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Approved-By:  Bill McGarry <wtm@SHELDEV.SHEL.ISC-BR.COM>
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Date:         Thu, 13 Aug 1992 01:31:32 EDT
Reply-To:     Bill McGarry <wtm@sheldev.shel.isc-br.com>
From:         Bill McGarry <wtm@sheldev.shel.isc-br.com>
Subject:      Handicap Digest # 2865
X-To:         LHCAP <l-hcap@VM1.NODAK.EDU>

                             THE HANDICAP DIGEST

                                 Issue # 2865

                          Thursday, August 13, 1992

Today's Topics:


                                ******


                          Drug prices           1/2
                           Connecting To Phones...
                            DEAF CULTURE - PART 2
                                Deaf Culture
                                   Hatred
                                    Poll
                                  I AM DEAF
                                   Hatred
                                Deaf Culture
                                 Re: POLL...


                                ******


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                              Bill McGarry (Moderator)
                              (203) 337-1518



------



Subject: Drug prices           1/2
From: Patricia.Bregman@f24.n3602.z1.fidonet.org (Patricia Bregman)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Rare Disorders Conference]

The Canadian government has given a retroactive increase in the
length that foreign drug companies can maintain their patent to 20
years.  THis summary of a report in the National Organization of
Rare Diseases (NORD) recent newsletter gives some indication as to
why this decision may have significant negative impacts on health
care budgets in the future.

DRUG COSTS - ANTITRUST HEARINGS
BACKGROUND

The Spring 1992 Orphan Disease Update, published by the National
Organization of Rare Diseases reports on the activities of the US
Senate's Antitrust, Monopolies and Business Rights Subcommittee
chaired by Sen. Howard Metzenbaum which held hearings into the
Orphan Drug Act to consider amendments to that legislation.  The
hearings produced some very interesting information about drugs
prices and costs.

First passed in 1983 the Orphan Drug Act gave extended patent
protection to ensure that drug companies would continue to produce
drugs that would be used by few people.  However, according to the
hearings a some companies have made enormous profits on a small
number of drugs recouping far more than their development costs.

COST INFORMATION

While the Committee reported that most orphan drugs cost little to
research, had moderate prices and had relatively low sales.
However, their data showed that some drugs made alot of money for
their companies.

Ceredase

For example, they cite the drug Ceredase which treats Gaucher's
disease. The cost of the drug averages $350,000 per year per
person.  The comittee estimated that there were between $80 to $120
million in sales its first year on the market, but the drug cost
only $54 million to develop.

Human Growth Hormone

Similarly, the Human Growth Hormone (HGH) used for pituitary
dwarfism cots $10,000 to $30,000 per year.  Genentech which makes
the HGH Protopin estimated 1991 sales of $180 million. The drug
cost only $45 million to develop.  It was the 34th top selling drug
in the US during 1990.

Erythropoeitin

Another drug that sold extremely well was Erythropoeiten which was
the 36the top selling drug in 1990 and was expected to sell almost
$400 million in 1991.  Much of the cost is covered by Medicare for
kidney dialysis patients.  It cost approximately $150 million to
develop.

Pentamidine

AIDS drugs were also protected by the Orphan Drug Act since
initially few people were affected. Pentamidine cost less than $25
million to develop and had sales in 1990 of $120 million.

ORPHAN DRUG ACT AND AMENDMENTS

Amendments have been proposed to the Act that would use a sales
trigger of $200 million after which other companies could produce
the drugs. If a company could prove development costs were more
than $200 million they could appeal this.

The Orphan Drug Act Amendments of 1992 (S. 2060) was introduced by
S. Metzenbaum (D-OH) and Send. Nancy Kassebaum (R-KS).  Similar
legislation was introduced by Rep. Gerry Studds (D-MA) in the House
(HR 3930)

Abby Myers, NORD President, and the person who lobbied hard for the
Orphan Drug Act,  described the history of the Act following two
government reports in the 1970s about significant drugs of limited
commercial value.

Incentives, including 7-hear exclusive marketing, tax credits for
clinical research, government grants and special handing by the
FDA, were to entice companies to develop drugs.

She said that while most companies acted properly, some companies
used the law to shelter from competition, in particular biotech
companies since these products are not as well protected.

She reported receiving a call the morning that President Bush was
to pocket the Orphan Drug Amendment Act (of 1990) from Larry
Lindsay of the Vice President's Competitiveness Council. He tried
to explain why the veto would be used.

