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**SSA Policy Conference**

**Immune System Disorders in the Disability Programs**

February 19, 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 15

**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 32

**Session One Topic: Immune Systems Listings (except HIV)** Virginia
Ladd, American Autoimmune Related

Diseases Association 42

Sarah Patterson, National Organization of

Social Security Claimant Representatives 56

Leslie Holsinger, Ph.D., National Psoriasis

Foundation 84

Michelle Vogel, Immune Deficiency Foundation 89

Duane Peters, Lupus Foundation of America, Inc. 102

Steven Taylor, Sjogren's Syndrome Foundation 129

Joan Wong & Meghan Elizondo, Arthritis Foundation 140

**Session Two: Questions for the Audience**

Moderator by Susan Lauritzen, MD

SF Regional Office Medical Consultant 176

**Closing Remarks**

Sue Roecker, Association Commissioner

for Disability Programs 235

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

"\*" denotes word was phonetically spelled.

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

Virginia Ladd

Leslie Holsinger

Sarah Patterson

Michelle Vogel

Steven Taylor

Duane Peters

Sue Roecker

Barry Eigen

Donna Sue Bongardt

Nancy Schoenberg

Sandra Moore

Susan Lauritzen

Stephen Raffanti

Martin Gerry

Glenn Sklar

Lana Minnigerode

David Hatfield

William Hatfield

William Leach

Meghan Elizondo

Joan Wong

Dale Weatherford

Michael Heitz

Bonnie Doak

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(8:30 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'm the Deputy
Regional Commissioner of Social Security here in the San Francisco
region, and I'd like to welcome you today to the conference that is
being sponsored by Social Security. We have with us today people from
our regional offices in Richmond, people from our central offices in
Baltimore, and then those of you who have actually commented on medical
listings as they apply the immune systems. We're looking forward to your
comments. We're looking forward to, you know, continued discussions of
your recommendations for change as was requested by the Agency some
months ago. I'm not going to take much more of your time. I do want to
introduce you though to \-- Sandra Moore. Dah, good morning to Sandra
Moore who is our facilitator this morning and to Susan Lauritzen who
will be our facilitator this afternoon.

Also I'd like to introduce Sue Roecker is our opening speaker. Sue has
many, many years with Social Security in the disability world and in
policy. It's her staff who will actually be looking at the listings and
determining what updates are necessary based on your considered comments
and input. Sue.

MS. ROECKER: Good morning again and thank you for coming. Anybody who
was here yesterday you're going to be bored in the next 30 or 45 minutes
because Barry and I are going to do essentially what we did yesterday.
But we probably won't say exactly the same things. You can catch us if
we say something differently that is not correct.

You all should have binders that you got when you checked in outside.
The agenda for today is in the binder. There is also material. The
presentations that we got ahead of time are printed in your binder.
There are some presentations that didn't get in in time, and for those I
believe we're getting those electronically, and anybody would like them
we can send them out to you by email after the conference. There's also
some material in there related to the advance notice of proposed ruling,
and that's the last tab, and then the current immune listings are also
in the last tab of the binder. There is after the page of the agenda for
today Attachment B has seven questions in it that we're going to go over
later this afternoon in the discussion period. So if you haven't looked
at those you might some time glance at them this morning. Those were the
kinds of things that we're very interested in hearing from you about. So
if you have anything to comment on those you might be thinking about
that over the next few hours.

Okay. Ready? I'm going to give you just a quick overview of the
disability program, Social Security programs, and most of you probably
know a whole lot about our programs. You interact with SSA all the time.
But we thought be a few of you who didn't know some of the lingo, some
of the processes, and just for the sake of those that wouldn't we didn't
want to presume that you were totally knowledgeable and that you would
get lost later in the day if some of this lingo started coming out. So
I'm going to talk a little bit about the programs, and then Barry Eigen
who is the Executive Program Policy Officer in the Office of Disability
Programs is going to talk about how we use the listings and a little bit
about the actual adjudication of disability claims and so forth.

So we are here to get your input. We have written comments from I think
most of if not all of you. So we had some questions about those
comments. We also wanted to hear more about those comments, and we
thought this kind of a setting and a dialog would be best to do that. We
had a meeting in Philadelphia, and I see some familiar faces. So thank
you folks for coming to both conferences. But we found that this was
very, very helpful in understanding your comments and clarifying what
might have been apparent discrepancies or conflicts among the different
comments that we got, and also trying to figure out we put some of this
together. So the meeting in Philadelphia was extremely helpful. We are
also doing this kind of outreach with the mental listings, and we had a
meeting in Washington, DC on that, and that again I thought we all felt
was very productive.

So today we're focusing on non-HIV. Yesterday we focused on HIV, and I
think some of us as we got here thought \"How are we going to spend a
whole day on HIV and whole day on something else?\" Because in
Philadelphia we mooshed it all together \-- and that's mooshed with two
O's.

(Laughter.)

MS. ROECKER: We mooshed it all together and we did it in one day, but we
certainly I think did not have any long periods of silence yesterday. It
was a day full with \--

(Laughter.)

MS. ROECKER: \-- lots of discussion and I think we'll have the same
today, so we're looking forward to it.

We are doing this with other listings, with other parts of our policy.
So for those of you who think maybe we're just picking on the immune
system or we're picking on HIV, this is part of our whole effort to
update all of our policy rules, all of the listings, and we are working
on a number of other listings. Last year we actually published a new
rule on polio, we did a final regulation on ALC putting that in the
listing, and then of course we did the advance notice of proposed rule
making on both the immune system and mental.

For those of you, and this is very, very elementary I know, there are
actually two disability programs that we administer. The rules that
we're going to talk about, the policy rules in terms of the medication
adjudication, are the same and are applied equally to both programs, but
there are some differences. We actually administer the Title 2 program,
which is the Social Security Disability Insurance program, SSDI, as well
as the Title 16 program, that's the Supplemental Security Income
program. Title 2 disability is for workers, people who have worked and
paid into the system, and disabled widows or widowers and disabled adult
children of those workers; and SSI has a program for both disabled
adults and disabled children.

What are the other differences between the two? And there are some.
SDDI, the Social Security component, of course is based on contributions
as well as some other employer funds, and SSI is from general revenues.
It's a needs-based program. With SSDI there is a five-month waiting
period before benefits would start. So from the date of the onset until
your benefits there would be five months without benefits payable. SSI,
again being needs-based, the payments begin immediately based on if
you're eligible based on that date of application and onset. For SSDI we
have no provision for presumptive disability or immediate payment,
whereas with SSI again being a needs-based program there is a component
that says if we have certain information, and usually it's not a whole
lot, on which we can base a presumptive eligibility we can do that and
begin payment while we finish the adjudication. SSDI again because it's
an earned benefit there is retroactive for up to 12 months. SSI there is
no retroactively. You cannot get benefits before the date of your
application. There is no separate program in SSDI for minor children,
whereas in SSI there is an SSI childhood component for folks who are
under 18. SSDI after 24 months, with just a couple of exceptions, leads
to eligibility for Medicare coverage, and in SSI eligibility or
entitlement to SSI is the gateway to medical assistance and Medicaid.

We pulled some numbers, and this just relates to the HIV and then other
immune system numbers, and these are the number of people currently
getting benefits, and these get \-- with these kinds of disorders. Title
2, that's the SSDI, HIV is a little over 70,000. All other immune system
disorders in Title 2 is about 177,000 people currently getting benefits.
For SSI, Title 16, HIV is about 45,000 and for other immune it's about
61,000. Now that little note that says counts may be higher or over, may
contain concurrently entitled, that means some people get both, are in
entitled to both because their Title 2 benefit is low, lower than the
Title 16 amount. They in effect get both benefits. So there is some
double counting of people in these numbers.

The disability process is \-- can be somewhat confusing, and there are a
number of steps to it and there are a lot of components; but it really
is a unique federal-state partnership, and the states play a very vital
role in the disability determination process. The actual applications
are taken by federal employees in our local field offices, but then the
states have components called disability determination services, a kind
of generic term that we use for those units, and they actually do both
the initial and the reconsideration determinations.

At the federal level at intake or at the beginning of the process we
have an application and we have various forms, and any of you who deal
with our claimants know about those forms, and they are pretty lengthy,
the disability report and so forth. We asked about sources of evidence,
treating sources, doctors, hospitals, et cetera, what are the
impairments, a description of the impairments, the effects of the
impairments, what does this mean in terms of functioning and any other
symptoms, as well as some work history so that what are the major jobs
that people have held are. We also have to get signed medical releases
so that we can go and request copies of medical records from all the
treating sources, and then there is also an initial of substantial
gainful activity that is handled at that first level.

But then once all that intake is over and we have all that information
it is then sent to the DDS, and the DDS, the bulk of their activity
really because it is time consuming, is trying to obtain medical
records. And they request them from all the treating sources that are
relevant and have been identified, and then if necessary they will
purchase a consultive exam is there is a piece of information that they
don't have from the records. Then they will make the determination, and
this is a team effort with a medical consultant and a disability
examiner. In your packets there is a \-- this is an old slide. So on
this slide if you're looking at it the very last items says refers cases
for vocational rehabilitation. That's no longer accurate, so just, you
know, line that out. Now we have ticket programs and some other things
and that's not exactly what happens.

But if there is a denial then there is an appeals process after that
initial determination, and the first level of appeal is the
reconsideration. That case goes back to the DDS for another look, and
they do pretty much a paper review, but they do collect additional
information and evidence if there is some additional medical evidence
that wasn't in the file for the initial determination. If that is denied
and if it's appealed the next level of appeal is a de novo hearing
before an administrative law judge, and then the final level of
administrative appeal is a request for review by the Appeals Council,
and that's an SSA component. After that you've exhausted your
administrative appeals and you're probably exhausted, too, but after
that you can appeal to Federal Court and of course then it's the
District Court first, and so forth. So it is a cumbersome, a long
process if you go through all the appeals, but they do offer folks an
avenue for continuing to pursue their claim.

So that's kind of the process in a nutshell, and a very small nutshell.
If you have any questions about that we'll be glad to answer to them.
Just in case you hear some of these terms, and I know we have folks here
from both the

\-- some of our DDSs and we do have some administrative law judges here
and appeals judges here. So we tried to represent our process as well as
getting input from them.

In terms of the rule making, there are certain steps that we have to
follow and that we are following. We did publish for these. For both the
immune system and the mental system we published what's called an
advance of notice of proposed rule making, and the advantage is that it
provided us an opportunity to have these kinds of meetings and
discussions without the restrictions of an official rule making process
when that kicks in. So we can have these kinds of discussions, you can
send us comments, we can talk to you about those comments before we
actually start writing the notice of proposed rule making. We think this
has been very beneficial for us. It takes a little bit longer to do it
this way because, you know, you're adding steps and time, but again
that's where we are in this. Then after getting the comments we've had
as I said the conferences, and we'll go back after we get this input and
start figuring out what we want to put into the notice of proposed rule
making, what are the areas, pieces of the listings that we need to
change. We need to update because, you know, there's some changes in
medical science, some things that perhaps we want to add to it, some
things we might take out of the listings, but we're taking all the
comments and some other information that we certainly have from actual
experience in using these rules, and then we drafted the PRM. There will
be another comment period. This is a formal public comment period. We
get those comments and then consider them, and then we draft the final
rule, and that goes through the clearance process. Then once it's
published as a final rule then that becomes the policy.

We do have a website for comments that we use for the ANPRMs and will
continue to use this as the rule making continues. If you haven't been
to the website you might want to check it out. All the comments are
posted there I understand from the ANPRM. So if you haven't seen others,
the comments that others submitted, you can do so at the website.

And for anybody, this the commercial part of it, I just want to talk
about the SSA website. For anybody who wants information about SSA's
programs and so forth most likely you can find it on the website, and
here's URL, the socialsecurity.gov. In terms of disability this is a
screen shot of the homepage for disability programs. There's a lot of
general information there, and as I said most likely if you a question
you can find the information here. You can also file online for Title 2
disability benefits, and you can complete those difficulty reports, the
3368, 3820, et cetera, online. So here's a screen shot of what that
looks like. All the rules and regulations are available online, so
here's the screen shot of that, and finally we have a work site that
provides a lot of information about the working incentive programs,
Ticket to Work, et cetera, for anybody who is interested in learning
more about that.

I think that's the end of the commercial. Are there any questions about
the process? I know that was very quick. Okay. So Barry is now going to
really confuse you and talk about the sequential evaluation process and
how we use listings and so forth.

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

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

**by Barry Eigen**

MR. EIGEN: If you were having trouble sleeping last night you're in
luck.

(Laughter.)

MR. EIGEN: So the first thing I have to ask, I ask this at every talk,
but it may be especially relevant in this talk. Is there anybody here
who has trouble seeing the slides or with reading them in your books?
Because if you do I'll make sure that I say what's on the slides. Okay.

As you know, my name is Barry Eigen. I'm kind of the chief policy wonk
for the Office of Disability Programs. We're the people who write all of
the various rules and instructions that disability adjudicators use when
they decide whether a person is disabled. The rules include things like
regulations, which we're going to talk about today quite a bit, and also
various other kinds of documents. For example, we may talk about another
kind of policy document called a Social Security ruling, which is
binding on all of our adjudicators but not necessarily on people outside
of the agency, for example, the courts, the way regulations are.

Okay. So let's start with the first slide. What I'd like to do today is
give \-- make sure we're all on the same page for the discussions we're
going to have throughout the day. Basically we're here to listen to you,
but the idea is that we should be oriented and understand what the
listing is, how to use listings, and I want you to also remember \-- I'm
going to say this over and over \-- that the listings are not the end of
our way of determining disability. They're just one way of finding that
a person is disabled. People who don't have impairments in our listings
can still be found disabled in other ways which I'll explain later. The
other thing I'd like you take away from this, from this short talk, is a
sense of what people like Sue and some of the staff here and I have to
think about as bureaucrats \-- I'm saying this, bureaucrats, in a nice
way by the way \-- bureaucrats who have to write rules that are
understandable, up to date, that will endure at least for a long enough
time that it's worth the effort to revise them, at least last for a few
years, which in the field of medicine and particularly for these kinds
of impairments changes rapidly as everybody in this room knows.

So as you're thinking of suggestions for us I hope you'll try to also
but yourself in our shoes and say to yourself, \"Well, what do they do
that would useful \--.\" Well, I've already said all those things. So
let's move on to the technical stuff.

This is also a civics lesson. You probably remember from high school
that Congress makes the laws and the President signs them, so I have a
picture of the Capital building, the legislature there. This is the
definition of disability in the statute, and there are three important
things to notice about it. The first thing is that it's a very severe
standard based on essentially an inability to function, an inability to
do substantial gainful activity, which is a fancy way of saying work,
and I'll tell you more about what it means. But it's a very strict
standard. It uses the word \"any\", any substantial gainful activity.
The second thing to notice about it is that the primary basis for the
disability has to a medical impairment, a physical or mental medical
impairment; and furthermore the impairment must be medically
determinable, and the statute and our regulations tell us that medically
determinable means that the impairment has to be shown \-- when I use
the word \"impairment\" by the way, in our lingo that just means
condition. That the medical condition has to be shown by signs,
symptoms, and laboratory findings, and furthermore the statute specifies
that we can never establish a disability based on symptoms alone. That's
worth repeating I think. We can never establish a disability based on
symptoms alone. That's in the law. Then the third thing to notice about
this definition is that it contains what we call a duration requirement.
It's not enough to be unable to work because of this impairment. The
impairment has to have lasted or be expected to last for at least 12
months or to result in death. Next slide please.

Now the law doesn't say a lot more about what we should be doing, but it
does say a little more and what it says is very important. The very next
paragraph in the law explains that a person can be disabled only if \--
it says his, but I'll say his or her, medically interminable impairment
is so severe \-- and I have that bolded because it will show up in our
regulations later \-- that it not only prevents the person from doing
previous work, but also any other kind of work. But then it also says
something that's a little confusion. It says but we also have to
consider not just the person's medical condition. We have to consider
the person's age, education, and work experience. So what it means in
practical terms is that if it was possible to have a person \-- say a
person who was 22 years old and a person who is 62 years old and they
have exactly the same medical impairment which hypothetically has
exactly the same functional effects on the people. It's possible under
this definition in the law that the 22-year-old would not be disabled
but the 62-year-old would because of complicated rules we have to
implement this.

Now you'll also notice that I put in little dots at the end, little
ellipses. That's because the law goes on also to say \-- and this is not
the slide \-- that when we talk about whether a person can do any other
work it says it doesn't matter whether there were job openings in that
work, it doesn't matter whether the person would be hired for those
jobs, and it doesn't matter whether the jobs exist near where the person
lives. The reason it says that is that Congress was explaining that the
issue here is not whether the person can get a job. All these words on
the first two slides just describe a way of defining of level of
severity of disability. It's not that the person should go to work. It's
just saying if you had this job could you do it so we can describe how
severe the disability is.

Okay. So that's the statute, and then the statute says, well, that's not
a lot of detail. So the Commissioner in the executive branch \-- so
there's a picture of the White House \-- has the authority to write long
rules explaining how she's going to implement the statute. This is how
we do it. It comes from a big book like that which has all of our
regulations in it. What doctors would call this, and in fact a doctor
did use this word yesterday, is a matter of fact an algorithm. What it
does is it follows the words of the statutes. SGA meaning substantial
gainful activity; PRW means past relevant work. So that's a reference to
a person's previous work. What you do is you start at the first step,
and if you can make a decision you stop, and if you can't you go on to
the next step, and if you can make a decision you stop; and so on and so
on and so on until you get the end. The idea is it's an administrative
efficiency for us so that we don't have to consider everything about a
person in every case. We don't have to consider age, education, and work
experience for example in every case because in may cases it's
unnecessary. For example \-- why don't we just go on to the next slide.

For example, the very first line in the definition for disability says
you have to be unable to engage in substantial gainful activity. So the
first step in our sequential evaluation process says \"Are you engaging
in substantial gainful activity?\" because if you are you're obviously
able to, and so we say it doesn't matter how serious your medical
impairment is. If you're doing SGA you can't possibly \-- it doesn't
matter whether we consider all the other things in the definition of
disability because you can't be found disabled. Most of you probably
know that SGA is basically a monetary test, an earnings test. It changes
from year to year, and this year it's \$810 per month for a person who
isn't blind; and by statute there's a higher amount for statutorily
blind, and this year that's \$1,350 a month.

Most people who come to us are not engaging in substantial gainful
activity, so most people we start with the second step, or we move onto
the second step I should say, where we consider two things. First of
all, does the person have a medical impairment, and as I mentioned that
means a person has to show signs, symptoms, and laboratory findings
showing us that they have something. Again, we can't base it on symptoms
alone. The other thing we ask at this step is whether the impairment is
severe, and the reason I have the word \"severe\" is quotes is that in
our program the word \"severe\" doesn't the same thing you might think
it means just walking around on the street using it. In fact, our term
severe is not a very severe standard. It's in fact a low hurdle as the
little picture shows. It just means that you have more than a slight or
minimal impact on your ability to do a basic work activity. So most
people who come to us are not only not engaging in substantial gainful
activity, but they also medical impairments and usually they're severe.
Very few people have \-- relatively few people, have non-severe
impairments.

So we call that step, by the way, a screen step just in our \--
internally. We talk about these three steps as being screening steps
because they're ways of quickly deciding cases. If a person is working
the case is over. It a person doesn't have an impairment, it's not
severe, the case is over. The third step is also a screening step, but
it's the opposite of it. It says is a person's impairment so severe that
there's no point in going on because we will definitely find this person
disabled. So there's no point in considering age, education, and work
experience, 22, 62, it doesn't matter. The person will be disabled.
That's what the listings are, and that's what we're going to spend the
most time on.

Okay. Now, listings \-- I have no idea. I'm holding my notes like I'm
looking at them, but \-- anyway the listings are an appendix. I've
already held up this book. This is called the \"Code of Federal
Regulations\" and this book has most of Social Security's rules in it.
In one of the chapters in this book there is an appendix, and the
appendix includes this listing of impairment. What it is, it's many,
many pages divided up by body systems the way you learn about them in
high school \-- cardiovascular, musculoskeletal, we have mental, and as
you know we have an immune system \-- and within those body system we
have specific rules that describe particular medical conditions or kinds
of medical conditions \-- they're not always specific diagnoses \-- with
particular medical findings, and sometimes also with particular
functional findings. If you have exactly what's in that rule you're
disabled. We say that you have an impairment that meets a listing.

If you want to see what listings look like look in the back tab of your
books. You should have copies of the listings for the immune system.
Each one will start with 14.00 and one will start with 114.00. You
should do this anyway, by the way, because I'm going to talk about how
the listings are constructed in a second. That's what the immune body
system looks like; and if you found the handout, if you look about
halfway through the handout \-- taking either one. It doesn't matter
whether it's 14.00 or 114.00. You'll see that it starts with a lot of
dense text with paragraphs and paragraphs and paragraphs. But about
halfway through you'll reach a point where it looks more like an
outline, and the numbers will start going up after the decimal point. It
will be like 14.02 or 114.02. Those are the actual listings. Those are
the rules that show whether you have an impairment that meets the
listing. The only other thing to point out, again this will be the
second time, is that we use listings only to allow people. When a person
does not have an impairment that meets a listing we just go on in the
sequence, and I'll remind you of that again. Okay. Next slide please.

These are the names of the body systems in the listings, and as you can
see we divide the listings into two parts; one for adults, which we
define as people who are at least 18 years old, and the other the
children, which is everybody else. You should know sometimes we can use
the adult listings for children, but never the other way around. We can
never use the child listings for adults. Okay?

This slide just illustrates that the immune system under our rules is
actually a relatively recent rule. It's unusual for our rules to be as
young as 10 years old believe it or not, but one of the ways you can
tell that it's a more recent rule is that if you compare it with other
body systems it's a much longer body system because we put in more and
more detail as we revise our listing. By the way, there's a typo on this
slide. We actually starting using the inflammatory arthritis rules in
2002. We published them in 2001. So that's a typo. That's all I want to
say about that slide.

Okay. Now if you're still looking at your listings if you just look
through the dense paragraphs while I'm talking \-- in fact you can even
stop listening to me \-- if you haven't already.

(Laughter.)

MR. EIGEN: The first part includes information about how to apply the
listings and also how to evaluate disability with people who have the
kinds of disorder, and then when you get to that part that looks more
like an outline you have the actual listing disorder. So everything from
the second line down describes the various listings. So for example
systemic Lupus is listing 14.02. The next one down is 14.03 and so on
until you get to 14.09 or 114.09. The immunity disorders is for
disorders of cell-mediated immunity apart from HIV, as you probably
would have figured out anyway.

I think you'll be especially interested, I was reading your comments
last night, and I think you'll all be especially interested in this
introductory text, particularly the (B) paragraph. On your handout the
(B) paragraph is actually about a three- or four-page paragraph, and it
starts as the second paragraph on the first page, but then it goes on
and on and on. The reason it does that is because we tried in this
particular body system to define and describe various specific
impairments of the immune system that people might have, the various
disorders there in the listings. Here's a think to think about today as
you put yourself in our shoes. Even though these listings are barely 11
years old some of your comments pointed out that some of these
descriptions are already out of day. Other comments pointed out that
they're incomplete. So advice about that would be very helpful to us.
Okay. Next slide.

Also if you look at the listings, the parts that start with 14.02, to
you it might not appear unusual, but to me, a person who is used to
looking at listings, you can see \-- I can see that these listings are
not like many other listings. Many other listings in our book list
impairments, say diabetes, and then they say you're disabled if you have
diabetes \"and,\" and give, for example, episodes of \-\-- acidosis or
something like that. Most of the listings we're talking about today
don't do that. They say you have X \-- systemic Lupus. I'll keep
referring to the first one \-- and it causes a problem that meets a
listings in another body system. It doesn't say anything especially
specific to the impairment. So one of the things I hope we talk about
and think about today is is that a good way to have listings for these
kinds of disorders. The other thing you'll notice about the listings in
this body system is they do try to have an alternative criterion, but
it's not very specific. It talks about having a moderate affect in an
organ, which I'm not even sure what it means to tell you the truth and
I'm one of the guys who writes the rules. So that would be something
talk about. In a sense it's different, and you can tell how we improve
as we issue newer and newer regs because if you compare the first few,
the 14.02 through 14.07, with 14.09, which is the one for inflammatory
arthritis, that's a much newer listing. Remember I told you we published
it in 2001. That listing has more disease-specific information. It has
an array of criteria that describe affects in various joints and the
spine of varying severity. So that might be a thing to compare with the
preceding listings as we talk about what to do. The slide does point out
that there are some impairment-specific criteria within the early
listings in this body system, but if you just take a quick look you'll
that there aren't very many. I just gave you a couple of examples, but
that's almost all the examples there are.

Okay. All right. So we're done with the listings for now, and we'll just
\-- how am I doing on time? Who is my timer? I'm fine? Okay. Just to
close out, I mean, this is all very complicated of course; and in case
you haven't noticed I could probably talk about this for the next five
hours, but I'm just going to quickly close out the sequential evaluation
process. Now remember if you're engaging in substantial gainful activity
you're not disabled. If you're not you go to the second step which asks
do you have a medically-determinable and impairment and is it severe. If
you don't, you're not disabled. If you do, we go to the next step where
we say is your impairment so serious that we're just going to presume
that you're disabled. That's where we talk about meeting the listing,
but also say we couldn't possibly list every impairment a person could
possibly have in this appendix; and furthermore some people have
impairments that are listed but they're not as bad, but they have a
bunch of impairments. They have two, four, five impairments that maybe
together are just as bad as the impairments that are in the listings. So
we have a policy that allows people to qualify under the listings even
when their impairments don't meet exactly what the listings say called
medical equivalents. That's all I'm going to say about that today. I
just want you to understand that that's one of the things that we're \--
okay.

So if you have an impairment that meets medically equals a listing
you're disabled and we stop. But if you don't, are you not disabled?
This is for you. No, you are not not disabled. We have to go on to steps
four and five to find out whether you're disabled. Remember, the point
about the listings is they presume that everybody who has what's in the
listing will qualify as disabled under our rules. So we don't consider a
person's age, education, and work experience. As a matter of fact, the
listings are based on a stricter standard of disability than is
necessary to show disability under the statute. In fact, what we say is
the listings describe an inability to do any gainful activity, which is
not the same thing as any substantial gainful activity. Okay?

So when we get the past listings the first thing we do is we say,
\"Well, we already know you have a severe physical or mental impairment.
How does it affect your ability to work?\" And we do that by assessing
what we call residual functional capacity, RFC. It's supposed to be what
you're able to do on a sustained basis in a work situation physically
and mentally, everything you think of, and we use that assessment first
of all to decide can you do your previous work as the law requires. We
have a rule that's called past relevant work, but we don't have time to
go into all that now, and it's probably not important to today's
discussion, but if I'm wrong we can talk about it later. Anyway,
obviously if you can still do your previous work you can't be disabled
because the law says you have to not be able to do your previous work.
In that case we would stop. But if you can't do your previous work, or
as often happens in SSI you don't have any previous work, we go on to
the last step; and the last step is the full-blown definition of
disability that considers a person's age, education, work experience,
their RFC, their residual functional capacity. It's a very complicated
step. We used another appendix in this book. Many of you have probably
heard us throw out the words \-\-- rules. We have rules that we use
either to direct decisions or as framework for decision making, but we
have to determine whether there is other work that exists in the
national economy that you could do basically, that you can make an
adjustment to.

Is there anything else here? Okay. So I'm done with the dry part of the
lecture, and so I was thinking as I was reading the comments, \"What are
the kinds of questions I would ask myself if I were you trying to give
us advice?\" Obviously there's some overlap here. Some of these things
mean the same thing, but these are the kinds of questions I would ask.
Are they up to date? Are they complete? Are they correctly identifying
people who should be qualifying? Are they incorrectly identifying people
who should be qualifying? Because that's something we have to worry
about, too. Are there are other criteria we should be adding? Many
people suggested that in their comments, so I'm sure we'll talk about
that. But anyway I won't read all these, but that's the point of these
questions. So now I'm done. If you have any questions for me or for Sue
I'll be glad to take them.

MR. PETERS: Two questions. I know you probably can't answer this, but
just maybe as a point of an issue. You had mentioned the fact that the
law makes no distinction as to whether or not the job is available in
the area in which you live. However what if \-- and maybe this a
hypothetical situation, but I'm thinking of people with Lupus who have
severe joint pain and so forth. If the only job that's available \-- I'm
thinking let's just say somebody who lives in a very rural area where
they are no longer able to function in that existing job that they had
before and the only other jobs that are available surrounds are jobs
that would aggravate or further, you know, harm the individual, like
mining or something along that line, I mean, it seems that there has to
be some sort of consideration as can the person do the work that is
available. I mean, because otherwise \-- I understand it's not SSDI's
responsibility to give people a job, but to protect them if they become
disabled. But the fact that they can do any of the jobs that are in the
area does indeed make them disabled.

MR. EIGEN: In a sense you're absolutely right, but that's why I made
such a big deal about it at the beginning. There is a what you call
legislative history, quite a bit of it actually. It goes back decades,
in which Congress says repeatedly that this isn't intended to be an
unemployment program and that makes clear, or relatively clear, that the
whole point of the statute about this subject is not that the person
could a job. So it doesn't matter.

I'll give you an example of an issue that drives us all crazy. What if
you're a person who \-- at step five we consider age, education, and
work experience. What if you're a person who lives in Puerto Rico and
you only speak Spanish, but your \-- you only speak Spanish and you're
in Ohio or whatever. We don't consider that. We just use a national
program that says most people have to speak English even though it makes
sense that a person living in Puerto or Texas who speaks Spanish should
be able to get a job over there speaking Spanish. We just say, no, we
have special rules that say if you don't speak English you might be
found disabled. So the whole point of all this is it's a hypothetical
test of disability, not a test of whether you can get a job. So it hurts
to think about it. I totally understand what you're saying. I mean, it's
not even common sense necessarily, but that's why I made it a point of
bringing it up so that you could understand that, what it is we're
trying to do in these rules. We're bound by a law. You know, unless the
statute changes that's \-\--. That's a great question, and it's very
vexing obviously.

One other point about that by the way. We do have a rule that says if
the only other job you can do is an isolated job that really doesn't
exist except in one place we don't count that. We won't hold that
against the person. Anything else? Okay.

MS. MOORE: Thank you, Sue. Thank you, Barry. Okay. We're going to move
on to the next. Social Security is gathering information from coast to
coast on perspectives regarding the immune system listings. We have two
young ladies who will bring us the summary of major themes from the
Philadelphia conference in a very unique way. Please welcome Donna Sue
Bongardt and Nancy Schoenberg. While they're coming I just want to
remind you to complete your evaluations. If you leave please complete
those before you leave.

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

**by Donna Sue Bongardt and Nancy Schoenberg**

MS. SCHOENBERG: Hi, everybody. I'm Nancy Schoenberg and this is Donna
Sue Bongardt. We both work in the Office of Disability and Income
Security Programs. I have been with the Office of Hearings and Appeals
since 1991 and am on detail. I'm an attorney. Please don't hold that
against me. Donna Sue has worked everywhere in the agency and has now
landed under the clutches and auspices of Martin Gerry. After the
Philadelphia conference Pat and Martin \-- Pat is our Assistant Deputy
Commissioner \-- asked us to do a summary of the themes, the major
themes that came out of Philadelphia, and so we did this whole recap,
and it's about what we did, why we did it, what we learned, and how this
benefits the agency.

