIV. They have the knowledge about HIV and they have qualified as
HIV specialists.

Our credentialing system is totally independent of membership. You don't
have to be a member to be credentialed and vice versa. It's audited.
It's psychometrically sound. It's free so far every two years, and
actually we've credentialed over 1,200 people at this point. You need to
have a valid license, that's part of our requirement, provide direct
care to at least 20 patients. And that may seem like a low number. You
know, it's kind of a magic number, 20 patients, 50 patients, whatever
you cite. The idea was that people need \-- that HIV specialists take
care of more patients \-\-- take care of them the better you tend to be,
but we did not want to loose our academics and people in \-- people who
are doing administrative jobs and people who \-\-- government who we
think are important voices in this field \-- and you have to take our
examine.

You can see the practice size. You know, we are not \-- we really hit
the middle providers, the groups of people with 50 to 100 patients,
which is probably the majority of people treating HIV out there. Ten
years ago we were trying to get all people in internal medicine and
general practice to treat HIV. That is impossible now because the
knowledge is too detailed, the science is too new. Trying to just \-\--
resistance testing alone the technology is totally new. It's not
something that people generally understand. It's something that we're
having to teach our own people about, and so it's not something a
general practitioner is going to be able to deal with.

Clearly trends have changed. You know, we saw this drop off in 1995 and
'6 as we introduced better therapies even before the cocktail. You know,
HARRT, highly active antiretroviral therapy, which some people refer to
as fairly actively antiretroviral therapy, which is probably more
accurate.

MS. : And FART.

DR. GROSSMAN: And we saw that drop off, but the trend is changing. The
curves have flattened out, and in fact if you look at the percent
declines here between 1997-98 in AIDS cases and AIDS death, you can see
that the decline has stopped. In fact in many areas that you see
increases in AIDS cases we're not seeing the increase in death as much
yet, although I have to say that there were several years \-- there were
about two or three years in there where nobody in my practice died, and
that's been changing for the last four years or so where, you know, it
was two people, then it was four people, last year it was about 10
people, and it's growing. As people have said, they're dying of more \--
of other things.

In fact the latest death in our practice is somebody who was waiting for
a heart transplant because he had a virally-induced heart failure. That
was a pilot, very active, and had a left ventricular assist pump for \--
you know, carrying this huge pump on his side for the last six or eight
months; and his HIV, we were doing really well with controlling it at
this point where it had never been controlled because we had him on good
meds, but he died of blood clots from, you know, waiting for this to
happen. Statistically of course as well, this only goes through 2000,
but we've seen an increase the number of people living with HIV, and
that's very important.

I would say here, you know, one of the questions that was asked is how
can we streamline the process and how do we make it more efficient, how
do we \-- and one of the ways that can happen is stopping people from
getting to the disability stage, period, and I think, you know, I'm not
going \-- I don't know how intergovernmentally you work on lobbying
other agencies and other branches of the government, but the Early
Treatment of HIV Act, ETHA, that's before Congress right now would allow
people who are HIV-positive \-- not having AIDS, but were HIV-positive,
to access Medicaid which would allow them to get drugs earlier. Which is
exactly what we keep telling people they should do, which would allow
\-- which would keep them from becoming disabled in the end. Okay? So I
think that, if you guys could push ETHA, that would have the biggest
impact on slowing the progression to disability.

People have talked about the realities of living with HIV. We keep
hearing stuff about the medicalization of the HIV model that's coming
out of DC a lot. You know, about the federal government and how people
want to medicalize it, and there are a number of non-HIV specialists
high up in government who keep talking about medical care for HIV as if
it's just about getting drugs and doctor visits and that's all it is.
But I think you've heard a lot of talk today about how the model for HIV
has to be bigger because of the things that we have to do there. In
hypertension, yeah, if you give me drugs and a doctor visit I could
probably control most people. I can't do that with HIV because we need
perfect adherence, and just on the language issue I would caution you to
use the word adherence and not compliance. Compliance is felt, you know
in this PC world, is felt to be \-\-- and to say that you're making
people comply. We talk about we've changed to adherence these days.

But really I've described HIV before and HIV therapy. It is complex
chemotherapy that you take at home every day on your own. Okay? It's as
complex as the chemotherapy that my brother, who is an oncologist,
administers in his office \-- making lots of money from \-- but people
do it at home alone, and that's really important to know. It needs a
stable environment, and people have multi-system dysfunction, and that's
very important.

This level of adherence is really vital. If you look at this slide \--
now this is an old slide that goes back to the days when we were using
the complicated protease inhibitor thing, but it's illustrative. In this
study you needed greater than 95 percent adherence to get 81 percent of
the patients in the study undetectable. So even having 95 percent
adherence didn't get 100 percent of people undetectable, and so you
really need about 100 percent undetectable. The problem is that most
people are in this area, between 70 percent and 95 percent adherence,
and that's the area where you get the greatest development of resistant
virus. So these are the people who are going to fail their regimens the
most, but look at these people. They're trying hard to take their
medicines. They're taking three-quarters to 90 percent of their
medicines. Okay? Which if you look at anybody who has got hypertension,
diabetes, and any of us who have taken antibiotics, you're lucky to
reach that number. So these people are trying hard, but they're not
getting there, and so if you \-- and it takes a lot of questioning and a
lot of work to get people up to 100 percent. You're asking people to be
perfect, and people are not perfect. People forget and \-- you know. So
that takes a lot of work.

In naive patients, you know, in new patients, we have a lot of choices,
and this is another thing. As people progress the medications progress
in toxicity. These are the backbones that the current guidelines call
for as the best drugs. Sustiva, \-\--, Kaletra, which is a protease
inhibitor, and you can see the side effects there. Patients who are
naive generally can take, you know, pills, less pills, less doses,
things like that.

But when you get an experienced patient this is the kind of regimen you
might have. Two protease \-- well, actually three protease inhibitors
that total 11 pills every 12 hours, two nucleoside analogs that are each
a pill every day, which is great, but \-- and relatively new, and them
something like Fuzeon, which is a new \-- a whole new class drugs, a
fusion inhibitor. It has to be given by injection twice a day. It has to
be prepared every day. It takes about 30 or 45 minutes to prepare
because you have to do it real slow so you don't bruise the protein.
It's really technically very difficult. It can cause painful nodules in
people. In fact, 95 percent of people have some kind of injection site
reaction. This not an atypical regimen for somebody who is fairly
advanced, so \-- and the disabling thing here, you've got Ritonavir,
Lopinavir, and Sequinavir, all of which can cause pretty severe
diarrhea, Ritonavir especially. You've got Tenofovir, which may be a
problem for people who have some kidney disease. Fuzeon as I said with
these injection site reactions. So you've got a whole lot of toxicity
involved just with this regimen.

There's a fallacy around I think that needs to be dealt with as well,
and that's that people who fail are bad patients; and in fact there are
lots of reasons why people fail, despite even being adherent. People,
there's a lot of person-to-person variation in how well you absorb the
drug and how your body processes it. We're only beginning to understand
that. There are probably sexual differences between men and women. There
are racial differences that we're only beginning to understand about how
\-- the levels of drugs that are achievable in people's bloods, you
know, depending on your genetic background. Absorption is different,
metabolism, and drug interactions have become increasingly difficult.
Another reason again for understanding and having \-- using HIV
specialists to understand this, because the interactions between these
drugs can be frightening. In fact, there are some drug combinations that
nobody can even predict what the outcome is going to be on any \-- we
just had a poster here at the conference using Kaletra and Amprenavir,
and they couldn't predict how it was going to come out, which \-- how
one was going to affect the other's level because there are so many
variables.

Paul talked earlier about the levels of drug resistance, and again, you
know, almost everybody I see these days who has been on treatment for
any length of time has resistance to something, and that makes that \--
that narrows our choices. Sometimes while we may have 17 or 18 drugs,
you can lose a whole class of drugs by having a single mutation. So you
get one shot, and three or four drugs may fall out. You can lose it. The
incidence of resistance that's transmitted is growing again, and that's
a problem.

We have to do testing right up front on people, and there are issues
specific to women that I think are not addressed in the regs. When you
look at T, if you are looking at T-cells in viral load as an indicator,
woman progress with higher T-cells and with lower viral loads than men
so that they need to \-- you need to look at the parameters differently.
We're not really sure where the cutoffs are, but there are a whole lot
of studies that are looking that have shown gender differences between
progression rates that are independent of economics or access to care or
anything like that. There really does seem to be a difference, just as
children progress with much higher

T-cells and much higher viral loads; and again women are smaller, and we
don't dose most of drugs based on weight. It just hasn't happened that
way, unlike again oncology, and so the effects may be very different.

You know, I think that it seems to me the efforts here are \-- you're
trying to quantify this objective. I mean, too much that I see on
disability forms leans too subjective, and so you get this stuff where
\-- you know, and let me say, I was saying here to Leslie, that doctors
are taught to quote their patients. I mean, a lot of people may not know
that, but when you're in medical school they teach you the best thing
you can put in chart is a direct quotation from the patient. That's the
thing that, you know, legally and just medically is the best thing to
have. So when we quote our patients on disability forms we're just
following what we've been taught to do. So while it may sound
subjective, that \-- it's sort of considered to be an important way to
practice medicine these days. But I think there are lots of ways that we
have tried to quantify medical outcomes because there's so much going on
about medical outcomes as far as, you know, trying to control costs and
insurance and all that stuff. So people have really been working on
this. There are whole disciplines.

I think part of it is asking better questions. I mean, the regs, you
know, again you have to be doing that substantial gainful activity.
Otherwise you're not disabled, and I think it's probably beating a
horse. You probably have to go \-- what we need is probably legislative
change to change that so that people who are barely hanging on by their
fingernails in order to \-- but still working, that we reward people who
are trying really hard to be productive citizens. We don't penalize them
by saying you have to drop out before you can \-- before we'll help you,
and I've seen a lot of people like that. You know, there are people
who've got two T-cells and they've had three opportunistic infections,
and they still go \-- and they have understanding employers and they
still try to go to work, and I think that you've talked about how you're
trying to change some of that.

Disability forms need to relate to what people do. We live in an
increasingly service economy, but we work with disability forms that are
based on factory and farm work, and we're not that country work anymore.
So for me to answer questions about whether people work foot pedals or
not, I mean, I've worked in factories and I've worked in warehouses. So,
I mean, I kind of know what that is. But, you know, it's not a relevant
category to me at all and, you know, whether people can crawl through
small spaces. I mean, how do I know that unless I set up a jungle gym in
my office?

MS. : That sounds like fun.

DR. GROSSMAN: But I do think this idea of using experts in a public
hospital system or whatever, where you could really \-- you know, if you
want to quantify these things that would make more sense to me rather
than \-- I mean, I think we're getting the same fraud that we got with
Medicaid, you know, 20 years ago and 10 years ago, and we still get I
guess in some \-- in a lot of cases, but in this Social Security
determination those people who make their living out of it.

Again, I think we need to expand the exceptions for inability to work.
You know, arduous work, people who are unskilled labor are disabled from
their profession. Why are they special? You know, the person who can't
take breaks and, you know, who is working in a clean room down in
Silicon Valley and can't get out without taking off 12 kinds of, you
know, coveralls has a problem with medications. And, you know, what
about a professional who is now only able to do sedentary unskilled
labor? What about the guy I had who was the medical director of a
pharmaceutical company and traveling all the world all the time? I mean,
what do we do? We put him behind a cash register somewhere. And I think
the body dysmorphics that we see, these severe, disfiguring things, you
know, I know we're not supposed to look and see whether people can get a
job, but if nobody in the entire country is going to hire you because
they think you look strange then doesn't that mean something?

The back-to-work initiatives that I see that are important, I think
again we talked about how HIV, lupus, things like that can be episodic
and variable, how we need to build in a way to judge that, and we have
patients who fail. We need to expedite reinstate for people. People need
to know that if they go off today, they find that a month from now that
they're disabled that they can get, say, an expedited review and it can
\-- or maybe presumptively it's reinstated until it can be reviewed
again. But there also is a big problem out there in people who went out
on disability because they have policies from private employers. If they
try to go back to work they will lose that policy from their former
employer. They will not be able to access a new disability policy, and
so there's every incentive for them to stay out because otherwise
they're not going to have any money. So I think that some way to either
offer those people some kind of future disability or keep them on the
same policy or whatever, even if we did something like we do with health
insurance where we let people assume it themselves. At least it gives
people an option of continuing a disability policy rather than losing it
completely and not having \-- never being able to get it again, and
part-time work I think you're addressing.

Pain syndromes are important. We see a lot of them in HIV. Neuropathy is
cramping the arthritis that we see. Aseptic necrosis that we have,
people whose hips are dying. We see that a fair amount in HIV. I think
we're seeing it actually across the board in medicine in people over 40,
this increase in aseptic necrosis, people who need hip replacements, but
we certainly see a much higher incidence in HIV. And these dysmorphias,
especially women who have large breasts, painful breasts, and men with
buffalo humps more than women, but both, and then muscle wasting that
can be very severe.

There are pain scales. They're out there where you can measure. There's
a very simple pain scale that's used in a lot of cases that has these
faces, and the patient just has to put an X on the face that matches
what they do. So you can actually quantify, you can come up with a
number for pain. And if you talk to the pain management people, and
there are a lot of experts out there now, they have a number of scales,
and I think that it would be good to include that on any disability
forms that a patient fills out. That's something that can be filed
serially over time. So again, it would give you an objective way to look
at that.

Central nervous system considerations,

Dr. Volberding spoke about some. We do see a lot of these
multiply-diagnosed patients, and I think if you look at who is going to
get infected in the future, the better our education is, people who have
multiple diagnoses are going to be disproportionally affected because
their education is not going to reach them. You know, a paranoid
schizophrenic is not going to listen to a fear-based message about HIV
prevention and, you know, I think we just need to \-- we need to be
aware that that's where the epidemic is headed in many ways, and even
our high-functioning patients that we see who are getting infected, a
lot of them have psychiatric diagnoses. You know, the people who are
using recreational drugs who are depressed, I mean, they're
self-treating depression with \-- sometimes with recreational drugs, and
therefore they end up getting infected because their ability to
negotiate safe sex is compromised.

Mild dementia again is really highly under-diagnosed. We don't do enough
neuro-psychiatric testing, and again there are well-validated
neuro-psychiatric tests that could be administered that can give
valuable information and that will pick up low levels of cognitive
impairment in people whose T-cells may be much higher than you would
expect. Our medications don't generally penetrate the central nervous
system, so changes are we will see more of this stuff in the future. And
our drugs, some of our drugs like Systevia have central nervous system
affects that can be really severe and disabling; and insomnia is
something that I see more than almost anything else.

Depression again, a lot of the people we see are depressed. They worsen
by treatment. We've been talking about hepatitis C a lot. Hepatitis C
can cause fatigue. We know that the treatment for hepatitis C is going
to cause fatigue, and Interferon-Ribavirin treatment which is the
current treatment is \-- can cause anemia to develop which can cause \--
the first symptom is fatigue, and Interferon itself makes people feel
like they have flu for two or three days. So two or three days out of
every week you're going to feel like you have the flu with fever,
chills, night sweats, and incredible, overwhelming fatigue. So just the
treatment is going to cause people to be disabled.

In Philadelphia I mentioned quality of life measurements, and you've
heard a little bit about it today. I really wanted to spend a little bit
more time on that, so

\-- and to talk about what those quality of life measurements look like,
because they're well-validated scales that have been used in multiple
\-\-- illnesses that could be incorporated into disability determination
and, again, would give you a number to put on a suggestive symptom.
That's something that can be followed over time, even in the same week,
and then I'll try to show you an example of how the quality of life
scales are used.

So if you look at symptom prevalence in patients with cancer and HIV
look at the what the top ones are. Depression, anxiety, fatigue, those
are the big symptoms in both kind of disease pattern, and you can see
majority of patients have those. Quality of life again, the subjective
conceptive, the way we think about it, but it looks at disease symptoms,
treatment side effects, functional ability, well being, sense of well
being, and also at functional impairment. The exercise \-\--, ability to
work, social interactions, and leisure activities.

So quality of life assessment tools. In cancer they developed the linear
analog scale that I'll show you, the LASA scale. Karnofsky performance
scale is one that we use in medicine a lot that actually is very easy
and very reproducible, and then you have things like the functional
assessment of cancer therapy anemia scale, the FACT-An scale. It's a
specialized scale. In HIV you can see there are a number of scales, but
the one that ends up being used the most in studies are the medical
outcome study HIV health survey and the SF12 and SF36. That just means
short form 12 and short form 36, not San Francisco 12 and San Francisco
36. You know these are like SF 30 \-- the SF scales I went and there's
actually a website of the guy who developed them, and it's been used he
said in over 9,000 studies for clinical outcomes. So these are very well
validated.