She explained her concerns about the high costs of the drugs,
saying, "If the government doesn't do something about these prices,
only the rich will live and the poor will die."

Lindsay responded "Before the Orphan Drug Act everyone died. Now at
least the rich will live."

WITNESSES

Associations

CF Foundation

They are not members of NORD and said the cost does not matter.
She reports that he said, "The lives saved by orphan drugs are more
valuable than any amount of money spent on those drugs."

Industry

Genetench, Genzyme (biotech companies producing expensive drugs.)
Said that they need to charge high prices to fund other research on
other drugs.  Questioned by Senator Metzenbaum since the purpose of
the Act was to develop drugs of little commercial value.

Consumers

Protrobin:  Parents of a child whose pituitary gland was destroyed
during treatment for a brain tumour.  Father lost home and jobs to
pay for drug. Not told that Genentech had free giveaway program for
needy patients despite sending a registered letter to the company's
president.  Provided free only after they could not pay anything
due to no insurance Protrobin until new insurance took effect.

Human Growth Hormone:  Parents of 2-1/2 year old who is 27 in. tall
(equivalent to 7-month-old child.)  Health insurance premium
through husband's job continued to rise and they are concerned that
he will lose his job because of the cost to the company. "Our whole
life is devoted to paying medical bills,".  Asked the state of Utah
for assistance and were told to get private insurance, get divorced
and go on welfare, "...move to Canada"

Cedareses:  The drug is used for Gaucher's disease which affects
approximately 20,000 Americans and is a disorder affecting the
liver, spleen and bones.  One witness presented information about
the fact that the company producing the drug was given research
subsidies, tax breaks and a seven -year monopoly now charges
$270,000/year.

She said that initially her insurance company would not pay for it
when it was experimental and Genzyme, the manufacturer would not
provide it free.

In April 1991 the drug was approved for marketing after a
streamlined process through the FDA taking 10 months.  She pointed
out that it took longer for that for her insurance company to
preapprove reimbursement.

She also said that her insurance has a $250,000 lifetime cap
leaving her no coverage. Even with insurance her copayment is
$50,000 yearly.

Another witness also talked about the history of the drug, pointing
out that the research was done at NIH for 30 years (at taxpayer's
expense).

>>> Continued to next message
[Note from Bill Mcgarry: The next part of the message has not yet
 come through.]

===
 * QNet3 * ADANET:41/62/19:Ability OnLine - Toronto Canada - 416/650-5411

--
Uucp: ..!uunet!bunker!hcap!hnews!3602!24!Patricia.Bregman
Internet: Patricia.Bregman@f24.n3602.z1.fidonet.org




------



Subject: Connecting To Phones...
From: Kimberly.Bobrow@f488.n141.z1.fidonet.org (Kimberly Bobrow)
Organization: FidoNet node 1:141/488 - Alice's Restaurant, Branford CT


[This is from the Silent Talk Conference]

In a message to Kimberly Bobrow <07-17-92>, Jim Brown writes:

 JB> You dont need an acoustic coupler.  As I mentioned to Jack a few days
 JB> ago, you can connect to the Telephone with a cord that has the RJ-11 on
 JB> one end and Alligator clips on the RED and GREEN wires on the other end.
 JB> You can patch in at the wall jack, at the terminal block of the phone,
 JB> or even at the mouthpiece (Unscrew the mouthpiece and clip on to the two
 JB> terminals you find there.)  This last connection will not "hear the dial
 JB> tone" so you will have to blind dial.

You are a genius Jim, and thank you very much!  I used exactly this
setup at a hotel recently, and it worked reasonably well.  I had to
use the mouthpiece, and did have some nasty line noise on a couple
of connections, and had to seriously fiddle with how I dialed (my
terminal program didn't recognize the hotel's dial tone as a dial
tone - and I wanted to use my calling card, etc.) but I was able to
check my mail this way!  I think once school starts for the kids
again, I'll finally be able to get them onto SilentTalk!

Thanks again!