We did do a formal Powerpoint. The one that applies to today's group is
the last document before the handout section in your book. We will not
be giving this Powerpoint. You can look at it later. We're going to do
something a little different, so sit back and enjoy the show.

MS. BONGARDT: Good morning. My name is Donna Sue, and Nancy and I are
actually going to be \-- you'll find out. We're going to do a skit this
morning that basically goes over what we learned, and I think you'll
find it enjoyable and hopefully informational. Thank you. So if we can
go to the next slide \-- it's not going.

(Adjusting equipment.)

MS. BONGARDT: This is our 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. Note this
constitutes official guidance only. Instead the Social Security \--

MS. : No, it's not.

MS. BONGARDT: Sorry. Instead the Administration hopes to gain more
knowledge and understanding in San Francisco to build on what was heard
and discussed in Philadelphia.

Okay. 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.

MR. : Well, that's a good conversation.

MS. SCHOENBERG: (Singing \"Born to be Wild.\") Donna Sue, the IG is
going to investigate you for working too many hours. You're not allowed
to do it.

MS. BONGARDT: Oh, gosh, \-\--. Oh, I completely lost track of time. I've
been so busy with this Powerpoint I've been working on.

MS. SCHOENBERG: Yes. Well, you look like you could use a break. You know
what they say. All work and no play makes Donna Sue a boring girl.

MS. BONGARDT: I know, but I've got to get ready for this policy
conference in San Francisco. Martin and Pat asked me I would give a
presentation on the themes we learned from the Philadelphia conference
we had back in December.

MS. SCHOENBERG: Donna Sue, besides perfecting the Powerpoint what do you
do at these conferences and who comes to me?

MS. BONGARDT: Well, we go out to discuss our latest advance notice of
proposed rule making. 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 with the disorders themselves or people who are
really knowledgeable about them, the doctors, the advocates, interest
groups, and others who are out there helping people apply for disability
benefits.

MS. SCHOENBERG: And how does this help us do the rule?

MS. BONGARDT: Nancy, these people have so much to teach us, things we
might not realize or be aware of unless we took the time to listen.

MS. SCHOENBERG: Like what?

MS. BONGARDT: Well, like how diseases, different diseases, affect women
differently than man and how the affects of multiple impairments is
exponential rather than linear.

MS. SCHOENBERG: Multiple impairments?

MS. BONGARDT: Right. Multiple impairments are exponential rather than
linear.

MS. SCHOENBERG: Linear.

MS. BONGARDT: Right.

MS. SCHOENBERG: Exponential.

MS. BONGARDT: Exactly.

(Laughter.)

MS. BONGARDT: Exactly.

MS. SCHOENBERG: Can you, you know, maybe give me maybe a real-life
example?

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

MS. SCHOENBERG: Yeah?

MS. BONGARDT: Well, did you know that when someone has Lupus many times
they develop another autoimmune disorder?

MS. SCHOENBERG: Actually I didn't know that.

MS. BONGARDT: Well, it's very common, and when a person has two
autoimmune disorders the effects aren't exactly doubled. They're more
like tripled, quadrupled.

MS. SCHOENBERG: Oh. I see. So it's kind of like you and me, we each
have, like, conditions, and each of our conditions just by themselves
aren't that big a deal, but when you put them together it's rather
exponential.

MS. BONGARDT: Exactly.

(Laughter.)

MS. BONGARDT: Exactly.

MS. SCHOENBERG: So what else did you learn in Philadelphia?

MS. BONGARDT: Well, some of the most eye-opening presentations in
Philadelphia actually came from the individuals who had the disorders.
They talked about how complicated these illnesses can be and how
devastating the effects can be. So when you talk about looking for a
qualified doctor who can weigh in on severities you need doctors who are
in current practice who are abreast of all the latest developments and
treatments for the conditions, and also who devote a substantial
percentage of their case load to working cases that deal with these
specific disorders.

MS. SCHOENBERG: Well, that makes a lot of sense, and it's great if you
live in a big city. But what if you don't live in a place like that with
a lot of specialists? Like say you live in a state like Georgia in a
town like Reedsville where the only thing there is a state penitentiary.

(Laughter.)

MS. SCHOENBERG: Then what are you supposed to do?

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

MS. SCHOENBERG: This is really depressing. Do people who have immune
disorders suffer from depression? I mean, is that a common factor?

MS. BONGARDT: It is a common factor. Many people with immune disorders
suffer from depression, whether it's a direct result of the disease
itself or is a side effect of the medications. When people are depressed
it can affect their ability to adhere to their treatment, which in turn
can reduce the likelihood of the treatment's efficacy.

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

MS. SCHOENBERG: So what's the answer?

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

MS. SCHOENBERG: Isn't there any middle ground?

MS. BONGARDT: Well, I suppose ideal situation would be an employer who
allowed them to work a flexible job at alterative job sites, maybe even
do some work from home, and guarantee them health insurance. But that's
a very difficult combination to find.

MS. SCHOENBERG: Yeah. I think our rules are pretty rigid. I mean, if you
want to work you can't be disabled, and if you're not disabled you can't
health insurance from the government. So you're kind of stuck.

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

MS. SCHOENBERG: Donna Sue, now that you're working with these big policy
wonks isn't there anything SSA can do to help these people?

MS. BONGARDT: Well, I think we are trying to help them. We're trying to
be more flexible and listen to how we can make our rules better.

MS. SCHOENBERG: You are? Really?

MS. BONGARDT: Yes, but \--

(Laughter.)

MS. BONGARDT: I lost my card.

(Laughter.)

MS. BONGARDT: But we're bound by the statutory definition of disability,
which is an illness that's expected to last at least 12 months or
longer, or be considered terminal.

MS. SCHOENBERG: I heard that Barry Eigen tells people that. I don't know
if I have enough sick leave to cover 12 months, and I don't have enough
money to last that long to pay all my bills. I can't imagine not having
health insurance. How do these people survive?

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

MS. SCHOENBERG: Well, Donna Sue, this stuff really shakes and bakes.

MS. BONGARDT: Yeah, policy is really great. It's about the changing
needs of people with disabilities and designing rules that are flexible
enough to change as their treatments do. It's dynamic.

MS. SCHOENBERG: Man, this sounds really radical. I might like to be part
of something like this.

MS. BONGARDT: Well, Nancy, we can use every person that wants to makes a
different. How many people can go to work every day and feel that their
efforts affect millions?

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

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

MS. SCHOENBERG: Don't forget your Powerpoint.

MS. BONGARDT: Oh, yeah. Thank you.

MS. SCHOENBERG: (Singing \"Born to be Wild.)\"

(Applause.)

MR. : That song is great.

MS. : Is there an agent in the house?

(Laughter.)

MS. MOORE: Okay. We're going to take a 15-minute break before we go on
with our speakers. Okay. What time is it? I left my watch over here.

MS. : 9:35.

MS. MOORE: 9:35? Okay. Then 15 minutes. Come on back at 9:55 \-- 9:50.
Sorry.

(Whereupon, a short break was taken.)

MS. MOORE: Okay. I would just like to say that we are grateful to have
all of our speakers here today. What we will do is we will go through
each of the speakers. You will have an opportunity to ask questions
after each speaker. Okay? And then we'll take maybe a five-minute
stretch break after the second speaker and continue until lunchtime.

**[Session One Topic: Immune System Listings (except HIV)]{.underline}**

MS. MOORE: The first speaker I would like to introduce is Virginia Ladd
from American Autoimmune Related Diseases Association.

**Presentation by Virginia Ladd**

MS. LADD: That's correct. Thank you very much. First I'd like to thank
the organizers and the Social Security Administration for inviting
myself to make this presentation on behalf of people with autoimmune
diseases. I very much appreciate it. That National Institutes of Health
estimates that up to 22-million Americas are affected by autoimmune
disease, and this number includes only those diagnosed for which \-- for
only those diseases there are epidemiology studies. So even in their
report to Congress they said that up to 22-million was probably an
underestimate, also given the fact that many of these diseases have a
difficult time being diagnosed. By gender there's definitely a gender
bias on the part of autoimmune diseases, and this is autoimmune diseases
as a whole. About 75 percent are women, about 25 percent are men. There
are approximately 100 such diseases affecting we say up to

50-million, and that's based on a genetic predisposition breakthrough.
They cost according to Dr. Faulchi\* at NIH approximately \$120-billion
annual, 250,000 cases are diagnosed each year; and this was a surprised,
a study that was published in the last two years, that in fact they are
one of the top 10 causes of death in women \-- actually number five.

Then 24 of the most common autoimmune diseases, and I put this list up
here because very often autoimmune diseases are thought of as the
rheumatic autoimmune diseases \-- Lupus, rheumatoid arthritis,
Sjögren's, Scleroderma, and the ones in that area. But in fact there
are, you can see, many more autoimmune diseases that are not rheumatic
\-- primary biliary cirrhosis, rheumatic heart disease. Rheumatic heart
disease is actually one of the major causes of cardiomyopathy and, as
you probably know, cardiomyopathy is a big disabler.

The history of autoimmune disease. There are many different disciplines
involved, but there is no autoimmunologist. So in the skit we heard
something about a patient having to go to many different doctors because
many of the autoimmune disease are systemic in nature, so they may
involve the lungs, the kidney, the central nervous system. Well, that's
a pulmonologist, rheumatologist, nephrologist, and neurologist just in
those symptoms, and that's true with multiple autoimmune diseases. So
many different disciplines involved. This also interferes with the
diagnosis. We know from a study that we conducted that the average
patient sees 4.9 doctors over four-and-a-half years prior to getting a
diagnosis that is confirmed by a second opinion and a specialist so we
know they really have it. Interestingly enough, over 50 percent have
been told they were too concerned with their health or chronic
complainers prior to getting that definitive diagnosis. So that's part
of it, because of many disciplines. Rheumatologists tend to think in
terms of joints, and neurologists tend to think in terms of the nervous
system and really don't hear the patient say, \"My knees hurt.\" They
just don't hear it. \"Well, why are you telling me?\"

There's one called Wegener's granulomatosis that starts out with a very
bad inflammatory process in the sinuses, and so they're sent to ear,
nose, and throat doctors all the time who cannot find an allergy, who
cannot find an infection, and they never hear the patient their knees
hurt, which is a primary symptom, and once the lungs and kidney are
involved it can be a lethal, fatal disease. It often has a history of
three or four years prior to that of somebody seeing many different
specialists. So there's a lack of focus on the underlying etiology,
which is the autoimmune response, autoimmune meaning self-immune, your
immune system attacking yourself. I like to explain it in defense terms.
It's like friendly fire.

Pretty much the research is disease-specific. So you'll see research in
\-\-- diabetes. That will be one silo\*. You'll see research in
Scleroderma. That might be another

silo\*. You'll see endocrine diseases. That will be another silo\*, but
not a lot of crosstalk about the research among the different
disciplines. There's also a lack of a coordinated approach at NIH, which
has resulted in much duplication, and this is actually getting better
with the National Institute of Health Autoimmune Disease Research
Coordinating Committee, which has now developed a national research plan
for autoimmune disease.

There's very little public awareness of autoimmunity as the underlying
cause of these diseases, and the problem with that is they do run in
families, they are genetic connected. As was stated, a person with one
autoimmune disease can develop other autoimmune diseases. It's not
uncommon at all, but within a family you may have three or four
autoimmune diseases which would seem unrelated. Now the family really
doesn't \-- may not know they're autoimmune. We know from a Roper study
that only 5.5 percent of Americans can even name an autoimmune disease.
So it is not a question that's asked on a health history when you see a
new physician. So the fact that your brother has Crohn's might not show
up in your history when you're presenting with symptoms of some other
autoimmune disease.

So under the disability evaluation in Social Security \-- which is what
we're here on. I wanted to give you that background, though, first \--
listed disorders include impairments involving deficiency of one or more
components of the immune system, antibody-producing B-cells, and a
number of different types of cells associated with cell-medicated
immunity including T-lymphocytes, macrophages, and that's what's
involved. That's how it's listed. This is what you use to determine
what's autoimmune, B-cell, T-cell, antibody driven. It's a disregulation
or thought to be disregulation of the immune system, although there is
discussion whether it's a disregulation or an immune deficiency. But
nevertheless, there is some disregulation of the immune system that may
result of the development of connective tissue disorder. Now, connective
tissue disorders involve multi-systems and different in their clinical
manifestations and outcomes, but generally involve and persist for
months or years and may result in functional \-- loss of functional
ability. This is what you say in the evaluation process. We believe that
all autoimmune diseases should be listed under one category because they
share the same etiology and genetic connection. I know that's not the
way you're set up, but you are I see putting many more over there under
autoimmune; and so we would like to encourage that, because in the
listings in the manifestations you can see really some very significant
similarities in how they actually end up affect the person.

Serious and disabling autoimmune disease that are not listed, Behcet's
disease, very serious, a sometimes fatal autoimmune disease. It causes
many of the many of the symptoms that you might see in Lupus. Chronic
inflammatory demylineating polyneuropathy would look a lot like
polymyositis or one of the other neuromuscular diseases that escapes me
right now. Antiphosphalipid Syndrome can accompany multiple autoimmune
diseases. It's not unusual. It's often thought to be associated with
Lupus because a very high percentage of Lupus patients may have
Antiphosphalipid Syndrome, but it also accompanies many of the other
autoimmune diseases including even thyroiditis. Bullous pemphigoid,
which is an autoimmune skin disorder and also a very serious,
life-threatening illness, that would cause joint pain, fatigue, and many
of the very similar symptoms that you would see associated. \-\--
psoriatic arthritis, primary biliary cirrhosis, Crohn's disease \-- with
Crohn's disease you tend to think of the gastrointestinal, and it is
gastrointestinal autoimmune disease, but it's not at all unusual for
somebody with Crohn's disease to have arthritic manifestations.
Autoimmune hepatitis, one of the fifth reasons people call our office,
yet very underestimated in its damage to the patient because they end up
needing transplant because they are not diagnosed. Usually it's four to
five years before someone even thinks of autoimmune hepatitis. However,
you will see a whole history of testing for hepatitis C, hepatitis B,
hepatitis A, but no consideration of autoimmune hepatitis until the
liver is significantly damaged.

There has been a paradigm shift in our knowledge about autoimmune
diseases, especially in the last decade. Autoimmune diseases are now
known to have a common disease pathway, be genetically linked.
Autoimmune diseases need to be recognized as a category similar to
cancer rather than being listed under the part of the body affected.
That is actually how they're treated, and that is what results in a
significant problem for the patient, seeing these multiple doctors with
multiple opinions, and when it comes to a \-- when they apply for
disability the doctor that may be seeing them, you know, they may have
this whole other system involved of which this doctor is not really
cognizant of and knows very little about actually.

Autoimmune is the cause of disease, although atomically autoimmune
diseases are very diverse and can affect almost every organ or system in
the body, and some of the autoimmune diseases such as Lupus can also
affect any part of the body. Behcet's can affect any part of the body.
Sjögren's can affect many parts of the body.

Autoimmune liver disease can also cause arthritis. So the systems
involved in autoimmune disease are gastrointestinal, endocrine,
circulatory, cardiovascular, pulmonary, neurological, eye, ear, skin,
kidneys. This just kind of gives you an idea, kind of a scheme here.
This actually can show that, the different diseases, but one person may
have multiple, three or four of these disease. From the onset of their
first autoimmune disease within 20 years they may have three or four of
these autoimmune diseases. It's not at all uncommon.

So what are the disabling manifestations of this disease? Well, fatigue,
and fatigue is in your listing under Lupus, but it's not considered in
the other autoimmune diseases. Yet it's a very prominent feature of
multiple autoimmune diseases, and when the patient describes the fatigue
it is not \"I'm tired,\" like you and I might thing of being \"I'm
tired.\" If you think of when you are first coming down with the flu, a
bad flu, and how you feel at that time when you say \"Well, something's
wrong,\" that is how a person with autoimmune diseases feels a large
part of the time. So you can see how that might be disabling. It's an
overwhelming, unrelenting fatigue. Pain, usually muscle and joint,
crippling, neurological manifestations which are anywhere from a stroke,
MS \-- for instance, as many neurological manifestations, but it can
also be psychosis even can be a part of autoimmune diseases. So there
can be impaired overall functioning, not just with the system involved.
Muscular weakness, atrophy, impaired ambulatory ability, weight loss,
fever, anemia, all of those that I mentioned I could probably name 10 or
15 autoimmune diseases which would share those similar symptoms, many of
which are not even listed under immune.

I'm not going to say too much \-- I see the Lupus Foundation will be
talking about Lupus, so I'm going to skip that. They can address that
quite easily. I just want to point out that those symptoms are common to
multiple autoimmune diseases. But only in Lupus is the fatigue ability
considered as part of the criteria for disease evaluation. It doesn't
matter if you have Lupus or polymyositis, you can be as fatigued.

Many patients have more than one. We've talked about that, more than one
and even as many as four or five. Some of the little humor that patients
say, if you live long enough with one you get to collect them.

(Laughter.)

MS. LADD: New treatments for several autoimmune diseases that may impact
on a person's disability, probably the newest approach to treating a
rheumatoid arthritis, psoriasis, and MS \-- although MS is not quite a
TNF inhibitor \-- are these new TNF inhibitors. With these treatments
they may allow a person to return to work. They can even halt crippling
manifestations in rheumatoid arthritis. Crohn's it may make a very
significant difference, but it may allow them to return to part-time
work. They're not cures. So these treatments do not end the disability
or cause such improvement that the patient could return to gainful
employment; and I think that the skit kind of pointed that out a little
bit, too, that the waxing and waning is the major \-\--.

So I just would like to put out there should partial disability be
considered as an option, and from our standpoint we believe it would be
good for the patient and good for the government. Because many of these
people just don't have the endurance to work the 40-to-45 hours that our
society now requires of us, and when they try to their disease flares
up; and so then they're sick again, and then they have a real fear if
their own disability of trying to work because they're going to be
expected to work 40-to-45 hours, and it is \-- they know that that's
very risky business. That's all I have to say. Thank you.

(Applause.)

MS. MOORE: Would you like to take questions?

MS. LADD: Sure. If we can do that now. I actually have to catch a plane,
so I won't be able to stay through the whole panel. But I know everyone
else can cover all these, cover almost any question on autoimmune as
well as their singular disease.

MR. : Okay. She \-\--. Okay.

MS. MOORE: And if you have a question if you please state your name and
where you're from so we can get that documented.

MR. EIGEN: Barry Eigen, Social Security. First, thanks. That was very
helpful. I noticed something about our listings that's very unclear that
we need to fix. Can you say more? When I was reading the comments I
noticed the comment that said \-- we got several comment letters that
said we needed to list these various conditions within the immune
system. But as I mentioned in my little talk, they're all
cross-references to other body systems anyway, and so in a sense \--
well, not entirely. I mean, each listing has an extra paragraph, but in
a sense they're kind of redundant in that regard. So could you say more
about what it is you'd be looking for us to do in an immune system? Say
for example you have an autoimmune disorder that manifests itself on the
skin and it meets one of our generic skin listings which could be caused
by anything. What would we put in our immune disorder listing that would
be different from what we already have for a skin disorder, or a mental
disorder say?

MS. LADD: Well, probably the propensity for the diseases to overlap,
which you would not see under the skin manifestation. You would probably
be just looking \-- for instance, psoriatic arthritis \-- or psoriasis.
That's a skin disorder. It can be just a skin disorder. It can even be
severe enough to be disabling as a skin disorder. But a person with that
can develop another autoimmune disease called psoriatic arthritis which
then would push them over into the arthritis category and is just \-- it
just doesn't fit the matrix of what's really happening. So to answer
your question, you link all cancers together because in laymen's terms
and very simply put, all cancer is caused by the immune system allowing
a mutant cell to proliferate. All autoimmune diseases are caused by the
immune system attacking your own tissue, whether that's your joints,
your skin, your eyes, your hair. That's what's happening. That's the
common pathway of the disease; and what triggers that may differ,
because they can be triggered by infection, environmental, toxins, and
even stress \-- and the stress is an important consideration because
they now know that stress definitely can act as a trigger in somebody
who has an autoimmune disease. So you can see where this \"I'm trying to
work because I'm feeling better now. I want to work,\" and then the
stress of that along with the endurance factor then they're back where
they are, and often in a worse condition because maybe another major
system becomes involved because of that attempt to go to work.

MR. EIGEN: Thanks.

DR. LAURITZEN: Susan Lauritzen from the regional office. I'm wondering
if, Barry, your question isn't in under Lupus with where you have the B
criteria where there can be the two or more organ systems including, you
know, the fatigue. It sounds like then if we had that for everyone that
that would be the answer to this crossover kind of \--

MS. LADD: It would be such an improvement. Thank you for that.

DR. LAURITZEN: Okay. So using those medical equivalents for that
listing. I mean, if you can cross-reference, even if you didn't change
the listing now. If you could use \-- I'm in the child, a pediatrician,
so I'm working \-\-- with the childhood listings where we have the
functional equivalents choice where you can say you can refer, you know,
to a different listing a little more easily than the adult listings. But
it seems like that's what we need for these

\-\-- because you've got sort of what you're talking about under Lupus.

MS. LADD: Actually that came about \-\-- Lupus Foundation, and that was
work that the Lupus Foundation worked very hard on Social Security to
get that listing listed that way, but it applies. I think you're
absolutely right. It would apply to multiple autoimmune diseases and
would be very much \-\-- more matrix approach to it.

MS. : So we might have that built in already as an example that they can
expand on.

MS. : One more and then I think we have to more on. Back there.

MS. DOAK: I'm Bonnie Doak with the Immune Deficiency Foundation. I have
a question. Did you say that one of the criteria that's listed the
disability was fatigue?

MS. LADD: Yes, in Lupus. Only in Lupus, but that's what we're talking
about is \--

MR. EIGEN: \-\-- clarify that. It's in all the other listings, but
that's one of the things that's not clear.

MS. LADD: Okay. Well, it's not clear to the examiners, because we hear
that.

MR. EIGEN: No. It's not there. You're right. It's not there.

MS. LADD: Okay. Thank you very much.

MR. EIGEN: I'm sorry. I had to get technical there. We actually do list
fatigue in all the other listings, but I realize that \-- listening to
the talk and looking at the regs it's not clear at all, but it is in
there.

MS. MOORE: Okay. Our next speaker will be Sarah Patterson from National
Organization of Social Security Claimant Representatives.

**Presentation by Sarah Patterson**

MS. PATTERSON: Good morning. Is this on?

MS. MOORE: There's a little switch.

MS. PATTERSON: Oh, here? Again, my name is Sarah Patterson and I'm here
this morning representing the National Organization of Social Security
Claimant Representatives, which is a national organization encompassing
approximately 4,000 attorneys who specialize in Social Security
disability cases representing claimants. I've been doing this work for
about 20 years. I've done cases probably in a dozen different states. I
practiced here in San Francisco for 10 years. I'm now living in Portland
doing some cases up there, and I was also the 9^th^ Circuit
representative to the Board of Director at NOSSCR for two years. So my
expertise I must admit is a little bit more in the HIV-related part of
this section, but I certainly have done a fairly significant number of
these cases over the years, and this is my contact information should
anybody have any questions that come to mind later.

So I wanted to talk just a little bit about the structure of the law the
way it exists now. I'm also curious how many people in the audience are
from outside of Social Security. Could you just raise your hands? That
was my impression from yesterday.

So the current introduction to section 14.00, which is really quite a
useful thing from a legal point of view, and unfortunately not used very
much in our experience in the DDDs and in the determinations. But the
commonality, the themes of this are that the diseases evolve and persist
for many months or years. They result in significant loss to functional
abilities by which we mean ability for self-care, concentration,
persistence, pass, decompensation in work and work-like settings and
that sort of thing. They require long-term and repeated evaluation and
management, and as the previous speaker said a lot of times we see
records of people who've gone to multiple doctors over the years.
Frankly they're thought to be kind of chronic whiners, and finally they
get a diagnosis that brings it all together, and it's a very difficult
evaluation to get. There's also a commonality in that the treatment
itself can cause adverse effects. The disorders actually preclude
substantial gainful activity because of this loss of function, and
that's particular I think to this particular listing; and also there are
significant constitution symptoms and signs such as fatigue, malaise,
joint pain, stiffness, medication side effects, all of which can
practically in themselves be disabling.

So the role of the introduction to 14.00 is to provide detailed guidance
for all disability evaluators and adjudicators at every level, and again
as attorneys we find that these are just largely ignored by the DDSs and
sometimes by the ALJs, frequently by the medical experts at the
hearings, and certainly by the consultative examiners, but they do play
\-- this does play a very important role, even in cases where the
impairment does not meet the listings of impairment, which actually is
most of these cases. It would be NOSSCR's suggestion that Social
Security should include more of the language and the policy that's in
the Social Security rulings into that introductory material so it's more
accessible and more \-- I don't know what the word it is. It's not
credible, but \-- you know, it just needs to be in a place where
everybody can pull it out. So if I'm talking to a medical expert at a
hearing, you know, he might not even have heard of a Social Security
ruling. He has no idea what I'm waving in his face and asking questions
about. If it were in the introductory material it would be more clear.

So I think everybody will be talking about this today. The symptoms of
these are commonly fatigue, joint pain, swelling, weakness, anxiety,
depression, headaches, and all of these are subject to exacerbation by
stress and by working. Sometimes people will try to go back to work and
it will just push them over the edge. Some of them are very difficult to
diagnose. There's no single test for them. Sometimes very often it's a
disease that's diagnosed in the process of elimination, and it can take
many, many years. The symptoms mimic many other illnesses. The symptoms
are vague and transient, which makes it again very difficult to quantify
and pull into one diagnosis, and also unlike many other of the listings
there's a big degree of credibility in these cases. Credibility plays a
major part, and most of the symptoms that are being reported are
subjected.

So where to look for guidance? Actually Social Security has a pretty
fabulous set of guidances in the Social Security rulings. These are
policy statements by Social Security. I think represent great victories
for advocates of these different disease organizations who have actually
manage to work through the process, in some cases getting the CDC to get
onboard and provide a diagnosis, and then finally it works its way up
into Social Security policy. Barry was saying yesterday that it's much
easier to produce a Social Security ruling than it is to make a change
in the listings, and I think these particular ones really represent very
skilled advocacy organizations who have figured out the system and
worked their way up and gotten things actually written down in black and
white which are very, very helpful. What's not so helpful is that a lot
of people just ignore them as they weren't there.

But what is a Social Security ruling? It's an official policy statement.
It's binding on all components of Social Security. It's published in the
[Federal Register]{.underline} and available online at the quite
wonderful Social Security website, which I use a lot.

The common issues, there's kind of an eloquent structure I think to
these. They're set up so that they set up the medical science and
systems of each of the diseases that they address, they address the
transient nature of the symptoms, they say when the functional
impairments have to be considered, and they emphasize the importance of
treating source and third-party evidence. They talk about pain and
particularly they talk about credibility.

If the symptoms do not meet the listings, and again in these cases often
it's very, very difficult to meet the listing, and there may not even be
a listing. Then they have to work with the concept of equivalence, which
is a very mushy term, very difficult to explain to anyone. If I'm
working with a treating physician and I see that the person does not
exactly meet a listing but they have components of a couple different
listings getting a physician to say that, they almost think they're
being kind of corralled into saying something that maybe isn't quite
ethical, or they're just not sure what it is. It just is a concept that
really needs to be clarify. I've had medical experts at hearings just
kind of throw up their hands and say, \"Well, I don't really know what
that means.\" So if somehow that concept could be really clarified, you
know, that \-- I mean, what I say to people is that it means equals in
functional impairment this other listing. So if the person had, you
know, AIDS and they had these functional impairments that go with that
and you're talking about some other disease there and it would be equal
to this listing, you know, yada, yada, yada. It's just very, very
difficult to explain, and I don't ever see it applied by DDSs at the
lower level.

I was speaking the physician from Missouri DDS I think it was and, you
know, I think the attorney's point of view \-- and this is always. We
see the cases that get denied. You know, Social Security thinks, well,
we're granting half of these cases, and they're looking at those cases
that go through on which they did do a good job. Everyone has too much
work. Everyone is trying to do a good job. But, you know, 50 percent of
cases or more are decided wrongly and people are suffering for many
years, and it's really very difficult to watch from an advocacy point of
view.

In all of these disorders, too, there is a very important psychological
component. This again is difficult for claimants to swallow when they
come in to see me and I say, \"Well, we really need to get a
psychological evaluation.\" They hear that almost uniformly as, \"You
think this disease is all in my head.\" And in fact for good or for bad,
a lot of the cases can be won if decent psychological evaluations are
done, because it provides some very quantifiable evidence that
adjudicators are familiar with. It gives them language and structure for
whatever it is, depression or anxiety. That is something they can hang
their hat on, and a lot of times cases can be decided on the
psychological aspect alone, and then the other things just become
additional symptoms that add the various symptoms that the person is
suffering. It also can include side effects of medication, and the
mental impairment itself may be a manifestation itself of the underlying
illness.

Again the transient nature of the symptoms is the most difficult thing
to deal with in these, and it is just the nature of the illness. Things
wax and wane. Sometimes thing are stable for a period of time, a long
period of time. There's relapses, and these are just indeed
characteristics of the illnesses that we're talking about. I've had
actual

\-- I mean, I've represented quite a large number of these people, and
I've had several friends who've had chronic fatigue and different
autoimmune disorders, and it's just very fascinating to watch on a
personal level. They will be like, you know, flat on their back in bed
for four days and then up, you know, rollerblading. You say, well, how
about a little moderation on these days that you feel well?\" and my
friend would say, \"Well, you know the energy lasts for two or three
days. I know that's the only energy I'm going to have for the next three
weeks no matter what I do, if I sit and drink tea all day or if I go
rollerblading. So I'm going rollerblading.\" You know, and you see that
in the evidence. Perhaps somehow that works its way into the medical
evidence, which would be very unfortunately from my point of view as an
advocate, but there it is, and it's really not conflicting evidence if
somebody can pull \-- you know, just draw a bigger circle around this.

If there are conflicts in the evidence, Social Security's obligation is
to first clarify this with the treating sources. Again, for logistical
reasons this just never happens. I just rarely, rarely see treating
doctors contacted for either clarifying information or the original
examination. People are, as we were talking yesterday, just routinely
sent out for consultative exams to, you know, some physician who may
have no expertise at all in any of the areas that relate to these
autoimmune disorders. I know because I hear from DDSs, and people were
saying yesterday that people try four and five times to get in touch
with the treating physicians. They don't get responses. It's a problem.
It needs to be solved. I solve it for my cases because that's my job,
because I don't get paid unless I win the case and I guess that makes a
big difference. It might take me 10 times contacting a doctor, you know,
just politely following up and calling the office and whatever, but I
get that information. It's obtainable information, and it wins the
cases.