Before I go I'll just show you this. It's important I think to
understand how these scales are developed. We put together a group of
practitioners about two years ago to look at quality of life scales and
to try to see if what was out there was the best there was and to try
and understand them better. So we started in a room, there were about 25
of us, and we had some quality of life experts there. We started by
asking people what things do you think are important for quality of
life. We stuck paper all over the room. So we had like, you know, 100
different things. Then we started grouping them and narrowing them down,
and we came up with a bunch of categories.

Well, that's how they start with these scales. You know, the experts
have sat down, they put all this together, and then they try to figure
out \-- try to come up with sub-scales and how these different questions
fit into them, and then they take them to patient focus groups and to
practitioner focus groups and they see how well those questions
resinate. Then they go out and they test them, and they test them and
then they see statistically which scales matter. For example, in very
few of these scales is there any question about sexual activity, and yet
you would think that has a lot to do with quality of life. But when they
add the sexual activity questions in it doesn't change the outcome as
far as the scores go. So in order to try to keep it as simple as
possible they eliminated all those pieces that don't really seem to
affect the outcome when you administer them to a large group of people.
So there's a whole long process in the quality of life field that these
people have gone through.

One of the best experts in the country in HIV is a guy named John Wu,
W-u, at Johns Hopkins, and \-- I mean Albert Wu, I'm sorry, and Albert
\-- I mean, he just really goes \-- if you ever want to learn about
quality of life in HIV he's the person to go to, and he's great at
teaching about it. But it is a very involved process.

With a lot of these then you'll see some of the

\-\--. I'll show you. This is the LASA scale, and it's just a visual
analog scale. There are three questions, energy level over the last
week, daily activities, and quality of life, and basically you just put
a mark. It's zero to 100, but they don't see it there, and believe it or
not from visit to visit from time to time these three simple questions
are very reproducible and really can show you whether a particular
intervention has an impact on quality of life.

The Karnofsky performance scale is an old scale, and there are some
clinicians who think you just guess at the number, but in fact the
numbers are very well defined. Zero to \-- zero is dead \-- but zero to
100, and 100 is somebody who is totally normal with no evidence of
disease. Somebody who is 80 has normal activity with effort and some
symptoms. All of these are pretty clearly defined in general terms, but
they \-- again, it's useful to follow the course of a disease and as a
prognosticator.

This is from cancer, the FACT-G, six or seven questions in each of four
sub-scales that look at these areas that I think are so important to
what you're trying to determine: physical, functional, emotional, social
and family well being.

The global fatigue index, and people have talked a lot about fatigue, is
a useful thing simply for looking at fatigue. It assesses these five
fatigue dimensions: depression, perceived stress, activity of daily
living, health behaviors and clinical markers. You can se to what degree
does fatigue cause you distress. These are more particularly directed
specifically at fatigue. \-\-- see there are fatigue sub-scales and the
other measurements, so this is not something that I've used a lot.

The FACT, the cancer scale, the FACT-G scale was \-- they developed one
for HIV, and they have to again go out, take the scale, add some
questions, go out and validate it; and the FAHI scale looks at 27 items,
so there's 27 questions. There's 17 HIV-specific questions, and then
there are five sub-scales, and you can see them here. So what happens is
it's very hard to fake these questionnaires out because different pieces
of the question feed into different sub-scales, and you \-- and in
analyzing a scale like this, or we'll see in a minute the MOS-HIV, you
have to take it and it goes through a very difficult algorithm that in
fact you would do on computers. It's really easy to do it on a computer
to come out with the scale. So it's not something that a patient can
really fake you out with. We did these in our meeting. We did the
MOS-HIV test ourselves. We all came out fatigued, but \--

(Laughter.)

DR. GROSSMAN: One of the experts who was there, Patrick Sullivan, it
took him most of the night to do it by hand using his very complicated
spreadsheet, and he's, you know, one of the biggest experts in the
country. So really it's not something that people can fake. This is the
one that I've used the most and seen used most of the studies. Again, 35
questions. It took us between four and seven minutes to do this
questionnaire. Okay? So even doubling that for patients still gives you
something that can be done on a regular basis and gives you these 10
health dimensions, scales of zero to 100. These other ones, the 36
question, the 12 question health surveys, they are not specific for HIV.
They may be useful in some of the other areas that you're looking at,
and \-- but they have been well validated.

Now just to show you an example, CHAMPS-1 is a study that was done in
anemia and HIV looking at once-a-week dosing for erythropoietin, which
is a hormone that we administer by injection to people that was given
three times a week. So this was looking at one-to-week dosing, a very
complicated study. But basically you can see here this shows how the
drug worked. I mean, people went from anemia at this low hemoglobin
level to a normal hemoglobin level. But they also had a concurrent
increase in their quality of life, and in fact from this study we were
able to see that the biggest increase, the most steep slope in this
increase in this quality of life, happened at a higher hemoglobin level
than we would use to treat. So actually the company that makes this has
been using this to push people to use erythropoietin earlier. So you can
see an outcome here of quality of life that has something to do with a
measurably blood level.

This is not exactly the way the quality of life stuff is shown, but it
actually makes it more comprehensible to me. The quality of life people
for whatever reason wouldn't put a point at the top of each of these
bars, and they connect them with a line as if somehow it goes up and
down, which is not \-- it's counterintuitive to me. So this is the way
that \-- showing it, with the scale zero to 100 on the side and all
these dimensions, general health perception, \-\-- energy, quality of
life, physical/social distress, and so on. This just looks at the
baseline and after this treatment.

Now if you look here in general health perceptions, these people had a
12.0 increase in their general health perception quality of life scale;
and if you look in previous studies that were done 10 years ago, people
who resolution of the symptoms of microbacteria \-\--. So they
basically, you know, had a form of tuberculosis. Resolution of those
symptoms had a 15.0 increase in their general health perception scale.
So it gives you an idea of what this number means.

Here you see in energy levels people had a 17.0 increase. In previous
studies people who went from symptomatic HIV infection to asymptomatic
HIV infection had a 7.0 increase. So again there are lots of studies
that have used quality of life scales that give you a sense of what
degree these improvements are.

Here you have with physical functioning they had a 14.0 increase, and a
5.5 increase was what people got when they went from being able to do
limited activity to vigorous activity; and here there was actually a way
to predict the hazard of death in AIDS clinical trial group study from
the early '90s. People who had a greater than 1.0 decrease in
physical/mental health score had an increased hazard of death by 4.0. So
you can see that there is a significant difference here that could have
an impact on the hazard of death.

Now, so that's just an example I think of how we're using quality of
life measurements to really document a very physical outcome, and I
think that you could do the same thing. There are other scales that are
out there that are being validated as far as predictive things, and I
think you might look at those as well.

Eurosida is the big European AIDS group, multi-country, thousands and
thousands of patients. They've been developing a model that predicts how
quickly people may progress with HIV and what risks they're at, and it
involves a number. It's pretty easy to do. It involves T-cells, it
involves viral load, it involves whether or not somebody is anemic and
certain AIDS-defining illnesses; and it gives you a score and you can
predict from the score what somebody's risk of progression over a
specific matter of time is. This is all being validated, so it would be
hard for you to put that into a form, but it is something I think to
look at because it seems every conference they have more reports that
seem to really validate this.

So again, I think we need to make disability more job and skill
appropriate. We need to evaluate waxing and waning disease. There is
need for more neuro-psychiatric testing that can be done easily, and I
think incorporating these quality of life measurements would be
extremely helpful to me as a practitioner to have something to use. And
I'll stop there is anybody has any more questions.

MS. PATTERSON: Are those forms available online?

DR. GROSSMAN: Which? The quality of life forms? Yes, you can do searches
and find them. They're out there in the literature though. You know, if
you just do a Medline search or something like that you can usually get
the different forms. Anybody? You're all hungry.

MS. : Can \-\-- question?

DR. GROSSMAN: Yes. You wanted to ask me a question from Paul's lecture.

MR. EIGEN: Actually from their written comments. This is a completely
different subject.

DR. GROSSMAN: Okay.

MR. EIGEN: The HIVMA, we have a rule in our preface that says to
establish the diagnosis of HIV you can either use definitive lab
testing, or alternatively for example if you had testing anonymously but
it's obviously that you have HIV infection we can accept that. Whatever
the standard is in the community. The HIVMA recommended in their
comments that we drop that second criterion and that we require that
there be antibody or antigen testing to establish the diagnosis of HIV,
but it was \-- it stuck out in their comments because it's the only
comment they gave us that they didn't explain why they were recommending
it, and I'm wondering \-- I know this is putting you on the spot, but
\--

MR. GROSSMAN: Yes. I mean, I'd have to think why they recommended that,
unless they're just looking for people to have, you know, the most
definitive diagnosis before they do it. But, you know, with \-- do you
know, Steve?

DR. RAFFANTI: I think I \-\--.

MR. GROSSMAN: By the way, Steve has a national reputation, not just in
Tennessee, so \--

(Laughter.)

DR. RAFFANTI: Yeah. I think I know \--

MS. : Say your name first.

DR. RAFFANTI: Oh, I'm sorry. Steve Raffanti. I think that thinking was
that if anyone is treating anyone at the point where a disability
determination has to take place they should have at least a viral load
or \-\-- serology, and if they aren't there's something sort of odd. It
just doesn't fit the standard of care anywhere in the country. So I
think it was really that was written, you know, a long time ago when
viral loads didn't even exist. I mean, it depended on a serology, and
there were still a lot of states that did anonymous testing. I don't
think that applies now.

DR. GROSSMAN: I mean, that would make a lot of sense. I think if there
was some way to guarantee that the information you were getting was
complete and that it came from somebody who knew what they were doing
then that would be useful. I don't think we want to talk about
restricting people's access to care for people who can't necessarily get
tested \-- or access to disability.

MR. EIGEN: Well, I mean that's my question.

DR. GROSSMAN: Yes.

MR. EIGEN: \-\-- rule and I was surprised to see somebody suggesting
that we take it away.

DR. GROSSMAN: Well, I could see. I could see if you said something like
we won't stop the process waiting for that, but we are going to refer
you to a specialist who will make sure that you've gotten the
appropriate testing that's

\-- then your records are complete, the patient gets better access, I
mean, everybody ends up happier in that way, but I wouldn't \-- I don't
think I'd take out that thing that let's people into the system right
away.

Anybody else? Thanks for your attention. I appreciate it.

(Applause.)

DR. GROSSMAN: I apologize because I didn't have \-- I didn't get this to
the folks here fast enough, but if anybody wants a copy of this just
give me your card. I'll mail it to you.

MS. MOORE: Thank you. Okay. Lunch. We have a wonderful buffet lined up
in the hallway for you. We're giving you 45 minutes to go ahead and go
to the one of the restaurants or to have the buffet.

We have two more speakers left and then we'll go onto session two. We
are running a little bit behind, but we do want to make sure that you're
fed and you come back with energy. Okay? So let's come back at 1:45.

(Whereupon, a luncheon break was taken.)

[A F T E R N O O N S E S S I O N]{.underline}

(1:45 p.m.)

MS. MOORE: Okay. We have a change in the afternoon schedule here. Our
next speaker will be Eric Ciasullo \--? Ciasullo. Okay, great. He will
talk from the HIV/AIDS Return to Work Initiative, and you should have a
handout. If you don't have a handout let us know and we'll get one to
you right away.

MR. CIASULLO: Does anyone know what happened to the mouse that was being
used previously for \--

MS. : It was up there, but wasn't working.

MR. CIASULLO: It wasn't working.

(Adjusting the equipment.)

MS. MOORE: I apologize. I forgot to make a couple of announcements.
There are more slides from Jane's presentation on the table. We adjusted
the heat to make it just a little bit warmer, so you should feel that
shortly, and don't forget your evaluations. Fill those out before you
leave today. Okay.

**Presentation by Eric C. Ciasullo**

MR. CIASULLO: So between all these mics can folks hear me? Yeah? Good.
Because if not I can project. Again my name is Eric Ciasullo. I work
with the San Francisco Department of Public Health's HIV/AIDS Employment
Development Unit, or the EDU, which is a very small operation run out of
the Department of Public Health's AIDS office.

Just some other sort of background, not to bore you with affiliations,
but to give you a sense of where I'm generally coming from in this
presentation. I was recently appointed to the State Rehabilitation
Council which advises the California Department of Rehabilitation on
matters of policy and consumer advocacy. I believe I'm the first person
with AIDS to actually be on that panel, and it speaks to some of the
work that a lot of us have been doing to address the needs for
rehabilitation services for people with HIV and AIDS and also how the
system \-- how we're trying to help move the system to be more
responsive to our needs.

I'm the immediate past chair of the Board of the National Association of
People with AIDS, which is the oldest national AIDS organization, the
only one that is run by and for people with HIV and AIDS; and it's
really our mission to help provide an informed consumer voice in
decisions around HIV and AIDS to empower people with HIV to take charge
of their own best interests and to speak to policymakers and decision
makers about ways in which services are and aren't working for them.

And finally I work with a new national coalition called the National
Working Positive Coalition, or the NWPC. I'll speak a little bit more
about them later, but the NWPC is made up of people with HIV and AIDS,
service providers, advocates and researchers, and our mission is to
advocate for work opportunities and improve services to coordinate
information sharing and to promote research and experienced-based best
practices in employment services to people living with HIV and AIDS.

So why am I here to talk about the HIV listings? I'm not entirely sure,
but I think it's to make sure that \-- to give folks some incite into
some of the activities that are going on right now, both here in San
Francisco and to some extent on the larger scene, efforts that are being
made on behalf of people with HIV and being made by people with HIV and
AIDS to enter or to reenter the workforce. When we first started this we
were called the Return to Work Initiative. We're learning to excise that
from our vocabulary.

Really when we're talking about people with HIV we're talking about
transitioning to work or entering or reentering the workforce.
Increasingly when we're dealing with younger people, when we're dealing
with an awful lot women, when we're dealing with folks who are from
disenfranchised communities who have been economically marginalized,
many folks have never been in the workforce; and so they're encountering
the possibility of work after never having really been a part of what we
would consider the mainstream economy, and so return to work speaks
largely of folks like me. You know, I'm a 41-year-old gay white man. I
was diagnosed with HIV at 27, had AIDS at 28, was out of the workforce
and a Social Security recipient for about seven years. I have a private
education, private healthcare, and my needs and my experiences in many
ways are very different that the experiences of a lot of the folks whose
services I now administer and many of the folks that are coming in for
the first time to Social Security offices seeking benefits and/or are
trying to leave the Social Security rolls in search of autonomy and
economic independence.

A little background on the Employment Development Unit at SFDPH. Now
what button do I hit here?

MS. : Upper \-\-- the arrows.

MR. CIASULLO: This one? That one \-\--. This is my first time using
Powerpoint.

(Adjusting the equipment.)

MR. CIASULLO: Okay. That was cute. There we go. Back in 1999 this was
funded as the HIV/AIDS Return to Work Initiative. It followed a mayors
summit in '98 which really brought together \-- which brought together a
couple of hundred providers, advocates, and people with HIV to talk
about the changing needs of the epidemic, and there was an enormous need
expressed on behalf of people with HIV in particular; and I'll say
frequently it's people with HIV who were talking about their desire to
work, not necessarily our service providers and our advocates. The goal
of the initiative at that time and of my office is to develop and
deliver services designed to inform consumer decision making, assist
with the identification and coordination of appropriate training and
employment services. Since 1999 approximately 2,500 unduplicated clients
have been served either directly with our funding or by services that
have used our funding to leverage more funds. Overall we're talking
about 2,500 unduplicated clients. How's that? Okay.

Why an HIV-specific employment development unit is a question we often
hear. Why do we need HIV-specific employment services? Why do people
with HIV need targeted services just for them? Well, first of all,
unemployment disability among people with HIV is pervasive. While we
don't have good national data on this, and that's a problem that I hope
Social Security will address, it does appear that as many as half of
people with HIV and AIDS in San Francisco are unemployed disabled. It
appears nationally we're talking something like 50 to 75 percent of
people with AIDS and some smaller percentage, perhaps 25 percent of
people with HIV. In an old epidemic city like San Francisco that really
means about half of people with HIV. The desire to work among disabled
people with HIV is equally pervasive. Studies in '98 in Los Angeles
suggested two out of three unemployed or disabled people with HIV were
thinking about work. The following year in San Francisco our needs
assessment suggested that one out of three had an urgent need or desire
to reenter employment, expressed a desire to reenter in six, 12, or 18
months, with most of them falling in the six-month category. Driven
largely I'll say by economic necessity.