--Kimberly
___
 * PMQWK 1.00b5 * The last word of this tagline is "mispelled"
--
Uucp: ..!uunet!bunker!hcap!hnews!488!Kimberly.Bobrow
Internet: Kimberly.Bobrow@f488.n141.z1.fidonet.org




------



Subject: DEAF CULTURE - PART 2
From: Laurel.Gealt@f201.n273.z1.fidonet.org (Laurel Gealt)
Organization: FidoNet node 1:273/201 - US Telematics, Yardley PA


[This is from the Silent Talk Conference]

I have three main things to say about your messsage.  (1)I do not
feel threatened by the deaf.  I myself am physically deaf (though
not culturally deaf) -- and I know from my own experiences that it
is a HORRIBLE handicap -- and the born deaf do not feel the
terrible loss that I feel simply because they do not know any
better -- they have no idea what they are missing.  (2) When I said
the "human animal", I was not referring to deaf people as animals.
It is a common expression that you must not have enccountered --
and it is used simply to accept the fact the human beings have
instincts just like dogs and cats. (3) About deaf people not
rushing to get cochlear implants -- I have heard the story of a
teenage girl who really wanted to get a cochlear implant, but all
of her deaf friends threatened to stop speaking to her if she did
-- So much for the great tolerance of deaf people.

--
Uucp: ..!uunet!bunker!hcap!hnews!273!201!Laurel.Gealt
Internet: Laurel.Gealt@f201.n273.z1.fidonet.org




------



Subject: Deaf Culture
From: Daniel.Laflin@f98.n374.z1.fidonet.org (Daniel Laflin)
Organization: FidoNet node 1:374/98 - The SCAM, Rockledge FL


[This is from the Silent Talk Conference]

JB>culture, but I seems to me an individual should strive to understand
JB>other cultures, appreciate them for what they offer, but not to use a
JB>given characteristic as a means to exclude others.

  I dont see my self as "Deaf" Culture, if anything I see myself as
  coming if from any culture both English and irish, and those are
  cultures.

--
Uucp: ..!uunet!bunker!hcap!hnews!374!98!Daniel.Laflin
Internet: Daniel.Laflin@f98.n374.z1.fidonet.org




------



Subject: Hatred
From: Daniel.Laflin@f98.n374.z1.fidonet.org (Daniel Laflin)
Organization: FidoNet node 1:374/98 - The SCAM, Rockledge FL


[This is from the Silent Talk Conference]

LG>did not cover the complete story.  I am not hostile to the deaf.  I AM deaf.
LG>My hostility is towards those people who accuse my of not "accepting" the
LG>fact that I am deaf, and looking down on me because I prefer to continue to
LG>belong to the hearing culture that I grew up in (I became deaf as an adult),
LG>and because I do not want to switch over to Deaf Culture -- which I regard a
LG>foreign to me.

  I lost it at 7, more early, yet I always resisted attempts to get me
  to go with other Deaf, I wasnt either against them, it was the
  attempts to get me to join in, where i was uncomfortable, being a
  lipreader and only praticing that and not the time for sign, nor the
  wish for it, since i went thu public school, I had friends who were
  hearing, I enjoyed the assocation for deaf picnics etc, however
  neither did i want to accept that i was deaf, i never felt a part of
  the true deaf < ie: born deaf>, or deaf at very early age, and there
  IS a difference, one who HEARD, who retains memorys of Hearing just
  cant accept this deaf culture thing.

     Im not either being bigoted, i simply am pointing out  that i agree
     alot with you and that those who promulgate deaf culture and are
     hostile to any of us who cant agree simply cant see it our way.

   I do think that those born deaf, or lost hearing veryvery young do
   have a culture in the sense that they have no real idea of what
   hearing is.

--
Uucp: ..!uunet!bunker!hcap!hnews!374!98!Daniel.Laflin
Internet: Daniel.Laflin@f98.n374.z1.fidonet.org




------



Subject: Poll
From: Daniel.Laflin@f98.n374.z1.fidonet.org (Daniel Laflin)
Organization: FidoNet node 1:374/98 - The SCAM, Rockledge FL


[This is from the Silent Talk Conference]

AS>I just wanted you to understand that ALL phone calls are monitored
AS>randomly in the US and I'm sure in other countries too.  There's
AS>not much we can do about that - they do it for reasons that are
AS>understandable but I don't believe the conversations are ever
AS>printed or broadcast.  Even BBSes are monitored...

  ANY monitoring of ANY phone call by way of voice etc can be seen as a
  invasion of privacy at least in florida where we have a strong state
  privacy law.

    With a Relay service you are agreeing to the Monitoring, in the
    sense you agree to, or acknoledge the person relaying can see/know
    whats said, however i doubt that any such agreement extends to
    monitoring beyond that person relaying for you and any such would be
    a violation of florida law.