From a point of view of a taxpayer I get concerned often. Besides the
human suffering that these long, long cases represent, I think it's
seven years your commissioner says, isn't that right? From initial
through Federal Court? I think it's a seven-year time period of which
the task time is some frightening low number like 26 days. You know,
that's a lot of government manpower and womanpower that is wasted
because somebody is not getting the information that was available at
the initial application level, and I think that's just a tragedy. You
know, I've been working in the system for a long time. I know it is
just, you know, there's just roadblocks everywhere to making that
happen, but that's what needs to happen.

Adjudicators, once the medically determinable impairment has been
established \-- and that's one of the real values I think of these new
rulings, is they kind of elevates these diseases to medically
determinable impairments, where before you would never get past step two
because you have this constellation of gate symptoms not related to each
other from 10 different doctors. Now we have these rulings which define
these diseases as medically determinable impairments, and this is a huge
breakthrough in the law. That means that the adjudicator now has to
evaluate the intensity of the persistence, the limiting effects of
symptoms to determine the limitations on the ability to do basic work
activities. Again, the importance of the treating source opinions cannot
be overemphasized. If we can get this they're entitled to deference.
Sometimes if they are completely supported by the medical record they
are entitled to controlling weight. Again, if there's conflicts in the
records \-- and sometimes these conflicts are created by Social Security
because they send people out to CEs to doctors who frankly have no
expertise in the area. They come up with \-- you know, I don't know
what. They have no orthopedic impairs. You sent them to an orthopedist
and orthopedic impairments aren't even part of what they're alleging,
and so there's some kind of weird conflict that never would be set up if
somehow the accurate information could be gotten from the treating
source in the first place. Obviously that detailed medical record, the
longitudinal record, needs to be obtained. So like usually files this
thick for 10 years of all kinds of trips to doctors and faulty
diagnoses.

Information from third parties is extremely useful. I really develop
this a lot. I try to get 10 or 20 letters from people from, you know,
ideally somebody with a few initials after their names. A nice pastor if
there is one, friends who might have known this person for 20 years who
say, you know, this world used to be a world traveler. She was a
photographer. She was a writer. She held down a very demanding full-time
job. She hiked, she went camping, and now she can't even do her own
gardening. You know, she can't even go to the grocery store. You know,
that kind of information, what I call just little vignettes. I say to
people I don't want you to make a medical diagnosis of this person. I
want you to just tell me snapshots of what you've seen happen to this
person over the years.

I had an HIV case in San Francisco back in the early '90s when this
really \-- you know, the epidemic was really heating up now, and the
listings were just coming in and nobody really understood them. A
neighbor of this man wrote a letter. He happened to be a nurse, which
was a nice touch, but he just wrote it as a neighbor, and he said, \"You
know, I used to see Matthew going out, taking care of his own
activities, going to the grocery store. Now I see him going to the
grocery store and he comes homes and he walks up the steps and he sits
down. Goes up two steps, sits down and rests, picks up his bag, goes up
two more steps and sits down rests.\"

You know, that's the kind of thing that is just heartbreaking detail
that you can't deny, and it's the kind of thing that advocates \-- you
know, it's hard to get it from people and it's very, very important. So
also having people keep diaries I think is very, very useful. I don't
get that over a very long period of time because frankly I think people
find it clinically depressing to do. I ask people to do it for week and
just, you know, see sort of a pattern of what the energy flow is and how
much people have to sleep, and when they have pain and that sort of
thing. All these things, especially the third-party information, really
buttresses the credibility of the claimant.

Pain, the effects of chronic pain and the use of pain medications have
to be carefully considered. We need to evaluate the impact of pain and
its treatment. The treatment of the pain sometimes can be disabling in
some ways and effects of the pain medications on mental functioning.
Sometimes is a big slowdown in mental functioning, or actually some
medications can cause depression or anxiety, and all of the pain \-- you
know, people who are in chronic pain, managing chronic pain is a
full-time job. I think it's something that unless you really are around
somebody or you've experienced it yourself you have no idea how it
permeates every minute of 24 hours of your day. You can't do anything
else besides worry about how you're going to manage the next waive of
pain which you know is going to hit in two hours, and you have until
1:00 in the afternoon because you know you're going to hit a wall then
and just go down. So everything has to be \-- I mean, everything gets
managed around that, and I think that's the kind of thing that really
just never comes across in medical records, but it can come across from
third-party or diary information.

Return to work issues, I'm assuming somebody else is going to be
covering those, but I would just say from the emotional point of view I
find it a terrifying thing, people going back to work. I with it worked
better. I think a lot of people would like to return to work. Many
people would like to return to part-time work of some kind. But what I
have seen in my experience is people perhaps going back to work,
becoming disabled from the same condition, thinking they are just going
to snap their fingers and going back on disability. It may be three
months until that works it's way through the system and they might have
lost their housing by then, and it is just not something that most
people are willing to risk.

I know in Portland there is a fabulous advocacy group that's overwhelmed
with cases that has somebody that holds people's hands and walks them
through that process and has access to the Social Security office. You
know, those are great programs. I don't know how available they are in
rural areas and whether that's a pilot program. I think it's improving a
lot, but it is a very scary thing for people to consider, and it would
be nice if some kind of part-time situations could be developed.

I was talking to Sue yesterday about a couple of clients that I had
spoken to. This is kind of the evolution of our culture. These people
had been selling things on Ebay. And, you know, I don't know how much
money they were making; probably not enough to live on, But, you know,
it's a very variable sort of schedule. They can do it whenever they
want, and if somehow \-- I can't imagine how Social Security could work
this into their regulations, but if that kind of thing could be
accommodated I think there is some creativity that could be put into
play to accommodate the evolving job market. I was told the other day
that Jet Blue Airlines contracts with housewives in their kitchens with
computer and does all of the stuff that's on their website. It just
contracts it out in what were describing as the new age piece work. So
people aren't making quilts anymore. They aren't making widgets. They're
punching buttons on computers at variable schedules when they feel like
it. So something to consider, somehow working that in.

So bottom line recommendations from NOSSCR are ask the right questions.
If the right questions were asked from the beginning three-quarters of
these cases would go away. I mean, the caseload would disappear. There
are fabulous questionnaires that have been developed by the disease
organizations. I know with the HIV Medical Association yesterday, they
have a great questionnaire, and the questionnaires that are used now by
Social Security as somebody said yesterday were kind of developed for
the machine age. You know, they're about people who work in factories
and lift things, and reaching and crawling through small spaces. They
don't have anything to do with whether you can sit in your kitchen and
process cases for Jet Blue or, you know, be a receptionist or do some of
the other low-level work, lower exertional-level work that exists.

As we talk about changing the regulations, again as the HIV regulations
yesterday, our general position is the regulations that are there are
not so bad. I think probably more immune disorder things need to be
added into them, but using the regulations and the Social Security
rulings that we have would be stunning. They just simply aren't apply. I
had an attorney \-- I did kind of an informal survey of about maybe 50
or 60 lawyers in our organization. Most of them didn't have any
suggestions to make on changes in the listings, but a woman in San Jose
said the kind of fatigue, Social Security ruling, they just pretend it
doesn't exists. They just pretend it doesn't exist, so training, and
again if the information that is in those Social Security rulings could
be incorporated into the introductory material at least or ideally into
the listings themselves we can all go out of business. So I'd like to
see a system simply enough that I would be put out of business. People
should not need lawyers to go through this system. Any questions?

(Applause.)

MS. : Did you have a question?

MR. SKLAR: Hi. I'm Glenn Sklar from Social Security in Baltimore. My
question is is the frustration you experience as a practitioner mainly
from difficulty in getting an actual diagnosis in these types of cases,
chasing a diagnosis, or is it the inability to properly apply the rules
once you've brought a diagnosis to Social Security?

MS. PATTERSON: I would say the latter, because usually by the time I get
a case the person has been denied once or twice. I would say most people
don't walk in the door with a bunch \-- you know, this weird
constellation of symptoms without something to hang it on. They don't
start seeing an attorney until they have a diagnosis of some kind. I
mean, I'm not a doctor. I'm not going to take a person who has got a lot
of aches and pains and fatigue and headaches and strange stuff and try
to put it together into a diagnosis. That's not my job. So I would say
it's getting Social Security to apply the rules.

MS. SCHOENBERG: I'm Nancy Schoenberg. I'm with Social Security. What
would you think if we made a presumption in favor of the claimant in
situations where SSA can document that an attempt to clarify any
conflicts was made and the treating physician didn't respond? Do you
think that would help the situation, particularly with unrepresented
claimants?

MS. PATTERSON: I don't know how that would help. How would it help? I
mean, it would show you did your job, but it doesn't really help the
person.

MS. SCHOENBERG: In the sense that it would eliminate the conflict. It
would eliminate, it would give a presumption in favor of the treating
physician by eliminating the conflict. If the treating physician didn't
respond then we would overlook the conflict and just accept the treating
physician as the presumptive weight.

MS. PATTERSON: I'm so sorry. I'm not understanding the situation.

MS. : Do you understand what she's saying?

MS. LADD: I think what she's saying is that if the treating physician
doesn't respond after they've already presented their views, but your
asking for more information or whatever, just you can let that go and
\--

MS. : And give it the weight.

MS. LADD: Give the weight to the \-\-- report.

MS. : Right. \-\--.

MS. VOGEL: Michelle Vogel from the Immune Deficiency Foundation. What
I'm finding a lot with our patients when they get to the point where
they are denied and the get the list of advocates, the attorneys to help
them, that the attorneys don't know anything about the primary immune
deficiency diseases and many of them are telling them don't go further
with these cases, that you have no chance. In that instance, I mean, how
would you suggest working with educating the attorney base on these
cases?

MS. PATTERSON: You know, I wouldn't waste my time with an attorney that
said something like that. I would get on the internet. I would do a
search for Lupus and Social Security and San Francisco and see what came
up, because you'll find people who hold themselves out as having an
expertise in this. I know at least two attorneys, one is Phoenix and one
in Chicago, who do nothing but autoimmune cases, and they go all over
the country and do them. There certainly is particular expertise. It'
something that's \-- you know, maybe you want to be educating lawyers.
Maybe you want to be do something with the Bar Association. You know,
like something more broad to educate people, but there are attorneys who
do this regularly. You know, I know how to win an HIV case in my sleep,
and I have seen a lot of attorneys completely mangle these cases because
they have no idea how to do them. So it's just what you know how to do.

MS. VOGEL: And I agree with you. I mean, we have a program where we have
attorneys who work with our patients, which is great, and we have a lot
of our patients who go out and do the search themselves when they get
turned down by the attorneys. They said, \"Well, we're going to do it
ourselves,\" and they go through the process. But it's disturbing when
they get a list of advocates and all of a sudden the advocates say, \"We
don't know anything about this. We're not going to help you.\"

MS. PATTERSON: Well, you know, you don't want brain surgeons doing
pediatric work. Everybody's got their area of expertise.

MS. VOGEL: Yeah.

MS. PATTERSON: Is there one more question back there?

DR. MINNIGERODE: Lana Minnigerode from the Kansas City DDS. I just want
to respond to the question about how much effort do you put into
contacting treating sources when they don't respond. I think we can give
some weight to a physician that says they're disabled when he doesn't
respond, because a lot of times they are thinking that, \"Darn, I
already wrote that in the medical recorders. Why is this guy bugging me
all the time to contact me?\" Oftentimes I as a medical consultant will
leave a message that says, \"You wrote that in there and I would really
like to just accept it, but I can't because I don't have enough to
support. This is the deal. Please call me back.\" That's more efficient.
I don't think that we train our medical consultants in Social Security
disability well enough to leave the right messages. That's one problem.
The other one is that if you've got somebody that a light or a sedentary
allows and they've said they're completely and totally disabled that
doesn't mean you still can't give them a light or a sedentary. That just
means that you're not going to give them a less than sedentary \-\--
meet the listing.

MS. PATTERSON: Yes. I would agree, and I think yesterday someone made
the suggestion of why couldn't we use email to contact these doctors,
and also because I knew you couldn't fully put out in your \-- I'm sure
you leave good messages. Maybe it's easier to construct a message in
email for some people. I know sometimes people leave sort of scattered
voice mails. The other thing is to try to contact. Sometimes people have
social workers in their office, case managers, physician assistants,
nurse practitioners, even nurses. Just somebody else that would be able
to. I mean, you can't ever get a doctor on the telephone I don't think.
I never get a doctor on the telephone to call me back, but I can get
somebody in the office to do that. So I use letters and I use staff
support people in the office to get that information.

The other thing, I think there's a difficult situation with physicians
because they think they can write a one-paragraph letter that says,
\"I've been treating this person for five years. The diagnosis is X. In
my professional opinion this person is disabled.\" They think they have
hung the moon for this person, and Social Security could care less about
this letter now. It's just got nothing in it that's useful, and the
doctor thinks the job is done and they should never be contacted again.
So this again is where, you know, if preliminary forms could be
developed for each of these diseases and they could be sent to the
doctors from the get-go we wouldn't have to be contacting them over and
over and over again. Because, I mean, I don't blame them. They get
really annoyed. I mean, sometimes by the time I'm contacting them Social
Security has contacted them 15 times and they're already really annoyed.
So it's difficult, but \-- you know, it's my job.

MR. LEACH: Hi. I'm Bill Leach with the Access Program. I work for
program that represents claims with \-\-- disorders, and I've done
probably 200 or 300 hearings all over the country in that capacity. I
just wanted to followup more with comment more so than a question about
your point about getting the judges to use the rulings and the
introduction sections, and I just want emphasize that there is a
training issue there because I work with the same problem all the time.
I have to get the judge and the medical expert to look at the explicit
listing itself. Anything that I suggest to them, it's like that's
aspirational. It's not really \-\--.

MS. : Aspirational. Great \-\--.

MR. LEACH: Well, that' \-\-- attitude that I get, and I think there
needs to be more emphasis placed on the fact that these are mandatory
rules, that these are rules that are to applied in evaluating the
disability for any adjudicator, whether it's an ALJ or DDS person.

MS. : Exactly.

MR. LEACH: I think it would simplify all of our lives considerably if
they would just follow what's already in the rules. But to that end, I
think that we can do a lot towards making what's in the rules a lot more
explicit. I like your recommendation of taking what's in the SSRs and
explicitly putting it into introductory sections for these conditions as
well, because we do have guidelines that will work if we can get people
to use them.

MS. PATTERSON: Well, that's an evolutionary process, and I'm sure that
disease organizations will continue to advocate for that; but that's a
great word, inspirational.

MR. HATFIELD: I have two comments, and my name is Dave Hatfield from the
Office of Hearings and Appeals, and they're sort of off the top of my
head. So that's maybe a dangerous thing, but I'm going to say them
anyhow.

The first is about the rulings, and I thought about this for awhile.
When I get a new CFR I always annotate the regulations with the rulings
that are associated with reg, and I guess this is a question of area and
perhaps some of the others. Is there any prohibition of possibly
considering putting cross-references of Social Security rulings in the
regulations?

MS. : Wouldn't that be nice. Wouldn't that be nice.

MR. HATFIELD: And I'm not talking just for the listings, but I'm talking
for SGA \-\--, et cetera, where the rulings really do clarify or add,
embellish the existing regulation. It could probably be done I would
think by a final rule. It wouldn't have to be NPRM, and we would have
finally some indexing of the regulations vice-à-vis the rules. I just
throw that out.

MS. PATTERSON: Fabulous idea. Be nice for a lot of advocates, too,
because sometimes, you know, a new SSR will come out and I might not \--
it might not come across my screen. I might not see it and even be aware
of it.

MR. HATFIELD; Right. And when I train new judges and decision writers,
when Judge Heitz and I do that one of the things we always tell them is
to annotate the rulings in the regulations. We have, you know, pencil
these things in. The second point, at least a suggestion, is in the OHA
arena. You talk about medical experts not having at perhaps expertise in
these. Particularly these body systems that are at the OHA level are
sometimes not seen that much. In Pittsburgh where I'm from we have about
23 medical experts on call, but most of these are practicing doctors at
the University of Pittsburgh Medical School. Well, and what we do is we
get them by telephone because \-- and we have never had a challenge by
an advocate that a telephone conference in the hearing is any due
process concern. Personally I don't think there is. The expert is there
just to look at the cold record and respond.

MS. : I would be so grateful for an appropriate expert instead of \--

MR. HATFIELD: Well, my suggestion is possibly \-- and we've done this
somewhat regionally, but what about the idea of nationally all the
medical experts that are in the hearing offices nationally, that they
would be on call or that every ALJ in the country would have access or
be able to have experts at our beck and call. No pun intended. That we
could have them as medical experts. So I just throw that also.

MS. PATTERSON: Who was it that was talking yesterday about the idea of
having a cadre of HIV experts who would review all those cases at the
point where the electronic file \--

MR. GERRY: I think it was me.

MS. PATTERSON: Was it you? Can you speak a little bit to that point?

MR. GERRY: Well, Dave knows it. The concept of creating medical expert
units that would be available throughout the process. So it would
include the hearings as well at the DDS level. It is something that was
laid out and approached \-\-- the commissioner talked about it, has been
talking about for several months. It was outlined this fall, and I think
yesterday, and for that matter today, the logic of being able to get \--
especially we have a new electronic disability folder system which would
allows cases to be moved fairly quickly around the country to experts
who could review them. It would give us a chance not to create some
static group of people who would leave their real work and become
experts for 25 years, but to do more what Dave is talking about, which
is to get us to people who are actively treating but could take the time
to look at on a computer the records and provide perhaps with video
teleconferencing or through some other mechanism information in the
hearing or to apply

\-- make decisions about the cases.

So it is something that we're very actively looking at, and I think the
interesting would be here would be \-- and the most difficult question
really is how you staff and organize the unit, not the logic of whether
it's a good idea, at least not to us. I think the idea of using existing
medical consultants, not only medical experts with OHA or medical
consultants with the DDSs, as part of that network makes sense There's
no reason because again it's crucial that people be physically located
at a particular place. We could take advantage particularly of the
people who we've been using successfully and have that expertise that we
already have, but it does \-- would require us, and I think it's been
clear from \-- and I wanted to ask this question later but, also to go
beyond the traditional sources. That, you know, the idea of medical
experts has been a relatively narrow concept, and one of the things
we've been increasingly aware of is that there are other people,
healthcare professionals and others, who may have equally pertinent
information to provide. They could also of course be contacted and
networked to a process like this. So how we do that, that might require
us to have as part of these expert units people who are good at finding
those people and contacting those people and distilling what they have
to say as well, so it's not just a static expertise issue.

MS. PATTERSON: They have the expertise and they have the time to be
witnesses, and I know \-- I mean, nurse practitioners where I live and
when I lived here, my daughter-in-law is a nurse practitioner, they
function as physicians. I mean, they treat people. Doctors are barely
looking at them when they have some certain number of years of
experience. I mean, they function \-- unless they reach a level that
they don't know about. They function like doctors and, you know, their
evidence is really sometimes ignored. It still difficult to get in.

I would say, too, you know, just as an idea to respond to the judge back
there about annotating a paper copy of the listings that perhaps in this
century we could get that online, and I would guess that Peter Young who
maintains the ALJ website could easily do something like that. I mean,
it wouldn't have to come from Social Security. Anybody could, you know,
interface those rulings with the thing just on the computer so you could
pull it up on a screen at the hearing, and it seems like it would pretty
simple to do.

I think telephonically, you know, there might be a little bit of a
disadvantage in a physician not being able to actually look at the
person. I mean, if I have an HIV client with wasting syndrome, you know,
that's a pretty significant thing to eyeball in a hearing, that you
might lose a little bit telephonically. But I think getting the
expertise of somebody who really knows the area that they're testifying
about would really outweigh that disadvantage.

MS. VOGEL; I want to add a comment. Mr. Gerry, what you were saying
about the \-- having medical experts, and I know it's rare diseases with
primary immune deficiencies. We have like consulting immunologists
because for us we have that problem that a lot of patients aren't
diagnosed and are diagnosed very late because they can't get to the
right doctor. So we have through our organization a consulting
immunology program set up so we can get those immunologists out to those
patients or to those doctors. So we would love to work with you on that.

MS. PATTERSON: And if there aren't any other questions I'd just like
thank Social Security again just for the deep listening that's going on
at this conference and the one in Philadelphia. It's just enormously
refreshing to see people willing to take in information before they even
put out the first set of regulations for comments. It just creates a
much more of a synergistic situation than a combative one, which is a
pleasure. So thanks very much.

MS. MOORE: Thank you, Sarah.

(Applause.)

MS. MOORE: Okay. We're going to take a five-minute stretch break, five
minutes. Okay? And before you go I need to know, is the room too warm?
Raise your hands. Okay. All right. I was sweating, and I usually don't.
Okay. Five minute stretch.

(Whereupon, a short break was taken.)

MS. MOORE: Okay. We moved all of the panel members to the front so that
they could jump in and get in the hot seat if they wanted to, so feel
free if you want to.

Our next speaker is Leslie Holsinger, Ph.D. from National Psoriasis
Foundation.

**Presentation by Leslie Holsinger, Ph.D.**

DR. HOLSINGER: Hi. Thank you very much. My name is Leslie Holsinger, and
I'm a volunteer. I'm the Chairman of the Board of Trustees of the
National Psoriasis Foundation. I want thank the Social Security
Administration for convening this meeting, and I'm happy to be here to
discuss with you today one condition in the disability listings, and
that's psoriatic arthritis. So I'm going to start by describing the
National Psoriasis Foundation to you to give you an introduction, and
then I'll describe some psoriatic arthritis, and then at the end I'd
like to suggest some possible ways to improve the immune system
listings. On a personal note, I do suffer from psoriasis and psoriatic
arthritis myself, so I do have personal experience with the debilitating
affects of this disease.

So let me share with you a little bit of a background of the National
Psoriasis Foundation. It was founded by patients and physicians in 1968,
and it's a patient-lead and patient-focused group. It's advised by a
medical board that's composed of both dermatologists and
rheumatologists. \-\-- supported by the public. We are largely supported
by public donations and also receive some contributions from
corporations, and we represent a community of more than five million
people that have psoriasis and/or psoriatic arthritis. So our overall
mission really includes three main focus areas, and our mission is to
improve the quality of life with people who have psoriasis and/or
psoriatic arthritis, and through education and advocacy we promote
awareness and understanding of the disease and insure access to
treatment for patients. Finally, we also have an effort to support
research that will lead to effective management and hopefully ultimately
a cure for the disease.

So let me introduce you to psoriatic arthritis a little bit for those of
you that may not be aware of it. It's a chronic, progressive,
inflammatory arthritis. It is often associated with psoriasis, but not
always. It affects roughly one million US adults, and as I think you'll
see from some of my later slides it seriously impacts daily life. It's
often either misdiagnosed, undiagnosed, or diagnosed years after it's
initial onset.

So a little bit more about the effects of psoriatic arthritis. It can
infect many different parts of the body, and these include but are not
limited to the hands, wrists, knees, ankles, toes, the spine and
tendons; and it can cause a variety of disabling symptoms, and these
include pain and swelling, fatigue, joint destruction, many of the
things that previous speakers have spoken about already. I mean, it's a
disease that affects patients for many years; and although it usually
develops between the ages of 30 and 50, it can happen any time and can
happen in children.

This is just one photograph to illustrate for you an example of how
serious psoriatic arthritis can be. This is an example of the
debilitating joint changes, in this case seen in a hand, that can occur
in psoriatic arthritis. So it profoundly impacts a patient's quality of
life. So for example in a national benchmark survey that the National
Psoriasis Foundation recently conducted 84 percent of patients with
psoriatic arthritis said it had a moderate to large impact on their
daily lives, and this would involve both work and simply conducting
their life; 75 percent said they lose sleep or sleep poorly because of
this disease; and 69 percent can't do what they want to do or are unable
to these things at work or at school. Let me add another note about how
it affects how people are able to work. In a recent survey, in the same
recent survey of 400 patients, among people not working nine percent of
those were not working because of psoriatic arthritis and a full 21
percent were not working at least in part because of psoriatic
arthritis. So the conclusion that you can come away with from this is
that the disease can have a profound ability on someone's ability to
work.

So as we discuss how to evaluate psoriatic arthritis in the context here
today it's important to keep in mind how people treat the disease. So
many drugs that I won't go into today are used, but the side effects of
many of these drugs can be very, very serious, and there is in fact only
one new treatment that's FDA approved for psoriatic arthritis. There are
new drugs in clinical trials, but I think it's very important to
emphasis that these drugs are treatments. They're not cures, and the
treatment's affect and duration varies, and I think this sixth bullet
point is perhaps the one I'd like to emphasize the one. Peoples response
to treatment is very variable. Some people respond only partially where
others may respond very well, and some people respond to one treatment
for a period of time and then lose their response to that treatment.

So I'll offer a few preliminary suggestions about ways to improve the
listings. So some general considerations that we would like you to
consider are to continue to evaluate each case individually and to give
serious consideration to the side effects of treatments. Consider how
changes affect both recipients and applicants; and, like a previous
speaker indicated, we would agree that partial disability may be a very
important option to consider.

SO here are a few more specific ideas. Consider adding pain and
difficulty with sleep and the associated depression that comes with the
disease to the list of symptoms and signs. These are major and serious
symptoms and signs, and consider adding more specificity to the listings
with regard to hand, foot, and nail involvement in psoriatic arthritis.
Enhance the importance of fatigue. I think again, as previously stated
by an earlier speaker, right now this essentially a footnote, and this
is one of the most debilitating of psoriatic arthritis. We would also
like you to make sure that the immune system listings complement the
other rules that relate to skin and musculoskeletal system diseases and
disorders.

So in conclusion, we know that the Social Security disability system is
facing some serious financial and other challenges, but also that it
helps millions of Americans and has for many years. We feel we're all in
this effort together, and we look forward to working with you all to
make life better for the people that we serve.

On a personal note, because I always like to add a personal note, I was
diagnosed with psoriatic arthritis when I was 29, and even though I have
treated the disease almost constantly for 10 years my disease has always
progressively worsened in its severity. Treatment has been either
moderately effective or effective for only periods of time, and the side
effects of the medications for me have made them very difficult to use
effectively and effectively long term. The fatigue and pain associated
with the disease not only makes working difficult, but simply caring for
my family and myself very difficult, and I worry that the day may very
well come when I run out of treatment options. So I thank you very much
for your attention, support and consideration to these issues.

(Applause.)

MS. MOORE: Are there any questions? Questions? Okay. Our next speaker
will be Michelle Vogel, Immune Deficiency Foundation.

**Presentation by Michelle Vogel**

MS. VOGEL: Hi. Thank you for having me again at your conference, and I
really enjoyed being at Philadelphia and here in San Francisco. And I
will begin by talking a little bit this time about IDF, which I didn't
at Philadelphia, but I wanted to tell you that IDF's mission is to
improve the diagnosis and treatment of individuals affected by primary
immune deficiency diseases through research, education, and advocacy.

\$2-million were invested since 2000 and 40-plus fellowship and research
grant applications annually. We have a 20-member medical advisory
committee and clinical trial management and research programs. We help
30,000-plus patients nationwide through internet, patient meetings,
national conferences. We provide patient publications, and we have over
40,000 physicians and health professionals internationally, continuing
medical education, consulting immunologists programs, visiting professor
program, medical publications, and professional meetings.

Through advocacy we finally received our first NIH research funded
consortium, \$12.8-million this year, and we get IGIV through
compassionate care programs. We provide 10,000 in grams each year to our
patients for free, and we work collaboratively with FDA and CDC on
national health issues. Our long-term goals are to improve access to the
state-of-the-art medical care, enhance early diagnosis, make life
meaningfully better, expand scientific and medical research, and
increase the strength and research and strengthen the reach of IDF.

To go over primary immune deficiency diseases \-- and when I was in
Philadelphia I asked how many people knew about primary immune
deficiency diseases. Not many people did, and I just want to look \--
except for the people who were at Philadelphia, how many people here
have ever heard of a primary immune deficiency disease? Oh, okay. Great.
Well, the World Health Organization recognizes over 100 primary immune
deficiency diseases affecting approximately 50,000 in the United States.
They are the result of a genetic defect that involves the immune system
and its responses, and presently the exact genetic defect for each of
the diseases is only known for a minority of the conditions. Primary
immune deficiency disease are characterized by an increased
susceptibility to recurrent, poorly responsive, severe and unusual
infections. Affected individuals have abnormalities of cells or proteins
of the immune system. The cells include B-cells, cells producing
antibodies, T-cells, cells that coordinate the immune system's
responses, and leukocytes and cells that fight infections. Some of the
proteins are immunoglobulins, also known as gamma globulins, complement
proteins, and blocking agents such as C1 esterase inhibitor.

This is a list of the more common primary immune deficiency diseases,
and I know that in our comments we requested that you add the list of
these diseases as examples so that your adjudicators can see these
diseases. Because when you're defining cell-medicated diseases it's hard
to determine what they actually are, and when you see a name it's a
little easier to determine. Most of these names you've never heard of,
and it's interesting to know that most people when you hear primary
immune deficiency disease they've never heard of it; but when you say
Bubble Boy Syndrome they're like, \"Yes. The John Travolta movie,\"
which is one of the more rare diseases.

This is just a graph showing the difference in diagnosis of ages, and
you can see that, I mean, yes, 36 percent of our population is diagnosed
less than six years old; but, I mean, we have a huge percentage, 22
percent, is diagnosed over 30 years old. The time of diagnosis after
symptoms, the average is over nine years, and part of that problem is
that physicians aren't trained in these diseases, and the diseases
aren't taught in medical schools. We're working on changing that, and
unless you're in an area where there are immunologists who know about
these diseases and you have these chronic infections that they test you
immunoglobulins they don't. You go on suffering for many, many years
until you finally find that right doctor that finds that diagnosis, and
if you're in a rural area it's very tough. The common permanent
impairments due to the delay in diagnosis is digestive function,
mobility, lung function, vision, hearing, and neurological.

The biggest treatment for primary immune deficiency diseases is IGIV.
It's immune globulin intravenous therapy. It's made by human plasma
therapy, and it is an intravenous process. Most patients receive these
infusions once every three to five weeks. The infusions can last
anywhere from five to seven hours, sometimes longer. Usually when you're
younger it lasts a longer. A lot of times when you're younger you end up
in the hospital receiving the infusions because kids can't tell you
what's going wrong, and so doctors need to monitor them closely. The one
thing with these drugs, there are eight brands of IGIV on the market
right now, and many people look at them as generic to each other and
they're not. Each brand works different, and what the patients have to
go through is a trial and error period unfortunately, and go through one
brand after the other until they find the right one that has the least
side effects. I say the least side effects because there is no right
drug that has no side effects for a patient, and many of the patients
have to take a lot of drugs with that IGIV to make it tolerable. Most
patients end up getting their infusions during the work day, from nine
to five, and this is important because one of the issues is can patients
feel IGIV wearing off, and the answer is yes.

What happens is their immune system, the immunoglobulins start getting
lower and they are more susceptible to infections, and that's when
they're getting sicker, and in children that's when you end up seeing
them having more higher absenteeism. In the workplace they're out. If
there's viruses their more exposed to it and they're going to catch it.
So it's a serious situation.

Symptoms following infusions, these are the more common: fever, nausea,
vomiting, cough, sore throat, shortness of breath, headaches, faintness,
high blood pressure, joint swelling, chest pain, back pain, fatigue, and
anaphylaxis. That's why it has to be monitored closely. The infusions
are also done in doctors' offices and in the home when it's safe, and in
the new Medicare bill it allow for home infusion now. It allows for the
drug coverage. It doesn't allow for the administration of it, which is a
problem. The top reasons why patients no longer use IGIV is because of
insurance problems or that they can't afford it. It's very, very
expensive.

