[Congressional Record Volume 152, Number 125 (Friday, September 29, 2006)]
[Senate]
[Pages S10576-S10578]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
RYAN WHITE CARE ACT
Mr. COBURN. Mr. President, it is my understanding this is the
minority's time. Senator Byrd is coming to the floor, and they
graciously granted me time to talk.
I wish to address a couple of issues that were raised by the Senator
from New York as to the accuracies of the claims that have been made. I
think it is real important.
I don't doubt for a minute that she genuinely cares for everybody who
has HIV in this country. I think she does. I think her perspective on
the challenges that face us as a nation in terms of finances is
different from mine, and I will grant her that as well. But some of the
claims made are not really accurate.
I ask unanimous consent to print in the Record an article from the
New
[[Page S10577]]
York Times stating specifically money was spent on walking dogs for
HIV/AIDS patients, art classes, tickets to Broadway shows, free legal
services, haircuts, things that other people can't do in any other
place other than New York and California.
There being no objection, the material was ordered to be printed in
the Record, as follows:
[The New York Times, November 12, 1997]
New Challenge to Idea That `AIDS Is Special'
(By Sheryl Gay Stolberg)
Behind the swinging glass doors that welcome visitors to
the Gay Men's Health Crisis is a world where H.I.V. is not
just a deadly virus, but also a ticket to a host of unusual
benefits.
At the center, the nation's oldest and largest AIDS social-
service agency, almost everything is free: hot lunches,
haircuts, art classes and even tickets to Broadway shows.
Lawyers dispense advice free. Social workers guide patients
through a Byzantine array of Government programs for people
with H.I.V., and on Friday nights dinner is served by
candlelight.
The philosophy underlying the niceties and necessities is
``AIDS exceptionalism.'' The idea, in the words of Mark
Robinson, executive director of the organization, is that
``AIDS is special and it requires special status.'' That is a
concept that has frequently been challenged by advocates for
people with other diseases.
Now some advocates for people with AIDS are quietly
questioning it themselves.
With death rates from the disease dropping for the first
time in the history of the 16-year-old epidemic, the
advocates suggest, it is time to re-examine the vast network
of highly specialized support services for people with H.I.V.
Some people are growing increasingly uncomfortable with the
fact that the Government sets aside money for doctors'
visits, shelter and drugs for people with AIDS but that it
does not have comparable programs for other diseases.
``Why do people with AIDS get funding for primary medical
care?'' Martin Delaney, founder of Project Inform, a group in
San Francisco, asked in an interview. ``There are certainly
other life-threatening diseases out there. Some of them kill
a lot more people than AIDS does. So in one sense it is
almost an advantage to be H.I.V. positive. It makes no
sense.''
Mr. Delaney, a prominent voice in AIDS affairs since the
onset of the epidemic, is calling on advocates to band with
people working on other diseases in demanding that programs
for AIDS be replaced with a national health care system.
He complained that organizations like the Gay Men's Health
Crisis had been ``bought off'' by the special status given to
AIDS.
``We took our money and our jobs,'' Mr. Delaney wrote in
the Project Inform newsletter in the summer, ``and we dropped
out of the national debate.''
That criticism has not won many fans within ``AIDS Inc.,''
as some call the cottage industry of agencies that care for
H.I.V. patients. But Mr. Delaney's article, ``The Coming
Sunset on AIDS Funding Programs,'' has set off an intense
debate.
``I think Delaney knows that he is putting out a
provocative, stimulating kind of discussion,'' said Jim
Graham, executive director of the Whitman-Walker Clinic in
Washington, a counterpart to Gay Men's Health Crisis. ``This
is the whole discussion about AIDS exceptionalism. I think
AIDS is an exceptional situation. AIDS is caused by a virus.
That infectious virus is loose in America. And when you have
a virus, an infectious situation such as this, it takes an
exceptional response.''