Current VR or vocational rehabilitation and workforce development
systems are rarely designed to serve individuals with disabilities at
all really, the VR system with episodic disabilities, and frequently
these systems have real problems around issues of cultural competence.
Some of this has been addressed well by Jane and others in talking about
the needs of LGBT individuals, the needs of transgendered individuals.
Frequently folks who have been economically marginalized aren't well
served by VR systems in general.

Though I will say as a sidebar that in San Francisco, in the San
Francisco District of the California Department of Rehabilitation while
I don't always see eye to eye with them, we really have \-- we're very
privileged to have a fairly different situation here. Fully 15 percent
of the clients they serve are people living with HIV and AIDS. They've
really been leaders on the statewide level and to some degree nationally
on doing really targeted outreach, including outplacement to people with
HIV. They have specialized counselors as well as counselors who serve a
wide variety of folks from the cross-disability community. But generally
speaking the VR systems in general have been if not openly hostile to
the needs of people with HIV they've been indifferent at best,
frequently misunderstand the epidemic.

What we've learned and what we continue to learn is that specialized
services provide culturally-competent safe zones for people to consider
work. It gives them opportunities for skills development, and those
services can serve as a bridge to other workforce development and VR
service systems. One of the things you'll frequently hear \-- and Jane's
organization, Jane and JT's organization, Positive Resource Centers, is
one of the organizations that does the most work with people with HIV in
San Francisco around workplace entry and reentry. One of the things
you'll frequently hear from clients within these services is had it not
been for an HIV-specific computer training or office skills training
they were able to attend in that site, they would still be at home
married to the remote. They would still be organizing their lives
principally around their symptoms. That it was only in a situation where
they were able to show up with their lipo, show up needing to go the
bathroom 10 times, knowing that other people had experienced their
issues and that the folks that were providing the services understood
their issues, that was the only way they were able to begin the road of
rehabilitation.

Next slide. This is fun. So another question I frequently hear is why
would someone who is receiving a guaranteed income want to work. People
who have been working in the same job for decades frequently ask me that
question. The bottom line is it's about poverty. When we started doing
our needs assessments back in 1999 I thought that many people would be
as motivated by a desire for greater meaning, a desire to be socially
useful, a desire to be more integrated. All of these values are in fact
values people talked about and held. But when I asked the question,
\"Why do you want to work?\" they laughed at me and they said, \"Because
I'm poor.\" And the reality is if you live in a community like San
Francisco in particular and you're subsisting on SSI, or even for that
matter SSDI, but if you're subsisting on a Social Security check you are
impoverished. You are living substantially below the poverty line. It's
almost impossible to even make your most basic rent payment, never mind
deal with food, never mind deal with clothing, never mind deal with any
other sort of regular financial needs. You can't pay for a roof over
your head. So I underscore that as broadly as I am because it's really
important I think for folks to hear from a consumer perspective that
while a disability check is an absolutely necessary piece to our
survival, it's nothing like a happy ending, and people have

\-- as I know you know based on the testimony that folks heard prior to
TWWIIA, people have overwhelming \-- people with disabilities
overwhelming have a desire to work.

Obviously there also issues of self-esteem and self-worth that come in.
People find it humiliating to exist on public benefits. They find it
extremely frustrating to be unproductive for large periods of times. The
experience of work is the single most normative factor in an adult's
life in our society, and so to not be working and to be subsiding on
disability income is to have sort of a permanent institutionalized
outsider status that really relegates you to the margins of our culture.

Fundamentally people also talk a great deal about a desire to give back
to the community. People are aware that when they've been existing in
these systems they've been the recipients of an awful lot of good well,
both government services, community-based services, enormous
volunteerism. You hear lots of people with HIV talk about a desire to
give something back and to provide something in the way of community
service as part of the employment or jobs that they're looking for.
Fundamentally work confers meaning, purpose, social identity, and it's
normalizing for people that are now being told HIV is not necessarily a
death sentence, though we'll come back to that as well.

Current programming. Last year we saw about 75 unduplicated clients
served, about 450 with the funds that we provided and an additional 300
leveraged elsewhere. The agencies we worked with: Positive Resource
Center in San Francisco which provides a broad range of employment
services and considering work services. UCSF Health Project, which is a
mental program. We provide short-term considering work, psychotherapy;
not because you need therapy if you really think you want to work, but
because many folks find that there's significant issues of depression,
anxiety. Frequently there is \-- I haven't heard anyone mention PTSD,
but I think that we're seeing that in increasing number and one of the
reasons we're seeing a lot of self-medication with recreational drugs.
There is often some significant mental health barriers to returning to
work. Jewish Vocational Service, which provided career counseling. Over
the course of the last five years we've actually worked with a few other
agencies that are not currently part of that portfolio. The IM Cares is
an organization which really works mostly out of the unions. We were in
and out of a cooperative agreement with the State Department
Rehabilitation. I look forward to the day that we're back in a
cooperative agreement with them. The services that we provide include
considering work, short-term psychotherapy, vocational career
counseling, service brokering coordination, job readiness work
adjustment services, job skills, job search training, job development
and job placement services, all to the tune of less than \$200,000.
We're talking a very small program here. Of the 750 that were served out
of PRC \-- and I'm using their numbers largely because the services that
we provided through Jewish Vocational Service and AIDS Help Project were
largely duplicated clients in PRC system. 143 were permanently placed in
jobs and 373 found temporary placements. Now those numbers are actually
really significant.

What we know from the data that proceeded the Ticket to Work and Work
Incentives Improvement Act of 1999 is that despite the fact that 75
percent of people with disabilities aren't working, a majority of them
say that they want to work, less than half of one percent of people with
disabilities leave your roles every year. Well, just at this agency that
we contract we saw something to the tune of 1.5 to 2.0 percent of people
with HIV who were disabled in San Francisco got placed in permanent jobs
last year.

That's an extraordinary amount of bang for the buck. I would love to see
Social Security invest in some way more significantly than what's
currently happening with the almost entirely not-working Ticket to Work
aspect of the Ticket to Work and Work Incentives Improvement Act, but
literally you all saved about \$1.2- or \$1.5-million if those folks
stay in the job for more than a year, and you didn't give us anything
for it. We put about \$200,000 in and I think we leveraged another 3- or
400, but all together an extremely cost-effective program.

For the 373 temporary placements that don't actually save you any money
in the short run, those are often folks who are on the road to full
employment. Those are folks for whom essentially supplemental income has
been gained, and frankly one of the things we really need to be talking
\-- and one of the reasons I think it's important for us not to talk
about return to work but transition to work is that for many of the
folks that we're talking about living with HIV and AIDS in this country
the best outcome for them may very well be periodic part-time placements
under the SGA that allow them to supplement their income in essential
ways that will improve their standard of living. It will extend their
lives. It will improve their health outcomes. It will socially integrate
them. Their health status and mental health status will be wildly
improved, and we need to look at those as successes even though no one
is going to reimburse us under the Ticket to Work and Work Incentives
Improvement Act for it.

Overall demographics, just a little myth debunking. As folks may
realize, in San Francisco our epidemic looks largely like what the
epidemic looked like 15 years ago. It's a largely white, largely male
epidemic. In fact, many folks felt that the folks considering employment
services would be folks who tended to be sort of middle-class white men,
and that this wasn't necessarily service that was going to be needed.
What we found that \-- to other folks in our system. What we found is
that in our needs assessment a desire to work was expressed equally
across all categories of sort of race, gender, socio-economic status. If
anything the folks that had had a really successful work history in the
past might be somewhat less likely to return to work or to reenter
employment since many of them were in fact benefitting from private
disabilities policies and may in fact have had other opportunities for
meaningful engagement and may be more \-- less willing to risk the
threat to their health of actually destabilizing their system of care
and reentering employment.

Overall, the three lines that I show is the total HIV/AIDS cases, this
sort of mustard-colored bar, and the sort of maroon or terra cotta bar
in the center is folks who are in the Ryan White Care System. Those are
folks who receive \-- I know. I'm gay. I use funny words for colors.

(Laughter.)

MR. CIASULLO: I saw you all snicker at terra cotta.

(Laughter.)

MR. CIASULLO: As folks know, as folks probably realize, folks who are in
the Ryan White Care System are folks who have no other means. This is
the payer of last resort for medical care for folks. They tend to be
poor, and then the yellow bar is folks that we served, actually paid to
serve through the EDU. You will see that while they tended to \-- that
there was a larger percentage of folks who were white than in our care
system, less than the overall epidemic. Generally speaking there was a
dip in terms of service to African Americans in the care system and a
very small one among Latinos, not necessarily statistically significant.
We can talk to a statistician and run that through. Generally speaking
the demographics that we served looked more like our care system than
the overall population of people living with HIV/AIDS in San Francisco.
In terms of sex and gender, fairly similar we saw around race.

What's interesting I thought in this when we look at income \-- we don't
have good income data for total HIV/AIDS cases in San Francisco. So what
I compared in this case was the folks in our care system, the folks
served last year within the Employment Development Unit, and the folks
who were new to services in the last six months of last year. And if you
look at the first two factors, folks that are under 5,000 and the folks
at 5- to 10,00, those are folks largely \-- the folks that are under
5,000 are mostly on county assistance. The folks that are 5- to 10,000
generally speaking are on SSI.

What we're seeing here is a flip. Folks are tending poorer, or are
trending poorer as they come into services, and I think this could speak
to a lot of things. I tend to think it speaks to the dynamic that Jane
mentioned earlier around folks not getting benefits when they initially
apply. They're relying on county assistance and there are some really
profound implications for that in terms of their health and their
ability ultimately to be successful in rehabilitation and employment
efforts, and so we've really got to clean that up. Most of the folks
that are actually in that under 5,000 amount, eventually they're going
to end up on the Social Security rolls. Eventually they're going to be
there, but along the way enormous harm is happening to them because
they're subsisting on 300-and-change coming out of the San Francisco
County coffers; and as an employee of the city and county of San
Francisco I got to tell you our general fund is really hurting, and to
be providing financial benefits to folks who really should be accessing
twice \-- benefits that are twice as high from the federal government is
extremely harmful to our community.

A lot of you I think are very familiar with this, but let's just run
through what some of the presenting barriers to employment are for the
folks that we're serving. Ongoing, obvious ongoing and episodic health
issues and concerns about the impact of work on health status. People
with HIV \-- and I'll speak for myself as well. People with HIV in this
country experience an enormous sense of profound vulnerability around
our health. When I hear folks talking

\-- who was it? What is it Hayley earlier who was identifying

\-- it was either Hayley or Howard, talking about sort of where we are
right now in the epidemic with the possibility of extended lives and
severe \-- however, severe symptoms from medication and the disabling
side effects of medication. It's really interesting to me, because in
many ways I hear this. As someone whose been around and been living with
AIDS for 15 years I hear the same script in 2003 \-- or 2004, excuse me,
that I heard in 1990. In 1990 before these listings were written I was
told, \"It's a new day in HIV. It doesn't necessarily mean you're going
to die because you've tested for positive for HIV. There are new
treatments that are showing profound hope for the future for this
illness.\" Well, I'm one of the 17 percent of people with AIDS diagnosed
in 1991 in San Francisco who is still alive. So I sit in a place of
incredible privilege, and I also sit in a place of profound skepticism
about what the long-term efficacy of these treatments are going to be.
This is a better time. People are dying more slowly. Many of us are
showing incredible gain from these treatments, but let's not fool
ourselves. The epidemic wasn't over in 1990. It wasn't over in 1996.
It's sure as hell not over in 2004.

When Howard ran through a discussion of the medications that folks have
to take, and I saw some folks sort of go, \"Oh, God. That seems like
it's a lot.\" Well, he also didn't mention the two drugs that I'm on for
my lipids and my high cholesterol, the antidepressants that I take, the
anti-diarrheal agents. I take about 17 pills twice a day.

MS. : Pain medicine.

MR. CIASULLO: Pain medicine. I don't take pain medicine that often.

MS. : Good.

MR. CIASULLO: Fortunately. I do take two drugs to deal with a chronic
migraine condition. I mean, you know, and it goes on and on. I mean, I
take so many meds I forget what they are, and I'm very common in that
story. I update my med list every six months, and fortunately I have
computer skills so it's not that difficult, but it's a very complicated
regimen. It is not clear cut what is going to happen, and so folks \--
so just presenting, just walking in the door thinking about employment,
what stops people in their tracks is fear. Terror that they're not going
to stay as well as they might be, that they're not well enough, and that
working will be destabilizing to what comfort they've found; and I say
that as an advocate for employment. So in the context of how we develop
regs and then meaningfully and consistently employ those regs, it's
really important to sort of start with the profound understanding of the
desire to work and the barrier that health status actually imposes on
folks who come in with the disabling diagnosis of HIV. Obviously we've
talked about issues of treatment adherence and side effects.

The issue of loss of benefits and health insurance has only really
partially been addressed by TWWIIA. I'm a big fan of TWWIIA. I'm
thrilled that it got passed. I wish that it had been a lot more
far-reaching, but let's talk about the problems with TWWIIA. First of
all, even in California where we have a lot of \-- we have a very
organized \-\-- disability community and really good advocacy. We've had
a hellish time employing a working-while-disabled bill that will allow
people to access Medical, our Medicaid, and we're one of the lucky
states where we actually have a decent law on the book and have
advocates constantly pushing.

The issue of expedited reinstatement is really a problem, folks. It's a
good regulation. The extended period of eligibility seems like it's
working pretty well. The expedited reinstatement is really a problem and
not working for folks across the board, and when it fails for one person
it might as well \-- you've sent a signal to 1,000 more that they're
taking literally their life in their hands by risking suspension of
their benefits. Obviously concerns about losing access to other social
service programs in a community like San Francisco where housing is at a
premium housing subsidies are something that we simply can't afford to
set aside, and the reality for too many people is that access to housing
programs, food programs, and other support programs also are a profound
barrier to employment.

A need for job-related education and training, I spoke a little bit
about this within entry to the workplace, and for folks who aren't
aware, I was at a conference last spring I guess around \-- as we were
getting ready for the stage three rollout of Ticket to Work, and at that
point we had basically two-thirds of the states had had a rollout, and
of the beneficiaries who had received tickets in the mail less than
half-of-one-percent of beneficiaries had assigned their tickets. So
before TWWIIA less than half-of-one-percent of beneficiaries were
returning to work, and after TWWIIA less than half-of-one-percent of
beneficiaries had assigned their tickets. There's something profoundly
wrong with the problem. I'm not sure if we're going to be able to fix
it. I think it was pretty pie in the sky, all due respect to my friend
Brian McDonald who helped \-- who was one of the architects of this
program. The repayment scheme for the Ticket to Work is just so
unworkable as to keep most community-based organizations out of the game
completely, and certainly it's not going to get anyone to start services
up if they have to wait two or three years without any promise of
reimbursement.

And finally the need for employer training, fear of disclosure, and
concerns about stigma in the workplace. If anyone doesn't think we still
have HIV stigma in the workplace talk to Hayley Gorenberg at the next
break. As some of you may be aware, Hayley was the lead attorney taking
on Cirque de Soleil in the highly-publicized case of an acrobat who was
fired from his job at Cirque de Soleil because they found out after \--
he had acknowledged when he was hired that he had HIV. He went through
his training. He was cleared on the performance, and then when some
middle manager in HR decided that he was HIV-positive he wasn't \-- he
was a risk to his fellow performers and to the audience. Now this is
Cirque de Soleil, probably not the last bastion of conservatism. Not a
place you equate with bigotry and ignorance, and yet in this very
publicized way this gay man with HIV who was highly skilled, a
high-performance athlete, top of his field, fired, outed, had to fight
publicly for reinstatement. It took over eight months, lots of good
attorneys, really big community mobilization. He's a hero, but what's
the message to an HIV-positive worker who isn't necessarily walking into
what they consider a really enlightened employer? Do they disclose? How
do they disclose? If they disclose what happens to them? Continuing and
ongoing barriers to employment.