      Any monitoring of even a voice to voice call, unless court ordered
      is a flat violation of fla law.

     With a BBS, you join, you are TOLD that there ARE NO! private
     communications, no one using a bbs expects any mssgs posted in any
     area to be fully private.

       Relay and voice to voice however are different, It can be other
       states however are not as strong in protecting privacy, here in
       fla its protected in state laws.

        State law is over any telephone rules, bell south and others
        have to obey Fla laws, at least in inttrastate calls.

--
Uucp: ..!uunet!bunker!hcap!hnews!374!98!Daniel.Laflin
Internet: Daniel.Laflin@f98.n374.z1.fidonet.org




------



Subject: I AM DEAF
From: Laurel.Gealt@f201.n273.z1.fidonet.org (Laurel Gealt)
Organization: FidoNet node 1:273/201 - US Telematics, Yardley PA


[This is from the Silent Talk Conference]

I would like to answer all the people who have been complaining
that I hate the deaf.  These are obviously people who have just
started following my messages reccently.  Let me say -- I do not
hate the deaf.  I AM DEAF!!  Before I lost my hearing, I was a
music lover, and sometimes I think of the outdoor summer concerts
in Philadelphia's Robin Hood Dell.  I think of the warm summer
nights and the Philadelphia Ochestra and David Oistrakh playing
Beethoven's violin concerto, and I cry.  Then I think of the sound
of the rain on the roof and the wind in the treetops and the surf
on the beach, and I cry again.  Then I pick up a magazine and I
read some idiot telling me what a wonderful "culture" it is to be
deaf..

--
Uucp: ..!uunet!bunker!hcap!hnews!273!201!Laurel.Gealt
Internet: Laurel.Gealt@f201.n273.z1.fidonet.org




------



Subject: Hatred
From: Bill.Freeman@f24.n3602.z1.fidonet.org (Bill Freeman)
Organization: FidoNet node 1:3602/24 - ADAnet One (tm) Net, Pinson AL


[This is from the Silent Talk Conference]

-> I AM deaf.  My hostility is towards those people who accuse my of not
-> "accepting" the fact that I am deaf, and looking down on me because I
-> prefer to continue to belong to the hearing culture that I grew up in
-> (I became deaf as an adult), and because I do not want to switch over
-> to Deaf Culture -- which I regard as foreign to me.

Hello Laurel,

While I was in Montgomery this past week taking the Alabama Bar, I
watched the weekly Deaf Mosaic on Discovery early on Saturday
morning.

The episode dealt with the issue of cochlear implants - an issue I
have seen you discussing in this forum.

My impression is that many deaf people believe (wrongfully, in my
opinion) that having some sort of technology implanted to help one
better interface to the hearing world in some way makes their
interface to the deaf community less meaningful - less alive. By
the end of the show, a deaf activist was comparing allowing these
implants to continue to the Holocaust. I felt this was all very
Xenophobic, and quite uncalled for. It kept occuring to me that one
is only as alive as they care to be, and that if you wrapped your
entire life up in being disabled in some way, the individual
becomes his own executioner - there is no one else to blame.

I don't know if cochlear implants actually work or not, but seems
they have been highly politicized, and Lord knows why. When I get
the opportunity, I plan to have my left hip replaced, and other
corrective surgery on that leg - not because I have any contempt
for my status as a member of the community of people with
disabilities, but because I want to be the best I can be. Given the
choice of walking well or not walking at all - where the choice is
mostly mine - seems to be an easy choice to me. Is the hip implant
technology bad because it makes my disability less of an obstacle -
I don't see it that way at all.

I'm sorry to hear someone is abusing you because they apparently
disagree with your views. It's been my experience that when people
become all balled up in their cause (enthusiasts or zealots), they
lose their pragmatic and logical abilities. You've always seemed
very pragmatic and logical to me, and I've enjoyed reading tidbits
of your messages. Please don't get frustrated that everyone doesn't
have the "cool" to say what they mean in a way not intended to
offend.

--
Uucp: ..!uunet!bunker!hcap!hnews!3602!24!Bill.Freeman
Internet: Bill.Freeman@f24.n3602.z1.fidonet.org




------



Subject: Deaf Culture
From: Roberto.Ramos@f71.n382.z1.fidonet.org (Roberto Ramos)
Organization: FidoNet node 1:382/71 - BitStream, Round Rock Tx


[This is from the Silent Talk Conference]

Laurel, I'm mainly a lurker here. I'm coming out due to your post
about hate mail you got. If it's real hate mail, Ann is correct in
advising you to ignore the bigot and leave him with his problem. I
do wish to mention something here that you might want to consider.