Yet many people involved with AIDS say some change is in
order. Many programs created in response to the epidemic were
intended as stopgaps, to help the dying in the health
emergency. Some of the money that pays for free lunches at
Gay Men's Health Crisis, for instance, is from the Federal
Emergency Management Agency, which usually works on natural
disasters like hurricanes and earthquakes.
But it is becoming clear that the AIDS crisis is long term.
New treatments appear to be turning the disease from a
certain death sentence to a chronic manageable illness.
Accepting the projection that the epidemic will last for at
least another generation, advocates say, the Government and
private agencies need to take a hard look at spending in the
coming years.
``We are not going to die, at least not all of us, and at
least not all so soon,'' said Bill Arnold, co-chairman of the
ADAP Working Group, a coalition in Washington that is
lobbying the Government to add money to its AIDS Drug
Assistance Program. ``A lot of us are saying that the AIDS
network or AIDS Inc. or whatever you want to call it, this
whole network that we have created in the last 15 years,
needs to be reinvented. But reinvented as what?''
That question is provoking considerable anxiety among
employees at the estimated 2,400 service agencies in the
United States, several hundred of which are in New York City.
The agencies offer an array of services including
sophisticated treatment advice and free dog walking. Although
most are tiny, some have grown into huge institutions
financed by Federal, state and local government dollars, as
well as contributions.
Critics say the organizations cannot possibly re-examine
themselves because they have become too dependent on the
Government.
``They have all become co-opted by the very system that
they were created to hold accountable,'' Larry Kramer, the
playwright, said.
Mr. Kramer founded Gay Men's Health Crisis in 1981, but has
long been critical of the group. ``It's staffed with a lot of
people who have jobs at stake,'' he said.
With 280 employees and 7,000 volunteers, the program is the
biggest and busiest agency of its kind. For many with human
immunodeficiency virus, the organization and its lending
library, arts-and-crafts center and comfortably decorated
``living room'' offer a home away from home, a place where,
as one participant said, ``your H.I.V. status is a
nonevent.'' For some, the hot lunches often provide the only
nutritious meals the patients get all day. For others, they
are simply a source of community.
Craig Gibson, 31, of the Bronx, is one of 10,000 people a
year who seek services there. Several days each week, Mr.
Gibson goes to the living room to play cards after lunch.
``You come here, you see your friends,'' he said one
afternoon. ``Today they had a great chicken parmesan.''
A walk through the lobby shows the power and success of
AIDS philanthropy. A huge plaque in the entryway lists dozens
of donors who have contributed $10,000 or more, including
three who have given more than $1 million. Even so, 19
percent of the $30 million annual budget comes from
Government sources, Mr. Robinson said.
``We still need this extraordinary short-term help,'' he
said.
But Mr. Robinson said he was aware that the financing might
not last forever. Even as the organization expands, it is
doing so with an eye toward eventually scaling back. It just
spent $12.5 million to renovate its new headquarters in a
simple but expansive 12-story brick building on West 24th
Street.
Mr. Robinson, a former accountant, said the building was
designed so that any other business could easily move in. The
lease is relatively short, 15 years.
The agency, he added, has realized that it cannot afford to
be all things to all people. Until recently, Mr. Robinson
said, ``anybody with H.I.V. or AIDS could walk into our
advocacy department, and virtually anything that was wrong
with their life was addressed.''
``If they were having problems with their landlord,'' he
said, ``we would deal with it. If they needed an air-
conditioner, we would deal with it. Now we are really trying
to focus on what is specifically related to AIDS.''
To understand why Mr. Robinson and others say they believe
AIDS deserves special status, a person has to go back to the
response to AIDS in the days when it was known as the ``gay
cancer.'' The Government and the rest of society all but
ignored the illness, forcing the people who were affected--by
and large homosexuals--to fend for themselves.
``The original reaction,'' Mr. Arnold said, ``was in
response to: `This is not our problem. We don't like you. Go
away and die.' ''
``By the time you have got 200,000 to 300,000 people
dead,'' he said, ``they all have friends. They all have
relatives. That's a lot of people impacted. So now you have
some critical mass.''