So that was the gate. Here's where we are still. Despite what we're
seeing as some really significant successes on the part of people with
HIV/AIDS to enter and reenter the workplace, certainly we're not seeing
the numbers reentering that a lot of us anticipated and hoped for, and
certainly not to the extent that lots of people with HIV identified that
they wanted for themselves. Why? It's harder than we thought.

I about two years ago needed to take a three-month leave \-- thank you,
FMLA \-- so I could deal with some really profound side effects from the
drugs, and then six months later was out for another 10 months because
of a treatment failure. So that's just my experience. I'll just start
there. I thought after seven years out, returning to a good job, I was
going to get to \-- it was a straight line. I was gone. I was back. Time
to start my life again. Not the way it works for most people.

The services that we currently have are hobbled by patchwork, uncertain,
and diminishing funds. I say that over and over again. I'm surprised I
had to look at it. Patchwork, uncertain, diminishing funds, meaning that
the services that we have are bankrupt beggars at the gate. There are
only a half-a-dozen programs like Positive Resource Center in this
country, and all of them, including PRC, have faced the possibility of
closure in the last couple of years because funds have been yanked,
funds haven't been replenished because demonstration projects haven't
been maintained, and the reality is without these services many people
with HIV won't get to the front door.

The ongoing difficulty and in some ways the exacerbated recent
difficulty that SSA beneficiaries have had in accessing funds is an
extreme disincentive to them to risk employment. It's also an extreme
disincentive to their colleagues and peers in risking suspension of
benefits. The issue of expedited reinstatement requests is something
that I've already addressed.

SSI's two-for-one provisions, you know, I think that there's two camps
here. There's the folks that say we need a demo project that will have a
two-for-one under SSDI and see how that works. I don't know why we
didn't craft an elimination of two-for-one on the SSI side. If you're an
SSI recipient and you're making, what, 673 shall we say? Is that a
reasonable number? What is it?

MS. : I think California is 790.

MR. CIASULLO: 790.

MS. : Federal 585.

MR. CIASULLO: So with the two-for-one elimination and then add a tax
burden to that you're probably earning something like \$.30 on \$1.00.
That's not a very good work incentive. That's kind of a crummy work
incentive, and particularly when you're talking to folks who've had a
very limited work history which are your SSI beneficiaries. We're
talking about putting them off and into relatively low-skilled jobs that
are often high-stress jobs and are often physically demanding jobs, and
their \-- we've really got to ask ourselves whether the \-- I think we
need to ask ourselves whether the two-for-one clause is a meaningful
indication that Social Security wants to assist people on SSA in
entering the workforce.

And then finally, poor tracking mechanisms at SSA almost guarantee
overpayment issues. You know, I don't know anyone who hasn't had an
overpayment problem. I also don't know anyone who has followed Jane's
advice and set up a separate savings account so that they can put the
money that's the overpayment into a bank account collecting interest so
when you say, \"Oops, you owe us \$15,000. Please send it to us next
week,\" that they're really going to be in a situation to do that. It
isn't just human nature. Obviously human nature is we all live beyond
our needs. No one, I dare say that most people in here have had some
problem with over-extension with credit or have had some problem with
paying their bills. But when you're dealing with folks who have been
living at a subsistence-level income who are suddenly marginally flush
with cash and taking on new responsibilities in the world without
necessarily having any money management skills, it's completely
unrealistic and punitive to expect that folks are going to respond \--
five minutes \-- responsibly to issues of overpayment.

So here are some considerations that are specifically work related. I'm
going to need a few more minutes. SSA really needs to insure that staff
at all levels have a full and complete understanding of the Ticket to
Work and Work Incentives Improvement Act of '99 in particular.
Consistency has to be assured around extension of CDRs when appropriate
and the expedited reinstatement of benefits. This isn't happening in
field offices, nor are we seeing trained work incentive specialists
really getting rolled out in a meaningful way so that people can get
accurate answers in a timely manner to questions in a consistent way.

Around program activities I'd love to see SSA consider developing better
tracking mechanisms and automated tracking mechanisms. This isn't rocket
science to be sending folks reminders and to make sure that folks \--
that you guys are keeping track of folks' trial work period rather than
expecting that they're going to start banking when you've stopped
tracking or when you catch up. Allowing continued medical benefits for
former beneficiaries regardless of current determination of disability
status. Obviously access to medical benefits in an ongoing way is going
to go a long way to insuring that people work if all possible.
Establishing demonstration projects to determine impact of eliminating
the two-for-one in SSI, and we really need this in a big way and I think
you do, too, to find out what are the numbers; who is working, who is
not, who needs to, what do we need? If we really want to encourage
people with HIV to enter the workforce then we need to understand at a
population level what's really going on.

Around policy, talk to HRSA. Right now we're not spending a dime on work
reentry. We're spending \-- how many billion? Phil, how many billion?
Three billion? We're spending billions on medical services. Two billion?
We're spending billions on medical services that presume that people are
permanently and completely disabled, and that permanently and completely
really means forever and keeping them in an object of total dependence.
We need to start talking about helping people have an exit strategy
and/or work \-- just assisting them in working when they can.

You guys are in a position to convene a federal taskforce with
representatives from HRSA, HUD, Labor and Education to figure out how we
can come up with some meaningful employment supports for people with
HIV, and as other folks have said \-- you know, I don't know what your
capacity is to this internally, but we're all well served by having a
more seamless package of medical benefits for people with HIV, and in
the current \-- let's just talk about the ADAP crisis for a second. When
I left, when I had my benefits suspended and went back to work, I knew
that I could go back to ADAP if I needed to. With California facing the
possibility of 1,400 people on a waiting list at the end of this year
you couldn't even have started a conversation with me about entering the
workforce. I would have gone so far underground; there's no chance in
hell I would have risked my life for a paycheck, and that's what the
ADAP crisis means to people with HIV in this country.

Okay. I got to do it. It seems like it's my job to talk about this. Side
effects and symptoms, I swore I wasn't going to talk about diarrhea in
public again, but some of you may have noticed that I got up 10 times
during this meeting, and you might have thought I was just being rude.
That's what it's like. What's it like is you can't stay in your seat
sometimes for more than 10 or 15 minutes at a time. When we talk about
\-- I'm going skip ahead. We talk about the need for \-- if I really
knew how to use these, this Powerpoint thing, I'd have headaches explode
in big type and recede, and then do the same thing with fatigue and
insomnia. If you want to know what diarrhea really means that's what it
means. What it means is you can't get through a work day. There aren't a
lot of places in which you can actually work if you have to get up and
leave your work station 10 or 12 times in the course of a day. This is
an extremely common manifestation of HIV disease or of HIV medications.
I for the life of me have never really been able to tell the difference
between side effects from the meds and side effects from HIV. I don't
know how Social Security thinks you can. I know my doctor has a hell of
a hard time doing it, and we've really got to remove any kind of
exclusions or restrictions that somehow diminish the impact of side
effects of meds and make that less meaningful than the side effects of
HIV disease.

Lipid disorders. I can't wear a shirt and a tie. It's not just that I'm
a casual San Franciscan. It's that when you start developing buffalo
hump you start outgrowing shirts and you can't button the top button. So
the reality, and fortunately I'm not in the place where I'm horribly
disfigured yet, but as Howard said, well, I know you can't really say
someone is disabled because they look funny. The reality of trying to
work in many work environments when you have disfigurements that are
associated with HIV disease is that it is simply impossible or highly
strained at best. You guys have heard this from the docs.

I won't go on too much more about this. The mental illness listings
we've talked about. I'm going to run through these really quickly. These
are actually part of the comments that the director my department, Dr.
Katz in the Department of Public Health, actually submitted. It was part
of a workgroup that came out that Jane and some others were a part of.
I'll run through these, and let me just close.

As I said earlier, you know, I come to this as an advocate for
employment. What I do most of the day most days is talk with providers
to encourage them to encourage the folks that they work with to seek
vocational rehabilitation and employment opportunities. I speak with
consumers who are interested in returning to work. I've been pushing on
this for five years, and so it's ironic to me that I've been working now
for the last year or so with folks around the revised listings. I'm
really grateful that Social Security has taken the time to do it and
frankly really honored to be part of the panel that has presented.
You've been very fortunate to pull together some of the best minds in
HIV medicine and in HIV advocacy and legal representation in this
country.

But let's be really clear. From where I'm sitting all of our efforts to
encourage people with HIV to enter or reenter the workforce will fail if
we don't make sure that the safety net of financial benefits is intact,
if we don't assist people in getting onto benefits from the time that
they apply, if we don't have presumptive diagnoses, if we don't follow
the presumptive diagnoses codes, if we don't follow through with the
reforms that were fought for with TWWIIA of 1999. It is impossible to
sustain vocational rehabilitation efforts and it is life threatening to
pursue employment to the suspension of benefits if you do not have some
sense of certainty that you will in fact be able to rely again on the
safety net.

So I urge you to follow the slides that I'll submit for comment. A lot
of what I'm saying is really consensus with most of the benefits
experts. The docs are agreeing with it. Clearly we need to expand the
listings, not restrict them. Clearly we need to pull stuff out of the
small print and start bulleting meaningfully what some of the side
effects and symptoms, and really we need to start investing some serious
resources and training staff more effectively around the existing
regulations and the reforms of '99. Thank you.

(Applause.)

MS. MOORE: Okay. Last but certainly not least is Leslie F. Kline
Capelle, HIV & AIDS Legal Services Alliance, Inc.

**Presentation by Leslie F. Kline Capelle**

MS. CAPELLE: I've only been sitting up here all day.

(Laughter.)

MS. CAPELLE: One of the things that I always share with my clients is
something that I was told in law school, and that is when you have the
law you pound on the law, if you have the facts you pound on the facts,
and if you don't have the law or the facts you pound on the table.
Sometimes it gets a little loud in those hearing rooms.

Basically I have been \-- I sort of fell into HIV/AIDS Social Security
representation by accident; namely, I lost my other job and this one
hired me. I've been doing this almost six years, and in that time I have
sustained a success rate of almost 98 percent. Now I don't really take
the credit for that. I have seen some cases, as people here have
elaborated, that never should have come to me. Because of our staffing
situation the cases that I see tend to be at the recon or recon denials.
I have yet to take a case at the appeals council that has first come to
me. Usually those are the cases I represent at a hearing, and in those
six years I've only had to take one case into Federal Court, and we were
very lucky to get a remand and the client won on his second hearing. He
also won on a subsequent application.

Some of the things that I've seen, however, the worst one, a couple of
the worst horror stories? Malpractice is not cost effective for Social
Security, and what I see with some of those consultative medical
assessments and some of the testimony about medical experts is really
nothing short of malpractice. One of my clients, a very thin, petite
woman, the consultative medical exam conclusion was genetic male,
question mark, which meant that there had been no examination. In the
eyes of this individual no one with HIV could be female. The residual
functional capacity assessment was based clearly only on that CE,
because that was the same conclusion. So we had to take that case into
hearing. We were able to get the client's physician to testify at
hearing for us for free \-- because I work for a non-profit. We don't
have a budget for that \-- and I had to ask him the question, and his
answer was, \"I've examined her. She's female. Next question.\" And in
that case fortunately we had a very good ALJ and she was able to win her
case.

One of my hearings from 1998, we had two chest

x-rays verifying pneumocystis pneumonia. I submitted extra copies of
those to the judge with a request for a decision on the record. I never
got a response. We went into the hearing. The judge began the hearing by
accusing my client of faking his symptoms because there was a reference
by a case manager that he might be exaggerating. We went through the
entire hearing. We got an unfavorable decision because of substance
abuse, namely PCP. We got a reversal from the appeals council, a full
reversal in less than five months, which is a record as far as I can
tell. But these are some of the things that we have seen. Now granted
the PCP case was in 1998, but we continue to see those level of errors.
We continue to see medical experts testifying. I had one, he \-- the
medical expert actually testified that if my client felt well enough to
masturbate then he was well enough to work. It is a clear indication of
bias. My client almost took a swing at him. Fortunately again we had a
very good judge. The judge dismissed the medical expert and approved the
case based on mental health, and the medical file was probably about
four to five inches thick.

I had one client who had six separate listings. He met six listings. The
listings at M says that if you've been hospitalized three times in a
year for pneumonia that's a listing. He'd been hospitalized five times
in one year. He had neuro-syphilis, he had severe skin rashes, he had
\-- you name it, this poor gentleman had it; and yet we had to go all
the way to the ALJ hearing. His file literally was over six inches
thick, and the medical expert \-- by the way, the same one that made the
masturbation remark \-- had a single sheet of paper in front of him with
two little squiggled lines on it, and those were all of his notes from
reading this entire file, and he complained twice on the record that the
file was overwhelming. So I scribbled my client a note and I passed it
to him, and I said that means he didn't read it. We were able to win the
case, but it had a lot to do with the fact that my poor client had a
diarrhea incontinence accident during the hearing.

So these are individuals who never should have come to me. These are
individuals who had clear medical \-- and some of the judges, what they
harp on is objective medical evidence. You know, we talk about some of
these methods of really sort of measuring fatigue, pain. I inform
clients, you know, \"If you want to keep a diary. A diary, that's great
with me. It gives us a very clear indication of what's happening in your
normal day.\" But a lot of the medical experts and a lot of the ALJs
want something that they consider to be objective, and they consider
self-reported statements of pain, nausea, fatigue, to be somehow less
than objective. But we come in with cases that have that level of
laboratory and other clinical evidence, and yet these individuals are
still being denied.

Now, I don't want to make a blanket statement about DDS, but I recognize
that these are individuals who have an enormous amount of work in front
of them. I mean, thousands, hundreds of thousands of pages of medical
records, and for us to expect of them to be able to get through all of
that I think is a little generous. I think that they are understaffed,
and I think as a result of that, as Jane and some others mentioned, it
may literally be easier to deny the case and get it off the desk than to
have to spend the additional time, because quite honestly I don't think
they have the additional time. I think that when Social Security looks
at some of these recommendations we've made from a purely cost benefit
analysis there is some support for recommendations that we've made. If
Social Security \-- and forgive me. I don't know whether some of these
cost benefits analyses have actually been done. But if Social Security
were to look at the cost to the agency of a case which is approved at
the initial application level versus the cost to the agency of a case
that has to go all the way to ALJ and then it is approved obviously if
the agency were to spend slightly more money at the initial level \--
and I think the recommendation of regional medical specialties within
DDS is an excellent one, especially if Social Security has the
technology to electronically transmit files. Now all of a sudden we can
get a significantly better medical assessment by someone who is
considerably better qualified, and if the case is approved it is at far
less cost to the agency than if it's two years later. The client's
health has deteriorated, possibly there are higher medical bills because
there have been hospitalizations which Medical or Medicare are going to
have pick up, and the person's overall health has a better chance as
Eric was saying of remaining stable or even improving because they got a
higher quality of care earlier in their process.

I also think that, as has been said, the cost to the agency of
consultative examinations simply is not feasible. We see the cost to the
agency of maintaining itself and of staffing itself, but the quality of
the reports \-- and again as has been stated, you know, if I'm looking
at cases at the ALJ level obviously I'm not seeing the cases that were
approved at the initial level. So my perspective is perhaps a little
stilted, but the quality of reports that I see, and I see reports over
the same signature with word-for-word language, that is not efficient to
the agency. And if the agency as a matter of policy were to first send a
request for examination to the treating source and only if there is no
response let's say within two or three weeks send it to a CE and
hopefully by then it's, you know, one of these electronically
transmitted so it's someone who is hopefully more knowledgeable in HIV
and AIDS medicine. But if there were to be a CE report \-- I shouldn't
say CE. If there were to be a report, an examination requested by Social
Security that's conducted by the treating physician and that report
comes back that the claimant is not disabled according to Social
Security's rules, now all of a sudden the claimant's case is not as
strong as the claimant may believe, and Social Security has a much
better chance of proving that that individual perhaps is not eligible
for benefits under their rules. Because now the report that's been
submitted on which their denial is based is by a treating source rather
than a consultative source. The cost to the agency is the same as far as
having the exam conducted, but the probative value of the report is
significantly greater. So that might be something that is possible as
Dr. Grossman and I believe the other doctor had mentioned as well if
some of those requests can be transmitted via email. I think the
response by the medical community is going to be better.