Common acute conditions patients experience, and this is one of the
things that you're going to see. These are the types of infections that
you have in your listings. Pneumonia, bronchitis, diarrhea, eye
infections, urine infections, candida, malabsorption, sepsis, and the
one important thing you have to understand is that these \-- every
infection is to be considered serious in this population.

Employment status of patients, we estimate about 16 percent of our
patients are disabled, and about 68 percent of their activities are
limited by the primary immune deficiency disease.

This is a breakdown of the current health insurance sources, and you can
see of the federal right now 15 percent are Medicare and 11 percent is
on Medicaid. But you can see also that most of the people are relying on
employer coverage, almost 70 percent; 64 percent of primary immune
deficient patients have health insurance problems such as denial of
coverage, exceeding lifetime caps, prior authorization causing treatment
delays, IGIV not covered, states prefer drug lists or formularies, and
policy cancellations.

I wanted to go over two stories with you. When I was in Philadelphia I
talked about a woman who was in the workplace who couldn't continue
working, and today I wanted to concentrate on two children this time.
This story about Cody. Cody is now eight years old, but when he was born
he was born sick, like most of our children. By two years old he had
chronic ear infections, and he finally was diagnosed as having an IGG
deficiency. At age four years old he developed a rare bone infection
which finally lead to a correct diagnosis of hypogamma-globulinaemia and
Di George Syndrome, which Di George Syndrome is a very rare primary
immune deficiency disease. He was spending an average of three to four
times a week in the doctor's office, and he was put on a regimen of IGIV
infusions once every three weeks and these were done in the hospital.
That lasted eight to 10 hours.

He developed seizures, which is part of Di George Syndrome, and his
mother applied for SSI benefits when Cody was four years old. He was
denied and she didn't realize that she could appeal, which happens
often. Within a year of the denial she reapplied and received another
denial within 10 months, but this time she appealed.

During the appeal process Cody began to regress cognitively and became
developmentally delayed, and the state disability recommended that Cody
be seen by one of their doctors. The doctor didn't know anything about
primary immune deficiency diseases and ordered blood tests to see Cody's
gamma globulin levels. Well, if you know if anything about primary
immune deficiency diseases if you're receiving IGIV therapy your gamma
globulin levels if you're getting the right therapy are going to be at
the right level. So his level was normal, and so the doctor recommended
that he be denied SSI, and that doctor recommended the denial in June,
2003.

At that point during that of time his parents, Cody's parents, also took
him to be assessed because he was having developmental problems, and in
May, 2002, his IQ was 98. By August, 2003, his IQ had dropped to 73.

Last Tuesday a hearing was held with an administrative judge by video
teleconferencing, and it lasted 10 minutes and the judge said that this
was one of the compelling cases he had seen and ruled in favor of Cody
receiving SSI benefits. That was four years after his mother first
applied for benefits for her son, so \-- and now Cody's mother has been
told that she could expect an award in about six to eight months; and
I've heard that the decision wasn't primarily based on his primary
immune deficiency disease, but based on his IQ level.

So the significant factors in Cody's experience is that his mother is
the full-time primary caregiver for Cody, the length of the process to
obtain the disability benefits was over four years, the lack of the
familiarity with a medical expertise on primary immune deficiency
diseases throughout the disability process, and the assistance Cody will
need long term.

The next story is a story about Jonathan, and Jonathan was born sick and
was diagnosed at two years old with common variable immune deficiency;
and he was started on IGIV therapy once every four weeks, which was
about a seven-hour infusion. At age 11 he was diagnosed correctly with
hyper IGE. His mother worked as a nurse and continued to change jobs
throughout Jonathan's illness because the healthcare costs kept on
reaching their insurance caps. So eventually she took a job in teaching
because of the flexibility in here job so she could be at home when
Jonathan was sick and it also had better health insurance, but it was a
50-percent pay reduction. Luckily there was a lot of family support to
be there to help out.

But the case is interesting because when Jonathan was 17 his mom
decided, you know, \"What's going to happen when Jonathan turns 18 and
ends up off my health insurance? And what happens if Jonathan goes to
college and we can extend the health insurance to 23 years old, and he
makes it through college but he hasn't been able to hold down a job?
He's been in the hospital a lot. What if he can't be employed? What if
he can't be insured? What's his future?\" So she decided to apply for
SSI benefits for Jonathan, not knowing his employability or
insurability, and Jonathan was 18 when he was denied his application.
His mother contacted an advocate on the list provided by Social
Security, and the attorney never heard of primary immune deficiency
diseases and told her to forget about appealing the case. So Jonathan's
mother decided to become Jonathan's advocate and do the work herself.

So she filed all the paperwork, got the letters from her son's doctors,
and she went through the process. The SSI person told her that she
needed a hearing before the administrative law judge and said to get an
attorney. She and Jonathan decided to continue on their own. The judge
received the file and approved it without a hearing. When she didn't
receive any additional information about the award she called and was
told that the case was being audited, but everything worked out in the
end, and the whole process took one-and-a-half years.

Jonathan is now 21 years old and is in college, and the SSI benefits has
helped him with school because he has frequent setbacks and through the
college he has a counselor, and when he ends up being hospitalized the
counselor is able to get him extensions for work so he's not failing out
of college. His mother continues to cover him through her insurance. So
the question is, I mean, we talked about this, is that what happens once
Jonathan finishes college? One of the things in his program, he's a
computer science major. He needs to have an internship, but he hasn't
been able to hold a job. He hasn't been able to do his internship. So
will he be able to hold down a job, and will he be able health
insurance? So we don't know what assistance Jonathan will need in the
future.

So some of my recommendations, and these are the same recommendations I
made in Philadelphia, is to train the Social Security Administration
adjudicators to know what primary immune deficiency diseases are and use
a list of more common diseases to help recognize them, but know that
there are other diseases that fall under this category. Consult with
immunologists trained in primary immune deficiency diseases throughout
the disability process, especially during the hearing process. Also I
wanted to mention when dealing with children there's the issue of being
born with the disease and having the impairment immediately versus it
coming out later, and a lot of these children are going to come out with
\-- are going to become symptomatic later on. So the congenital immune
deficiencies shouldn't be limited. I mean, if you're going to keep the
listing as congenital realize that it's going to \-- there's going to be
a delayed onset of clinical symptoms. If not then that should be
changed. Understand that primarily immune deficiency diseases are marked
by recurrent, poorly responsive, severe, or unusual infections. These
infections are a result of the defects in the immune system. Immune
deficiency should be suspected in a person of any age that has more than
one pneumonia per 10 years of life, chronic sinusitis requiring
antibiotic therapy, chronic bronchitis without history of smoking,
increased number of ear infection after age two years, chronic diarrhea
lasting weeks to months, or recurrent bacteria infections. Infections
may occur as frequently as ever two to three months. Affected
individuals may also have autoimmune diseases and cancer as a result of
their immune system abnormalities.

Every infection must be considered a serious infection for this
population since the immune system is compromised, and when it comes to
going to workplace \-- and this is a serious problem. When these
patients end up on disability they're going to be doing better because
they're going to be away from infections. They're going to be on their
therapy, and if you put them back in the same setting they're going to
go down, so \-- and in cases of children I don't know what the answer
is. In the case of Jonathan I think that there has to be a period of
time where you have to see if the child is going to \-- how he's going
to do in workplace and if he's going to survey, and what's going to
happen in terms of insurance. There are a lot of discussions about, you
know, a lot of these children may fall into the high risk pools in the
states, but all those have caps on them, and IGIV therapy you'll hit
that cap immediately. So it's a serious problem, and in terms of
Medicaid with like Cody as example, if he went onto the Medicaid system
his doctors aren't going to continue to care for him. So I don't know
what the answers are in those situations.

Here's my information to contact me. I have copies of the presentation
on the back table, and I want to thank the Social Security
Administration. I know Bill Anderson has already contacted me about
working together to set up a video to train adjudicators, which is
wonderful, and I look forward to working with you, sharing any of our
expert immunologists with you. Thank you.

(Applause.)

MS. MOORE; Okay. We're going to continue with Steven Taylor from
Sjögren's Syndrome Foundation. I apologize. Does anyone have any
questions? Okay. I apologize for that.

MS. DOAK: I'm Bonnie Doak. I'm with the Immune Deficiency Foundation and
I'm an adult patient, and I just wanted to respond to what Michelle had
commented on about the \-- I guess the verbiage. I'm not familiar with
it, that I guess it says about congenital immune deficiencies, and many
people are \-- do go many years. I was one of those. I was diagnosed at
39. I was all those years, and I was told, you know, it's emotional,
mental; and I lead a support group and I have over 1,000 people,
members, and this is really a common story. So I think there were people
to be diagnosed much later, and so I think it's really important if it
is saying congenital that \-- you know, to watch the verbiage on that
and possibly it would need to be changed.

MS. MOORE: Anybody else? Okay. We have to move on. Steven is not in the
room. We'll move on to Duane Peters. Sorry to catch you off guard. Lupus
Foundation of American, Inc.

**Presentation by Duane Peters**

MR. PETERS: Gee whiz, I had this little bit already worked up about
being the last person, so I can't do that. Oh, well. Thank you very
much. I appreciate the opportunity to present, and I also want to thank
the Social Security Administration very sincerely for inviting us to
participate in this meeting. I think that I probably will spend about 20
percent of my time during the course of the day dealing with this very
issue. My position in the foundation is I'm the Vice President for
Advocacy and Communications, which means I handle both the government
relations and relationships portion of our business as well as with the
communications and helping to educate both the public, policymakers, and
physicians about the many manifestations and symptoms of Lupus and it's
impact on our society. I have to say that I probably several times a
week \-- I receive call from a very distraught, frustrated and in many
cases individual who is sort of at the end of their rope because they
have been trying desperately to qualify for disability because they
aren't able to work any longer, their healthcare benefits have run out,
and they really have no way \-- both no income and no healthcare. So
they really are at the end of their rope. So I do appreciate the
opportunity to have an opportunity to speak here. I seem to be kind of
doing a stereo thing here.

My presentation today is really going to have four distinct parts, and I
promise you that I will be very short and distinct. The first part I
will have very brief overview of what is Lupus for those of you who are
not familiar with the disease. The second portion of my presentation
will be on the specific immune disorder regulations and some of the
suggested improvements and refinements that could be made to those
specific sections that apply to Lupus. Part three of my presentation I
will respond to the specific questions that you've posed to us in the
materials that you gave us in preparation for today's presentation, and
finally I'll end with a few summary recommendations on things that are
necessarily in parts two or three. So with that I will go ahead and
begin the first part.

First of all I'd like to start out with a brief overview of Lupus. It is
a disease of the immune system, and this is a disease where the immune
system does not function properly, and there is a lot of confusion about
what Lupus is and what Lupus is not. I want to start out first of all
with what it is not. Contrary to my fine friends at the Arthritis
Foundation who would like to say that Lupus is a form of arthritis, that
is incorrect. Lupus is a disease of the immune system. It does have
arthritic components, but it is itself an autoimmune disease, and it is
not cancer. I think that there is a lot of misunderstanding about Lupus.

We did a survey of the public. We do it every year, and basically about
60 percent of the people heard of the word Lupus. They understand that
there's a disease called Lupus, but only about 20 percent can reflect
any meaningful, accurate information about the disease. It is the
opposite of AIDS, and AIDS as you know your immune system is weakened
and cannot fight of infections. In Lupus your immune system is
overactive and you have to administer immunosuppressants to suppress an
overactive immune system.

Basically as I said it's an autoimmune disease. It's the body attacking
itself. It is the prototypical autoimmune disease, and by that we mean
it is sort of at the basis of all autoimmunity. I think Virginia had
talked a lot in her presentation about the many different autoimmune
diseases and how they have a common pathway. Well, many of the things
that you will see in other autoimmune diseases you can actually see in
Lupus. It can manifest itself in many, many different ways.

The immune system normally protects the body by producing antibodies or
proteins that attach and destroy foreign invaders such as bacteria and
viruses. That's exactly what it's supposed to do. But in people with
Lupus the immune system for reasons that we don't understand at this
time \-- we sort of know what is happening, but we don't know why it's
happening. The immune system produces antibodies that target the body's
own healthy cells, their own DNA, which can lead to tissue damage, organ
failure, disability, and unfortunately in about 10 to 15 percent of the
cases premature death. That doesn't necessarily mean that people with
Lupus die in a very short period of time, although some do. But most
people who have Lupus will lead a very normal life \-- life span I
should say. Not a normal life, but a life span. But there is a small set
of the population that unfortunately will de prematurely. They won't
live to their normal life span.

Lupus can affect virtually any system of the body, and it can present
itself in many different ways and many different forms. It can come
across as being very, very severe and in other people fortunately it's a
very, very mild disease. It typically affects the skin and the joints,
the muscles, the blood and blood vessels, and other major organs
including the kidneys, the heart, the lungs, and the brain. You've heard
this before from a number of people. It's very unpredictable. Some
individuals will have regular and frequent flares of disease activity.
Other people will only have an occasional flare up that will be
relatively mild, and some people will have an initial flare of the
disease and never have another episode of disease activity again. Those
people unfortunately are very rare.

The frequency and severity of the disease activity which we call flares
does indeed vary widely, and I think that that is one of the points that
I would like to make a little bit later on in my presentation about the
sporadic and unpredictability of the disease. Unfortunately my lovely
slide does not seem to be working on this computer. I don't know what
that does that. It worked earlier today. Gee whiz. I don't quite know.
That's the second half of it. What you would normally see up there is a
bar graph that talks about the percentage of people who have different
manifestations of the disease, and I'll just sort of read them off here.

Most of the people with Lupus will have achy or swollen joints. They
will have extreme fatigue, but I heard several people talk about the
fatigue part of it. As Virginia mentioned early, this is just now, you
know, feeling tired or exhausted. This is a case where your body just
will not function. It shuts down. You can't even get up out of bed. In
many of the extreme cases these people are just down for the count for a
long time. They just cannot function. Anemia is often very much a part
of Lupus, pleurisy, pains in the chest, skin rashes, hair loss, Reynauds
phenomena where your fingers turn blue.

The other thing, too, is a lot of people with have very severe,
debilitating skin rashes with Lupus. These skin rashes, some of the more
typical ones we call the butterfly rash which goes across the face. But
for those people who have Discoid Lupus, these can be very severe open
sores on the neck, the scalp, the face, and even though they may not be
totally disabling the prevent probably people from maintaining
employment because no one is going to want to work with them. You all
remember the prejudice that used to be out there for HIV. Well, if you
have somebody working your office who has, you know, open sores and
severe Discoid Lupus, you know, the reality is the employer is basically
going to find some excuse to terminate that individual. I'm so
disappointed my colorful little slide didn't come.

Here we go. About 1.5 million Americans have Lupus. That's a number
that's in great debate, and if you ask the National Institutes of
Arthritis, Muscular, Skeletal, and Skin Diseases they'll tell you that
there are 239,000 people in the United States that have Lupus. That's
because they're only counting people who have systemic Lupus who meet
the ACR diagnosing criteria, which in itself needs to be revised. 90
percent of those people who have Lupus are women, although men and
children also can develop the disease. Eight out of 10 cases develop
among women ages 15 to 44, and I'm going to emphasize that point because
this is a disease that primarily strikes young women, and people who are
disabled by Lupus are typically disabled at a very young age. There is a
higher prevalence among African American, American Indians, Alaska
Natives, Pacific Islanders and Asians, and in addition to that there is
a good bit of growing evidence that this is a disease that is much more
prevalent among people of Hispanic origin.

Okay. Let's get right down to the causes of disability with Lupus.
Mostly it is as result of mobility, joint pain, joint swelling, limited
range of motion and difficult of motion. People are just simply not able
to move and function properly. I spoke about the fatigue. Fevers and
malaise, Virginia also used the term that I like to use quite often, is
that it's like having a very extreme case of the flu that never goes
away. We've all had very extreme cases of flu. We know how lousy that
made us feel. Imagine feeling like that 24 hours a day, seven days a
week, 365 days a year. Also under-recognized in Lupus is cognitive
dysfunction or what we call Lupus fog. One of the things that can happen
in Lupus is there is swelling in the brain that causes people to not be
able to \-- they're not mentally disabled in the sense that they are
unable to communicate, but they are lost. I mean, it's almost like
Alzheimers in a way where they're just not conscious of who and what is
around them. Photosensitivity also is a disabling function of Lupus.
Some people are not able to be exposed to both the sun and ultraviolet
light, meaning fluorescent lighting which often is found in the work
setting. Renal failure or cardiopulmonary disease, basically organ
failure, preventing them from being employed.

In 2000 we conducted a survey of our members. Now keep in mind that our
members probably are in the more severe scale of the patient population,
but that does give you an idea of what is happening in Lupus, and these
are people that responded to our survey. We sent out about 40,000
surveys through our newsletter. Close to 3,000 responded. We randomly
selected 1,100 of them and calculated them; 28 percent of them were on
disability at the present time. I don't know if that is all Social
Security or private disability. I just don't the answer to that. We
didn't ask that, but there are a large percentage of them are disabled;
35 percent have said they have received disability benefits at one time;
17 percent had stopped working for a period of time as a result of the
disease; 38 percent had stopped working permanently because they just
couldn't work any longer; 18 percent had cut back on their hours; 12
percent changed their jobs to accommodate their illness either to less
stressful job or to a part-time job or something like that. Fortunately
for about a fourth of them nothing has changed. Their life is going on.

I'd like to now discuss some of the specifics in the immune disorder
regulations that I think can be improved. 14.00(B) the paragraph two, it
says \"A longitudinal clinical record of at least three months
demonstrating active disease despite treatment during the period with
the expectation that the disease will remain active for 12 months is
necessary for assessment \--.\"

You know this, right? You got have the disease, expect that disease for
12 months. Well, part of the problem is that Lupus is unpredictable, and
you've probably heard this many times, but let me reinforce it. The
health status of people with Lupus changes all the time. It's not so
much that they may not have periods where they can work, but the fact is
that they are sick a lot and they are often \-- because they are sick a
lot they are often terminated and no one will hire them. Many times when
they reveal the fact that they have chronic incurable disease like Lupus
their employer finds some excuse to get rid of them. I have dealt with a
number of people who called us and asked us for help for dealing with
unreasonable employers.

Here's another point. You know this part, this paragraph here. It's in
the introductory part. I think it's really \-- it's constitutional
symptoms. Here is what I wanted to discuss here where they get to say
the science of severe fever \-- or, excuse me, \"Severe fatigue, fever,
malaise, weight loss, and joint pain, and stiffness.\"

The reality of the situation is that most people with Lupus are not
going to have all of those constitutional symptoms, so that the \"and\"
really needs to be an \"or\". Frankly if you're on Lupus one of the ways
that it is treated is with high dose corticosteroids, which does not
result in weight loss, but quite often results in significant weight
gain. If you're a person with a disability coming into, you know \--
excuse me, with Lupus coming in to apply for Social Security disability
and someone sees you walking in there big and heavy, you know, right
away the prejudice is going to be this is lazy slob, and that is a very
unfair assessment because these people through the medications
oftentimes gain significant weight. So that was one specific thing, but
I think if there is no else that you do for people with Lupus making
those constitutional symptoms not be in totality I think, making them
\"or\" instead of \"and\", I think you will have a significant
improvement in the regulations.

Specifically in the introductory remarks in the Lupus section it says
\"Systemic Lupus Erythematosus. This disease \--.\" Forget this part
here. This is what I'm suggesting that you add, \"(frequently but not
always) characterized clinically by constitutional symptoms and signs
(e.g., fever fatigues, malaise,\" yada, yada, yada, \"and frequently
anemia, leukopenia, or thrombocytopenia. Immunologically an array of
circulating serum auto-antibodies can occur, but are highly variable
\--.\"

What I would like to suggest in here is the addition of \"frequently but
not always\" characterized by these symptoms. Again, not people \-- it's
a very variable disease. People with Lupus are not going to have all of
these symptoms at the same time, and the same with the \"and
frequently\". I don't know if there is another word that come up here.
Occasionally often may include, I don't know, but the \"and frequently\"
sounds like, you know, this going to happen to a lot of people all the
time. Now you and I sitting in this room probably understand that. But
you know you get some judge out there or hearing examiner who is looking
down here trying to be a purist, and he's going to say, \"'And
frequently.' Well, you know you don't have all these things. You know,
therefore I don't think you're going to be able to do that.\"

Specifically here again in paragraph seven, \"Generally the medical
evidence will show that patients with Lupus will fulfill the 1982
revised criteria for classification for Systemic Lupus Erythematosus of
the American College of Rheumatology.\"

I will tell you this, that there is a committee at the ACR that is
looking into the revised criteria and is considering revising them. Why?
Well, because many of the people with Lupus do not fulfill the ACR
standard of meeting four or more diagnosing criteria. Now the diagnosing
criteria are not the same as symptoms. For example, individuals who have
severe disabling joint pain and swelling may indeed only meet three of
the diagnosing criteria and therefore will not have a diagnosis of
Lupus, but they're being treating for Lupus because they indeed have the
disease. So again one of the things that you could do would be to change
the \"will\" fulfill the criteria to \"may\" fulfill, or \"usually but
not always.\" Some sort of qualifying so that it doesn't say that if
someone doesn't meet the four or more diagnosing criteria as established
by the ACR that the indeed do not have Lupus and therefore don't qualify
for disability under this regulation.

Systemic Lupus Erythematosus, in the specific part about Lupus there in
14.02 there are a number of different disorders listed there,
references, and in the skin reference which is number nine what I would
like to suggest there is that neither this 8.00ff or the skin reference
makes any reference to photosensitivity. There are some people with
Lupus who are so photosensitive that they literally cannot be exposed to
any daylight. Being in this room would be a problem for them with the
windows open. We have some of these folks come to our meeting. We have
to make sure that it's in a room where there are no windows or that the
drapes are closed, or that there are no fluorescent lights in the room,
because some of these folks it will send them off into a flare. As you
all know, that fluorescent and in many cases sunlight is often found in
a work setting.

So could you add, consider adding, \"or severe photosensitivity\" to the
end of this skin involvement, number nine, or somewhere in that 8.00 put
some reference to photosensitivity. Because again, I think you are going
to see a number of people are disabled, and it may be that they have
that photosensitivity but otherwise they're healthy. But the fact is
that, you know, they may indeed not be able to go to work because \--
you know, because of the lighting situation. I've had parents of
children call and say they tried to get the schools to put lights, UV
light sleeves in their schools, which they refused to do.

Okay. I've beat this one to death again. This is the \"and\" and
\"must\" part. I think you know it's rare that persons would have all
this. So again if it could be changed to read \"Documented
constitutional symptoms and signs of fever \--.\" Excuse me. \"Severe
fatigue, fever, malaise or weight loss,\" and \"At least one of the
organs/body systems should or may be involved \--.\" You know, the
\"must\" is again a pretty definitive term there. You know, \"To at
least a moderate level of severity.\" I like that term, but it could be
improved.

Okay. Here are your questions. \"Are the factors that would help us
evaluate the disability claims that we could add or change?\" I think
again there needs to be included some language in your introductory part
about the unpredictability of Lupus and the fact that it varies from
person to person and that could it indeed vary even within a particular
case of Lupus. Recognize that people with Lupus will not \-- oops, sorry
\-- will not always be disabled, but nonetheless will be unable to be
gainfully employed because they are sick frequently. I'm not talking
about people who just have Lupus deserve disability. What I'm saying is
that those people who are sick all the time but they may not be sick
consistently for 12 months, and especially when they go for their
appeal. You know, a lot of times they're going to go into their appeal
and they're going to \-- you know, they'll be bringing in lab work that
is done right then. Well, you know, at that point in time their labs may
look pretty good, but that doesn't mean their labs are going to look
good a month from now or five weeks from now or five months from now. So
there needs to be some recognition of that.

The business about adults and children, I think actually the regulations
are pretty good with the suggested improvements for both adults and
children. They are pretty much are the same. I don't necessarily know
that that's a problem.

\"What are the variations in favorable and unfavorable responses to
treatment?\" The variations are pretty big. For some people, you know,
if the doctor writes, you know, the patient is responding favorably to
treatment that may mean that, you know, they're in remission. They don't
have any signs of disease activity. All their labs look good. They're
doing pretty well. For others, though, responding to treatment means
that they are able to function between significant disease flares. We
are able to extend the period between the time that they are sick and
the time that they are well. For others it may that they are at least
now able to function. They can go to the grocery store. You know, they
may be able to, you know, do household chores, that kind of thing. But
as far as holding down employment, they would not be able to do that.

Again, doctors are often only treating the symptoms. There is no cure
for Lupus. We can only treat

the symptoms, and we treat it with a lot of heavy-duty medications, very
toxic, high-dose corticosteroids, immunosuppressives, antimalarials,
yada, yada, yada. These drugs themselves are often very disabling. They
can cause a number of other secondary health problems. I talked about
weight gain, but in addition to that if you're issuing high-dose
immunosuppressives you're making the patient susceptible to infection,
osteoporosis and bone loss, a whole host of other problems with the
therapies.

What should you add? Possibly short-term memory loss or Lupus fog. This
is a problem for many, many patients, and again it's a problem with
disability in the sense that they can't perform work. We have a lot of
people who are involved in our organization that we have to really work
very closely with in order to get them to absorb the things that we're
telling them because they have this cognitive dysfunction. They're not
mentally retarded or impaired in the sense that they can't comprehend.
But, you know, you ask them five minutes down the road and they're not
going to remember what you talked about. Photosensitivity to sunlight,
you know, I talked about that pretty much.

Constitutional symptoms. Okay. Cognitive dysfunction or short-term
memory loss, and I talked to you about the \"and\" and the \"or\". I'm
not going to go over that again.

\"What is the effect of treatment on the length of disability?\" Well,
treatment can have little or no effect on the term of disability. You
know, there are many variables. Again, because we can keep the symptoms
under control it doesn't mean we can actually control the disease. The
disease is subject to flare at any time. Stress is a significant trigger
for Lupus. Obviously as you heard some other people say today and
yesterday with the HIV panel there's a lot of people think they feel
good and they start going back to their routine, and the next thing you
know the disease has flared and they're out for several months again.
Until treatments can actually get to the cause of Lupus rather than the
symptoms of Lupus there really is no such thing as total remission. The
treatments can be disabling and toxic themselves. I pretty much gave
that one, as much we can do.

\"What should we consider when reviewing whether a beneficiary with an
immune system disorder continues to be disabled?\" Well, again, I think,
you know, it is a chronic, unpredictable disease. A chronic illness does
not go away simply because a person has good health. I think that there
really needs to be a long-term, long-term period of time without any
kind of disease activity before we would even want to consider whether
or not they should go back to work. However, there are a lot of people
who want to go back to work. They feel good enough. They feel that they
are able to work, but the reasons that they don't go back to work or
don't push that issue is that they obviously \-- and you've heard this
before many times \-- is they don't want to lose their health benefits.
If we can figure out a way that people could go back to work and not
have to go through again a three-month, four-month, five-month process
to requalify for disability and get back on Medicare then I think, you
know, we're onto something. But, you know, until we can address that
particular problem no one is going to want to give up their health
benefits, because without it, you know, many of the panelists said the
same thing, they would die.

Everybody says here we got to train the examiners and the judges. Well,
you know \-- me, too. People with Lupus won't always look sick when they
show up for a hearing. You know, it is a hidden disability. It is a
hidden disease. They don't look crippled in many cases. They don't look
like they're sick, but they are sick from the inside out. They will not
continuously be ill and they actually can have periods where they'll be
able to function. They may be able to function, but they may not be able
to sustain that activity. I think one of the things that you look at is
their ability to be lifting, standing, sitting, or bending. Well, you
know what? I can tell you right now I can probably do \-- bench press
100 pounds here right now, one time, maybe twice. I don't know that I
could bench press 40 reps of 100 pounds. The same way with people with
Lupus. They may be able to go to work for a day. They may be able to go
to work for a week. But in many of these cases they're not going to be
able to sustain that activity, and they're going to be right back where
they started from. They may have short-term memory loss and be
photosensitive.

Let me tell you a little story that came to me yesterday \-- or Tuesday.
I had a lady call me from here in California. She has Lupus. She has
cognitive dysfunction. She bought a house several years back and had it
certified for all sorts of things that, you know, you want to have it
certified when you buy a house. Turns out this house has significant
mold problems, and she got in with a very unscrupulous real estate agent
and a contractor who certified the roof and so forth, yada, yada, yada.
Anyway, long story short is she has to sue them to get this dealt with
because the unscrupulous contractor who inspected the roof did not agree
to go to arbitration. So she has to go to Court. She has to go to trial.
Well, this lady suffers from cognitive dysfunction and she gets very
flustered, she gets very \-- and she just can't go to Court, and she was
calling us to see if there are any exceptions that, you know, would
force her not to have to go to Court or do some other way of presenting
her testimony because of the short-term cognitive dysfunction that she
has as a result of Lupus.

And of course, finally, they will not have all the constitutional
symptoms, especially at the same time. So you've sort of heard a common
theme here among all the people that we've talked \-- that have talked
today and yesterday about these problems, that they're not always sick,
that they may not have all these symptoms at the same time, that's it
unpredictable and so forth. So I think if those changes could be somehow
incorporated into the regulations I think you'd do a great job of
improving things.

Finally I'd just like to remind everybody that on the back of the thing
here I brought our new magazine. We're very proud of it and we love to
show it off. We hope you'll take a copy of it, and I also have copies in
the back there of my remarks along with some posters, although the one
that I have out there is not this particular poster. But please take the
information and we're very glad to help you. If you need some additional
information here's where you can get it off of our website, or if you
need any specific answers to anything specific about Lupus just send
your little email to
[[info@lupus.org]{.underline}](mailto:info@lupus.org) and we will be
happy to respond. Thank you.

(Applause.)

MS. MOORE: Questions.

MR. PETERS: Barry has a question. Or you can ask. Okay. Go ahead.

MS. SCHOENBERG: This is Nancy Schoenberg from Social Security. My
question is about continuing disability reviews given that as you said
Lupus is an incurable disease. I think yesterday we heard some talk
about they're not continuing disability reviews in HIV cases. Would you
advocate dropping continuing disability reviews for Lupus patients
and/or have you had any problems with them?

MR. PETERS: That's not been brought to my attention as an issue. I don't
say it doesn't exist, but I have not really heard anybody say, you know,
that they've been on disability a long time and, you know, now they're
no longer qualified. That hasn't come to me. I don't say that it isn't a
problem, but it's never been addressed as an issue that has been of
great concern in the population of the patients.

MR. EIGEN: Okay. Well, I have two questions, and they're actually for
the whole panel. It kind of goes with what you said about how these are
common themes. I have two common-theme questions. First a very specific
one. I noticed, Duane, that you said that you kind of like the provision
in the Lupus listing which actually appears in all the other immune
system listings for a person with a variety of signs and symptoms and
involvement of multiple \-- wait. Let me read this right \-- two or more
organs/body systems, and at least one of the organ/body systems must be
involved to at least a moderate level of severity. I thought I heard you
say, \"And I kind of like that language.\"

MR. PETERS: Well, yeah. A moderate level of severity. In other words,
it's not saying that it has to be real severe and real disabling, but at
least that there is some involvement. I think that, you know, to be
honest with you, the \-- many people with Lupus are going to have
multiple symptoms of the disease and multiple organ systems. Not all of
them, but many of them will.