Three times I witnessed a strange phenomenon. On PCLINK also known
as America Online, I was in a live forum on the Rodney King
incident. One person claimed to be on the jury and "revealed"
truths hidden by the media. The truths were very damning to King
and Blacks in general. I don't like King or anyone who drinks, does
drugs, and beats his woman. I consider such creatures non-humans.
However, this person portrayed something that was false. PCLINK
provides a means to identify a user. The Ctrl-I command showed the
accuser was a Bostonian. The trial was in Ventura, California. When
confronted with this, the accuser came up with a lot of lame
excuses about visiting Mass. etc. It didn't wash. This person only
wanted another group to look bad and worse than bad. It was hate
motivated. He further gave himself away when he referred to Blacks
as apes and monkeys.

Again on PCLINK, a user portrayed himself as Oriental and made
statements that got him TOS'ed or dumped from the network. By sheer
chance, this person's real name, the alias notwithstanding, was
available from the members directory database. By chance again,
another alias of his was available. He was part of an "adult" group
that exchanged gif pictures of themselves with like-minded people.
A fellow PCLINKER downloaded a photo and discovered the TOS'ed
person was a white male. Apparently his seeking to portray an
indecent Oriental was hate motivated as well.

The third incident was a woman who posted multiple racist
statements on an echo carried by a Chino, California BBS. By all
appearances she was Black. However, this proved to not be the case.
The sysop got fed up with her. He dumped her but she logged on
under different names and used other phone numbers. One was her
work phone number. A dumb mistake because the sysop simply gave the
cops the phone numbers. He asked them to end her harassment. When
they asked around, they discovered she was not Black. I don't know
what happened after that. There was an article on her in the papers
there a few years back. It also talked about secret networks run by
skin-heads,neo-nazis, and the like. Even terrorist groups.

I'm saying that BBS' and echoes offer great opportunities for
people to engage in some rather deceitful and hateful activities. A
person may not be what they portray themselves as being. They can
create very false impressions of others as we often have no way of
knowing who we really are dealing with. Potential anonymousity
seems to encourage such behavior. Fortunately, most users are a cut
above such pettiness. On top of this Laurel, you might adopt some
advice Jim Womack gave me when he learned I was going to post you.
He said a person's color has nothing to do with whether they are
decent or indecent. It's the person themselves who are what they
are. He also said he'd be E-Mailing you. That's expensive, I told
him so. I guess he has his reasons. He did say something about
being painted in false hues by non-democratic painters. He talks a
lot in allegorical terms and laughs so much. Sometimes I'm not sure
if he's kidding or not.

Just ignore the non-person as Ann suggests. He or she isn't worth
your time.

--
Uucp: ..!uunet!bunker!hcap!hnews!382!71!Roberto.Ramos
Internet: Roberto.Ramos@f71.n382.z1.fidonet.org




------



Subject: Re: POLL...
From: Ann.Stalnaker@f2120.n124.z1.fidonet.org (Ann Stalnaker)
Organization: FidoNet node 1:124/2120 - Fingers Talk, Irving TX


[This is from the Silent Talk Conference]

 LL> Does the ADA have any requirements for companies that
 LL> have toll free voice numbers, to also provide toll free
 LL> TDD/TT numbers?  Where can I get some information about
 LL> this?

No, because the ADA requires that Relay Services be provided.
There is no need for all companies to provide TT/TDD's except
for any of their HI employees.

However, many businesses have already purchased TT/TDD's and
set aside a dedicated phone line for them which really makes
it nice but they are not required to do so if there is a state-
wide Relay Service available.

I've been able to obtain quite a few 800 toll-free TT/TDD
numbers via the AT&T TT/TDD Operator (OSD or is it OSCD -
Jack would probably know more about this than I do even though
I do use the 1-800-855-1155 number frequently!)

--
Uucp: ..!uunet!bunker!hcap!hnews!124!2120!Ann.Stalnaker
Internet: Ann.Stalnaker@f2120.n124.z1.fidonet.org




------






                                ******

                  End of Issue # 2865 of the Handicap Digest

                                ******
Comments: Gated by NETNEWS@AUVM.AMERICAN.EDU