Let's see. One of the things that we've obviously talked about today and
we certainly stressed in our comments is the recommendation that medical
experts for Social Security hearings be HIV/AIDS specialists. Some of
the experts that I've seen have been pediatricians, orthopedists,
someone who specializes in sports medicine and testifies less than five
percent of his cases are devoted to HIV. That individual, I had two
cases with him in the course of a month, both involving severe
peripheral neuropathy. In the first case he said the client did not meet
a listing, even though we had neurological sensory tests that showed
nerve ending damage, because there was no visible impairment. There was
no evidence that this was affecting his life in a significant way.
However, at the other hearing his testing was the client didn't meet a
listing. That client also had the neuropathy \-- excuse me, the
neurology test reports, and he was in a wheelchair. Basically what I was
doing in that case was that I was getting permission from both clients
so that I could get the hearing tape and use it to discredit him in both
of these hearings because in both cases we ended up having to come back
for a subsequent hearing. So here is an individual who purports to be a
Social \-- who purports to be a medical expert testifying in an area
where he really has no expertise and really he has no credibility.

So Social Security I know is in the process of attempting to have
witnesses appear by telephone, and I know there are technological
reasons why that hasn't been set up yet. I think we would have a
significantly better chance of getting treating sources to testify as
experts if they electronic technology was available. My agency can't
afford to pay them a consulting fee for them to take the time out of
their day and come in and testify, but they would certainly be willing
to do it if they could do it by phone. So I think that is another method
where Social Security could significantly improve the quality of
evidence in an HIV case, and some of these suggestions obviously can
overlap into other impairment areas to other listings, but also just be
more cost effective.

One of the concerns with the proposed changes, or I should say with the
changes now to the prescription Medicare bill, is that there is going to
be an unequal implementation of Medical as of \-- I think it's going to
be as of 2006, where Medical accessibility in terms of drugs that are
covered, treatment that is covered, caps, is going to vary state to
state. Obviously as we said here in California we're facing a tremendous
budget crisis, and if we \-- I believe if the State of California had
that discretion now we'd be seeing cuts much more significant than the
cuts \-- the proposed cuts to ADAP.

Cuts in medication coverage are going to kill our clients. They are not
going to be cost effective for Social Security because they are going to
require significantly more expensive treatment, namely emergency room
and nursing home, which are a lot more costly than a regular regimen of
medications, even as expensive as the HIV medications are. So I think
that when Social Security assesses itself and looks for ways to improve
the program and looks for ways to maintain treatment I think that the
concept of expanding Medical coverage to persons who are attempting to
return to work is a good idea. But if Medical is no longer the program
that can cover the services and the medications that the individuals
need there's going to be simply no incentive.

One of the things that I've heard mentioned today and I've actually seen
in denial notices from my clients are references that, well, you don't
meet our listing because your condition is expected to improve within 12
months. There is a Social Security ruling that specifically states the
12-month period does not apply to HIV cases. These are still Terry
cases. They are terminal illnesses. But the Terry notice is now the
exception rather than the rule on the files that I'm seeing at OHA. I
don't know whether these are simply being missed or whether there is
this concept as we've said already that HIV is a \-- you know, you just
take a few meds and you're fine. But that is something that needs to be
consistently addressed with regard to presumptive benefits and with
regard to expediting the cases as they go through the process.

That also should be applied \-- there was an internally ruling. I think
it was in '93 and then I believe it was also incorporated into the PALMS
to screen out HIV cases adjudicated after 1991 or 1993 that met a
listing, that they should not receive CDRs unless they have returned to
work. I have seen quite a number of HIV cases where they were approved
based on step three. They met a listing, and yet they're being pulled
for CDRs, so \-- and I'm not talking about the cases where it was
perhaps a step five assessment or there was an overlap with mental
health and it's less clear about what listing might have actually been
met. I'm talking about cases where the judge expressly stated this
client met a particular 14.08 listing. Again in terms of cost
effectiveness if this indeed is part of the PALMS then these cases
should not be screened unless the individual has returned to work, and
it would save Social Security time and money if that screen-out
provision were being universally applied.

One of the things that I've seen, and this has been mentioned in terms
of substance abuse, there are issues regarding individuals who may have
a history of alcohol abuse or substance abuse where if they are
prescribed Tylenol laced with codeine some may consider that a relapse,
even though that's being prescribed to control their pain. There are
also some HIV medications which are only available in liquid form which
means that they're consuming alcohol. Well, if they're a member of AA
that may be considered a relapse. So there has to be some consideration,
and this is not just with regard to the drug/alcohol independency
argument that the judge will make or that Social Security will make.
It's with regard to just determinations regarding the client's
credibility. This should not be considered a relapse, but in some cases
it is. These are drug treatment choices that the client is not
necessarily able to make. These are recommendations made by the doctor
and, as Dr. Grossman and others have said, sometimes these are the only
medications that are left that are still available which this individual
can still respond to.

I also have had judges ask my clients how they contracted the virus
during the hearing. I consider that to be bias. I've objected on those
grounds. Let's see.

There's been some discussion about the T-cell and the viral load. Again,
I recognize that Social Security likes to have an objective lab report
that they can sort of hang their hat on in terms of assessing whether
this person meets or equals a listing. The way the listings have been
changed in '93 there is a reference in the introduction to

T-cell viral load, but obviously it's not a separate listing in and of
itself. I've had medical experts testify that if the client's T-cell is
500 that's normal. That may be considered for normal for someone who has
a diagnosis of full-blown AIDS, but it's medically not normal. When the

T-cell is high and the viral load is undetectable we get these
statements by medical experts and we get conclusions by administrative
law judges and others that the person meet a listing or no longer meets
a listing, and when the T-cell is low and the viral load is high there
is an \-- sometimes just an intimation or sometimes a flat-out
accusation that the client is not complying with their medication
regimen because if they were they wouldn't have numbers that looked like
this, and as we've seen there are genetic reasons why some people may
respond better to medications than others.

One of the things that I remember is AZT, it could actually cause skin
color changes. African Americans who were prescribed AZT were actually
told to take it at night because if they took it during the day and then
went out in the sun their skin pigment could change significantly. So if
we look at \-- and this is sort of one of the things about, you know,
pounding on the table. When my clients' T-cell is low and viral load is
high obviously I'm going to argue that, look, they're on these
medications and yet they're failing to respond appropriately. But when
the numbers go the other way I'm going to say I have all these medical
date, all of these medical journal articles that explain that this is
not a corollary to how they feel, and that's what Eric and Dr. Grossman
both said.

You will have individuals with full-blown AIDS according to their
T-cells who are still working, either because they feel well enough or
simply because they're determined enough. I've had clients with T-cells
of, you know, 1,100 and, touch wood, I've been able to win them their
cases. So there is \-- it is a unit of measurement. I think it should be
considered only that. A unit of measurement, how can \-- do these
numbers show us how this person is responding to their medications, and
if it indicates there is a response are we looking at side effects of
the medications or are we looking at symptoms? I've had medical experts
testify that these are just side effects of the medications, therefore
they must have some residual functional capacity to work; and I think
we've pretty well delved into that, that I think those \-- and there
already is in the listing in section 14.00 the discussion that there
must be some consideration of the side effects, but I don't think that
is addressed to the degree necessary by the agency, either by DDS or by
Social Security at the hearing level.

I've had three clients die after we won the case and before they
collected benefits. The timeliness issue is still there. I had one
client who lost his COBRA because we could not get a hearing scheduled
before his COBRA was to expire. That is again obviously not cost
effective to the agency for the client to lose COBRA and then have to go
through Medical and Medicare.

There was the recommendation \-- and I'm blanking. I think there was an
Assembly bill in California about expanding Medical to persons who are
HIV-positive but not necessarily disabled according to Social Security's
rules. The language however of that bill, there was no additional money
provided. The only way this program was going to be paid for is for
persons always approved for Medical who would opt for an HMO version. As
an advocate I would never recommend one of my clients opt for an HMO
version of Medical. In think they're losing out enough as it is. That,
however, I think is a good idea as has been discussed by the doctors. If
individuals before they are considered full-blown disabled according to
Social Security's rules had better access to medication and medical care
then there is less likelihood that they are going to need to become \--
need to receive disability benefits, and they may actually be in a
position to continue working longer.

As we've submitted our recommendations and as we make suggestions about
changes to the listings I think there is also room here for the agency
to promulgate new SSRs. I don't think all of the recommendations that
we've made have to go into the listing, because as we've seen there's
lot of really great language in the listing that simply is not being
incorporated or read or evaluated properly by the powers that be. If
there were Social Security rulings that \-- there is a Social Security
ruling for example that is \-- that says the 12-month disability period
doesn't apply in HIV cases. I think we could easily have some Social
Security rulings that talked about side effects of medicines and how to
give those better consideration, recommendations regarding these
formulas for fatigue, good days versus bad days, and the fact that, as I
argue my cases, HIV is looking more like the cancer cases. There are
laws on the books from the 9^th^ Circuit that discuss when you look at a
cancer case you can't consider it simply during a period of remission.
You have to consider both the ups and the downs. I think that's an
excellent place to develop a Social Security ruling reminding the judge
that the HIV cases have to be considered in a similar way.

I think \-- did I cover just about everything? Those are pretty much the
highlights that I wanted to make. I made a lot of statements. I actually
had the opportunity to draft the comments to Social Security, and then
Hayley sort of took it and ran with it. We made all of our various
changes and got all of these other agencies to sign onto it, but the
recommendations that I made are really sort of a rewrite of the brief. I
brief all of my cases. It's always very funny to me. It's a brief. You
know, it's about 110 pages including the attachments and I call it
brief. But the judges, several judges have said to me, you know, I see
bad cases day in, day out. I'll get maybe one HIV case every few months.
So they're not necessarily going to remember what are all the rules and
all the different variables regarding changes in treatment. There are
issues regarding personnel, and in fact the ELJs have their own union.
When we talk about efficiency and effectiveness and cost effectiveness
for the agency I know that there is pressure on administrative law
judges who seem to approve too many cases.

I wish that there would be an assessment by the agency on judges whose
unfavorable decisions are consistently overturned on appeal, because
those are the judges I think \-- and again this crosses over, not just
to HIV cases. Those are the judges who are making consistent errors of
judgement, whether it's abuse or discretion, whether it's a flat-out
error of law, and those are the judges whose efforts perhaps are costing
the agency more money than they purport to be saving. There remains an
issue by medical experts and by administrative law judges that if they
issue a partially favorable decision or they issue an unfavorable
decision they are doing their job because they're saving the agency
money, when their job as a medical expert or as an ALJ is to be an
impartial advocate, an impartial adjudicator, or an impartial medical
expert.

I think there is plenty of room for trainings. I think that there is a
highly-qualified medical and advocacy body of people out there that
would make themselves available to the agency to conduct trainings,
whether it's for DDS staff, whether it's for Social Security field
office staff, or whether it's for administrative law judges, for
whomever may wish it. I think that also crosses over to other disability
areas. I think it is unreasonable to expect that with all the work the
agency does that they can keep on top of all the changes in the medical
profession regarding new procedures in clinical diagnosis or something
as highly specialized as HIV. I think that may be another good way to
keep staff trained and up to date on what's going on in the profession,
and also the realities.

The demographics of HIV have changed remarkably. You know, Eric talked
about \-- he showed us statistics for San Francisco, but the people who
are becoming infected with HIV are more often people of color, women,
people for whom English is not their primary language, the poor, the
undereducated. That goes to one of the reasons why they may be infected.
I'm starting to see domestic violence overlaps, which is probably how
the individual became infected to begin with.

When we look at those, when we look at those changes in demographics,
I'm reminded by the fact that the number one disability for which people
sought benefits used to be heart disease, so it got a lot \-- Social
Security got very specific in terms of how you could be approved based
on a heart condition, and they began requiring very specific tests. Then
I think it was in the late '80s, early '90s, it became mental health. I
think eventually it will be HIV, because we are seeing infections
continue, and we still have no cure. We may have individuals who are
living longer with this disease, but as we've said repeatedly it doesn't
mean that they're feeling well enough to return to work, and it means
that this area of disability is likely only to grow. So on that happy
note I think I'll stop and allow time for questions.

(Applause.)

MS. CAPELLE: One other thing I think actually I should mention since
nobody is bopping up with their hands, one of the things that I've tried
to do \-- I did this some months ago, a discussion with Hayley. I've
seen real disparities in terms of HIV clinic notes, chart notes. That
obviously affects us in terms of how we can argue our cases to Social
Security. It also affects Social Security, just the physical ability to
read these notes. Notes which are computer generated obviously are a lot
easier to read. So what I try to do is develop a chart form that
incorporates some of the best things I've seen from different clinics. I
showed it to Dr. Grossman. He made a few other recommendations. But for
anyone who is an advocate and is willing to share this with HIV clinics
in your area I've made some extra copies, and these are just
suggestions. Because one the things that I do see when I look at the
medical records is \"Feels well and no complaints.\" It's not
necessarily that that's what the patient said. It may be that is what
the doctor is writing down in the interest of time, that the patient has
said nothing new. But if there is a list of, you know, fever, fatigue,
aches, pains, you know, memory loss, diarrhea, nausea, whatever, and
they can just check them off or circle them it seems to provide a lot
more detail for Social Security, for DDS, and really in terms of the
medical history of the patient's chart without requiring a great deal
more time.

And with regard to the Karnofsky score, yeah, it has its purposes. The
unfortunate thing about computer-generated chart notes is that they tend
to have a lot of preset entries, and the doctor has to go in and
manually change them. So if you see a chart or a patient file that says,
\"Chronic nausea, skin rashes, aches, pains, fever, Karnofsky 90,\"
chances are likely the doctor forgot to change it. However, it's been
used by medical experts and administrative law judges to say, \"Well,
this is the treating source opinion that despite these problems this
person can still function, and therefore we can deny the case.\" So it
takes more of our time as advocates because we have to go back to the
treating source and get them either to write a letter of correction or
actually go in and change and reprint those chart notes, which they're
not always happy to do, but it needs to be done.

Questions? Remarks? Rotten tomatoes? Okay. I'm going to step down from
this table.

(Applause.)

DR. LAURITZEN: My name is Susan Lauritzen and I'm a medical consultant
from the regional office here in San Francisco, and I'm going to make
myself quickly popular here by announcing the break. So you are going to
have 15 minutes for a break, but we want to really get everybody back.
Maybe get a coffee or bathroom break. If you have a couple minutes over
the break you might take a look. This last hour, which is now an hour
rather than two hours, is really everyone else's chance here to say what
they'd like to say. Baltimore has put five questions that's behind the
agenda in the first section, and you might take a peak at those over the
break. We're not going to limit the discussion to these, but these are
\-- this is what the discussion is going to be centered around. So if
you can come on back at 20 after 3:00, and then we'll have about an
hour. Thanks.

(Whereupon, a short break was taken.)

MR. : Break time is over. Can we get back in our seats please so we can
get this final session underway?

**[Session Two: Questions for the Audience]{.underline}**

**Moderator by Susan Lauritzen, MD**

DR. LAURITZEN: Okay. I'm going to go ahead and try to get us rounded
back up here. I've always wanted to know how to make one of those loud
whistles, but \--. So I'm going to say just a couple of words to lay the
ground rules here, and we're hoping for a spirited discussion, although
being the cleanup session here hopefully everyone will just have a
little bit more to say.

Like I said, my name is Susan Laritzen, and I'm a physician. I'm
actually a pediatrician, and I find myself in sort of an interesting
position here because for the last 14 years I have been a medical
consultant with Social Security in the regional office here. I mostly
did childhood claims, but I'm certainly aware of a lot of the issues,
the medical issues. I do some training so I have heard the complaints up
and down the perspective from various positions here, and also did my
training here in San Francisco, both at medical school and residency at
UC San Francisco, and have worked at the County Hospital at San
Francisco General for the last 14 years. So I would have on a different
hat at different times, and it was really pleasure for me this morning
to also get to hear Dr. Volberding, because for all of us who know who
don't know he is one of the world authorities in this, and we really do
hope to look to some of the things going on in San Francisco in the
advocacy to be models.

But I'm here as a facilitator today, and this last hour \-- which was
going to be two hours, and now we're down to 45 minutes \-- is really
designed to again be a catchall time. We've got Barry Eigen and Sue
Roecker up here, hopefully with their pens and pads poised. So I'm going
to now try to be the advocate for the advocates here and really invite
people to speak up. We've got five questions that Barry Eigen, Sue
Roecker, and some of the other policy people that here have submitted.
Partly just to stimulate conversation, but because it seems they really
do want to get input for these questions, and they're going to be taking
notes. This is the time for anyone who has something to say who hasn't
had a forum or who would like a forum to speak up. So we've got about 10
minutes per questions. Some of these questions I think have already been
addressed through the speeches and the talks, but I'm going to actually
pull rank here quickly and start with question number two because I see
something in their about children, and most of the HIV stuff is not
going to be about children as we've already heard. Because the \-\--
thing that I actually can say from my own experience is when I graduated
in 1990 from UCSF the transmission rate going from mothers to baby was
somewhere in the realm of 25 percent chance of an infected mother
passing the illness to the baby, and now I believe we're somewhere under
five percent for mothers who get all of the up-to-date treatment. So we
actually are not seeing as many HIV cases in children, which is a small
part of the good news.