MR. EIGEN: Well, my question was is that a meaningful thing to you, and
I guess your answer is yes. If we say at least a moderate level of
severity \-\--.

MR. PETERS: Yeah. I mean, that's to me \-- I'm not a lawyer, and so
maybe one of the lawyers may disagree with that. But to me that makes it
enough latitude that, you know, it's not spelling out real severe, you
know, great severity or something along that. To me, a moderate level of
severity sounds it. You know, there is evidence that the organ system
has been impacted in some way. I mean, that's my interpretation of it.
That's why I seem to like it. I don't know how everybody else feels.

MR. EIGEN: So how do the rest of you feel about it? It's in all the
other listings. The same words are in all the other listings in this
body system. Well, I'm putting you on a spot.

MS. ELIZONDO: Well, we haven't done our presentation yet, but I'll go
ahead and say that arthritis \-- the inflammatory arthritis has the same
kinds of, you know, prevalence of fatigue and pain and other disability
that all these other diseases have. I mean, I guess they're all immune
or autoimmune. So to be able to say it's moderate in a couple of places
is probably \-- it's a much better than to say you have to be severely
disabled by this one thing or you have to be severely disabled by these
four things. Just because what happens is it's cumulative of what \--
that's where you get the disability is cumulatively being in pain and
cumulatively getting wiped out, fatigue.

MS. WONG: The exponential, but multiple disability. Exponential thing.

MS. ELIZONDO: Yes. Just it starts to layer itself and instead of just
having just one disease, you know, there's not just one problem that
characterizes the disease. It's you can't just say you have to be
severely disabled with this one thing.

MR. EIGEN: Okay. Well, that's a good segue way. Here's my other
question. I don't know how familiar you are with the HIV listing in this
body system, but the HIV listing at the very end \-- this is true for
adults and children \-- has two listings. One of them \-- I'll start
with the last one first. The last one includes the following words. I'm
skipping the first part of it, but it says, \"Repeated manifestations of
HIV infection,\" and I'm going to skip ahead \-- that don't meet the
criteria earlier of course, \"Resulting in significant documented
symptoms or signs. For example, fatigue, fever, malaise, weight loss,
pain, or night sweats and one of the following at the marked level.\"
This is for adults. It's different for children, but it's the same idea,
\"Restrictions and activities of daily living, difficulties in
maintaining social functioning, or difficulties in completing tasks in a
timely manner due to deficiencies in concentration, persistence, or
pace,\" which sounded exactly like what you were talking about before.
That sounds to me like a provision that could be useful for evaluating
other kinds of immune disorders. Is that \-- I'm putting words in your
mouth.

MS. WONG: Can you say that again? Concentration?

MR. EIGEN: I'll show it to you.

MS. WONG: It's my \-- I'm demonstrating.

(Laughter.)

MR. : What paragraph?

MR. EIGEN: It's 14.08N. It's right here, and then there's one right
before it that \-- am I losing you? It's in the backs of your book in
the HIV listing if you look for it.

If there were pages numbers I could tell you.

MS. : Yeah. This is good. This is good wording.

MS. : This one right here though is real specific to HIV.

MR. EIGEN: Right, but that \-\-- changes.

(Multiple conversations.)

MR. EIGEN: But I mean something like that would be a good thing.

MS. : Yeah. That would expand what \--

MR. EIGEN: And now that you've all got it out, if you look at the one
before it. It's obviously very specific to HIV, but it's one for people
who get sick with different things.

MR. PETERS: \-\-- meningitis.

MR. EIGEN: Right. I mean, you'd have to put in different words, but it
would be something like that.

MR. PETERS: I think, you know, the daily function of life, you know, for
people. Again, the fatigue, the inability to move, the exponential kind
of problems, all these things layered on top of one another really do
\-- any one of them by themselves isolated may indeed not be disabling,
but layered on top of each of other they are all unable to perform even
daily routine let alone employment.

MR. EIGEN: And the thing about it is this doesn't say this, but other
words in our regulations say you don't have to be like this every minute
of every day of the entire year. You can wax and wane as to \--

MR. PETERS: I agree. I think that would be a tremendous help.

MR. VOGEL: Barry, and the other thing and for the primary immune
deficiency diseases, just to make sure, when retesting people on the
levels, I just want to stress this because it happens over and over
again. When the patients are on IVIG therapy their levels are going to
be at the right level and, I mean, we're having this happen with even
the states with Medicaid to get prior authorization for the continuation
of IVIG treatment. They want to see the levels go up. They want the
patients off the drugs and have patients drop their levels to see that
they actually have the disease still, and so \-- I mean, it's crazy.

MR. EIGEN: Now, there's definitely themes here. We heard the same thing
from the HIV guys yesterday. They were talking about their T-cell counts
and their viral loads, and sometimes those things appear normal or
practically normal, but they're still very sick. It's the same idea.

MS. VOGEL: Yes. Because, I mean, without the IVIG therapy the levels
will not be there, and it's life threatening.

MR. PETERS: Can I make just one other comment? Since I got out of order
here I got flustered and I didn't have my notes in front of me, but one
other thing I want to mention. Somebody had said yesterday, and I \--
this was the first I'd heard this. I heard somebody say that they're
considering, you are considering, allowing physicians to present expert
testimony via teleconference. Did I understand that correctly, or did I
misinterpret what somebody was saying?

MS. : It was a suggestion of somebody.

MR. PETERS: That was a suggestion? I got to tell you, that would
probably help because, you know, we had heard some people earlier saying
about the physicians being difficult to get in touch of. But if we knew,
you know, if we could work arrangement with the patient's doctor that at
10:00, you know, there's going to be, you know, a hearing for this
appeal and, \"Doctor, could you be available via teleconference at 10:00
to answer the examiner's questioners?\" I think that that would go a
long way to making the system both fair and more efficient, and I would
wholly support that.

MS. MOORE: Are there any other questions for Duane Peters or any of the
panel members at this time? Okay. I would like to introduce to you
Steven Taylor from Sjögren's Syndrome Foundation.

**Presentation by Steven Taylor**

MR. TAYLOR: Thank you and, Duane, thank you for bumping ahead of me
there.

MR. PETERS: That's quite all right. I\"m very flexible.

MR. TAYLOR: I thought I was going to be between you and lunch, but I
believe there's one speaker after me, but I will be somewhat brief. My
presentation is actually back on the back table as well if you would
like to take copies. I first want to introduce myself. I'm Steven
Taylor. I'm the National Executive Director for the Sjögren's Syndrome
Foundation. In Philadelphia Dr. Fred Vivino spoke for us who is our
chair of our Medical and Scientific Advisory Board. So I am actually
presenting his presentation that I helped worked with him to put
together, which really won't do it justice as Dr. Vivino has since I'm
not a medical expert or healthcare professional. So, but I will run
through our presentation and answer any questions that I can answer, and
for those that were in Philadelphia, I think Dr. Vivino did a wonderful
job explaining his patients and their disease status and how he works
through their disability claims with them.

First for those that are not familiar with it, Sjögren's Syndrome is a
serious and prevalent autoimmune disease. It's the second most common
autoimmune-rheumatic disease, and I was privileged to see that in your
review from Philadelphia you did list that as one of the things that you
all learned at that seminar back in December, and we appreciate that.
It's five times as frequent as multiple sclerosis, which shocks most
people when they hear that statistic. An estimated 4-million Americans
are affected by Sjögren's Syndrome, 90 percent of which are women,
mostly diagnosed around the age of 50 years old on average. Five to 10
percent of Sjögren's patients actually develop non-Hodgkin's lymphoma.
We're not sure why that is, but we are working on research to figure
that out and hopefully help the Lymphoma Society as well figure out how
we can help all lymphoma patients as well, and obviously Sjögren's
Syndrome is very disabling.

In your slide which you probably can't see as well here, Sjögren's
affects many aspects of the body and you can read this at your leisure.
But it obviously affects everything from the eyes and mouth, which is
the biggest manifestations, but it affects all organs since it's
systemic dryness, and I'll let you look at that at a later time.

A few things that I'd like us to recognize as we begin is that Sjögren's
Syndrome affects many organs, as I just said, in body systems, not just
the eyes and mouth. Sjögren's patients have recurring and unpredictable
flares as we've said about most of the autoimmune diseases. Sjögren's
adversely impacts the work productivity as well as well as their
personal life, and then work environments can exacerbate the disease
symptoms.

This cartoon illustration kind of shows that all Sjögren's patients are
not alike and often look fine, and yet they are living with the chronic
illness which is very disabling and difficult to accept for them.

What Dr. Vivino did for the Philadelphia presentation was we put
together three very different patients for you to see and see how they
present differently among all three. Each person with different
symptoms, their disease course and ramifications vary, and each has
their own specific work-related issues.

Patient A, which we'll call sicca, is a 50-year-old woman who is a
leading company manager. She's expected to travel, give presentations at
meetings, and meet colleagues and clients for dinner, et cetera. Her
main symptoms and her manifestations of Sjögren's Syndrome are severe
dryness, systemic dryness, eyes, mouth, nose, lungs, throat, ears, GI
system, et cetera.

The repercussions of that dryness for those who aren't familiar with
Sjögren's is her vision is obviously severely effected. She must put in
eye drops every 20 minutes during presentations, during her course of
the day, which causes her not to be a wonderful presenter. As well as
she can develop corneal ulcers, which are disabling and can often cause
blindness. Eye sensitivity to the light, which is very difficult for her
to travel and to drive. Problems with computers, working on a computer
all day to put together her presentations can cause not only eye issues
but also the fatigue and other things we've talked about earlier.

A lot of our Sjögren's patients end up with hoarseness or difficulty
speaking, and obviously that presents a problem if she is presenting at
meetings. So that's a major issue that she lives with. A constant dry
cough; air conditioning and dry heat causes dryness. So her traveling,
her hotel stays, her airline travel, obviously it exacerbates her
disease.

Tongue and mouth burning, oral infections, yeast infections, tooth
decay. When Sjögren's patients don't \-- since they develop a normal
production of saliva, which many of us don't realize that we produce
about a liter or so of saliva a day, and that causes mineralization of
our teeth and cleans off the decay on our teeth. So Sjögren's patients
have horrible teeth decay that cause them many, many times in the
dentist's office. They go usually one to two months for checkups \--
every one to two months for checkups, and not only does it cause \-- and
most people would say, well, just have their teeth pulled. Unfortunately
Sjögren's patients can't really go with dentures. Because of their
dryness they cause yeast infections and they cannot wear dentures. So
therefore they have to take care of their teeth as long as they possibly
can so that they can live with that with their regular teeth, except
even when you cap your teeth the decay goes underneath the gum line
because of the lack of saliva production. So most of us who have normal
saliva production don't realize how important that is to our daily teeth
hygiene.

Then obviously they cannot eat normal foods. Not only with their decay,
but their mouth. Some of our severe patients can't eat anything except
pureed food or baby food because it cuts their mouth because they have
no saliva to help soften the food in their mouth and to be able to
swallow it, not to mention they have swallowing issues as well for those
severe patients. Then recurrent nose bleeds and respiratory infections
are very probable with the severe dryness that this patient might see.

Our next patient, patient B, is more of a systemic, we call systemic.
It's a 40-year-old woman who is a paralegal. She receives clients, works
on legal documents, runs errands, attends professional meetings. Her
symptoms are vasculitis, which is a skin rash that usually affects the
lower legs; peripheral neuropathies, which are numb toes and numb
fingers; joint and muscle pain; polyarthritis; and then interstitial
lung disease.

The repercussions of her symptoms, obviously the chronic skin rash can
cause discomfort and alter choice of business attire. She can't wear
tight fitting clothes or blouses or pants or pantyhose because of her
rash on her legs. Her legs are often numb and in pain, which causes
difficulty to walk, to run errands, et cetera. She can't stand or walk
for long periods of time because of the numbness. Her joint pains affect
her typing and her writing ability, and then exertion causes shortness
of breath. With the lung disease it obviously adds to her daily ability
to keep up with the pace of her workload.

Then patient C, which we call lymphoproliferative. This is a 30-year-old
woman who is a hospital nurse and trying to move ahead in her career and
really wants to work. Her symptoms are low grade fevers, fatigue,
swollen salivary glands, painful swelling of lymph nodes in the neck and
groin, and then a moon-shaped face and weight gain resulting from
prednisone.

The repercussions of this, obviously she misses work frequently due to
the fever and the fatigue. She finds the long hours working on the
nursing floor extremely mentally and physically stressful. She can't
work overtime or per diem work due to the fatigue. She never knows how
she's going to be feeling or if a flare up might occur. She has problems
lifting and assisting patients, and then she deals with potential
employment repercussions because of her disfigurement from the
moon-shaped face from the prednisone, the steroid that she's on. As well
as she's concerned about catching something from patients and the side
effects of the treatment that she's on. The biggest issue is not only
are the patients a little nervous about her because she's tired, she
can't help them as much as a normal nurse could, as well as she does
look disfigured. But in addition she's working about catching something
which is going to add to her disease as well. So it's a double-edged
sword for patient C.

Signs and symptoms of Sjögren's Syndrome are tough to measure. Some are
easier. Obviously are ocular dryness with our test that we have, our
Schirmer test, the dye scores, et cetera, are easier to spot and
understand. The oral dryness, again there's the salivary flow along with
the other tests that are listed there. They have certain numbers and
specifics that come up that help with the criteria for diagnosing
Sjögren's. Thyroid function tests and obviously a fever is very easy to
detect.

Other are more difficult. Obviously the pain, the fatigue which many of
our presenters have spoken about this morning. Unpredictable nature of
the flares we don't know. Oftentimes I'll be with Sjögren's patients who
attend just an educational seminar like this past Saturday in Phoenix
who know that the next day they're going to have a flare up of their
disease because they were so active that day. Yet there's others who
attended the seminar, the next they might be fine. Come Wednesday of the
following week they might have that unpredictable flare up and not be
able to go to work. Cognition, another difficult area to measure, skills
for coping with the chronic disease as well as depression.

Will new treatments help? Unfortunately since there's the unknown
pathogenesis of Sjögren's there's no cure for Sjögren's in the near
future. We do need more research funding to help not only for a cure,
but also to find new prescription drugs as well as understanding can
lead to better treatments, but this is nowhere near to a cure. It's just
helping them live with their symptoms. Then currently over-the-counter
treatments are insufficient because not only to do they provide
temporary relief, but our patients spend thousands of dollars each year
on over-the-counter products; eye drops, supplemental saliva production
products that are over the counter, along with others for their pain,
their joint pain and their fever.

A survey that we did in 1998 \-- and we're currently doing another
survey that will be finished by April, but our survey from '98 our
patients' average spent \$1,600 a year on over-the-counter products.
Thanks to a new IRS ruling some of that will be able to be tax
deductible for them on their IRS statements starting immediately, and
we're working on over-the-counter legislation that's been introduced as
well to help them be able to write off more of their over-the-counter
medications as well.

Our suggestions are pretty limited in regards to we would love to have
Sjögren's Syndrome listed as an individual disease with separate
guidelines relevant to the wide-ranging impact on all the organ systems
and their ability to work. Dr. Vivino, and he would be able to speak
much more to this than I can, but he would encourage you to consider a
ratings scale or chart based on the severity or number of body organs
affected, and he suggested this in Philadelphia. He answered some
questions, and I'm sure he'd be more than willing to work with anyone or
discuss in more detail what he means by this. But to look at this
besides just the easier symptoms to diagnose, but look at the other
areas that are going to affect all the organs and have a sliding scale
to develop their severity of their disease.

We would encourage to include specialists in specific disease when
considering a claim. The question was answered a little while ago, and
Duane and others talked about the teleconferencing. You know, Sjögren's
Syndrome Foundation would surely love to work with the Social Security
Administration to develop a list of Sjögren's Syndrome experts along
with the American College of Rheumatology that can speak to this
disease.

Oftentimes our patients, as many presenters this week have spoken about,
take years to find a doctor that actually understands Sjögren's. Just
because they're a rheumatologist doesn't mean they're an exact expert in
Sjögren's, and I know this is probably an issue you run into using
rheumatologists. Some of them are experts in certain areas. Not to
mention they go to various doctors for all their different ailments that
relate to Sjögren's \-- dentists, ophthalmologists, neurologists \-- and
sometimes they don't have as many symptoms as the rheumatologist deals
with as the other specialists do. So we'd encourage you to include
various specialists in your \-- when you're considering a claim, and
also work with groups like ours and others that presented on helping you
identify these experts.

Then we also suggest that you consider co-partnering with us to request
Congress to modify work environments and schedules to return patients to
gainful employment. I know Virginia Ladd did a wonderful job this
morning talking about that, but part-time disability is surely something
we'd advocate for. Our patients don't want to stay home full time. They
would like to work. They cannot handle the rigors of working a full-time
schedule, yet they'd like to be a productive citizen and give back.
Oftentimes they're worried about even volunteering when they're on
full-time disability because of the repercussions that if they can
volunteer why can't they work. So they would like to have that ability
to be able to go work somewhere or work from home or various options. We
get many calls in our office asking us to advocate for work-from-home
schedules and could they telecommute from home, especially in the major
cities where commuting adds to their daily stress as well.

That it is. Just so you know, our website is Sjögren's.org. You can find
all the information on diagnostic as well treatments on our website, and
you can always contact me as well. If you'd like to speak with a
physician about specifics about Sjögren's, and Dr. Vivino who couldn't
be here today who is in our Phoenix conference, he's Chief of
Rheumatology at Presbyterian Hospital in Philadelphia, and he'd be more
than happy to take a trip to Baltimore or anywhere else when his
schedule permits to speak again for Social Security. So thank you very
much and thank you for asking us to be here.

(Applause.)

MS. : \-\--.

MR. TAYLOR: Well, Duane can answer my questions. I would love that. That
would be great.

MS. : Sorry. \-\-- Steven.

MR. : That's my brother's name.

MS. MOORE: No questions? Okay. Then we'll move on to the last speaker.

MS. : Okay. Joan Wong.

MS. ELIZONDO: I'm Meghan Elizondo.

MS. MOORE: Okay. Meghan from the Arthritis Foundation.

**Presentation by Meghan Elizondo and Joan Wong**

MS. ELIZONDO: Hi. I'm Meghan Elizondo. I'm from the Arthritis
Foundation. I'm a volunteer, and I'm on the Advocacy Committee with the
Arthritis Foundation. We're very excited to be here and really
appreciate coming, and we appreciate that you're having this event and
going through the guidelines and have invited all of these other
organizations to participate. It's really a great thing.

MS. : Meghan, can you \-\--?

MS. ELIZONDO: Yes.

(Adjusting equipment.)

MS. ELIZONDO: There were actually several of us who worked on putting
this together, and myself and Monica Johnson, who is also on the
Advocacy Committee, and Joan Wong who will be here in a few minutes. So
we're from the Arthritis Foundation. You probably know who we are, but
just to go over it a little bit. The Arthritis Foundation is in the
business of providing services and education to individuals affected by
arthritis to maximize their quality of life, and \--

MS. : You're too close to that.

MS. ELIZONDO: And we also work on raising funds and advocating for
medical research funding, legislation and policies on behalf of people
with arthritis, and the number of people with arthritis are 70-million
Americans. That's a very large number, and it's a new statistic from the
Centers for Disease Control. So that's much bigger than a lot of these
other diseases that are out there. So arthritis refers to more than 100
different diseases, and it actually refers to any disease that affects
the joints or areas around the joints. So it's kind of an umbrella term;
and there are two main forms, the inflammatory form, which tends to be
autoimmune related, and then degenerative, which is osteoarthritis. So
osteoarthritis is the more common form, but the inflammatory form does
take up \-- I mean it is 30 to 40 percent of people with arthritis,
possibly more, and that's what we're talking about today.

From the CDC again we had statistics that tell us that arthritis is the
leading cause of disability for Americans over age 15, and that's
two-thirds of people who are working age. So that's people under 65. So
that's a really large population of people who could be working but are
being disabled by arthritis, and that means that's a lot of people in
the disability system with the disease. Juvenile arthritis is the most
disabling childhood illness that is more prevalent than diabetes. So \--
sorry. This is the wrong \-- okay.

There are many forms of arthritis which are immune related, and we have
ankylosing spondylitis, psoriatic arthritis, rheumatoid arthritis,
Scleroderma and Lupus all fall under \--

MR. PETERS: It's not a form of arthritis.

(Laughter.)

MS. ELIZONDO: Well \-- they're all separate. They're all their separate
diseases, but they're caused by autoimmune diseases that affect the
joints.

MR. PETERS: There we go.

MS. ELIZONDO: So that's arthritis.

MR. PETERS: But it's not arthritis.

(Laughter.)

MS. ELIZONDO: I'm actually going to \-- this isn't the right one. So
after all the presentations today I think we've all heard this many
times. It's an autoimmune disease. It's chronic illness, and it has
cumulative effects over many years. So there's no cure for these
diseases. So that means you're looking, once you're diagnosed, you have
a lifetime of illness in front of you, and over the years that starts to
build up.

The arthritis symptoms aren't predictable from one day to the next. You
could be fine one day and laid out in bed for the next three days, and
you could be able to do an activity another day and, you know, it will
take you two

or three more days to recover from that. So that unpredictability is a
really huge issue. Pain and fatigue play a big role in the severity of
the disability, and it doesn't tend to be just a pain in your toe or a
pain in one place. Frequently it's pain in many joints, or it's very,
very severe pain in a main joint, and the fatigue is another huge issue.
Fatigue really does impact the way you're able to function, the way
you're able to live your social life, the way you're able to work. You
sometimes have to base what you are going to do just on whether you're
going to be fatigued or not, and it's not just fatigue as in \"I'm
tired. I didn't get a good night's sleep.\" It's fatigue in \"Oh, my
God. I can't move. I don't know if I'm going to be able to do my laundry
today,\" or \"I don't know if I'm going to be able to wash dishes
today.\" And if you do a chore that day you've done like a great deed.

Symptoms also vary based on many factors, which include medication,
stress, sleep, depression, and physical activity. So it's not just, you
know, getting medications right. It's a big issue that you have to go
through this large trial and error process of seeing which medications
work for you personally, and then you end up on a cocktail of
medications. So you have you'll be on up to like 10 or 12 medications
easily just to control the arthritis and all the accompanying symptoms.
So that's a lot of medications to take every day, and sometimes the
number of pills can total 100 a week, and that's just to get through
that week.

Another aspect that we see is that secondary illnesses are frequently
involved. If you have one form of autoimmune disease you'll frequently
have something else. So it's almost like it comes in clusters, and this
clustering effect is \-- really contributes to disability, and having
more than just \-- you know, just a form of arthritis by itself is
pretty devastating. But when you start getting this \-\-- of other
autoimmune diseases involved it becomes extremely difficult to deal
with.

So as I said before, there is no cure for arthritis. There's no cure for
most of these autoimmune diseases. The immune system is still being
studied. There are new drugs out. There's anti-TNF drugs. They're
sometimes called biologics, Enbrel, Remicade, Humira, Kineret are the
four ones out right now. There's Methotrexate which is a DMARD, and
DMARD are disease modifying anti-rheumatic drugs. So, but not all these
drugs work well for everyone. I mean, you can be on these drugs and they
will help some, but they don't make things incredibly better, and you're
still left juggling your cocktail of medications just to make it through
the day. If this were someone who is on disability and people who are
working and trying to manage all of this it's a real struggle. So Joan
would like to take over.

(Laughter.)

MS. WONG: I'm sorry. I feel like the lady who was at the Academy Awards
and her name was called and she was in the bathroom.

(Laughter.)

MS. WONG: Is this working?

MR. : Yes, it is.

MS. WONG: Okay. Great. I'm Joan Wong. I don't know if Meghan introduced
the three volunteer advocates who are here. Okay. Great, and I would
just \-- and I'm sure she also said this, but I'm going to say it again.
To thank Social Security for this opportunity and also just to say that
this \-- the SSDI program, there are three of here who have, you know,
had pretty extensive work histories who are now all on SSDI, and I guess
being the oldest and whatever I happen to be the one who has been the
program the longest. We've all had slightly different experiences,
actually drastically different experiences in the application process.
But, you know, getting back to the slide at hand \-- oh. What I wanted
to say is thank you for the opportunity, but thank you also for the
program. It's just an essentially fallback. Neither Meghan or I managed
to qualify for corporate disability. I had actually, you know, lived
probably most of my young life in denial and that's actually \-- that
actually works really well for a while, but I had moved to the bay area
from Chicago to start to start a new job. I had accepted this job a week
before I was to have my first knee replacement, and then I moved to a
new area, out of the consulting business where I was traveling
constantly to a job with a little software company called Oracle that I
thought would be a lot less stressful.

(Laughter.)

MS. WONG: Anyway, both of us \-- actually all three of us have
experienced, you know, working the technology world and that stress and
the always-growing demands on employees to be there every minute. You
know, be sharp and be at their best every minute and be on call, you
know, at any minute to drop everything and go fight some fire, or jump
on a plane and go take care of a client problem. That kind of stuff is
really, really tough to do when you have a chronic illness that you just
\-- even, you know, to the best ability you don't know from day to day
how you're going to be able to do. I mean, I'm the ever optimist, so I
was always signing up for things that sounded great on paper and really
exciting and I wanted to do it. And I think the end results of all of
that has been a lot of cumulative damage and a lot of exacerbation of my
arthritis, and I've watched that happen with my friends. We have a
pretty good little advocacy group that's formed out here in the past
year-and-a-half, and \-- so, you know, we're just a sample, but we do
talk about stuff.

Anyway, this last point, I wanted to stress \-- on the slide. I wanted
to stress it, but also explain that this is sort of a well-known
statistic in the arthritis community, and I used \-- before the internet
it used to be kind of like the dirty little secret that the
rheumatologists knew but we didn't know. I mean, those of us who were
diagnosed as children, you know, you don't \-- parents are just always
told have your kids do to the best of their ability, and \-- you know,
you don't want to tell somebody that they have a 51 to 59 percent chance
of having to not be able to work within 10 years of onset. I think
Monica and I beat that number by quite a bit, and Meghan's probably
right around that number. But I don't have the exact study. I actually
talked to a friend last night to try \-- because a statistic like this
is cited on the Abbott Lab's informational cite called ra.com. Like I
said, it's just one of those statistics that's out there.

But I talked to a friend who works for the Bone and Joint Decade, and
she actually pulled out this World Health Organization \-- oh, and she
also knows the authors well, and she told me she believes the study was
longitudinal, epidemiological study done in the '80s or the early '90s.
So this would probably reflect some of the disease-modifying drugs like
Methotrexate. It would not reflect the new biologics which just came out
like at the end of '98, beginning of '99, and there are subsequent
studies that I think we actually cite at the end in our resources that
are trying to predict what the changes might be in long-term disability.

But the reality is for people like me and Monica, who is back at our
table, you know, we were treated with just aspirin for our whole
childhoods, and that seemed to sort of keep symptoms in check. But what
it turns out is that it didn't do any \-- it didn't stop the disease. It
just reduced the symptoms, so we have \-- Monica has had four joint
replacements in the past year-and-a-half.

MS. JOHNSON: No. Two years.

MS. WONG: Okay. Two years. As quickly as she could fit them in, in
between recovering and bronchitis or whatever. We're all really
immunosuppressed, and \-- you know, we do the best we can, but we
definitely have experienced the flare and remission type thing so \--
okay.

So the fact, the reason we bring this up is not just that, you know,
there are implications of arthritis and musculoskeletal diseases or
disorders that can be fatal, but \-- you know, just to stress that this
is a severe illness. Again, the common knowledge is that with rheumatoid
arthritis a life expectancy is reduced by about 10 years, but there are
some \-- for people with severe arthritis and even though our
medications are improving, there are still people who don't respond to
any of them. I think in my case I had a great response to the first
biologic that came out, Enbrel. But it only lasted for two years, and
since then I've had only a partial or no response to every other TNF
inhibitor and also there's another biologic that inhibits, another \--
Kineret, which inhibits interleukin-1. So there are a lot of people like
me who get a partial response or a response and then it stops working,
and then with, you know, what exactly this \-- I wasn't able to read the
study in this case, but the fact that arthritis and musculoskeletal
disorders account for three out of every four deaths in the US, and this
was a fairly recent \-- from a consortium of science writers getting
together and doing reports on the current arthritis research.

We just within our little community of young adults with arthritis we've
just had two people die within six months, both in their 30s, of a
secondary condition, a secondary condition to arthritis called
amyloidosis. It's caused by unchecked inflamation in the body, and not
being a microbiologist or a doctor or anything like that, but it's
something about proteins that build up. Generally on the kidneys, but
often on the heart, and actually our friend who just passed away had
been on dialysis \-- 34. Had been on dialysis for a year-and-a-half.
That seemed to be working pretty well, but then she started having
seizures, which nobody at Stanford Medical Center \-- and this is
someone who has had the best of care, could \-- they couldn't figure out
the source of the seizures until this \-- her 34^th^ birthday, which was
two weeks ago.

MS. : Three weeks ago.

MS. WONG: Three weeks ago. She started having seizure after seizure.
Finally they determined there was some cardiac involvement, and just as
they moved her into the cardiac unit at Stanford she had her final
seizure and died on her 34^th^ birthday. So, you know, this I think,
this is just one case. We're told that this is a very rare disorder that
only something like less than a 10^th^ of a percent of people with \--
or less than a 20^th^ of \-- a little more than a 10^th^ of a percent of
people with RA or JRA will develop, but it's also something that is not
\-- I think they're farther behind than Lupus in terms of diagnosis.
There's really no signs. By the time there's any signs that people have
it they're already past the point of being able to do anything. So it's
something that, I mean, you can quote a statistic, but it's also really
hard to diagnosis, and often the deaths are, you know, recorded as
cardiac involvement or a heart attack or something like that. They don't
realize that there is a \-- in our friend Jessica's case the proteins
had built up all around her heart so that it was so stiff it could
hardly beat, and that's what when she was \-- when her heart was
freezing up like that she was having these seizures. So anyway, you can
die from arthritis.

SSDI issues, we got into this process really like Friday. So we've not
been able to review, you know, the guidelines in a lot of detail. But we
wanted to give you as people who have been through the system some of
our impressions and experiences as far as what we see on this side, like
on the user side or the beneficiary side of the system. SSDI seems to us
to be geared more towards stable disabilities rather than ongoing
illnesses that flare and go into remission, and I guess the other bit
about it that's not in our sentence is that it's flare and remission
cycles, but in many cases it's also a cumulative, you know, complexity
and just aging. So like in my case I had \-- as a kid I had a lot of hot
joints. I was real obvious. I mean, as a kid if my mother had known
about SSI I'm sure I would have been approved, and that's actually
another point that we did want to make, is that I don't think that, you
know, SSI is well known the pediatric rheumatology community. If the
kids don't have caseworkers they don't. So two of us were raised at
least partially by single mothers, and that would have been a big help.
But no one ever had any idea that was available.