But question number two that we'll start with reads, \"Our HIV listings
address the different effects HIV has on men, women, and children. Do we
address these sufficiently? Do we need to change how we address these
populations in any way?\" So I'm going to ask if anybody has something
to say about that. I know there's a couple of DDS's people, DDS
administrators here, and we've got the DQB people, we've got advocates,
we've got central office, and whoever else would like to speak up and
identify themselves please step forward, because this is going to be a
long 45 minutes if people don't have anything to say. So if anybody has
questions on really how the listings or different or need to be
different to address needs of men, women, and children. Do we address
these sufficient? Do we need to change how we address these populations
in any way? Does anybody have something to say about that?

MS. CAPELLE: Leslie Capelle again. One of the things that I would note
is something that Dr. Grossman already said. He touched on it, but
actually the medications that are available for HIV treatment are based
on clinical trials which almost universally involved Caucasian men. So
we're talking about doses that work for basically one side of the
species and for one genetic group. So when Dr. Grossman talked about the
fact that women will have optimistic infections even with a higher
T-cell and a lower viral load actually what he didn't mention is the
fact that women also will respond differently on the medications. He did
say that the medications are not based on weight like cancer meds are. I
don't know whether it's feasible that that is going to change, but that
is something that certainly needs to be considered when we assess if
somebody is responsive treatment.

One of the things that I know from the few \-- I've only had about two
children's cases in six years, but the consistent comment was that it is
so difficult to keep a child compliant with meds. You know, you try
keeping an adult compliant, 15 meds a day. Try a child. They taste
terrible. They make you feel bad. They don't want to take them obviously
during school hours because they're perceived to be different.

So those are probably elements that we can include either in the overall
introduction to the listings for adults and children, or as I suggested
previously something that can be incorporated into an SSR regarding \--
we've already discussed side effects versus symptoms, and then we can
also look at the fact that men and women and children respond
differently to the same treatment, even if they start treatment at the
same place at the same time.

DR. LAURITZEN: Okay. Anybody else? And I would say, too, that there's a
number of people in the audience here including myself who do training.
So as you're suggesting things we're happy to hear specific things that
people thing, you know, for those conditions that are already there
between Social Security and the various levels. Things that should be
emphasized, and I think the more specific you can be as far as
suggestions probably the more helpful.

MS. PATTERSON: Sarah Patterson. I would just reiterate. I think a couple
of people, medical people and the lawyers, this morning talked about the
co-infection with hepatitis C and hepatitis B to a lesser degree. These
are cases where what I see coming out of the DDSs is, \"Well, yes, you
have a liver problem, but you don't need listings over there,\" and they
never consider the combination when in fact it's the leading cause of
death for people with HIV, and there's just no place where that
co-infection gets considered adequately.

DR. LAURITZEN: Does anyone want to respond to that? We're in general on
the SSA side in the listening roll today, but if people have responses
\-- gentleman in the back, and say your name and where you're from so we
all can get the context.

MR. HATFIELD: My name is David Hatfield. I'm an administrative law judge
from Pittsburgh \-- that's Pennsylvania. I guess on that question, I
mean, the thing that comes to my mind probably, we're still talking
about the listings here and those folks that may have \-\-- problems may
be paid but \-\-- and to it seems to me encumber the listings with every
potential pay case I think \-\--.

MS. GORENBERG: Okay. I'm a little nervous about putting this one out
there because if really just honestly crossed my mind, but I think that
we're in an open mood here. Something that struck me, not necessarily
from my work in Social Security disability cases but from other aspects
of looking at the HIV epidemic, is that I think that there is a fair
amount of scholarship on what happens when somebody who is otherwise a
caregiver for other people in their family is also on medication and
they shortchange themselves. This happens particularly with women who
are caregivers for children, that that will complicate their own status
being in care and they may end up with shifts in their medication
schedule because a med makes them sick; that they need to take care of
the kids in the morning before school, that type of thing, and that
sometimes that kind of scheduling unless there's an understanding of the
dynamic is going to result in looking at somebody as not adherent or \--
you know, it may also have impact on other health status because of what
they can and can't do with their treatment and care. You know, you asked
for some specifics, and I'm sorry that this is just striking me, but it
does seem to me I've done a fair amount of reading on this in some other
context and so that when you have people who are claimants for benefits
who are also in something of a caregiving role in their family that
there needed some recognition of that. That's going to be a complicating
factor and may need to be taken into account, because I know it does
play itself and that there are actually studies on it.

DR. LAURITZEN: That makes me think of getting the details on the
function forms when you ask people, at least in the childhood claims, to
try to get specific information, or if someone is going back to a
treating source, or getting the ADLs that there may be specific things
to ask. You know, maybe the more we ask the more information we'll get
in terms that mother going through her day of how her ability to take
medications is affected other roles, if I'm paraphrasing you right.
Okay. Anyone else?

MR. GERRY: I wanted to ask a question if I could. One of the
presentations this afternoon there was an example given of someone who
was HIV-positive who was on COBRA and the COBRA time lines were running
out. One of the things that was also outlined in the Commissioner's new
approach is something called \-\-- medical benefits, which is the idea
that for some people who become applicants for Social Security benefits
that do not have access to health insurance that it would make sense to
at least for demonstrations consider the possibility of granting
immediate access to health insurance during the period in which the
claim is being reviewed and adjudicated. The condition that was assume
or has been assumed as kind of leading up to that would be someone who
in fact either had no health insurance or was about to lose health
insurance, access to health insurance.

Can anybody give me a sense of in the population of people that we've
been talking about who are HIV-positive who come on or seek to come on
benefits what extent there are significant numbers of people who either
don't have access to health benefits \-- or maybe appropriate health
benefits. That's a separate question \-- or about to lose that access
during a period of time in which \-- that's just something I don't have
any data on. It would just be very helpful if people have that.

DR. LAURITZEN: I'm sure there's people here that could address that. I
would think a short answer is huge numbers, and can we hear from people
who might have specifics? This front table looks to be shifting around a
little bit. Anybody want to come up to the bat?

MS. CAPELLE: Yes. That's actually one of the examples that I gave. I
think it's going to depend on region. You know, I'm from Los Angeles.
We're here in San Francisco. Both highly urban areas with a
well-developed medical infrastructure. So our clients are exceedingly
fortunate that they have these resources available to them. I lived for
almost four years in the central valley of California near Fresno where
you didn't have, you know, those kinds of resources. There was one
hospital for the entire county. Of course the county is not as highly
populated as Los Angeles, but the \-- I think the answer to your
question, you know, in an appropriate legal way is going to be both yes
and no.

Yes in the sense that there are individuals out there who don't get
access to the medications \-- excuse me, access to the medical care that
they need, possibly because they are in a rural, semi-rural, less
urbanized area and they simply don't have the medical resource in their
community. But for those people even who are in an HIV clinic that is
funded by the Ryan White Care Act their doctors can't necessarily get
them the referrals they need. Because if it's a referral for possibly a
non-HIV condition \-- I have a client with a severe back condition. He
can't get any treatment for it because he doesn't have Medical and it's
not HIV related. So his back treatment is essentially untreated. It's
undocumented in his medical chart, and that actually may be his primary
disabling impairment.

So if there were that level of medical care \-- and this is something
that probably could be done in a cost benefit analysis. What would be
the cost to the agency if at application the individual were approved
Medical/Medicaid and therefore not only got access to medical treatment
at an earlier stage, but also now the documentation to the agency to
determine whether the person is permanently disabled according to the
rules is there? Because when we discuss the non-HIV client we're talking
about individuals primarily who have a few emergency treatments. They
have no other access to medical care, and therefore you're looking at
possibly three hospitalizations over three or four years, and that's
supposed to be their entire medical file to determine if they are
disabled.

DR. LAURITZEN: Did that answer your question?

MR. GERRY: It was certainly responsive to the question.

(Laughter.)

MR. GERRY: I mean there are probably \-\--.

MS. CAPELLE: I said yes and no.

DR. LAURITZEN: Let's hear a couple others.

MS. GELFAND: Hi. Jane Gelfand. I think it would be absolutely essential.
Basically the Ryan White Care Act has saved everyone, Social Security
especially, a lot of money, and the Ryan White Care Act has to be
reauthorized in 2005. We don't know what's going to happen, authorized
again in 2010. There's a lot of prediction that it might go away in
2010. So for right now for people living with HIV ADAP has been a
savior. For people with other conditions who don't have ADAP, who don't
have Medical/Medicaid, in California the same definition to qualify for
Medicaid as it is for Social Security, no access to treatment,
medication, et cetera. So people cannot get treatment again or
medications for anything, for almost any condition. With ADAP probably
this year July 1 Arnold Schwarzenegger is going to cap ADAP in
California. We already know that there are what? I think about between
15 and 20 states that have already put caps on ADAP and have wait-listed
people, and we know those people are dying. Oregon has a wait list as a
matter of fact, 600 people on the wait list right now. So none of those
people are getting medication, nor getting treatment. So absolutely
health and \-- and this might go back to the presumptive eligibility
issue at maybe initial and then keeping the Medical through a recon
hearing, et cetera.

DR. LAURITZEN: Can you say for the people in the audience who are not
familiar with ADAP what you're referring to?

MS. GELFAND: ADAP is AIDS Drug Assistance Program which has been a
medication program only, and it's been for people who are HIV-positive
and then different states \-- it's federal monies given to states and
then states determine the formula, the eligibility requirements, et
cetera. So there has been less of a push for some people to try to
pursue the arduous process of going through Social Security to get
Medical and income benefits, et cetera, because they've been able to use
ADAP for their treatment. Those options are going away. It's just a
matter of time when they go away. Whether it's in a year, whether it's
five years, six years, et cetera, and soon enough it will go away all
together.

DR. LAURITZEN: Any other comments on this particular one? Okay. We've
got our web people running around.

MS. : \-\-- you guys \-\--. In response to the administrative \--

DR. LAURITZEN: Can you speak up a little bit? Especially if you're from
the DDS, because let's hear. Let's hear it from them.

MS. : Especially from the DDS perspective as far as not combining things
to meet listings. Our problem has been that it's very easy to allow the
client who is perhaps not as compliant to medication, has managed to get
an opportunistic infection and meets one of our listings easily. The
difficult client for us to allow especially considering our DQB
requirements, at least in our region, is that the guy who has HIV who is
continuing to be completely medication compliant is kind of gradually
going downhill and is now in that group of that has been treated for
long time, has lots of different things and probably should meet 14.08N
has managed to work at a very sedentary occupation. He's worked himself
down, less hours, less \-- his employer has tolerated him as long as he
possibly can. He's been STA while working 15 hours a week, and we
penalize him for that when he applies for disability because he has
managed to work a long time at a very low-skilled job over \-- or maybe
not low skill, but a low RFC, and then when he applies for disability we
have a devil of a time allowing him.

MS. GELFAND: Why is that not in 14.08N \-\--?

MS. : It is, but our DQB does not think it is.

MS. : What do they say?

DR. LAURITZEN: Ooh, that sounds like hot topic. Does anyone want to
respond to that?

MS. : Don't be afraid.

MR. EIGEN: What do they say back to you? What do they say in their
returns?

DR. LAURITZEN: What are the DQB responses that you get?

MS. : He can return to his past work.

DR. LAURITZEN: So is it a vocational analysis comment?

MS. GELFAND: But why do you get to that level in the sequential
evaluation process when it meets a listing?

MS. : I don't know. DQB does. \-\-- the listing.

MS. GELFAND: I think this is a really important point, and this is what
I tried to do my whole presentation to some degree, but this is one of
the most important points maybe that we have to learn. So why is that
not meeting 14.08N?

MS. : That was our recommendation. We get the return from DQB that it
does not make the listing.

MS. DAVIS: I think one perception, too, from the statement that was made
\--

DR. LAURITZEN: Can you say who you are?

MS. DAVIS: Anna Davis from Florida, DDS. One of the statements made
earlier is that it's easier to deny than to allow. I can tell you from
our perspective it's a lot easier to allow. We don't have to do personal
decision notices. We don't have to do a lot of things. We teach our
adjudicators to look for the allowance, to try to allow people. So we
have a lot \-- you know, that kind of struck an odd note with us when we
heard that because it makes us do more work. If we can stop at step
three we don't have to get 15 years of vocation \-\--. We don't have to
do transability of skills analysis. That's another thing. So actually
it's just the opposite for most examiners. We love to get \-\-- listing
every time. They \-\-- a lot easier.

DR. LAURITZEN: Thank you for DDS people speaking up. Any other specific
\--? The gentleman in the back.

DR. RAFFANTI: Steve Raffanti. Can we move to something other than we
were just talking about?

DR. LAURITZEN: Sure. Have at it. They're all just sort of \-- they're
all roads to the same.

DR. RAFFANTI: I think there are specific recommendations that should be
made from a medical perspective that would help with basically
developing this form into a more accurate \-- you know, that reflects
the current state of care \-\--.

DR. LAURITZEN: What form? What are you putting up there?

DR. RAFFANTI: 4814.

DR. LAURITZEN: Do you want to say what that is?

DR. RAFFANTI: That's the form we were talking about \-\--.

DR. LAURITZEN: Okay.

DR. RAFFANTI: Medical report on adult allegation of HIV. It's the
disability form. Okay? Is that okay? Anyway, in regards to number \--
number three and number five, you know, variations in response whether
some of the listings are different than other of the current listings.
If it boils down to most high volume physicians if you ask them to look
at certain case scenarios and describe them in three or four phrases I
think you get probably 95 percent consensus on what looks like a very
bad prognosis and what looks like a probably responsive thing that may
not really be a prolonged disability status.

A classic example is something esophageal candidiasis or \-\--
meningitis in someone who has never been treated for their HIV and has
the opportunity of having a relatively sensitive strain goes on therapy
for the complication and goes on their first therapy for HIV they're
going to do very well. In 90 percent of the time they will do very well.
The patient who has esophageal candidiasis \-\-- because she's been
treated for the last 15 years, has run out of treatment options. That
patient is not going to do well no matter what we do. I think that you
could incorporate questions about their antiretroviral treatment which
would be if the patient is on which \-- you know, what number regimen.
Are they on their first, second, third, fourth, fifth? Are they on
salvage? Are they on, you know, second \-- and all that put in very, you
know, easy ways, and I think we could agree on that. Most providers
could agree on that. It would give people a very quick look at what the
prognosis for that patient is, and this is \-- you know, this is stuff
we have a ton of data on.

The stuff we're talking about women having different responses and
different prognoses and progression of disease, that's very, very little
data. There's only been one study that really shows there might be a
difference in the way women tolerate viral loads in their CD4 counts.
There's definitely going to be different ways that women tolerate
medications, but that's not out there. So it would be very hard to put
specific recommendations that would help everyone in this room
understand how to evaluate a women's prognosis or whether not she's
disabled based on this very new field of looking at differences in
treatment and differences in progression of disease.

What I'm talking about, we've all been doing this for 20 years. We know
all this stuff. So I would assume that when you have these groups with,
you know, Paul and Howard and everyone else that these are the kind of
things that you could be given that are very specific and you can add to
an evaluation. The treating physician even if he or she is, you know,
very time pressed when we're to answer those little questions we'll do a
better job.

DR. LAURITZEN: Thank you.

MS. GORENBERG: I have a question on that actually. I see what you mean
when you say for instance for somebody who is very treatment experienced
who has failed regimens. They're going to go into the next regimen and
they have esophageal candidiasis. You can say, \"This is someone with
treatment experience. There's some resistance here. This does not look
good.\"

When we look to some revision to the listings that can stand the test of
time I was wondering whether you could address the issue of resistant
strains, because you were talking about the person who is not treatment
experienced, the naive patient. They have a chance at having a less
resistant virus, but if there is resistance on the rise then it's not
just about my resistance in my treatment history. It's, you know,
wherever this virus came from. That person, it's some other people's
history. So I'm just wondering, you know, in my mind. I was thinking,
well, you know, then do we end up with the person who is treatment naive
who is going in but there isn't enough resistance testing or whatever.
Will the idea that the treatment-naive person is going to be more
responsive, hold the test of time given how resistance is moving through
the epidemic?

DR. RAFFANTI: Yes. Again that is \-- you know, there are relatively good
data. You can look at two things. You can look at resistance at
baseline, and when you saw those slides that have \-- you know, that has
been out there for about three or four years. That's just talking about
any resistance in any drug class. So if you get, you know, like a
resistant marker that's not very important it still qualifies as not
being a wild-type virus. If you look at people going into clinical
trials \-- and that's the best case scenario because they're well enough
to go into a clinical trial for treatment, naive patients. The response
to therapy, the initial response to therapy is very good if you are just
measuring does their virus go to undetectable levels.

As they fail, as they fail \-\-- 48 to, you know, 96 weeks their virus
will come up. They'll develop resistance, but they clinically continue
to respond. So I don't mean to take those things out of the listing, but
I think if we want to be honest and show our expertise we can say, well,
you know, this woman came to me. Her CD4 count is 24. She's never been
treated. She's got \-\-- meningitis. I'm treating her for that. I'm
going to start her on a potent antiretroviral regimen, and there's a
very good chance that somewhere down the line we can reevaluate this
because I'm

\-- my goal is to get her to be very healthy. But, you know, the woman
that died two days ago that I'd taken care of for 10 years had
esophageal candidiasis. This is four times in the last three months. I
knew she was dying. I had run out of options with her, and it's \-- you
know, when you read this form it gives you a tiny little space to say
they have, you know, marked activities of \-- what is it, restriction of
daily living, social functioning, persistent \-\--, and then they give
you two inches to write your comments, and I always write way past that.
You know, this is why I think this, and this is why I think that, but I
\-- this is what I do full time. There are a lot of people that don't
have that luxury. So if we have these little prompts I think you'll get
much better data here and I bet you won't get some of the cases going up
the line that don't need to go up the line.

But \-\-- I think we need to be honest about what we can do, because I
think you lose credibility if you never include \-- I mean, you know, if
I don't say yes, you know, some patients I think are very sick. I'm
going to get them very well, and they go back to work because they feel
great and that's what they want to do. I think we need to have that as
part of this process or else we sound like we're trying to, you know,
sort of make things not very accurate because we have agenda or mandate.
You know?

MR. EIGEN: I just whispered to everybody. I'm not sure what I'm going to
say about this. We just talked about \-- no. Don't put it away. We need
that. This is a complicated \-- there's a bunch of issues being kind of
mooshed together. I don't know how you're going to spell moosh when you
type that up. I'd use two Os.

(Laugher.)

MR. EIGEN: Mooshed together. The form you're holding in your hand is not
the form that we are supposed to be using to gather medical information
to make our decision. It's a form we use up front so that we can decide
whether to grant this presumptive disability payment. So one of the
reasons it doesn't ask for a lot of detail is if you check a certain
block we know that we should just go ahead and give SSI to the person
with the understanding that eventually we'll ask for more information.
But that raises issues about why do we do that. Maybe we should ask for
the information right away or \-- yeah, more detailed information right
away. But on the other hand that could slow up this presumptive
disability process, so that's not necessarily a good thing.

But then there's this other issue which \-- I'm putting words in your
mouth, but \-- so tell me if I'm doing the wrong thing. I think what you
were getting at, Hayley, was the issue \-- I thought what the doctor was
saying was there are some people who if early on, not necessarily
everything on this list in our listings, but there are certain things
that if they respond rapidly to treatment the implication was maybe we
should not be saying, well, you automatically are disabled. We don't
need to consider your age, education, or work experience. We don't need
to consider your functional limitations because we know that some
people, maybe even a lot of people, I don't know, will have a relatively
good outcome. But on the other hand if it's a person the way the doctor
described who has already been on treatment for a while and this is now
coming up that's a very bad thing. So is that what you were asking
about? I'm not sure, and is that what you were saying?

DR. RAFFANTI: I would say that there are different diagnoses for
different prognoses, and it's different whether it's your first time and
you're just entering care of whether you are not. You know, someone who
has a very treatable disease like \-\-- meningitis or esophageal
candidiasis is very different than someone who has PML or lymphoma,
whether it's first time or, you know, whether they've been treated for
10 years. I'm not saying that people shouldn't go on disability. I never
want to say that \-- I think that's strange.

MR. EIGEN: Well, that is what I \--

DR. RAFFANTI: But what I'm saying is that they are different and maybe
we can be smarter. I mean, maybe we could talk about, you know, some
different length of time with reevaluation for ones that obviously
should do much better and \-- you know. I don't know, I'm just \-- it
just seems silly because this document was written a long time ago I
know, but this document is sort of representative of what we're talking
about, even though it's not the crucial document.

MR. EIGEN: No, but I also \-- I like that you're stuttering a little as
you're saying this, because remember the very first thing I said this
morning is pretend your us, and you're trying to do the right thing and
you're trying to write a rule that's clear and that everybody can apply,
and these are the sorts of things we have to wrestle with.

DR. RAFFANTI: Well, I think that on whatever level it should be \-- you
know, the question should be asked how many times is it \-- how many
regimens has this patient been on? How many times has this patient gone
through the debilitating effects of the medications and what point are
they, and that's a huge \-- I would say that's 50 percent of the
problems the patients I treat have, is dealing with what they've been
through the last several years. That should go into the mix, and that's
not into the mix.

MR. EIGEN: But the mix for what? The mix for looking at them again? The
mix for entitling them in the first place, or both?

DR. RAFFANTI: Well, \-\-- past this now, so I'm taking about the mix for
evaluation of disability. Yes.

MS. : The listing \-\--?

DR. RAFFANTI: Yes. Yes.

MR. : Number five is should people stay qualified as disabled \-\--.

DR. RAFFANTI: I'm \-\-- that, too.

DR. LAURITZEN: I think this is a good time to go to question number
five, and I'd like to put Barry on the spot again a little bit, because
this is a long question, but I think it does dovetail in here and maybe
is controversial enough to get a few more comments. Question number five
on here is essentially asking is it still appropriate for every type of
opportunistic infection to then automatically get disability, and this
is sort of the other side of the coin. Are there some things that then
people shouldn't be getting disability for, if I'm reading your question
\--

MR. EIGEN: \-\--.

DR. LAURITZEN: Automatically. So do you want to expand on what the real
question was? I know there's policy people in the audience very
interested hearing people's reactions to this. So do you want to say
more about it, Barry, or \--

MR. EIGEN: No. I think Hayley \-\--.

DR. LAURITZEN: Okay. Hayley wants to say something.

MS. GORENBERG: I \-\-- because I had \-\--.

(Laughter.)

MS. GORENBERG: I took the point that you were making. I think it does
tie into question five, which is a very challenging and troubling one to
me. To me you are suggesting that there could be distinctions drawn
within Social Security's rubric based on treatment experience or not
because there can be predictions made. At a certain point I can sort of
see where you're going, and then I say, well, you're the doctor and I'm
not. You know, so you are saying there can be distinctions drawn based
on the experience. You can make some kind of prediction about how well
someone is going to do, whether they can work again or not or what.

Then my question was to, well, if we're going to make this distinction
between people who are treatment naive and who aren't does resistant
virus that someone who is treatment naive may contract figure into it to
make that \-\-- distinction that some point soon so that \-- like not 10
years from now, but next year we have a bigger problem in that aspect if
the listing didn't work or something. So that's why I asked the
question, and then it's just a question and the doctors have to respond.

One of my thoughts when I \-- you were talking about was this going to
happen automatically or are people going to have to go to additional
steps. Just to say I understand there need to be distinctions about who
is going to take the additional steps and who is not, but always view
the additional steps as denying claims. Because if people end up taking
them who shouldn't then, you know, finding yourself disabled at four or
five when you should have been sooner is a whole lot of suffering and
can be more, you know, health decline and that type of that thing. So
that's obviously why we are all interested in having these steps make
sense.

But to answer to question five, which I actually expected to encounter
in Philadelphia, and then we didn't I guessed because we were talking
about a lot of other things, that's \-- that kind of question is one
where, you know, when I saw these, this proposal come out, I assumed we
be talking a lot about questions like question five, do these things
still make sense. And in the conversations that I've had amongst folks
who are handling the legal end and also with the physicians what I was
hearing where things like \-\-- PCP and what's it's relevance in, you
know, today's HIV epidemic versus the epidemic of over 10 years ago. You
see things like if people are presenting with PCP that their health is
unstable to a great extent at that time, and in fact you can predict
that there is going to be a period of instability and that that properly
correlates to, you know, disability with SSA.

Then there's this open question about, you know, do they get reexamined
at some time and how much later or whatever, and honestly I think one of
the things that would have to be addressed to deal with that fairly is
what's going on with 14.08, and I thought it was very \-- 14.08N. I'm
sorry. Paragraph N. I thought your example you brought up of the person
being punished for having worked diminished hours and just sort of \--
that's the hanging-on-by-the-fingernails person who is trying to work,
work, work, work, work. Sort of works his way or her way into the
ground, finally comes to Social Security and then sort of gets punished
for having done it in a way.

This is very parallel to an example that came early in this nationwide
coalition that was looking at revisions, and the example was \--
actually out of DC, a Washington, DC clinic, and somebody was actually
looking at PCP as a listing, and she said, \"I have a client and it's
not just one.\" It's a typical example for her. Comes in, had, you know,
PCP six years ago, responded well to treatment, continued to work, goes
into this slow decline that you're talking about, work, work, work,
work, work. You know, finally comes in to apply for disability. Said,
\"If you take that PCP listing away from me then I may not be able to
win this case. I may not be able to win this case. This should be 14.08N
case. This should be a paragraph N case. I'm not going to have success
there. That's not fair. That's not right. But this guy really deserves
payment, so you can't take that listing away from me.\"

Now, you know, my comment, I don't mean to suggest that that PCP listing
is not valid. Because like I said, you know, presenting, if you're
coming in and you haven't been diagnosed, whatever. That's what you're
presenting with, or just if your health has come to that point then
there is a certain instability about your health that's pretty serious.
But what are we going to do about the fact that this paragraph N isn't
getting properly implemented? Which I'm hearing from around the nation,
and I think it is casting a cloud or shadow over what we can do here
because people are trying to sort of cobble something together because
they sense an injustice because they can't get paragraph N applied. So
they're trying to hold onto some other things and it's getting a little
strained in some areas, and it just needs to be \-- it just needs to be
addressed. That paragraph N is a real problem. There's obviously a need
for it. There's, you know, a decent intent there, and it's just not
getting put into \-- you know, it's just not getting put into practice,
and that is causing some cloudiness among the other things that we're
looking at.

I don't know how to put it better than that, and some of the other folks
who do the type of work I do may have, you know, some different takes on
it. So it's not universally from my point of view, but I think we have a
real problem there.

MR. EIGEN: I also want to add something to the mix just to make this a
little more complicated. It makes it a little more complicated, but it
might also clear the air a little. From my perspective as a policymaker
it doesn't bother me to have rules like listings that have some false
positives. In other words, we know that in our listings we allow
automatically some people who really aren't disabled

\-- according to our rules. They really wouldn't be disabled if we
didn't have the listing. But for the most part most of the people who
are allowed under the \-- it's a good rule because most people are
allowed. It's easy to apply. It's not complicated if you know that a
person who has, say, PCP you should just pay them. So as long as we can
be comfortable that we don't have too many false positives it would be a
much a easier rule to have just as a matter of policy and of
administering the program if we were comfortable that the majority of
people who come in and who have this we can be comfortable would be
disabled, even though right at that moment even though we know that some
people would be getting in who maybe won't become disabled until later
down the road. It's particularly easy to accept that in a case like HIV
because it's not something that goes away or gets better like some other
impairments, so it's not \-- it doesn't bother me too much as long as I
know that I'm not wildly spending the public fist to allow people who
really are fine \-- which I don't think we're talking about. So, I mean,
I don't know whether what I said is the actual case, but if that is the
case it wouldn't bother me to just keep these rules. I was just
responding to what the doctor said in the first place about how some
people have these okay outcomes.

MR. : As we creep towards the close of this session I'm hearing a
consistent theme across the board, and I just wanted to put it out on
the table and have people comment that it would appear to be that the
existing rules do need to be updated to some extent in light of new
treatments and new terminology and things of the like. But the critique
seems to be not on the rule itself but more on the application of the
rule, in that there appears to be widespread \-\-- amongst different
adjudicators.

People can react to that. I think that would be really helpful. I mean,
is the issue not the rule itself, but really the training and the level
of expertise of the people who are applying the rule? Have I accurately
crystalized what I've heard in different places?

MS. CAPELLE: Well, since I have the mic I guess I can respond to that
and then I'll go back to Hayley's comment as well. From my perspective I
would say it's a portion of both. The recommendations that we've made
for example that there \-- there's diabetes induced by HIV medications.
There's heart disease induced by HIV medications. We're seeing clients
with severe pancreatitis as a result of medications. There are basically
a series of medications as treatment for this disease. It was never
anticipated that the patients would be on these meds for such a long
time, and therefore these repercussions weren't unanticipated. So I
think that the recommendations we've made are that the listings be
updated to reflect some of these changes.

But I think there's also been discussion and certainly there's been
commentary that I've heard from advocates all over the country regarding
implementation of the rules as well at all levels, and if the
implementation were consistent I think that our comments about changes
to the listings might not be as emphatic because we would say, well, we
can just put that as a 14.08N case and we know that they'll understand
it that way. I actually had one medical expert \-- the way the listing
is currently phrased, 14.08N, it says, \"e.g., fatigue, malaise,\" and a
couple of others, and the medical expert testified, \"Well, you don't
have one of these four. Therefore, you can't meet this listing,\" even
though those were intended as examples.

So the answer to your question is both, but the other thing which I
think also feeds into your question is that we \-- I think the advocates
here, we have seen cases and I think judging what \-- the comment from
DDS is that they've seen cases where the client had an opportunistic
infection and recovered, and the comment is, \"They no longer meet a
listing. They survived the opportunistic infection.\" Except the listing
doesn't require you to die to meet the listing. So the fact that you
survived is not an indication suddenly that you have residual functional
capacity to work or that you no longer meet \-- at step three, but your
case is adjudicated at step four or five.

The only time I did not argue a listing, actually it wasn't PCP. It was
the client had had PCP diagnosed four years previously. There was no
interruption of substantial work activity, which I think actually is the
situation in Hayley's example that would cause a problem, but basically
this poor client had so many other things we didn't need it. But that is
something that we see frequently, and I think it comes back to the point
that individuals respond to this disease and respond to the medications
in different ways; and it may sound horrible gray and it may mean that
we have to rely on SSRs rather than changes to the listing itself for
some of these concerns, but we will \-- you know, I think it's going to
be increasing difficult to see two people who respond the same way.

One of the comments that was made by one of the doctors is that you have
mutated the strains of HIV being transmitted to people who are newly
diagnosed. What that means for anyone who didn't understand it is that
people who are \-- who know that they're positive and are on meds are
engaging in unprotected sex and therefore transmitting mutations of the
virus. And then you will have situations with individuals both of whom
are positive and they decide, \"Well, forget it. We know we're both
positive,\" and they engage in unprotected sex which can mean that they
pass different strains of the virus to each other, further complicating
their medication.

Now, these are lifestyle issues that we don't need to address here, but
they go to the fact that different people will respond to medications
differently. They will be diagnosed differently and they unfortunately
will have to be treated differently, but all of these different
individuals may be equally disabled according to the way that the
regulation reads. It's just a question of whether the individuals who
are reviewing their records are making a similar assessment as they read
through these different factual patterns.

DR. LAURITZEN: Let me jump in here for just a second. We've got about
five \-- are we going to try to stop on time, 4:15, or we can go on a
longer bit longer? I wanted to just throw a comment because this is
ringing true to what I know about trying to teach functional equivalence
in the childhood cases. I think one of the things that we're talking
about here in a generic way is that it's much easier when a listing is
specific. If I'm thinking as my listings there's one listing, you know,
if you go to the ER six times you're in allowance, and it's always
easier to try to have, you know, a specific rule to go by. Once people
then get down into the functional stuff, which is I think what we're
hearing, it gets mucky and mushy and hard to apply and more subjective,
and so it sound to me like we're really talking about how do you train
people who have varying level of expertise in this area to have a sense
what \-- how function is really impacted. I would say as a suggestion I
think meetings like this probably help, just to have that kind of
dialog, but it sounds like more training in how do you apply functional
\-- how do you look at function in a disease that's very variable. So
that would be two cents.