But the stable disabilities as well as opposed to the cyclical, I know
that's something that you've heard from everyone, but another thing that
we \-- the actual process of, you know, this extended process, somebody
said four years to get from \-- through all of the denials and finally
to a judge who approved them. Somewhere we got the statistic that 60 to
70 percent of applicants who see an administrative law judge are
approved, and that just \-- and we've seen that. Meghan didn't have to
go quite that far, but she did have to go to the third round. It just
seems to reward applicants who are tenacious and who won't give up and
penalize those who may be equally disabled but just not very savvy about
government programs or, you know, not \-- you know, so sick that they've
got other issues to deal with.

Like especially an example is a young woman who we know who lives in
Santa Rosa who is in such bad shape because she's uninsured, and she has
JRA and she is just in the most incredibly bad condition. But I'm sure
that they have not gotten to the point of applying for disability
because they're trying to get doctors to see her, so you know this whole
\-- I think we really appreciated the lawyer's point that the system
would be great if the system worked precise enough that you didn't even
need an advocate.

In my case I'm almost embarrassed to say how I got approved because I
just \-- I actually was in such bad shape I had not even opened the
mail, the letter that said I was supposed to go see the Social Security
doctor, and he called because I hadn't shown up. I was living with a
women who was a two-time \-- my roommate who was a two-time cancer
survivor at the time, and she was just so astounded how bad, how sick I
was. At this age it's almost not so much the joints. It's the fatigue
and, you know, when you have that kind of a condition is it pretty hard
to follow through these processes to the end. She just went off on this
doctor telling all, how bad I was, and what she told me he said was,
\"Wow, I just have a little arthritis in my knee, and I can't imagine
having it all over,\" and I got approved. So that was easy, but I have
had \-- and we'll get into this more later in the presentation.

I'm also the one who just has \-- I just keep trying to go back to work,
and I want to work, and I have been so penalized in all of my attempts.
Just communications with the local office have been just so difficult
that always have to go to a \-- I'm ending up finding out just having an
advocate as my Congresswoman, and they know me, and they have a person
who deals with field advocacy \-- or there's something they call it when
they're helping out constituents and, you know, I \-- the first guy I
worked with is now her chief of staff in Washington. So we went there on
our first advocacy trip last year, and there was like the first or
second guy that I ever dealt with. So he's done well.

But we really just feel like, just to kind of wrap up that previous
slide, why can't there be a system that, you know, that is \-- no,
before. Yes. This one, the 60 percent. This having to go to an ALJ, in
Meghan's case she was just \-- her case was just about to go. You know,
they were in the back room and about to go to the judge, and her

\-- and then it was settled, and she'd had the same documentation all
along. So why can't there be a process that recognizes the important
things in the documentation, and it's just a little more \-- a lot more
pinpointed to the things that cause people to be disabled. Okay.

Okay. So I've been talking around this, but the process, we wish the
process were more transparent. It seems like we're being asked for, or
we or people who apply for this \-\--, it seems like we're being asked
for information. We're not quite sure what it's going to be used for,
and there's kind of a sense that, well, you know, that we don't want to
give them too much information because then they'll tell us what we want
to hear \-- what they need to say. But since I basically didn't
participate in the application process, and it was long time ago for me,
I don't remember that well. But talking with Meghan and Monica, and
we've talked to others in, you know, our circle before we came up here,
people felt like they weren't sure what \-- at what level, you know,
they should be answering these questions.

MS. ELIZONDO: Well, and the other thing, I mean, like Joan \-- Joan is
talking about the application level. But, I mean, based on Joan's
experience \--

MS. WONG: This is through the whole \--

MS. ELIZONDO: \-- the whole process, when she was transitioning to and
from work and reapplying for disability and all of that, letters would
kind of come at random and they would have random decisions made, and
then she'd get another letter like a week later with a different
decision. So it was really confusing, and that's where basically she
chose as a point of contact her chief of staff \--

MS. WONG: The Congressman.

MS. ELIZONDO: Or the chief of staff for Congresswoman Eshoo.

MS. WONG: Well, he's not doing that anymore.

MS. ELIZONDO: Oh, yeah.

MS. WONG: He's been promoted out of it, but that's the guy. There's
someone doing it.

MS. ELIZONDO: Right, but I mean that that's \-- right. But that's who
Joan connected with, and so she got her point of contact. It wasn't
through SSDI.

MS. WONG: But it shouldn't have to be there. It should be somebody at
Social Security.

MS. ELIZONDO: Yes.

MS. WONG: So I guess what I'm saying, yes, what I'm saying is \-- I'm
not sure how much we'll get into the application process, but after \--
once you're on disability and if a person really wants to work, which
is, you know, I think that's what you want, there just needs to be a
better process for a clarification of the work rules. Like I kind of
feel like I'm an expert on this substantial gainful activity and trial
work period and, what is it, the period of \-- you can be reinstated,
extended period of eligibility and all of that, but that just doesn't
\-- and even, oh, like unsuccessful work attempts. It just doesn't work
for the kind of disease that we have.

I think a good example is that, you know, that commercial they were
showing during the bubble where there was a job board or something, and
they said, \"What's your recent work history, and have you ever done
this?\" And the guy is like, \"No.\" You know, sign him up. I'd been off
work a long time and I managed to get a job with a startup, and it was
incredibly hard on my life and my illness. My husband still insists that
I was like psychotic for that period of time. So I worked for one
startup for six months. I had managed to get some little consulting
before that, and then I worked for this startup for six months. It
nearly killed me, and it was just like \"Survivor.\" Every two, every
staff meeting, every weekly staff meeting it seemed like they were
looking for another. As things got stuff there had to be another
scapegoat, and \-\-- survived it, and I was working in a field that I'd
never worked in. I did technology research. They'd hired me to do \--
this was a recruiting firm. They'd hired me to find technical people.
So, you know, I built a department and we did as good as we could, but
it was just so, so stressful, and I was having all kinds of health
problems. So I quit because I got an opportunity to do a consulting
project, but as soon as I got there the guy who hired me \-- at Exxon,
the guy who hired me got a job with another startup, with a startup. So
that was like, I mean, they did pay a little and, I mean, I just out of
there as quickly as I could because I had lost my sponsor. But, you
know, that still added to the clock ticking, and then I got a job with
another startup that only lasted five months before it folded, and this,
you know, one of \-- they had been funded by one of the top venture
capital firms and everything looked really good, but it was just a crazy
time.

So, you know, all of that lasted like a year-and-a-month, and so it
didn't qualify as an unsuccessful work attempt. I was just trying with
all my heart, but the result of that was so I got the \-- the whole
marketing department got laid off from this software company in mid
January of 2001, and \-- yeah. The result was that, you know, that
counted as not an unsuccessful work attempt, and furthermore the
regulation about a trial work period when it stated that it's nine
months over a \-- you know, any nine months during a four-year \--
five-year period. I hadn't worked for over five years, so I thought I
got another trial. Well, I didn't.

I mean, I admit I benefitted from the expedited reinstatement, which is
a new thing, but this point of contact that we're talking about was just
crazy. I mean, I actually had one. There was some guy who called me up,
and he gave me his direct line and he was available to me like
immediately, every time I called with a question, up until the time that
I \-- they got the information they needed from me. I had been sending
work reports, you know, all the time that I'd been working, and then he
just disappeared. His phone number didn't work anymore. Everything
wasn't accessible to me, and I was told I had a \$77,000 overpayment.
After I called the Congresswoman it suddenly became a \$29,000
overpayment, just instantly, and then my benefits started being
withheld, but \-- and then a couple months ago I got a notice that there
was some recalculation I think because of the earnings I had while I was
working. I got a lump sum payment, and all of a sudden now I'm back on,
and they only withheld \-- I mean, I hate to admit this, but \-- and I
don't dwell on a single case, but this is how weird the system can be.

You know, all of a sudden I'm being paid and I don't know why, and I had
taken myself off direct deposit because I wanted to save up the checks.
I was guessing when \-- I guessed wrong because I had thought that I got
another trial work period. So I continued to send in work reports,
called, write, everything I could manage to fit in besides being crazed
at work, and, you know, still they just kept paying me. So the systems
are a mess, and the information flow is slow that even for the most
diligent beneficiary this whole business about an overpayment didn't
even come up for me until two years after I had stopped working.

So anyway, these are some ideas that we came up with that we had thought
of that might help the system to, you know, maybe get some people off
the system or get them partially off the system, but support people in
work that they can do within the constraints of their illness. I know
that I think practically everyone up here has mentioned something like
this, but I guess for me and for us we feel like this trial, the work
trials, need to be \-- there needs to be a different criteria or a
different way of counting that. Because in five years somebody's illness
can have completely changed. So they could have worked two months and
the beginning of a five-year period and had a problem, but then, you
know, they could be a lot better in five years, or they could be a lot
worse in different ways. So \--

MS. MOORE: Joan, can we pick up with the improvements after lunch?

MS. WONG: Yeah. Yeah.

MS. MOORE: Okay. Let's us go ahead and break for lunch. We're going to
take 45 minutes. So we'll start at 1:10 and we'll come back at \-- say
1:45. Okay. Let's pick up at 1:45. I'm sorry \--

(Multiple conversations.)

MS. MOORE: Want to do it for 45 minutes? Okay. 2:00.

(Whereupon, a luncheon recess was taken.)

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

(2:00 p.m.)

MS. MOORE: We're going to continue with Joan Wong, but before we do
Barry has a really quick announcement.

MR. EIGEN: This is a day of coincidences and themes. During the various
breaks people have been asking questions about how you reach people in
Social Security and the state agencies locally so you can help out your
clients and the people you work with, and it turns out that you can look
up some of these people on Social Security's website. So I thought you'd
like to know about that. Just go to
[[www.socialsecurity.gov]{.underline}](http://www.socialsecurity.gov/)
and right in the middle you look for where it says \"Disability\" and
you click on that, and then on the right-hand side there's a link called
\"Professional Relations.\" You just click on that and then follow
whatever you want to follow, and there are even names of real people you
can look up within the states and I think even at the regional level,
but certainly in the states, and that will help you. It's a really good
website. I recommend it highly.

MS. WONG: How's that? Can everyone hear?

MR. : Put it up closer \-\--.

MS. WONG: Closer up?

(Adjusting equipment.)

MS. WONG: Is this better? Okay. Great. Actually we're just going to wrap
up and basically wanted to say that these are some of the suggestions
that we came up with that we thought \-- we think would help to \--
people with arthritis, people with inflammatory arthritis, to become
more independent of the system or even go off the system. I've been
talking about some of the issues that I personally experienced with work
trials, and I think we actually \-- I won't go into detail here, but I
think we do have actually a number of ideas about how the trial work
system could be made more effective so that people aren't scared to try
to work and that it would actually work as an incentive to help people
move off of disability if they are able. Aside from the labor market
issues and pressure to work long hours there, I mean, the work world is
becoming slowly more able to incorporate things like flexible work and
telecommuting and those sorts of things, and the right kind of situation
like that could really work well for somebody with disease that, you
know, makes it difficult for them to be physically on top of things
every single day but, you know, still has stuff to contribute from their
brain and from things that don't require a lot of physical exertion.

As other folks have mentioned, the healthcare coverage issue is huge for
inflammatory arthritis. The best new medical treatments that are
available now are extremely expensive. They're 1,500 to 3,000. For me I
have 10 medications or so that I'm on, and one of them I'm on a double
dose of a biologic. So it's like \$3,000 a month, so that alone is just
\-- and it's not currently even covered under Medicare. So the
healthcare issue is huge, and I realize that ties into some other things
that are happening in terms of changes with Medicare. But we believe
that there are people who could work. Who could work, part-time or maybe
even full-time, but especially folks that aren't able to work full-time
but are able to work part-time and maybe therefore not need the benefit
payments but would have to be taking jobs that doesn't provide benefits.
So having permanent healthcare would make a big difference.

The earned dollar limits, we just wonder whether there has been any
consideration about correlating those limits with the geographic
locations and also the sort of work that people are able to do. Because
the \$7- or \$800-a-month limit is just, you know, nobody could live on
that in any major urban area, and the bay area seems to be \-- is
probably worse than most in terms of what it cost to live here. So, you
know, people even exceeding that dollar limit, people may be working
and, you know, helping to support a household, but they still \-- it's
still not enough to make up for the benefit amount, the lost of benefit
amount when \-- people that are on, you know, the maximum amount. We
wondered whether it would be possible to create some sort of a part-time
work track for those with chronic diseases who just don't \-- you know,
have enough issues that prevent them from being able to work full-time,
but to build kind of an SSDI model of benefits and rules that would
apply to part-time workers so that they would be maybe partially on the
system in some way.

So in summary we just wanted to say that arthritis is a serious and
complicated disease with a high rate of disability, and I think, you
know, we've talked about examples of that and that there are degrees and
all of that. But there is a large population of people who have
longstanding inflammatory arthritis who really need your disability
program. So, you, know, thanks again for that and the current system,
but unfortunately the current system doesn't work well with the
day-to-day flare and remission and the cycle of inflammatory arthritis,
and it doesn't \-- it also doesn't seem to \-- it seems to focus on this
\-- this is back, something that we had referred to earlier. But, you
know, it doesn't seem to work well with the reality of people who have
long-term arthritis, which is often there are long-term, you know, joint
destruction and that sort of thing. But a lot of the times when the
disease, quote, unquote, \"burns out,\" there are still issues. It's
still active in terms of causing extreme fatigue, and lots of, you know,
harder to pinpoint symptoms.

In our little group when we discussed the process of getting through
disability and applying for disability folks are always counseled not to
mention that they've had depression or that they see a counselor to talk
about their issues of living with chronic disease, and that yet that
depression and, you know, a lot of the emotional and mental toll of
living with the disease and all of its complications, it really does add
to disability.

So, and just in a nutshell, our suggestions for improvement include
really much more transparent; easier to communicate with the person who
is in charge of your case, like even having caseworkers or something
like that, point of contact access; and to improve the work options
along those lines that we mentioned in more detail.

I just want to quickly give credit to some of the folks in places where
we get \-- you know, we quickly put together this information. The
Arthritis Foundation website is arthritis.org and there are local
offices, there are local chapters. All of that and phone numbers are all
accessible from the website. I'm sorry. I only know the 800 number for
the local office, but that's all on the website.

As I mentioned, I think I mentioned, this Bone and Joint Decade.
Apparently the year of 1990 to 2000 was the decade of the brain, and
that went pretty well. So whoever up there in sky at the World Health
Organization decided to make this decade, the first decade of
millennium, the decade of the bone and joint. There are a lot of
activities going on. All these different nations have signed up, but
there's \-- you know, they sponsored research, and it's really brought
together a lot of the practitioners and researchers all over the world
working on musculoskeletal issues. So they are actually a really, really
good resource, and I believe it's bjd.org \-- bjd.org?

MS. : \-\-- I think.

MS. WONG: Both may work.

MS. : But your can Google it and it will come up.

MS. WONG: Oh, we're sounding so Silicon Valley.

(Laughter.)

MS. WONG: Okay. The Centers for Disease Control has \-- you know, it has
been really good for the issues of actually living with rheumatic
diseases and chronic conditions, and the survey, the epidemiology stuff.
National Institute of Arthritis and Musculoskeletal and Skin Diseases,
NIAMSD, is where a lot of that really greater research is going on that
we need to keep going on having, but they are also looking at issues of
disability and how the treatments affect long-term disability. ACR is
the professional rheumatologist association.

These are three people that I talked to when we were putting together
this presentation. Amy Leong, she's like \-- she's our hero. She has 18
different joint replacements, and she's the Spokesperson and Director of
Strategic Relations for the Bone and Joint Decade. She happens to be
here in the bay area today, but she lives in Paris and she's just all
over the world just working with, you know, awareness of chronic disease
and inspiring people, but also, you know, working on issues like the
disability issue that we're talking about today.

Saralynn Allaire is \-- she's with \-- there's a spelling error. She's
an associate professor in Boston, Boston University's clinical
epidemiology research and training unit. But her specialty is research
on disability and preventing disability from rheumatic diseases; and
lately she's been focusing actually on strategies for keeping people
working who are having problems who might need to go on disability, but
she recently published something about how to keep people working.

Ed Yelin is here in San Francisco at the Institute for Health Policy
Studies. He has done just all kinds of stuff about disability and
arthritis, and his big point to me was the biggest \-- I mean, he's been
looking at labor market issues, too, and how that impacts disability.
But he felt that we really, really needed to stress to you how complex
the nature of the fit, finding the right fit. The people can go back to
work maybe. Some people probably can. Probably even more can if we can
maybe help people to really assess what's going to fit, the right kind
of job that's going to fit with their disability and what they're able
to do. I mean, when you're in pain and you're in a whole lot of fatigue
it is \-- and you've got, you know, things going on when you have
arthritis for a really long time you can have all kinds of complications
that are \-- I think as some folks have mentioned, that are even just
side effects of the medications.

In my case in October I was walking out my door and just did step down
the same way I've done millions of times before and ended up on the
floor of the garage with a spiral fracture of my femur, and it was 10
days in Stanford Hospital and a whole lot of titanium \-- and I had just
had a bone density scan that said I looked really good, but apparently
it just \-- the bone just imploded. So things get complicated. I guess
you need with jobs \-- I mean, that was kind of a freak thing, but I
think one has to be realistic that those freak things just keep
happening at our current rate of being able to, you know, treat people
medically, and so something about getting to a level of detail better
than just saying a job that accommodates freak things happening.

(Laughter.)

MS. WONG: Then just studies. This is just a snapshot, but Dr. Fries at
Stanford is really focusing on reduction \-- well, he's actually
focusing on long-term outcomes of rheumatic diseases and arthritis in
particular. This happened to be a long-term functional study of RA
patients from '77 to '98, and he found some reduction in the rate of
disability. I believe it's not at the level of, I don't know, scope of
this Pincus study. I think the rheumatology community still feels like
we have to live with the Pincus and Callahan study until we're able to
know more. That, you know, more than 15 percent are disabled within 10
years of diagnosis. But he did find some reduction, Fries and Krishnan,
in this study that I cited here, and that was due they said \-- this is
prior to the biologics, so they are attributing this to Methotrexate,
which was the first powerful DMARD, disease modifying drug.

Then this last person, Allaire \-- I guess I had meant for this to be
alphabetical, but anyway \-- Allaire, her name is Saralynn Allaire at
BU, and this, I think this was her article actually where she was
looking at preventing disability by finding strategies to keep people on
the job. As I'm sure you're aware if, if the workplace, if the job can
be, you know, tailored or accommodations made that's going to be a lot
easier than trying to get somebody to work who hasn't been working for
10 years or five years or whatever. So that's it. I don't have a thank
you slide.

(Laughter.)

MS. : But thank you.

(Applause.)

MS. MOORE: Do you have any questions for Joan? Questions?

MR. EIGEN: You said very quickly in passing that people are counseled
not to mention that they're having depression. Why?

MS. WONG: I won't know that \-- I mean, they're not counseled by \--
this not from Social Security, but in general \-- I mean, maybe it's
because the therapists don't want to have to fill out more forms, but
\--

(Laughter.)

MS. WONG: We hear this constantly that that will make people thing that
you're one of those whiners and that it's all in your head, or they'll
go that way and discount some of the \-\--. It's an attitude. It really
is an attitude.

MS. ELIZONDO: It'S an attitude, but it makes the focus \-- they're
afraid the focus will shift from your physical problems to the mental
problems, and so they stay away from the mental problems because the
problem is really physically and that's why you should be getting
disability.

MS. WONG: That's for people who are lucky \-- you know, not lucky
enough, but whatever, who happen to have those hard diagnostic features
to their disease. So I guess to some extent it's, you know, don't, that
this will water down your application. Just, you know, give them the
stuff that they like, which is, you know, X number of joints inflamed
and, you know, X number of joint replacements. That that's a lot easier,
and just stay away from the other stuff, but \-- it would be nice, I
think it would be \-- nice is maybe not the word, but it's more
realistic. You get a better picture when you know that there's \-- when
we're able to acknowledge that there are other things besides just
broken joints or \--

MS. ELIZONDO: Right. Well, and depression is just \-- I need your \-\--.
I don't know if that works. Depression is just \-- it does? Depression
is just \-- oh, no. Now it doesn't.

(Adjusting equipment.)

MS. ELIZONDO: Depression is just one of the factors. I mean, there's
sleep dysfunction which happens from pain, and then there's the pain
itself, and then there's the medication cycle, and if for one reason or
another you miss your medications for a day you can be thrown off for
two weeks. So, I mean, it's just such a careful balance. So depression
is just one of the factors. I mean, if it were your disease and
depression, then sure. But, I mean, the thing, the fact is it's your
disease and then all these other factors on top of it, and they just
cumulate, and at some point you just kind of break down, and that's \--
you've done the best you can do, and you have to figure out where you're
going to go from there and how you're going to manage your disease
because your disease as taken over. So the goal of course is to manage
your disease and then at some point say, \"Okay. I've got some things
under control. I want to go do something and I want to go work.\" And
then you run into this other cycle of \"How do I start to do that?\"
because there are all these weird limitations. For me if I try and go
work it's not going to be really that good. You know, I might flare
myself up if I try to take a full-time job. I might lose my insurance. I
might go to a job that I don't have insurance for the first three months
or something. I might try and take a part-time job, but I'm making over
the maximum, but it's not enough to \-- and I lose my Medicare. So all
of those factors are \-- they really just they start to stir up this
whole fear factor of, you know, \"Well, I don't want to go to work.\"

MS. JOHNSON: Meghan, mention the NPR study.

MS. ELIZONDO: Oh. So I don't know how many of you heard that there is an
NPR radio show that Robert Gasner pointed out to me about disability in
America and that only 0.14 percent of people on Social Security
disability successfully transition back to work, and that number is so
small and \-- you know, there are people like us who are young and we
want to work, and so how do we do that? You know, we don't want that
number to be so small.

MS. : And we don't think it should have to be.

MS. ELIZONDO: Yeah. I mean, because working is part of one's
self-esteem, so in some ways that part of solving some of your disease,
is to like build some self-esteem that's not your disease. You know?
Because at some point when you're not working and you're just going to
doctors all the time you're like, \"Oh. This is who I am. I'm a diseased
person who goes to these doctors.\" So then you want to do something
outside of that.

MS. WONG: Well, I think where you started on that point about
depression, often with people who have chronic disease depression is not
just \-- it has certain flavors and certain triggers, and it's things
like not being able to sleep because of being in pain. In my case I \--
it was I've had a really bad year-and-a-half with insurance problems,
and so and then we \-- last year we finally got on what was a pretty
good plan and \-- but they wouldn't approve, but I was going through my
march through the biologics. So I'm now on the last one that I can be on
before going to something experimental, and it actually seemed to work
pretty well, but I needed a double dose and it didn't \-- that was
really clear immediately starting it, and it didn't get approved until
the end of November. Then January 1^st^ my husband's employer changed.
We stayed on the same plan, but they changed the whole university to a
single prescription plan, and so we had \-- after my poor doctor, you
know, going from August to November she was fighting it out for me to
get this double dose, and then in January we found out that we had to do
it all over again with a different prescription company. So I had lots
of gaps in the medication over the end of the summer and then another
big gap after Christmas, and so that \-- and that stuff throws \-- it
just throws your system all out of wack. I guess that hit or miss. It
still is very much of a hit or miss thing, but when you find something
that works there's all kinds of barriers to getting it and then, you
know, you have to deal with trying to keep it working, keep that balance
working.

MS. ELIZONDO: And sometimes they'll just fail for no reason. So, I mean,
that's one fear at least that I sometimes have, because just doing daily
things in my \-- I'm on disability so I'm not working, but I still try
and keep really active, but there will just come this time where I'm
taking all my medications, and I'm doing everything I've been doing; and
something doesn't work, and I don't get enough sleep. Then I don't get
enough sleep the next night, and then I'm in pain and then all my
medications don't seem to work. So, I mean, that's kind of
unpredictability that you're dealing with with a disease, and that makes
it really hard to say, \"Oh, I can go back to work.\" Because your
ability to like be in the same place and be healthy over days at a time,
and show up to work and, you know, not look like a flak e\-- all these
things are really part. You know, they really they look like personality
problems and they're physical, because you're just blanketed in pain and
you're blanketed in fatigue, and your brain is just \-- but, you know,
your brain is in a fog.

MS. WONG: So anyway, somehow we go there from \"Why don't you mention
disability,\" but \--

MS. ELIZONDO: Yeah. \"Why don't we mention depression?\"

MS. WONG: Or depression. Yeah. But it would be wonderful if there was
some way to build in realistic questions that elicit. Like Stanford
uses, and I think it's a pretty common use throughout the rheumatology
world, that use a health \-- something like \-- it's a health assessment
questionnaire, but it's for assessing where people are, and there are
\-- for rheumatology there are lots of questions about emotional state.
You know, \"Do you see people? Do you avoid contact?\" I don't know.
\"Do you get out? Do you socialize at all?\" You know, \"Do you feel
happy today?\" or that kind of stuff, but that's along with asking the
clinical questions about what hurts. We'd love another question that we
could answer quickly, but \--.

MS. ELIZONDO: Do we have time for more question? Are we done?

MS. WONG: That'S it, right? Thank you.

MS. ELIZONDO: Thank you.

(Applause.)

MS. : We're transitioning. Okay.

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

**Moderated by Susan Lauritzen, MD**

DR. LAURITZEN: My name is Susan Lauritzen, and I introduced myself
yesterday, but we've had a turnover of the advocates today. So I'm a
pediatrician and a medical consultant from the regional office in San
Francisco, and I'm here to hear all the speakers, which I've really
enjoyed both the days. I thought I knew a lot about some of these
conditions, and I feel like I've really expanded my awareness and really
personally appreciate people talking about their own symptoms. I think
has really helped me also as someone reviewing cases to think about
we're always trying to match up the data with remembering that we're
talking about real people and their specific conditions. So I would like
to thank people for sharing the things that they have today.

(Applause.)

DR. LAURITZEN: So this last session is designed to be sort of a
rambunctious discussion. It's at the end of the week and it's at the end
of the day, so we'll see how rambunctious we can make it. But there is a
list of questions that you've probably already seen, but they were on
the \-- on the next page of the agenda, and Glenn Peters has already
started the ball rolling here by \-- very nicely when he started going
through these questions. I thought. \"No, wait, wait, wait. That could
be my talk this afternoon.\"

So what we're going to do, we have between now and 3:00 and then we'll
take a break again at 3:00, and then we have more time. I don't know
that we even \-- we can stop early if we're through, but we have until
4:00, 4:15, and then I think Sue and Barry are going to wrap up and
finish this off for the day. But I'm going to do is just go through the
questions, and this is really the time for the advocates as well as for
people other than Social Security to really have their time to talk. So
I invite you again to say whatever you like, as much as you like, and if
we run out of steam on these questions I wrote down a few other things
just that sort of heard and themes going through the day that we can
also talk about.

So do people have this attachment, this? The seven questions, and I'll
just read. We'll start with number one, which reads \"Are there factors
that would help us to evaluate disability claims that we could add to or
change in our immune systems?\" I think Barry wrote these questions, so
I may ask him to elucidate \-\--.

MR. EIGEN: No, not me.

DR. LAURITZEN: Who is responsible for this question? Is there someone
here that you want to say precisely what you were looking for with that?
We've got sort of the policy people at the table here. Somebody probably
wrote this question and they've got their pens poised, but I think what
we've already heard \-- so factors that would help us evaluate
disability claims that we could add to or change in our immune system
listings. So sort of a generic question.

MR. EIGEN: And I would say beyond what we've already heard.

DR. LAURITZEN: Beyond what we've already talked about, and I would say
what I've heard that we've already talked about for this question is
thinking about the introduction and preamble and that people have talked
about expanding that and putting in there the rulings into that,
referencing the rulings to the regulations, putting more information
into that. I, just to be a devil's advocate on the other side of that
being someone who trains on some of these listings, when I go out to
train people say there, \"I can't read through that information. You
know, there's too much there. It's hard to get through all of that.\" So
I already mentioned to Barry I don't if there is a way of, you know, we
could maybe develop training outlines, because it's nice if you are
interested in \-- you know, if you for some reason have to get all that
information. If you're trying to have easy access in and out of the
listing I would say too much front loading also gets people scared off.
So I'll just put in my two cents on that, but do people want to add
other things about \-- it's a very general question. Are there things
that we can add to the immune listings? Oh, good. Somebody's in the
back.

MR. LEACH: Hi. Bill Leach with the Access Program again. First of all I
was very intrigued about Barry's suggestion about taking the criteria
that are set forth in 14.08N to talk about some of these constitutional
types of problems and sort of the multi-focal problems. We have more
body systems involved, and there is a potential improvement there,
because all you really have to show for that listing is marked
impairment in one of the three areas that's outlined.

That gets me to the my specific comments about the listings that I deal
with most frequently. I deal primarily with primary immune deficiency in
the context of immune deficiencies. So most of my comments are going to
be directed towards the relevant listings of 14.07 and 114.07. In that
listing for both children and adults it talks about documented recurrent
severe infections and gives a frequency after that. There's no
definition in that listing or anywhere in the introductory materials
about what we mean by severe, and one of the problems that I've run into
repeatedly with adjudicators is everybody has their own notion of what
we mean by severe. The difficult is that people with impaired immune
systems any infection is pretty much severe, and I've had situations
before where the doctor who testified at the hearing would say, \"Well,
it's bronchitis. Bronchitis is not a severe infection.\" And a response
is, \"Doctor, for me and you it's not a severe infection. For somebody
who has no immune system it's very severe because it lasts a long
time.\"

One of the suggestions that I was going to have to either define
severity or start looking at giving some guidelines for severity. The
frequency of the infections themselves is a good guideline in and of
itself, but so is the duration of the infections. This is one of the
hallmarks of people who have impaired immune systems. While I may be
over bronchitis within a day or two, people with immune deficiencies may
have a couple of weeks to get over it. So I think one of the things that
could be done to improve that listing would be to make reference to the
duration as a possible guideline for getting at this whole issue of what
is a severe infection. It's one of the ones that turns out to be a
stumbling block repeatedly in my experience in doing these types of
cases. The other good thing about it is that it's a lot easier to
document. You can take the document, the duration of the infection, by
how long the person is taking antibiotics.

The other thing I would suggest to you is a possible modification of
that particular listing. It talks about three severe infections,
documented recurrent severe infections within a five-month period. A
five-month period to look back isn't necessarily going to work all the
time because there can be seasonal variations for these folks. Some
times of the year are a lot worse than others. What I would suggest is
you maybe would want to go to a 12-month look back rather than a
five-month because then you'll get a more longitudinal basis for how the
infection frequency and duration varies over time. It would give you a
better global picture. Obviously that may mean bumping up the number,
but for most of these folks with severe infections if go to five or six
in a year, you know, you're still going to be getting a pretty good
picture of the problems that they're having. I want reserve my other
comments for other questions.

DR. LAURITZEN: Okay.

MR. LEACH: But for that particular question \--

DR. LAURITZEN: Spread them out. Great.

MR. LEACH: For that particular listing those were the two issues that
sort of came out to me. I do want to say that I really like the idea of
possibly borrowing some of the concepts from 14.08N for the entire
section, not just the primary immune, but for all these folks who deal
with fatigue, problems with concentration, problems with limited social
abilities, because they affect everybody. The autoimmunes, the primary
immunes, it's a global story for all of those. Thanks.