MR. EIGEN: I totally agree with that, and also

I love the idea of also having some Social Security rule. We were
talking at the break about this. One of the cool things about rulings as
compared to regulations is the regulations are very formal. Writing them
is formal. Publishing them is formal. Rulings are less formal so you can
write in a more narrative style. You can include examples. We could
actually incorporate some of the kinds of examples that people brought
up today into Social Security rulings that demonstrate what we mean by a
very serious limitation under 14.98N in a very concrete way.

DR. LAURITZEN: We actually have until 4:30, and I'm wondering if this is
the segway into question four, \"Should we revise the functional
requirements in our listings?\" and \"If so, how?\" But I know also you
had a response that you were wanting to make, so why don't you go ahead.

MS. GELFAND: I know you guys have heard enough from me, so I'm going to
try to be really brief, but I don't even see \-- and I'm really curious
from DDS people, and I had a great opportunity to connect with some DDS
people, but I still \-- last week I had someone with non-Hodgkins
lymphoma and they're still asking for all the functionals. They're not
looking at the treating source. I have a lab report. I have objective
evidence. DDS, I'm wondering how DDS from other places respond.

MS. : \-\-- lymphoma?

MS. GELFAND: Uh-huh.

MS. : And they're asking for functional information?

MS. GELFAND: Oh, yes. Every case. PCP six years ago, same thing;
non-Hodgkins lymphoma two months ago, same thing.

MS. : \-\--.

MR. : That's crazy.

MS. : And they had the NER in their hand at the time?

MS. GELFAND: Oh, yeah.

MS. WILSON: Because examiners will do what's called simultaneous
development. They get out with a machine gun and they do everything at
once. They get all the functional information and they simultaneous were
getting the NER in order to give a timely decision to the claimant. So a
lot of times you will get what you perceive to be inappropriate
development or questions when they don't have the medical evidence of
record yet or the corresponding pathology reports.

MS. GELFAND: So are you saying \--

MS. WILSON: Without knowing that specific case it's hard to know what
was their intent.

MS. GELFAND: Right. Well, it sounds like either we in California have a
lot of hopefully really exciting work to do with DDS here \--

(Laughter.)

MS. GELFAND: To talk about the implementation of these regs, and then in
terms of the functional \-- so it's hard to answer this question? Just
like it was hard to prepare for this conference to some degree? Knowing
that the current regs aren't followed, so on that note I really
appreciate your comment. In terms of the functional limitations I would
go back to the treating source and the weight of the evidence to the
treating source. If the treating source is saying one, two, three,
marked limitations where do you have to go from that? That meets the
listing, and if you do the weight of the evidence to the treating source
you're already there. So it's hard, because I just say again I don't
know if I'm living in some bizarre vacuum. But, you know, I talked to
Sheila Hall who practices in the East Bay during the break, we talked
again \-\-- Advocacy Project, Bar Association of San Francisco. It's
universal stories here. We're not the only ones. Our clients aren't the
only ones, and these are \-\-- cases. So I really look forward to making
some more headway with CDDS people.

DR. LAURITZEN: That sounds good. Over here?

MS. SCHOENBERG: I'm Nancy Schoenberg. I'm with Social Security. My
question is about medical equivalence and whether that's still a good
concept to use for HIV and whether \-- both advocates and DDS, whether
you see medical equivalence used often in decision making at the
listings level.

DR. LAURITZEN: Yes. There's a good question, combining different
impairments or using medical equivalents to combine different things not
forgetting \-- not jumping from the meaning of the listing down to just
straight function, but combining different impairments? Is that what
you're referring to?

MS. GELFAND: Only at the hearing office, and I don't know if DDS, if you
guys \-\-- that 14.08N case was bounced back, and then are you ever able
to find on the RFC?

MS. WILSON: Oh, yes.

MS. GELFAND: You are.

MS. WILSON: On a reduced RFC absolutely. That RFC is the testimony that
the claimant can work 40 hours in a work way at that pace, and if they
can't do that then absolutely yes \-- especially with the effects of
medication. Almost everything you said we have some sort of regulation
or ruling on that. With the work opportunity of this person \-\--
special consideration. I can \-\-- that now. They had a job that they
could do with special help from somebody. You can discount that. There
are many ways to get around this and certainly we can use them, and we
need to be supported by our DQBs when we do. But Social Security has
addressed most of those things. Effects of medication is in our
regulations. Response to treatment is in our regulations. Symptoms are
in our regulations. I am concerned about something you said up there,
that you didn't want the disability adjudicators to contact your
claimants. The regulations tell us that the best source of information
on symptoms comes from the claimant. So how does the adjudicator get
that?

MS. GELFAND: So that's usually through the HIV questionnaire and the ADL
questionnaire, functional, we're at 14.08N, but the regs say that you
actually cannot contact the client.

MS. WILSON: Yes, that's true, for a representative claimant, unless you
give us permission. But those forms are only a starting point. They are
never comprehensive enough to make it a complete adjudication.

MS. GELFAND: Hard for me to answer again.

MS. WILSON: But the regulations tell us that the best source of our
information is to get it from the claimant. That's our first source.

MS. GELFAND: So it's hard, because DDS often doesn't take into
consideration the opinion of the treating physician, let alone the nurse
practitioner, let alone the rep, let alone the ADL and HIV and work
history questionnaires. So it's hard for me to think that a phone call
from a DDS worker to a client who is already living with a terminal
condition is somehow going to give them that last bit of needed info,
and actually for our clients it is really traumatizing for them to
receive phone calls.

MR. EIGEN: Just to get back, one of the things I've heard today loud and
clear was it is true that our rules include guidance about almost all of
the issues surrounding 14.08N we've discussed today, but that the
recommendation is to put them all in one place and make them specific to
this population; which struck me is a good idea, as a very good idea,
and there were various ways of doing that. Some would be in the
introductory text to the listing, which I think is a good idea. Some
would be in these longer things called Social Security rulings which I
also think is a good idea. The one think I wasn't perfectly clear about,
I did ask Hayley this morning, was whether anybody had any concerns
about the specific functional criteria that were specifically in the
listing, and I think Hayley said she did, but I don't know if anybody
else did. I mean, I know people recommended putting more examples in the
listing, but that's not functional criteria.

DR. LAURITZEN: Can you say your name and speak into the mic so we can
\-\--?

MS. PATTERSON: \-\-- the consensus of glances around the table here,
they're not bad. You know, I mean they work if the doctors fill them out
and then people read them, and from a representative point of view
they're a familiar structure from the mental impairment listings. So
they are pretty easy to work with from that point of view.

DR. LAURITZEN: We've got about 10 more minutes. Let's hear from the DDS.
They took the hit today, so it's nice to hear what they have to say.

MS. : I was going to \-- is this on? I was going to respond to medical
equivalents question by the judge. I in general rather than equate a
medical listing, again because of DQB problems, I will go to \-\-- to
work write our RFC. I am afraid to equate. I feel that there are medical
equivalences that \-- it's a whole lot easier for me to do an RFC than
it is to rebut a case.

DR. LAURITZEN: Do we want to hear from DQB on this question? I mean,
it's coming up a couple of times. I don't know if there are DQB people
here other than from our regional office. Is anybody here? Nobody here.
Do you want to say anything, Yolanda?

MS. WHITAKER: Yolanda Whitaker, DQB here in the San Francisco region.
Yes. I've listened to a lot of comments today about the DDSs not
adhering to the listings and what the listings say and not following,
you know, what they're supposed to do and particularly with the 14.08N
category, and then the comments that were just made about equaling the
listing and preferring to do an RFC.

When the cases are reviewed in DQB, you know, we certainly go through
the sequential evaluation process when we review the cases and we look
at the requirements of the listings and if the listing is met. If we can
equal a listing we certainly do that because the objective is for us to
make the correct decision, and the correct decision \-- well, when I say
\"us\" I mean the adjudicators and reviewers \-- because we want to make
the best decision. We want to make, you know, the correct decision based
on the information in the file.

I've heard a lot of other comments today about the form, the 4814 form
that's used, and it was pointed out by Barry that that's a form that's
done initially at the field office and \-- can you guys hear me?

(A chorus of \"Yes.\")

MS. WHITAKER: That's a form that's done at the field offices and, you
know, when the case gets to the DDS that form, it's not comprehensive
enough and it just doesn't have enough information. You know, it's the
medical information, and the doctors may not have time to fill out all
the information that's needed there, but generally the DDSs and the
reviewers when we look at it we would expect that the supplemental
medical records would support the information that's provided on those
forms. Now if that information isn't obtained then \-- you know, then
there's another issue that has to be addressed. Where do you get it
from? And that seems like where the ball has fallen or where DDS has
sometimes dropped the ball, and then they go to a CE. You know, that's
kind of sort of my guess.

You know, but then also you mentioned that there are treating source
information in there and the provided MSS and those aren't being taken
into consideration. In the DQB we look at that, and if the treating
source information is there, there's an MSS there, and unless there are
inconsistencies or if there's some other information in the file that's
contrary to that \-- I mean, that's what we look at and that's how we
determine whether or not the DDSs are following the regulations and the
rules that they're supposed to follow in order to make those
determinations.

So, you know, I was a little concerned when you said that because, you
know, if we get a case and the DDS is denying the case, you know, we
send it back to them. We send it back and we'll say, \"Well, why didn't
you address the MSS provided by the treating source?\" or \"Why didn't
you resolve the inconsistency?\" you know, if there is one. So I was a
little taken back by that that it comes from the DDS.

MS. : I'm jumping all \-\--.

MS. WHITAKER: But the medical equivalence issue, you know, if you can
the DDSs should be doing the medical equivalent, and I know that it's
true what the doctor stated that they would rather do an RC assessment
than to do a medical equivalence in some cases because sometimes it's
just the easier way to go. You know, the DDSs and as a reviewer you're
supposed to take into consideration the claimant's symptoms, you know,
and what we also look for is the consistency of the symptoms. It's a
little difficult sometimes if you only have it in one place mentioned,
and again that's why the medical records come into play. If in the
medical evidence there are, you know, consistent mentions of it, the
person was fatigued, or they were tired, and they have problems
sleeping, or they wake up, you know, and they don't feel rested. You
know, those things help to add to the credibility of the claimant and
help to establish a longitudinal history of symptoms, which then again
go along with the impairment.

So, again, when we get the case and we look at it in DQB we are looking
at the whole case. We are looking at the whole picture so that we can
get an idea of what the person can or cannot do. So I don't know if I
answered your question, but \--.

DR. LAURITZEN: Thank you. I think we have Sue needs about five minutes
at the end, which we're just about there. So do you want to have the
last word for the day?

MS. GELFAND: I would just like to respond to what was said. So a
different problem, and again I said it was the last time I'd speak, but
actually DQB, we've absolutely no problems with DQB. But we see is that
I have seen not one denial go to DQB, because we track each and every
case. We know when cases get closed out from DDS. We know the denials.
We know because we call on the same day. We know those cases are denied.
I have never seen a denial go to DQB. We know that we see only Title 2
allowances go to DQB, and all of those have been affirmed. I've never
seen not one, so I would love to, DQB personally. I would just love for
DQB to pull up \-- to pick up those denials. So I don't know if again
maybe our reality in the whole bay area, if we're all crazy, if we're
all out to lunch, if Florida and Alabama and Tennessee are doing things
better than California, but that's the pattern and practice that we see.

DR. LAURITZEN: Okay. Thank you. So that would be hard to wrap all that
up, so I think I'll just turn it over to Sue with the comment that for
me it's nice to hear from a variety of people, because I think that's
always how the ideas \-- you know, things get flushed out more, so I
would like to thank you all for having this opportunity for people to
come forward.

**[Closing Remarks]{.underline}**

**by Sue Roecker**

MS. ROECKER: Thanks. Well, it's an unusual meeting when DQB comes off as
the hero.

(Laughter and applause.)

MS. ROECKER: Maybe I should just stop there, but

\-- I said, you know, after the morning it looked like OHA was doing
really well, you know, which is also unusual, but you had your licks.
Today was really a mixture of I think talking about internally what I
would call process kinds of issues, the application of policy across the
many people that adjudicate claims and the different components in SSA
that do have a part in disability claims adjudication, and then actual
policy itself. And while we were trying to focus you on the policy
because this is all about trying to figure how do we construct the
listings, what do we do to them, what are we changing, we can't get away
from that process because process is absolutely vital, too, to
administering the program in a good way. So we appreciate all of what
you've said. A lot of it was certainly an affirmation of what we heard
in Philadelphia, what we've heard in the written comments.

This is not the end. We still have not written this notice of proposed
rule making. We are still open for more suggestions, more comments. As
you go back after tonight and think about some of the things that were
said and you have another point that you didn't think of or didn't get a
chance to say or \-- I know there were several people here that really
didn't say very much today from outside of SSA. Please let us know if
you have another comment, another thought, a suggestion for how we
actually address some of the problems or issues that were raised.

What I've heard today, again very consistent with what we heard in
Philadelphia and what we've gotten in written comments, is that what we
need to do as we look at the listings today, 11 years after the '93
listing, is that we have a lot more experience, medical science has a
lot more experience with people living with HIV and AIDS. Certainly it's
11 years into this process. People are not dying the way they were 11
years ago, living much longer by and large, but with that brings lots of
other complications, lots of other things that we need to consider; and
perhaps our listings are broad enough and general enough to do that for
the most part, but there are things that we probably need to either use
as examples or update in terms of the effects of drugs, and drug
regimens and drug resistance, and so forth and so on. We appreciate the
specifics, but we do need specifics; so if you can think of some other
things \-- and we \-\-- some of the doctors especially in this \-- that
would help. For those of you who do know our adjudicators we need to be
as specific as we can when it's appropriate, because it does make it
easier for people to recognize things. So we need those specifics.

In terms of symptoms I think we got some good suggestions. But if you
have anything else at the episodic nature of this, the good dose, the
bad dose, how can we best present that both in policy and then in
procedures that our adjudicators can use.

We certainly heard about training needs, and this is true of a lot of
things, not just HIV or AIDS, but certainly training when you have this
many adjudicators doing very complicated work. Training is a very
difficult and ongoing challenge for us. We certainly try, but there's
always more that we can do. We heard a lot about the California DDS
today.

(Laughter.)

MS. ROECKER: And I know that the folks here in the region were listening
carefully and are going to take back these thoughts and be talking to
the DDS and talking to you all who have had those not-so-good
experiences. We need specifics though again to be able to act on
anything. We heard some issues about MEs, medical experts at hearings,
and again that's difficult to really react to without, you know,
individual cases or specifics. But, again, I think we'll take that back
and try to do what we can with it, but where you have specifics we want
to hear that. We need to hear that to be able to act.

We heard about employment issues, and although we certainly are trying
to build that into the comprehensive approach to serving our claimants
and trying to get people back to work, or return to work or transition
to work, there are lots of specific issues regarding people with HIV
working. We need to consider that as we build any kind of demonstration
projects or we try to build some return-to-work opportunities. Health
insurance, again certainly having access to treatment and to drugs is
vital to this population, and again I know Martin is very interested in
how do we do that as well as getting people back to work. So I know he
was listening and will continue to try to figure some of that out.

And I certainly heard that there are some limitations and some problems
to 14.08N, and we'll be trying to work on some very specific examples or
some ways of doing that. The rulings, maybe doing some rulings sounds
like possibly something that we could even do in advance of the
regulation if there was a compelling need or something that we could do
more quickly than you can with a regulation. The other thing a with
regulation, Barry said it's more formal and all, but it also takes
longer because again we have to have the notice of proposed rule making.
That has to clear. That has to be published. We have 60 days of comment
generally, and then we have to consider all those. So it takes a while,
even if we're trying to speed it up. It would take longer. So perhaps we
can do some thinking about some rulings. Again, you've given us lots of
good thoughts, lots of good ideas. If you have more we want to hear
them, so please feel free.

I guess one final thank you. Thank you to everybody who worked on the
meeting today. For those of you coming tomorrow we look forward to
seeing you again. I think there's almost a complete turnover though in
attendance in terms of the outside folks for tomorrow, but we'll be here
tomorrow and if you're here we look forward to seeing you again. If not,
thank you for coming, thank you for traveling, thank you for giving your
time to us and to our claimants, and we'll be \-- I think most of us
will be here for a little bit longer today, so if there's one last
comment or thought today we're available. Thank you again, and everybody
have a safe trip wherever you're going.

(Whereupon, the meeting was adjourned at 4:30 p.m.)