DR. LAURITZEN: Right. Yes. Thank you. I think Barry probably has
something to say about that. It does seem that \--

MR. EIGEN: You're supposed to laugh when she says that.

(Laughter.)

DR. LAURITZEN: That's going to be line here I guess. It does seem like
the biggest issue that I'm hearing today is the whole episodic stuff,
and there's a model for that in the childhood functional equivalents
built into, you know, talking about certain, you know, number of
infections or hospitalizations over a year. I'm wondering if you can
borrow some of that \-\--.

MR. EIGEN: Right. In fact I was going to say something just like that.
We have various rules in other body systems that you meet the listing if
you have episodes that endure for two weeks, that occur for a certain
number of times, or they last shorter than two weeks but they occur more
frequently, or they last longer than two weeks but the occur less
frequently. The reason we use such vague terminology is as you can
imagine, remember what I said at the beginning, put yourself in our
shoes. We're trying to write a rule that every single person who comes
in the door who has what it says in the rule will be found disabled, no
questions asked. So I guess my question back to you is would a rule like
the one I just described do that? Is two weeks too long for \-- two
weeks, three times in whatever period we choose too long? And suppose we
provide these alternatives for more frequent but less lengthy episodes?

DR. LAURITZEN: Do people know what he's referring to?

MR. LEACH: Yeah. I'm familiar with some of the listings you're referring
to, and certain any guideline is preferable to the situation that we
have now where it's a sort of open-ended kind of thing. You know, I'll
welcome any step in the right direction here. Anything that gets a
little bit close to making it easier for these adjudicators to identify.
So, yes, that is a possible way to go. I would like to see some
alternatives though, including some of this alternative language like
even if you don't meet the frequency and duration of the infections or
hospitalizations we can still look at functional limitations à la
14.08N. So I think that that is a possible way to go also, again just to
give them the guidance. Particularly guidance that they're familiar
with, because again when you're borrowing from other listings they can
say, \"Okay. I've seen that before in the pulmonary listings so I
understand that.\" So, yes, I think that could be very helpful.

MS. VOGEL: And, Barry, I mean, in our recommendations it gives you
listings of the frequency and typical infections that the patients have.

MR. EIGEN: I saw that, and in fact I should also say I heard loud and
clear in your presentation this morning that any infection we could
probably consider to be a severe infection, and we might not have to get
into \-- I mean, if we do it, especially if we do it in terms of
duration, we might not have to deal with what constitutes a severe
infection. It strikes me as an easier way to write a rule anyway. So I
thought that was a good idea, too.

DR. LAURITZEN: On a detail of that, it sounded when you were talking
about the area that shows \-- in the HIV that shows a marked level, but
then that was following a question about the Lupus where they're talking
about two body systems, one at least moderate. So those sounded like
different levels of severity to me. I mean, I heard that when you said
that.

MR. EIGEN: Oh. Yes, I didn't think of that, but that's a good one. Yes,
that's a good question. I mean, I have to tell you, I have no problem
saying this. I don't understand. That's why I brought it up a couple of
times. I don't understand what the rules means by a moderate impact on
an organ. So, I mean, in a sense it's a apples and oranges. In the one
case we're talking about a purely functional. I mean functional like
work functional, and in another case we're talking about how an organ
functions, which I guess is \-- I mean, I should ask you this. Is that
meaningful to a physician? Are those words meaningful to a physician;
and, even if they're meaningful to you, can we be confident that some
other physician in Utah or some place is reading those words the same
way you are? I don't have an answer.

DR. LAURITZEN: Do we have any physicians in the audience who would like
to respond to that? I don't know that thinking about \-- to me thinking
about a meaning or a marked organ system I wouldn't even think of it
like that. It makes me immediately think about the function of the
person, and in the childhood cases I think of extreme things being
really horrible, marked being bad, less than marked being, you know, not
terrible but still something. You know, I sort of think in those kinds
of terms. But obviously what we're trying to do in the disability system
is make things that are very subjective into some kind of objective form
so that we can be consistent, and this is obviously the challenge of it.

DR. EIGEN: Right.

DR. LAURITZEN: Does anybody else want to comment on, a physician or
anyone, about \-- what's the question? If a moderate organ system means
something?

MS. MINNIGERODE: Well, moderate is an okay term. I mean, I don't think
you're going to be able to write a listing that tells us exactly what we
need to know.

DR. LAURITZEN: Say who you are again so it will go on the record.

MS. MINNIGERODE: Lana Minnigerode from the DDS. I don't think you're
going to be able to write a listing that tells us as physicians exactly
what moderate is, especially in these diseases processes with their
variability. So I think that's as good as you can do, Barry. I mean,
it's hard. It's so hard.

The other thing I wanted to point out was that in both the \-- all the
HIV and the congenital immune disorders is that the people are being
hospitalized less and less for these diseases for two reasons. One,
managed care, they're sending an IV nurse out three times a day to do
home IV antibiotics rather than put them in the hospital because it's
cheaper; and, two, because there's bad bugs in hospitals, folks, and you
don't want to go to a hospital. You don't want to die in a hospital, and
so, you know \-- so the listings have to reflect that level of severity,
but it's no longer hospitalizations. It's IV, you know, home
antibiotics. They need to get home healthcare records.

MS. WEATHERFORD: Hi. It's my understanding that this session is to give
you information. I'm Dale Weatherford, and I'm the mother of a CVID,
which is common variable hypogamma-globulinaemia, patient. She's 19 and
doing very well. By very well I mean that on a regular day she feels
like you do when you've got the flu. She's got gastroenteritis at all
times. She has usually sinusitis at all times, and yet she's in college.
She gets her IVs in the dorm. She has a home healthcare nurse that comes
trotting in and usually calls her and asks whether she wants hamburger
or pizza. So she's got her well trained, and she's doing really, really
well.

I wanted to back up to your statement about recurring illness or how
severe or \-\--. It seems to me that all of our children \-- and I work
on a website with other parents. So I'm not just talking just about
Katie. I'm talking about 150 different children. It seems like what we
see is two different patterns. One is severe infections where you get
very unusual or very \-- how do I call it \-- severe infections. You
would call that severe. Anyone would call it severe. Severe pneumonia,
encephalitis, things that are just gross and hideous to see in a child.
But there's another side of it, and this is the tracks that my daughter
took, and that's called just one infection after the other. The way we
parents refer to it is piggybacking, because before she can clear the
ear infection she's got a gastro infection, and before she can clear the
gastro she's got this sinus infection, and before she can clear \--
which means that her system is continually being pulled down, and they
can only take this for long before it does become a severe infection. So
it may not be unusual infections. It may be the things that a
pediatrician sees on an everyday basis. It can be just one virus after
another because the immune system does not build protective antibodies.
See, if you catch a cold you will not catch that same cold next week,
but Katie just can keep it. We can keep it in our family all winter,
just one right after another. When you talk about clearing infections,
David and I will clear a stomach bug in what, three days? Katie, three
weeks minimum. Okay? So that's sort of the recurrent, the constancy of
the illness. Okay?

DR. LAURITZEN: Great. Thank you. That's again really helpful to hear
specific things about \-- yes. Great.

MS. JOHNSON: Can I say \-\-- about it?

DR. LAURITZEN: Yes.

MS. JOHNSON: It's the same for \-- yes. Monica Johnson with the
Arthritis Foundation. It's the same for the inflammatory arthritis. I
think it's probably the same for most autoimmune disorders, especially
if you're taking immunosuppressive drugs. I cannot get rid of
bronchitis. I have to take session after session of antibiotic
treatments just to clear out a normal \-- what would be a normal cold to
somebody. When I was working I used to get bronchitis almost six times
or seven times a year. So it's pretty severe.

DR. LAURITZEN: Other comments? All right. I would think also, too, when
you're saying what's moderate and what's not you want them a little
vague. Right? Because when you may have this \-- this is the art of the
challenge I'm sure for you, is that you don't want it so confined. You
know, there has to be room for everybody's individual sort of summary of
their \-\--.

MR. EIGEN: Right. I mean, really what I've been trying to get at is
whether other people in the room have discomfort with the listing, and
it sounds like no. The answer is no \-\--.

DR. LAURITZEN: Yes. Is there a consensus on that? It does sound like
we've got the language in the listing and it's actually already
workable.

DR. MINNIGERODE: The moderate I'm not uncomfortable with. The one thing
that Mr. Peters said on the Lupus listing, and it's true with all the
autoimmune disorder listings, is that part B is made almost worthless to
us unless we spend long time rationalizing equals because of the weight
loss. There is nobody with a significant autoimmune disease that is not
on a considerable dose of prednisone, and so the weight loss is \-\--.
That being part of the requirement makes \-- well, my MCs, when I told
them I was coming to this conference I pulled my MCs in my office, and
they said this is the most worthless listing in the book, in the blue
book.

MR. EIGEN: Yes. We got the same comment, by the way, for irritable bowel
disease.

DR. MINNIGERODE: Right.

MR. EIGEN: Which we have in our digestive listings. I know people
recommended \-- we got the exact same comment from people.

DR. MINNIGERODE: Right. So you're not going to have weight loss if you
get significant disease because the rheumatologist or somebody is going
to have you on prednisone.

MR. EIGEN: Right.

MS. : Which was your point of making that an \"or\" rather than an
\"and\".

MR. : Right.

MR. HEITZ: Michael Heitz. I'm an adjudicator with hearings and appeals
from Denver, Colorado, and I think there's been a trend within the
agency to have more adjudications by non-medical practitioners. For a
non-medical practitioner when I see the term moderate and being sort of
an anal attentive attorney I'm thinking moderate is not that precise if
we're having non-medical people make a determination at step three and
the goal is to make these so that we can have consistency at all levels
of adjudication. So that if an attorney comes in and gets the records if
they have the data they should be 95 percent certain that no matter who
they bring it to is going to reach the same conclusion. I think when you
have terms like moderate that aren't defined it's problematic. If you
look at the 14.08N there you have marked, but as we talked about earlier
marked is a term we're somewhat familiar with from the mental listings.
You \-\-- the activities of daily living, concentration, persistence in
pace. Terms of art we're familiar with the mental listings, but moderate
\-- I mean, Barry, you and I have had discussions on the 4734, the
mental RFC form. It's defined there. It's not defined anywhere else, and
if you just say it's less than marked and more than not severe you still
have a gap that's real wide to drive it through, and that's where you
get the subjectivity of interpretation. Then at one level they're afraid
to do a meets or an equals because it'll be returned by quality
assurance. The more precision you can add, the more consistency.

MR. EIGEN: Right, but let me ask you this. Let me phrase the question
then. Does it matter? I mean, if you're a person who has one of these
illnesses and you have involvement in two or more body systems, and you
have significant documented constitutional symptoms and signs of the
things that we list, maybe it doesn't matter if moderate is \-\-- range.
Maybe it doesn't matter if you're at the low end or the high end. I
don't know.

MR. HEITZ: Well, \-\-- going to do it \-\-- allude back to the 1205
where it's the mental retardation 70 or less than and another
significant impairment, which is defined as severe, which is defined as
more than a minimal affect. I can live with that. But I'd like to know
that the reviewing officials are going to be dealing with that same
definition. I think that's the problem that's been chronic in our
agency. We're trying to get one book and one view and consistent \-\--.

MR. EIGEN: Yes, I think it's been episodic, but \--

(Laughter.)

MS. : And hope they transmit \-\--, right?

MS. SCHOENBERG: They tell us in law school that reasonable minds can
differ, so I'm going to differ with Judge Heitz and say that I don't
have a problem with moderate because to me in a listing \-- the context
of the listings it reflects that you're not looking for an end-stage
organ damage like you are \-- that the organs don't have to be affected
at a listing-level severity. They just have to be affected more than
\-\--.

MR. : We could just make it say to some level.

MR. GERRY: I would just say that I'm not sure that many reasonable minds
end up in law schools, but anyway \--

(Laughter.)

MR. GERRY: So I'd have to agree with Judge Heitz. Actually, see, I'm a
recovering lawyer, but \--

(Laughter.)

MR. GERRY: No, I think it is a problem, because I think there \-- it may
not be a problem everywhere, but it's an invitation to a problem. Let's
put it that way.

DR. LAURITZEN: To use the term \"moderate\". That's not defined.

MR. GERRY: Right. Now the more interesting question is what do you do
instead. I mean, what do you replace it with, because I think there's no
question that it leads to ambiguity and then that can create
inconsistency. The real question would be is there something you can
substitute for it that would get you \-- part of this is over-inclusive
and under-inclusive point.

That was more yesterday, but you mentioned it this morning, but \-- and
this is the Social Security Administration, and to some extent I think a
national obsession. The idea that we shall not pay anyone no matter how
marginally close to eligible they are if there's one possible fraction
of a point different between where they are and what technically
eligible is. The real question is how much time, trouble, and expense
and pain are you going to go to to be sure that that happens. If you go
to the idea that we can tolerate a little over-inclusion, that is it
wouldn't be so bad \-- not to pay someone who is involved in any fraud,
but to pay someone who is right on the margins of whatever \-- assuming
for a minute that we have a really precise idea of exactly where that
line is. Then you might be able to tolerate using something other
moderate, recognizing that, okay, in certain circumstances what you
might really end up doing is making allowances you wouldn't make for
another six months when the facts have changed.

MR. EIGEN: Right. That's kind of like what we said yesterday.

MR. GERRY: Yes. I know. I think that's right, and I think \-- my sense
is that that's probably the right direction to go when you get a term
like this, but I'd agree with Michael that \-- I think we have to go
back systematically and look at those decisions and, you know, even if
there are reasonable minds in law schools I'm not sure how many of them
get into our General Counsel's Office.

So it would be useful to go back and look at this and \--

(Laughter.)

MS. : Yeah. And your name for the tape was?

(Laughter.)

MR. GERRY: Oh, I think it's fairly well known I think that, but \-- I
think that's part of what we're doing here. I mean, I think your point
earlier, which is really one of the more powerful points, which is when
talk about real people and you talk about real situations, and what
you're really doing is talking about minor \-- slight, minor differences
in areas that are very hard to assess anyway. Then you recognize over
time that distinction is probably going to be lost and you're doing
this, making this decision at a point in time. I think what we have to
begin to ask running a program that now costs, the disability program by
itself, probably slightly more than \$6.5-billion a year to run, is how
much are you willing to spend to keep somebody who is going be eligible
two or three months later from being eligible now; and I personally
don't see a point in spending very much.

MS. : Especially when we've heard what it costs on the other side today
I think.

MS. ELIZONDO: Hi. Meghan Elizondo with the Arthritis Foundation. So the
word moderate, I think the problem with the word moderate is to a
medical person moderate means something in terms of mild, moderate, and
severe, and they've like \-- they have trained. You, know, they've been
trained to know what those scales mean, and then it sounds like for on
the administrative law side it could mean a wide variety of things. So
moderate, I guess you have to decide, you know, what \-- it's like using
technical jargon in everyday language, and it's like a different word.
You know? And so you have to define the language I think. Because we've
had experiences where, you know, there's two of us. We applied. We had
really similar symptoms, similar documentation. You know, all these
similarities, and one got approved and one got denied, and then you go
\-- the other person goes to the end of the rounds and he sees an
administrative law judge. Oh, and now he's been approved. So that's why
I think the language does become a barrier to something that's otherwise
a simple \-- it could be a simpler thing than trying to go through all
those rounds, and that's an expensive thing to do is to keep
administratively determining that.

DR. LAURITZEN: I sort of like the idea. Should we hear again what people
think if you made it like the 1205D, that where you have the extra
impairment that has to \-- I mean, is severe in the same sort of range
as moderate so that we could \--

MR. EIGEN: It'S apples and oranges though. It's apples and oranges. The
severe in 1205D is a measurement of functioning, like work functioning.
Here we're talking about a moderate impairment of an organ, and that's
the thing that I just don't \-- I can't wrap my mind around that.

DR. LAURITZEN: I think take out \-\--.

MS. ELIZONDO: Do people \-\-- medical moderate?

MR. EIGEN: That's what's it says. Yes, and I don't know what it means,
but that's what it says. Yes.

MR. HEITZ: Barry, Michael Heitz again. Deferring to the doctors, but if
you were just to take off that last sentence. It almost seems to a lay
person if you've got the diagnosis established by using the diagnostic
tools and then you have demonstrable involvement of two body systems,
that sounds pretty darn \-\--.

MR. EIGEN: Well, right. Well, that's what I was saying, maybe it doesn't
matter.

MR. HEITZ: Just take off that last sentence.

MR. EIGEN: Could be. Could be.

MR. : Just take the whole sentence out. What does the sentence mean
anyhow?

MR. EIGEN: Right. I mean, it already says you have to have involvement
of two organs anyway. Right.

DR. LAURITZEN: Anybody else? Well, that was good. I thought that was
going to be a no-answer question.

(Laughter.)

MR. : Well, we fooled you there, didn't we?

DR. LAURITZEN: All right. Well, all roads lead to something here. I'll
just go to number two. All right. Somebody else? Oh, our break. Okay. Is
it 3:00? So it's a little after 3:00 so be back in 15 minutes, 3:15,
3:20.

(Whereupon, a short break was taken.)

DR. LAURITZEN: All right. We're going to reconvene here. Okay. I have
two quick procedural points, two quick sort of procedural points. One is
that \-- okay. We're going to have to whistle again, except then you'll
find out it wasn't me. I've always wanted to learn to how to whistle
like that. Two points. One is no one is going to be allowed to leave the
room without handing in their questionnaire, and we're not sure what the
\-- please fill out your questionnaire because it seems that this is a
great invention not only to the conference that people that are
listening, and this gentleman over here is recording everything and the
names. People here want the feedback, and so let's give it to them. So
please fill out your questionnaire and turn it in to \-- I guess there's
a box or something.

MR. : Outside.

DR. LAURITZEN: Outside. Okay. And the second point is that if you have
something to say raise your hand high so I can see where you are so we
can get the microphone to you without making our people run all around
the room. So all right. So that was great. That was question number one.

(Laughter.)

DR. LAURITZEN: I feel like I can stop already. I think a lot of things
are sort of winding. The answers sort of wind their way in and out of
the various questions, but just to stick in a somewhat orderly process
I'll just read question number two. \"Our immune system listings address
the differences between the effects immune system disorders have on
adults and children. Do we address them sufficiently? Do we need to
change how we address these differences in any way?\" Ooh, a hand shoots
up right at the front there. Great.

MS. VOGEL: Well, I mentioned this in my presentation, but for children
you have the listing of congenital immune deficiencies, and either it
should be taken out or there should be some acknowledgment that there's
a delayed onset of clinical symptoms. So I don't know which is the
easier way to do it, either to make it equal to the adult or make it \--
because many of them, it may be delayed for decades in some of the
patients.

MR. EIGEN: Would you say more about what you mean by that? I'm looking
at it now, so \--.

MS. VOGEL: So the comment is taking out the \-- either taking out the
congenital part of qualifying it somehow.

MS. : And why does that make a difference?

MS. VOGEL: Because some of our patients are not getting listed as
disabled because their not showing \-- they're not symptomatic
immediately they're not being considered. It's they're saying that it's
not congenital. I mean, they're saying that you have to have a
congenital disorder, and it has to \--

MS. : It has to show that it started way back.

MS. VOGEL : Exactly. Exactly. And for primary immune deficiency disorder
sometimes it doesn't show for decades.

MS. : Okay. All right.

MR. EIGEN: So why do they have different names? Why do the adult and
child have different names? Is there a medical reason?

MS. : What's the question?

DR. LAURITZEN: The question is why do \-- I'm going to \--

MR. EIGEN: I'm just asking. I wonder why the \-- I don't actually know
the answer to this. Why do the adult \-- it's 14.07 and 114.07 if you
want to look them up. The adult one is called immunoglobulin deficiency
syndromes or deficiencies of cell-mediated immunity except for HIV.
Could the child have the same name?

MS. VOGEL: Yes. Definitely.

MR. EIGEN: Well, that's an easy fix then.

MS. VOGEL: Get rid of it and make it equal.

MS. : Oh, wow. That was good. Progress.

(Laughter.)

DR. LAURITZEN: Great. Thank you. Any other questions about our comments
about the child? I'm always interested in this being a pediatrician
doing the DC claims. It seems like the children's stuff is usually a
little easier in this regard because we have the fallback of the
functional equivalents. So I read through them and nothing stood out
glaringly to me, very quickly reading them. Did other people? Are other
people looking at the childhood listings? Do we have any DC people in
here or policy people that are specific for childhood stuff? Do you guys
divide it up any?

MR. : We don't.

DR. LAURITZEN: Okay. Any other comments about the childhood? Any
comments from our mother that stands out? Okay. All right. If things
come up we'll come back.

Okay. Question number three, \"What are the variations in favorable and
unfavorable responses to treatment?\" And I read that question and I
thought what is

\-- what are you trying to ask?

MR. EIGEN: Actually I think we covered it. That was \-- I don't know if
it was the main theme of today, but it was certainly way up there. It
was all that stuff about can you really get better, the effects of the
treatment, the effects of having to take the treatment all the time and
all that stuff. So that's what that's about, so I think we covered it.

DR. LAURITZEN: Okay. So it sounds like the variations are huge and
unpredictable.

MR. EIGEN: It's not \-\--.

DR. LAURITZEN: And the gentleman in the back?

MR. LEACH: Hi. Bill Leach with the Access Program again. I just had one
quick point. I think it's been gone over and over and over again today
about the effects of treatment, but there's one particular area that
comes up a lot with immune deficiencies, and that is the situation where
they are using constant courses of antibiotics. Frequently in order to
avoid drug resistance they're having to rotate antibiotics. So what's
happening is that your getting variations in response because they may
do better with one antibiotic than another, but they have to go to the
less effective one periodically because if they don't they become
resistant to the one that helps them. So that's another sort of issue
that goes into the variations of responses. The nature of immune
deficiencies in of themselves is such that it dictates that they
sometimes have to use less effective medications simply because that's
the only way to be avoid becoming resistant to the one that actually
helps them the most. I'm sure that got addressed in the HIV section, but
it equally applies to the primary immune and autoimmune folks as well.

DR. LAURITZEN: Yes. This is a comment right up my alley because I work
in my other job at the San Francisco General in the county urgent care
clinic and we see hundreds of patients a day with these issues of, you
know, just all of the different antibiotics. Made worse also by
insurance companies now are not necessarily covering. We now get calls
from the clerk in the pharmacy saying \-- asking for the doctor and
\"Have you considered using,\" such and such. So there's also other
political insurance issues of what medications are being covered. You
know, if they won't we have to fill out then 10 forms in order to get
the antibiotic that you know is going to work for the person. So big
issues of, you know, drug resistance. It's a huge topic and especially
in pediatric cases \-\--. Any other comments? We are going to start off
with our big boom here and then fizzle out \-\--.

(Laughter.)

MR. : Go out with a whimper.

DR. LAURITZEN: Number four, \"Are there functional requirements we
should add to our listings?\" I wrote down Lupus fog from your talk, and
I also wrote down as far as the whole functional assessment a lot of
people brought up questionnaires, forms, different things that needed to
be used and how do we make scales. I personally would be interested to
hear from some of the arthritis people about how to actually \-- a lot
of comments on fatigue is, you know, not their usual fatigue, and if you
all have any ideas about rating fatigue.

MS. ELIZONDO: Well, one of the things that we had talked about was that
the ACR, the American College of Rheumatology, has scales already, and
that it would make sense to use those scales since that's what the
doctors are familiar with. I think that in some of those scales they
could fatigue and they count pain and they count \-- they have, but then
they have variations on the number of joints involved or the severity of
swelling and pain the joint, how many main joints, how many peripheral
joint. It's like the ARC 10 and the ARC 20, but they've got scales that
they've worked on to rate severities of arthritis of various \-- I'm not
sure how many forms. I think maybe it would include psoriatic,
rheumatoid, and OA, but I'm not sure how \-- if they apply it things
like Lupus and Scleroderma and \-\--.

DR. LAURITZEN: Right. It does seem like maybe we don't have to
constantly recreate the wheel, but we can borrow from \--

MS. ELIZONDO: Yeah, and we want to use something that the doctors are
familiar with, because anything you do extra to ask the doctors to do is
going to be a big drain on them and they may not complete it.

DR. LAURITZEN: I want to say something about that before the day is over
just from the other side of the track. In the back, did you have a \--?

MS. DOAK: Bonnie Doak with the Immune Deficiency Foundation again. I
find it very subjective for our community to rate fatigue. I'm a patient
now. I came here from Santa Cruz today, but I already cleared my
schedule for tomorrow to not leave the house. So look well, et cetera,
but tomorrow I will be paying the price; so I don't know how you would
\-- I'm interested in seeing those, the graphs or the schedule that she
said they use, because I don't know how that could be rated.

MR. EIGEN: One of the things that came up yesterday was, does this mean
anything to anybody here, quality of life scales that the HIV guys were
talking about? Some of them were validated sort of scoring instruments.

MR. PETERS: Health quality of life. They're using that in Lupus now. I'm
sorry. I just said the Health quality of life scales, they're using that
in Lupus now in a lot of clinical trials to rate, you know, how they
feel and so forth.

MS. : Thank you.

DR. LAURITZEN: I think there's always the question about how you get
functional information, and I'll just share a tip from one of our \-- in
region nine, one from the Hawaii DDS office who are well known within
our region for their ability to really be particular in how they develop
and rationalize their cases. So I'm going to compliment them here, and
Yolanda is nodding her head. This was an idea that they came up with
that I thought was a nice one in terms of trying to initially if you
were going back to the treating physician to try to get functional
information. That usually people are talking about sending a
questionnaire, and then there's a big debate about how long should the
questionnaire be, and long enough to get the information, shorter enough
for somebody to be willing to fill it out. What they did is they made a
list of functional questions about various things and put it on a
database somehow with the computer so that then on any given case they
can go to their sample questions and pick, oh, number 1, number 7,
number 14 applies to this case. So then instead of sending, you know, a
treating physician a four-page questionnaire they're sending them the
three questions that they felt like they really needed for the
information for that particular case. I thought that was a good idea. So
sometimes just sharing what works I think between various offices, you
know, I think there's no doubt lot of people have tried to figure this
out because this is sort of the nuts and bolts. Right?

Somebody back at my table back here, and I can't remember who, was going
to may say something about the difficult of getting functional
information at the \-- was that at the field office level that you were
talking about, or trying to get more information from when the claim is
being taken that it was hard to get more \--? Nobody is. Okay. Maybe I
misheard what was being said.

MR. SKLAR: Hi. This is Glenn Sklar, again from SSA in Baltimore. I do
want to throw down a placeholder on the issue of terminology. I think
it's really important that if there are specific medical terms of art
that are different than SSA terms art \-- be it marked, severe, and how
we define those \-- we really need to get on the same page. Again, it's
very unclear when you get a case who is supplying the information. Is it
coming from the claimant? Is it coming from the physician? It can come
from any number of sources, and then you place on top of that another of
complexity when you don't define what these terms precisely mean. So I
think that's a very important point, and I certainly wouldn't want to
lose that. Not only for this listing, but for others as well. So we
welcome any help in that regard as well.

DR. LAURITZEN: Right. Help on not mixing up terminology. Is that the
main \--? Between \--

MR. SKLAR: In particular squaring these terms with medical terms of art
that have specific meaning to individuals practicing in the medical
community.

DR. LAURITZEN: I would say off the top of my head, and please, any of
the other physicians correct me, that some of these severe, marked,
don't have a given. You know, they don't mean a specific thing in
medicine. Certainly there's a lot of things that do, but I don't think
severe and marked and extreme and moderate. You know, those aren't sort
of medical terms that are used or that have any given meaning in my
experience, and I think \-- does anyone want to say something different?
To me I think the important thing is understanding what's in the
listings and what a definition for Social Security is. It seems to be
the biggest issue. I mean the only other thing that's coming into my
head is like when you have like the MSS person who then is saying, you
know, somebody is severe or somebody is marked, and they may be using a
different definition. Some people in California in the speech and
language areas have actually created forms where they've given the
Social Security definition of marked impairment to the provider, and
then they \-- you know, they give the test, and then back comes the
thing saying, you know, it's a marked impairment based on this, you
know, this criteria. I don't know how you all feel about that. I mean,
it seems to work because it's very specific, and I don't know if that's
\--

MR. EIGEN: No. We're \-\--. Yes, we're definitely for that. By the way,
MSS stands for medical source statement. It's our lingo for asking for a
doctor's opinion.

DR. LAURITZEN: Okay. I think this is the time I'm going to throw in just
a little bit of editorial about getting information from a treating
source, and being one I was in a practice for a number of years and even
now at the county hospital. I think most physicians don't know much
about disability and don't know much about the Social Security program,
and it's not out of anything but, you know, lack of training, lack of
information, lack of awareness, and a million other things going on.

So I think that \-- I mean, I also can't \-- I'm not a big computer
person. I can't imagine someone asking me to now email people, and so
just for the other side of that; and I'm sure there's lots opinions in
the room about trying to get hold of physicians, but I think if you have
\-- I think you shouldn't just assume that they're not calling you or
they don't want to talk to you, or they're this or this or this. I think
it's more often an issue of time and an issue of knowing what
information you're even asking for.

I'm actually doing some training with the residents at San Francisco
General just next month about disability and about, you know, making
sure their patients have applied who, you know, are who need it, and
also how to give functional information. Because also people say \"We
need functional information,\" and if we all had a penny for using that
word we'd be rich. But what does that really mean?

So I think if you call someone it's better to have very specific things
that you're asking them. You know, do you need to know how often is the
child out of school or how often is the person out of work? Or things
that are very specific, because in a business practice if that person
may be having 40 patients in a day and then you're calling and saying
\-- you're catching him in between a patient, and then you're saying,
\"Well, what's the function of this person like?\" You know? They're
going to be lucky if they can remember the person, and they're getting
the cart and getting \-- you know, now if you have someone that's been
seeing you frequently that's great. But the other thing that's happening
in medicine is the number of primary care physicians is shrinking in
case anybody hadn't noticed.

(Laughter.)

DR. LAURITZEN: There's not as many treating physicians anymore that have
this longitudinal kind of stuff, even when we're talking about people
with good access to medical care. So that just the pool of that good old
doctor that everybody wants who knows you and understands you and knows
the various things and could give this kind of information is shrinking.
So, you know, that's a whole different topic. But I think that the more
specific that you could be, you know, in terms of what you're asking
them and not just say, \"Well, how is the person doing?\" And maybe
other people can suggest specific questions to ask a treating source.

MR. HATFIELD: Dave Hatfield, OHA. One of the things I know there's been
some talk in OHA and what had been suggested is it seemed to me that
doctors respond better as to what their patients can't do as opposed to
what their patients can do. You know, SSA tends when the medical source
statement and others are saying how much can this person walk, how much
can they stand, sit? I'm just curious what the physicians in this room
would respond to an idea of actually asking the sources what they can't
do as opposed to what they can do.

DR. LAURITZEN: To ask what they can't do?

MR. HATFIELD: Right. Can't. Yes.

DR. LAURITZEN: Anybody want to pick up that?

DR. MINNIGERODE: I do that. I don't lead them. I just say, you know, is
that \-\-- knee going to hold up? Is he going to stand and walk six
hours a day or two hours a day? You know, and a lot of them have been
tricked by medical consultants calling from Social Security and thinking
that they were allowing their patient, and then they used it again the
doctor and denied the patient. That has happened, and it's making them
more and more goosey about making source statements. So if they ask me
what allows them I'll tell them. You know, I'll say it has to be
reviewed by a federal review agency, I'm not making the final decision,
but yes, they want to know.

DR. LAURITZEN: Other comments? I think it would be easier to say what
someone can't do, because that's sort of what you're hearing most of the
time as a physician. You're hearing a problem, and you're hearing, you
know, what people can't do. So I think physicians would be in general
more able to give that kind of information, because you don't see a lot
of what people can do because they're out doing it and they're not
coming to see you.

MR. HATFIELD: Right. And ultimately it's the Commissioner who decides
what the person can do, and so by asking the doctor what they can't do
we're making \-- if we can make that decision \-\--. It would be almost
a repetition it seems to me to ask a physician what the person can do.
It's almost asking them to do the functional \-- I mean, but yes. In
asking other doctors that seems to be the response is I can definitely
tell you what my patient can't do. Because they tell me what they can't
do or I can see through science and findings. But to ask me what they
can do or \--.

DR. LAURITZEN: Well, I think there is a stated or maybe sometimes
unstated conflict, and if you are the treating source for someone who
maybe you \-- maybe you're somebody who knows the listings really,
really well for some reason. Like me, who does both jobs, you know, and
if someone called me and I as the pediatrician I'm trying to be the
advocate for my patient and, you know, might want them to get disability
and yet maybe I happen to know that they're really not quite that bad.
So you're in sometimes a bind as a physician. You know, are you an
advocate who \-- where do you draw the line in terms of how much
information you give or what information you give. You know, I just sort
of throw that out because, you know, most physicians are trying to get
their patients services.

MS. ROECKER: This is Sue Roecker from Social Security. One other aspect
that we've heard in similar meetings, especially I think for children as
patients, is that the treating physicians will make notes that say,
\"Johnny is doing fine. Johnny is doing better.\" It's not that Johnny
is well or Johnny has been cured or Johnny \-- but that every little
micro-improvement, you know, and just be very positive and to have some
positive report and be optimistic and so forth. It's noted and, you
know, it's that kind of treatment that is just trying to be very
encouraging. So that you get those notes that, you know, so-and-so is
fine. You don't continue to every time you have a visit to list all the
problems or all the symptoms \-\--.

DR. LAURITZEN: Right. I think that's a very common thing.

MS. ROECKER: So that you get these charts or these records that, you
know, on one hand \-- you know, and then you get a medical source
statement that says, you know, \"My patient can't work.\" But you look
back at the last, you know, 12 months of office notes and sounds like
you're better, better, better, or you're doing fine, or many of these
other things are noted more than maybe being one \-\--.

DR. LAURITZEN: I think that's a very important point, and because those
people \-- I mean, physicians are writing the notes for themselves. Now
everybody is using them, but they're also maybe referring to their own
context, doing better for that patient. So that's again where you if you
really need different information you've got to ask for it. Did you \--?

MR. LEACH: One suggestion. This is Bill Leach at the Access Program. One
suggestion that I would have, the

\-\-- source commonly used to gather the information we're talking about
is something called the medical assessment of abilities to do
work-related activities, and it's broken down into physical and mental.
One thing that would go a long way toward resolving some of these issues
we're talking about is just to put a question on that questionnaire that
says, \"Based on what you just told me, is this consistent, or do these
symptoms wax and wane?\" Because many times the doctors and will look at
it and they'll say, yes, on occasion the person can stand, walk, bend,
lift, carry, but they don't get to this thing that we've been talking
about of what about the times when they can't. I think you could just
put a question in there that draws out is this a stable kind of
situation or is this one that varies over time, and that can get at a
lot of these issues in a form that the doctors will at least fill out
because that's only two pages.

DR. LAURITZEN: Yes. That sounds like a good idea to me.

MS. WEATHERFORD: I just wanted to comment that my daughter is a liar.
She says she's fine, and when she says she's fine that's our
communication, that's our secret code that \"Mom, I'm going to make it.
If it kills me I'm going to make it. I'm fine, so don't ask anymore
questions.\" And she lies to doctors that way, and only one doctor in
her lifetime has managed to penetrate that and say, \"I understand what
fine means to you.\" So I want you to know that many of these people who
are coming and telling you that they disability are really, really
hurting to say that word, because disability to Katie is saying, \"I
can't make it.\" And she's been fighting for eight years to never say
the word, \"I'm disabled.\" I just want you to keep that in mind.

MR. EIGEN: Yes. I have to comment on that and support it. It's a very
important issue in the SSI program for children that we wrestle with
constantly, because to qualify you have to tell a child to be disabled,
and it's very bad and that's not how children are raised in any other
situation except for ours. When they go to school the whole point is
success, and that's a very important point.

DR. MINNIGERODE: Also I tell all my medical consultants to be very
careful, and I think we need to develop this specialized cadre of
consultants if we ever get to that where we can send an email. Maybe you
can turn it around. I mentioned it here at our table and the other
physicians here said the same thing, is that doctors are by and large an
over-achieving group. They are very proud of their own ability to heal
patients, and there are some doctors that don't want to think that any
of their patients are disabled. They think that a 62-year-old guy with
bilateral \-\-- who was previously a plumber can go down to the Quick
Trip and work, and he can't, but they don't want to give me a medical
source opinion that will allow him to have social security disability. A
really great example is my own nurse clinical practitioner has
metastatic breast cancer to the bone and had been working with that bone
\-\-- for two years because she didn't have any \-\--. Now her hip was
to the point it was about to fracture through and she was going to have
to have a procedure on it, and she called me crying because her
oncologist told her she would not qualify for disability. She said,
\"Lana, I know you're doing this now.\" And I said, \"He told you
what?\" I said, \"You've been working meeting the listing for
two-and-a-half years.\" You know, but he told her that her treatments
weren't so bad. She hadn't had all the horrible side effects of cancer
that everybody else had had, so she was not disabled. So we're going to
have to be a little careful about who we solicit our \-- I mean, I know
we hear all the doctors, hear about all the doctors who think that all
of their patients are disabled, and we're always aware of that at DDS,
but I think you have to be careful of the doctor who thinks nobody is
disabled as well when you're solicit treating source opinions.

DR. LAURITZEN: Yes. It's good to know both other people's and your own
prejudices. Just to know so you know where \-- how to separate them.

MS. ELIZONDO: What I wanted to say is that \-- and people have kind of
alluded to it, but there is an attitude from both the patient and the
doctor that if you say disability it's all going to go to crap. But
usually by \-- sorry. But usually by the time you get to that point
things have already degenerated and the doctors \-- I mean, the doctor's
goal is to get you better, and your goal is to not be sick. So \--

MS. : Collusion of \-\--.

MS. ELIZONDO: Yes. So there's a collusion of, you know, you're saying,
\"I'm fine. I'm fine.\" Or, you know, \"Oh, hi. I was just here to
visit,\" and like you're here for like 10 minutes, and \"Okay. I got
go.\" And then your like limping out the door, and then you go home and
then like the next day you're like, \"Oh, my God. I didn't tell him
about this,\" and \"I didn't tell him about this.\" Then the doctors,
you know, their goal is, \"Oh, I'm making this patient better. I'm
giving them everything that I can possibly give them,\" and they're
going \-- they sound okay. They sound cheerful. They sound positive. So
everything must be going fine.

DR. LAURITZEN: Yes. I think there are very \-\--.

MS. ELIZONDO: I think though that doctors aren't very well educated on
what disability means and not \-- I mean, it's not anything against
doctors. You know, there's no time for them to train on that, and that's
not really what their main goal is. Their main goal is heal, not to put
people on disability.

DR. LAURITZEN: I think the doctors that are best at that are physical
medicine and rehab doctors, of which \-- is that what you are at our
table back there? Yes. So there are. You know, there's different
physicians within \-- I was a physical therapist for 10 years before I
went back to medical school. So I have that functional, but it's most
people don't until you get into the rehab kind of stuff, or you just
find people who are more open-minded or have \-- I think most of the
time when somebody themselves has a chronic problem then they're able to
start thinking in that way. So I think the more information that gets
out for everybody the better because there's always things in the system
that go against people really understanding.

MR. EIGEN: And of course that raises the issue we haven't talked about a
lot today, about the other kinds of sources of information. Various
kinds of clinical social workers and \--

DR. LAURITZEN: Yes. Physical therapists. I always put in a plug. Yeah.
We probably should \-- why didn't I think of that? Under functional
information, I mean, that's a lot of people who are getting OT or PT or
\-\-- therapy or home healthcare or \-- those are the people who are
working hands on, whereas \-- who really know the information much
better than the physicians usually.

MR. HEITZ: Well, we had heard a lot yesterday about physicians
assistants. When I was doing a hearings in my \-\-- it was \--

DR. LAURITZEN: Nurse practitioners.

MR. HEITZ: \-- hard to find a single doctor at the Indian Health
Services. Maybe we \-- oh, this is Michael Heitz from Denver. Maybe we
should consider some sort of a training issue or something just to
revisit this issue of other sources. I mean, the \-\-- talks about
acceptable medical sources. Other sources are unacceptable, they're
other sources, but maybe in \-- particularly in the introduction to the
mental listings they really emphasize how other sources are so
important, and maybe particularly in the immune disorders it's something
that can be emphasized for our adjudicators.

DR. LAURITZEN: Because there are a lot of rehab-oriented people \-\--
the whole branch of rheumatology, immunology that then goes towards \--
at least in pediatrics, because early on people are trying to, are more
active. But, you know, that information is out there.

MS. WEATHERFORD: I mean, for school children that would include checking
the teachers.

DR. LAURITZEN: Yes, yes.

MS. WEATHERFORD: This is Dale Weatherford.

DR. LAURITZEN: We haven't gotten into \-- that's sort of the mantra of
at least the DC claims is getting the teacher questionnaires and getting
preschool questions and daycare questionnaire. Yeah. I mean, we all know
the people who spend the time with the kids are the ones \-- or the
people, are the ones who are going to know how they're doing. I was
aware of Sarah this morning talking about \-- or maybe it was yesterday,
that she got in her cases when she was developing for HIV cases that she
got information from as many as 10 or 15 other people who knew the
claimants, and that's where she got the functional information. You
know, and I think in Social Security that's hard because we're quite
sure. You know, this sort of who is being objective, who is being \--
and, you know, that's the same thing in any of these cases. In medicine
we're taught to ask our patients. Right? Believe our patients. In
pediatrics we have to believe the parents. If you don't believe the
parents you're a goner. You know, and so then you get into, you know a
system like this and people start being \"Who is being objective?\" And
I don't what the answer to that is. Probably \-- probably we'll ask
Barry.

(Laughter.)

MR. EIGEN: I don't the answer.

DR. LAURITZEN: Getting as much information \-\--. There's no answer, but
obvious the more information you have about people that know the person,
and the more information you have about \-- from the person the better.

MR. EIGEN: I mean, typically in an adult claim. In some sense it's
actually easier to do children's claims because children typical are
observed by a bunch of people. You know that. So we always make a big
deal about you don't just have to go by what the parent says. You go by
what the teacher says, too. You have to find that out. If they go to
scouts you have to find that out. But typically for an adult we're not
even aware of who the other people are who know about the person. I
mean, Sarah must go out and find out who the person's friends are and
all that. We don't even have that information to start looking.

MS. DOAK: I'm real interested in this part right now, because what you
said I think you really hit something with me anyway as an adult patient
in that I go to my physician and he's more interested in getting a smile
out of me and telling me a joke. I shouldn't say more interested. But,
you know, he wants to see Bonnie all happy and perk me up, and so I go
along with it because I get caught up in it. But who is most apt to see
the real Bonnie is a home infusion nurse. She's going to see me cry and
she's, \"How are things going, Bonnie?\" It's just the interaction is
different. So also when you say a teacher for children I think that's
excellent. But I do think that there are other sources that maybe do
need to be looked into here like the nurses. You're going to see them
more. So whatever reason as an adult we tend to be more ourselves with
these other medical people than we do the doctors. It should be, but
that's the way it is.

DR. LAURITZEN: Yes, yes. I heard many more tales as a physical
therapists. I probably knew my patient much better than I do now as a
physician.

MR. LEACH: This is Bill Leach with the Access Program again. I just
wanted to trade off what the gentleman over here was talking about. I've
gotten nursing notes before from infusion nurses that are doing the home
infusion, and they are lightly regarded at best by the adjudicators that
I deal with. They are not physicians. They're not considered to be given
a great deal of weight. Particularly when you've got a consultative
examination from a physician from the agency going the other way. Then
the nurse's notes don't carry a whole lot of weight in the typical
evaluational situation.

The other part I wanted to talk about, about children, this is one that
is particular to again the primary immune deficiency kids. When we talk
about there are other outside sources that are objective about their
functional limitations, many immune deficient children end up having to
come out of the public school system and be home schooled because they
are so susceptible to infection that they can't go to the public schools
anymore. They stay sick all time, and so we get thrown back into this
pit again of \"Oh, it's just the parents saying the child is limited,\"
because that's who is doing all the observation. The child has no social
functioning outside of the home, and so there is no other observer other
than the mom, who obviously since they are going to be, you know, the
payee does have a financial incentive to have the child found disabled
as opposed to a teacher in the public school who has no interest in the
outcome. So it is a problem. I don't have any suggestions for you on
that. I'm just saying it is a problem and a concern because very often
we end up in situations where there is no objective outside observer
other than the caretaker parent.

DR. LAURITZEN: I think one suggestion, the obvious suggestion is the
more people know about illnesses the better, because you couldn't be the
person reviewing a claim for somebody with severe, you know, combined
immunodeficiency without knowing that that's bad, and then you go \--
you know, you start thinking like that instead of \"Oh, here's somebody
trying to scam the system.\" You know, so I think the more people know
about the conditions and what they look like in conferences like this
the better. Okay. That was good. Are you guys happy with are getting
enough policy tips for this table here?

(Laughed.)

DR. LAURITZEN: They're looking a little glazed. The fifth question I
think we've been talking about all through. \"The constitutional
symptoms and the signs, fatigue, fever, malaise, weight loss \--,\" or
weight gain, which is \-\-- the point, \"should we include in our
listings, and how should we consider them?\" Do people have more to say
about that? That seems to be the one that is really the take-home
message, which I think we've gotten. Right. Yes.

Question six, \"What is the effect of treatment on the length of
disability?\" I didn't understand that question either.

MR. EIGEN: I can't remember. What did it mean?

DR. LAURITZEN: Maybe you're making people \-- maybe this is \-\-- was
talking about \-- with some of the new biologics, but then people get
better for a while. So they look better, and so maybe there might be a
duration issue

or \--

MS. WEATHERFORD: I certainly want to address that from the primary
immune deficiency. Just that once our children are on IVIG then they
cannot be tested for IGG levels because they're getting a false
positive, and our children would have to go off of IVIG for three months
before they could be they tested. In those three months, I don't want to
even go there. I don't want to know what's going to happen in those
three months. So our children are not something that we want to be taken
off of IGIV.

DR. LAURITZEN: Right. It starts sounding like an uncontrolled study
\-\--.

MR. EIGEN: I just can't remember what we meant by that. Paul?

MR. SCOTT: Just a very general question \-\--. It was a very general
question. We just wanted to know any ideas on how treatment affects the
length of disability.

MR. EIGEN: I mean, I have to say it sounds like to me like with very
rare exceptions these disorders aren't going to get better, so I don't
think this is going to be an issue in this body system. Is that wrong?

MS. ELIZONDO: I was just going to say \--

DR. LAURITZEN: Say your name again, too.

MS. ELIZONDO: This is Meghan Elizondo with the Arthritis Foundation. I
was just going to speak to the fact that, you know, there are a lot of
new drugs coming out that are \-- you know, they're called biologicals.
They're based on treating genes, treating cells, and \--

DR. LAURITZEN: Do you want say what the TNF, what you call that?

MS. ELIZONDO: Tumor necrosis factor.

MS. : Okay. Okay.

MS. ELIZONDO: So, and then there's another one called interleukin-1, and
they're just cells that are \-\-- inflammation and then \--

DR. LAURITZEN: I know \-\--. I didn't know what the letters were.

MS. ELIZONDO: Yes.

MS. : Okay.

MS. ELIZONDO: And so, you know, and the new biologicals they're like
doing tons and tons of research right now on making new drugs for
different diseases that are based king of in this whole new realm. And
some people do improve and some people are able to like work and
function and do everything that they want to do, and then some people
like us are on the biologics plus all these other medications and we're
so like struggling to get through the day. So they aren't consistent
medications. So I would say that the treatments, like some \-- like the
treatments are not a consistent way to measure your disability or your
functionality. It's got to be just based on what you're actually
functioning as.

DR. LAURITZEN: Right. Right. The end product.

MS. JOHNSON: \-\-- Joan trying the Enbrel. It only lasted for about two
years where she felt well with the Enbrel. Joan had it for two years,
and the efficacy of the treatment actually kind of wore off and she had
to try a new biologic, and that tends to happen with some of the drugs.

DR. LAURITZEN: I actually know \-- and I'll get to you in second. I have
a question for you guys that has been bounced around in the DC stuff for
a while. Kids going in for getting IV gamma globulin every week or every
couple of weeks, people are always ask us can we equal that to the adult
listing where people are going in for transfusions where that's \-\--.
So the issue is if you are having people go frequently for gamma
globulin treatments how does that factor into episodic hospitalizations,
you know \--

MR. EIGEN: I mean, it sounds \-- I don't know the answer. I wouldn't
hazard a guess now. I would have to \-\--.

DR. LAURITZEN: Yeah. You're being recorded, too.

(Laughter.)

MR. EIGEN: Well, I don't know. It sounds like something that would
certainly go in the health and physical well-being. I mean, if we got
that far, but I don't know whether it's an equal listing.

DR. LAURITZEN: Yes. I think that's right. That's usually \-- yes.

MS. ELIZONDO: I was just going to say the same thing. I mean, if they're
going to ask that about the immunoglobulin.

MS. : They probably don't know what it is.

MS. ELIZONDO: But the same thing happens with the biologics that you'll
start on a treatment and it'll wax or it won't do so great, and then so
you have to double the dose; and then you're doubling the dose and
you're increasing the frequency that you take it. Then you're like
doubling the dose again, and so \--

MS. : Right.

MS. ELIZONDO: I mean, are those indications of severity or are they just
indications that that drug just doesn't match your system?

DR. LAURITZEN: Right, and I would think the point is often like with the
seizure listings where people \-- you can't assume that a low level of a
drug means the person isn't taking it, because there's so much
variability in each person's biology.

MS. ELIZONDO: Right.

DR. LAURITZEN: That, you know, it's going to be variable between people,
but variable in the same person as well if I'm hearing you right.

MS. ELIZONDO: So I think treatments are kind of it's \-- the question
is, you know, what is the effect of treatment on the length of
disability, and I would have to say that you can't \-- the treatment
should not be part of the consideration of \--

DR. LAURITZEN: And I think it's usually not. Right? It's not as much. I
mean, it's mixed in.

MR. EIGEN: No. I mean, it depends on what you have and what the
treatment is. There are certain things you have that you can have
treatment and it can make you better, or well enough to not be disabled.
It depends on what you're talking about.

DR. MINNIGERODE: Well, I think we're looking \-\-- select population in
these guys. You all have JRA, right? Or a very young onset \-\--. The
older person who gets acute onset of inflammatory arthritis, usually
rheumatoid, who is in their 40s, a typical 40-year-old woman who \-\--
rheumatoid arthritis. There are a significant percentage of those who
get a good initial response to the Methotrexate or the tumor necrosis
factor drugs, Enbrel, Remicade, whatever. It may not last, and when they
apply I don't think there's any doubt. I mean, when you look at the
rheumatologist \-\-- and he has all these red hot joints X'd through.
When they apply they truly think they're disabled, but after three
months of treatment they're doing pretty well, and then probably go back
to a job. But then there's these guys who already have all these
built-in underlying deformities and obviously clearly severe immunologic
disease.

So there aren't a lot of those people who when you put in that hold to
make that their going to meet the year's duration, and many of them
nowadays that we've got the biologics will call up and tell the
counselor to cancel their claim, they're going back to work anyway. I've
been surprised at how many of these people do do that now. I mean, it's
just like when the HIV guys got protease inhibitors. Our HIV
applications dropped off 70 percent when the protease inhibitors came
out because they did want to work. So I think there's nothing wrong with
that initial application in the middle-aged red hot rheumatoid, but I do
think we have to wait and look and it, at the outcome.

MR. SCOTT: Okay. I had a couple of brain cells that started functioning,
Barry.

DR. LAURITZEN: Identify.

(Laughter.)

DR. LAURITZEN: Say who you are for the tape.

MR. SCOTT: This question, it wasn't in regard to duration or to allow
someone. We were thinking about someone being disabled and with the new
treatments how long might we want to wait until we look to see how the
person is doing, because you are required by the statutes to review
people's claims every so often. So if they're a year period, a five-year
period \--

DR. EIGEN: So typically even if you have a permanent disability we're
required by law to look at your case from time to time; and so what we
do is we put people into categories according to whether we think
they're going to improve or if there is a possible they'll approve, or
even if there is no possible they'll improve, and we have different
lengths of time. So that's what Paul's referring to, what Paul Scott is
referring to.

(Laughter.)

DR. LAURITZEN: Paul Scott at the Center for \--

DR. EIGEN: With two Ts \-- is referring to in his statement. So that's
what he's saying. Should we put a person in a shorter term look at them
again, a longer term, medium term, that sort of thing.

DR. LAURITZEN: Which actually as it turns out was question number seven.

MR. EIGEN: Oh. Okay.

DR. LAURITZEN: Yes. So \--

MS. WEATHERFORD: Just go ahead? Okay. Gail Weatherford with the Immune
Deficiency Foundation. The IVIG for my daughter did not make immediate
changes, but a year after beginning it she began to show signs of
improvement because her body was so deteriorated before she began, and
we continued to see signs of improvement for three years. After the
third year she began to plateau, and we could say that she's probably
stable now. But if she has to change products, which she will this
summer because of Bayer's moving over to a new line, then she will
possibly lose a lot of ground and then we'll have to start building
again. I don't know how long it will be before she's healthy ago in a
plateau. So if that gives you a little bit of a time frame.

MR. EIGEN: Yes. Actually it makes the question more meaningful.

MS. : It does. \-\-- starting a relay race.

MS. VOGEL: The other issue, and this is a difficult one and going into
the workplace, is the person who goes on disability, who is sick in the
workplace, who is on IVIG, and who gets better being out of the
workplace and not being exposed to as many infections. Now what happens
with that person being out of that place and their levels are better,
they're doing better, how do you determine? Is that person permanently
disabled? Can they go back to work? And if you put them back in the
workplace are they going to deteriorate again? That's a difficult one,
and I don't know what the answer to that is and I don't know if there's
a temporary situation where that person may want to try another work
environment. I don't know, but most of those people who do not succeed
in the work environment and who do better in the home where they're in
germ-free environment \-- a more germ-free environment, are not going to
succeed going back in the workplace, but are going to look better being
outside of it.

MR. EIGEN: There's an analogy to this in our mental disorders listings.
There are people who have a variety of mental disorders, but I'll use
psychosis as an example. We have special criteria for some people who
have psychosis who are now living kind of marginally. They're living on
their own, they're not \-- if you look at them now you would say,
\"Well, you're not so bad,\" but it's because they're in a situation
that's basically protected. It's from a mental standpoint, but it's the
same idea. Yes, it's a hard question.

I was also thinking, I have never done this, but I had a similar
situation happen to me. I had a child who died of cancer; and he had a
bone marrow transplant, and so he got better and the DDS tried to cease
him. By the way, in the face of a rule that said that he should have
even been called up for a continuing disability review, that he was
supposed to stay on because we had a rule that said if you have a \-- we
knew that if you had a bone marrow transplant if we looked at you
shortly afterwards you'd probably look okay, but that wouldn't
necessarily tell you anything.

So I can feel for you. I personally know what that means, and that's
what I'm worried about. I'm also worried about this failure of treatment
issue I've heard a lot of today. So what do we do about that? If we say
check the person in a year-and-a-half but we know that there's a good
chance that the treatment will fail in 24 months, why would we look at
the person? I don't know the answers to these questions. I just think
this is very complicated. Very complicated.

MS. CHRISTENSEN: I'm Janet Christensen from the Immune Deficiency
Foundation. I have two boys with primary immune deficiencies, and going
back now to what was said about what was going to work, my boys are
going to be forced to find large employers to have insurance coverage
from their medications which right now is running about \$8,000 a month
for well care. So if they're going to get sick in a large environment
then they're really caught. You know, what are they going to do? It's
tough.

MS. WEATHERFORD: We've talked a lot today about primary immune
deficiencies and IVIG, and I want you to understand that IVIG only
replaces IGG. Most of our primary immune deficiencies include multiple
gamma globulin components \-- IGA, IGM, IGD, IGE \-- and IGG is only one
small part of that. So I don't want you to misunderstand that once we
get them on IVIG then they're taken care of, because it's not the case.
Many of our clients have other issues with that. My daughter is
pan-gammaglobulinemia. In other words, she has none of the IGGs \-- IGA,
IGM, IGD, or IGE. So getting IGG is a help, but it's not a cure.

DR. LAURITZEN: Leave it to the moms to drive the point home well. So
thank you. It's 4:15, and it seems like maybe this is a breaking time.
So I want to actually thank everyone. I thought it was going to be much
harder to get a conversation. You are much better than the people
yesterday.

(Laughter.)

DR. LAURITZEN: So I am going turn it back over to Sue Roecker.

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

**by Sue Roecker**

MS. ROECKER: Thanks. I just want to wrap up real quickly and not hold
you much longer. Yes. Please do your evaluation sheet before you leave.
I just want to wrap up. I want to thank everybody. This has just been an
extraordinary day, and extraordinary two days. I have taken extensive
notes, and as I was doing that I thought, \"Well, why am I doing this?
We're going to have a transcript.\" But it's been very helpful to
listen. One thing that struck me especially today even more so than
yesterday is I always think that we bureaucrats have the corner on
acronyms. You guys have us beat.

(Laughter.)

MS. ROECKER: And mom back there, boy, are you good, I'll tell you.
Anyway, we kind of three categories here as I was trying to put this
together, and I don't want to recap everything. We'll have a nice
transcript of what went on. Many of us took notes, and certainly there
are a lot of themes that we have talked about and have come up again and
again. But we've gotten tremendous, very specific input I think on the
listings themselves, and certainly we had that yesterday, but today I
think we've just gotten very, very specific suggestions. I can't promise
we're going to everything you've asked us to do or you've suggested, but
certainly very, very good suggestions, very specific, something that we
can \-- concrete that we deal with and we can take back and, you know,
say \"Yes, how does this fit together, or do we need to modify it?\" But
we have something very, very concrete to work with, and for that we
really do thank you.

We've gotten specific ideas about trying to use of the concepts or the
approach in 14.08N. We talked about that a lot yesterday, so part of
what \-- today we were talking about how wonderful 14.08N is. Yesterday
we talked about how deficient that paragraph was in terms of HIV. So I
think we need to look at that, but I think certainly some of the
concepts are those kinds of things that we want to look to see whether
it's appropriate for the other immune disorders.

We talked about just a tremendous amount of discussion today about
including the Social Security rulings language somewhere in the
listings, and certainly using \"or\" instead of \"and\" in certain
places. Certainly we want to look at weight loss and weight gain. I
mean, that's a very specific thing that I think that again is probably
too limiting and we need to see how we approach that. The whole issue of
the drug regimens, the side effects of drugs, the failure of drugs, the
longitudinal aspects of being on these drug cocktails, and the variable
of the success and the changing success, you know, over time.

The difficulties in trying to be in a work environment when you have one
of these disorders is certainly probably unique in some ways to this
body system because of being out and the workplace can actually be very
detrimental. The other kinds of symptoms that we need to either stress
or make sure that we consistently in some way weave through the
listings. Not just fatigue, but the cognitive dysfunctioning; the sleep
disruption and all of the things that that can also cause, depression,
pain, et cetera; the cumulative additive effects of multiple disorders,
multiple impairments; the cycle of flare and remission and how that
varies from individual to individual; the fact that stress can be
trigger and some of those other things, especially for folks with these
kinds of disorders.

Using other sources, third-party information. How do we use it? How can
we get it? All the difficulties and complexities of that, you know, as
much as we'd like to get, you'd like us to get. How do we get that? How
do we identify who those people are? How do we use them in terms of
especially the listings? Where do we draw the line in terms of how much
functional information do we build into the listings, because that's the
kind of stuff we get from third parties quite often.

So all of those things. Again, very, very good comments that are
specific, things that we really can go back and use and talk about. We
also had a lot of comments about process. Not as much as yesterday, but
we had a lot of comments about process today, too. You know, we know our
process can be confusing. We know it can be arduous. We know it can be
difficult to maneuver, and I think Barry says it so eloquently; we
really do want to do this right and we don't \-- in all 3-million claims
a year we don't do it right. You know, but we are trying, and we know
that sometimes it takes long. Sometimes why do you need to go to hearing
when perhaps it should be decided at the initial level. We've heard that
before. That doesn't mean that we are satisfied or that we think that
it's okay. There are things, you know, going on to try to address some
of those issues. There are bigger issues and there \-- but there are
things that we think we can do to perhaps address that.

We talked about training a lot. You have suggested a lot of different
training. We do do training. We try to train the adjudicators and
physicians that are involved in the program, but I think that there are
certainly things that we can do, and we'll take those suggestions back.

The need for medical specialists in the process, in various ways that's
come out loud and clear. Again, that's something that Martin Gerry and
others are particularly interested in trying to work on, so I hope that
over the next year or two that we can develop some improvements in that
area.

There are a bunch of things in the process area. Then you didn't stop at
that. You wanted to change the program, and you had some ideas of
changing the program in terms of partial disability so that folks could
do part-time or could do variable work efforts. While I think many of us
think that that's something that should probably be seriously
considered, that's a statutory issue; and while we won't rule it out,
that's not something we can do by changing the listing. So that's a much
bigger issue, but that did come through loud and clear, especially
yesterday and today. The work incentives and how does really help
people, the health insurance issue. You know, the reluctance and the
fear about going back to work because of loses of health coverage, and
just the complexity of the work incentives and some of the gaps and the
failures in work incentives.

Finally, I would say thank you for your offers of help. I'm sure we will
follow up on that, those of you who have resources that we can use in
terms of specialists and other specialized knowledge and experience. We
certain appreciate the offer, and I think that we will be touch to try
to get some specific information, or as we try out some things among
ourselves and say, \"We'll, how does this fit together?\" We'll be
calling on you to bounce this off and to say, \"Does this get to what
you were trying to tell us about?\"

So I think that's in very, very quick, general terms the kinds of things
we heard from you. We have a transcript, but I just want you to know we
did hear you. I think we listened. I think we learned an awful lot. We
really do appreciate you taking your time. Those of you who have
traveled great distances we really appreciate it, and we thank you. So
have a good trip home and thank you very much.

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