That mass has translated into a political force--and
significant Federal money. In his budget proposal for 1998,
President Clinton has asked Congress to allocate more than
$3.5 billion for AIDS programs, including $1.5 billion for
AIDS research at the National Institutes of Health and $1.04
billion for the Ryan White Care Act, which provides medical
care, counseling, prescription drugs and dental visits for
people with H.I.V.
If Congress enacts the plan, AIDS spending would increase 4
percent over last year, and 70 percent over 1993, when Mr.
Clinton took office.
In a paradox, some doctors say the array of services makes
it harder to care for people whose behavior puts them at risk
for AIDS, but who are not yet infected.
``We're trying to figure out how to provide services to
H.I.V.-negative people to help them stay negative,'' said Dr.
Michelle Roland, who treats indigent patients at San
Francisco General Hospital. Many of Dr. Roland's patients are
drug abusers, people at high risk.
``The truth is,'' she said, ``we have a lot more access to
resources for H.I.V.-positive people for drug treatment,
education and housing.''
While advocates for people with other diseases often lobby
vociferously for more money for research, the notion of
exceptionalism--that a particular illness deserves special
Government status--is unique to AIDS, and it is generating a
backlash.
For years, the American Heart Association has gone to
Capitol Hill budget hearings with charts showing that more
research money was spent per patient on AIDS than on heart
disease. Advocates for people with Parkinson's disease have
done the same. It will not be long, Mr. Delaney argues,
before people with those and other diseases follow suit,
demanding Ryan White-style programs for themselves.
Some authorities, including the president of the American
Foundation for AIDS Research, Dr. Arthur Ammann, said Mr.
Delaney was correct in pushing for universal
[[Page S10578]]
health care. ``We've got to form an alliance with these other
diseases,'' Dr. Ammann said, ``and say, None of us is going
to get adequate health care the way the system is going.''
But others call Mr. Delaney naive.
``It's interesting to muse about what he says,'' said Mr.
Graham of the Whitman-Walker Clinic. ``But it's both
undesirable and impossible. So what's the point of talking
about it?''
Naive or not, in challenging exceptionalism Mr. Delaney has
clearly broken a taboo.
``We sort of question it among ourselves behind closed
doors,'' said Mark Hannay, a member of the New York chapter
of Act Up, the AIDS Coalition to Unleash Power. ``Like, isn't
this nice, but we're the only ones getting it.''
Mr. COBURN. Mr. President, another key fact: New York State alone
spends $25 million a year just on administration of their Ryan White
title I funds. That is more money on administration than 38 other
States combined, 38 other States spend total on all of it.
The Senator from New York showed a chart on AIDS cases and spending.
Well, she was right. It was about AIDS cases, but it wasn't about AIDS
and HIV-infected individuals. When you look at it in terms of those
infected with HIV rather than AIDS cases and when you look at AIDS
cases, AIDS cases are based on those who have had AIDS in the past and
those who have AIDS today but does not reflect the epidemic.
I also ask unanimous consent to have printed in the Record an article
on the housing and rooming in New York for people who are no longer
alive but for which they paid for a number of months, a large number of
people, where money was wasted.
There being no objection, the material was ordered to be printed in
the Record, as follows:
HIV/AIDS Shelter Costs Challenged
(By Ellen Yan)
July 5, 2005.--The [New York] city agency that secures
temporary shelter for indigent people with HIV/AIDS shelled
out $2.2 million in questionable payments over 2\1/2\ years,
partly to rent rooms listed to people who had died, the city
comptroller charged in an audit released yesterday.
The Human Resources Administration paid $182,391 for rooms
listed to 26 people up to two years after their deaths, with
one housing provider getting 76 percent of the money,
$137,920, said the report from Comptroller William Thompson
Jr.
Auditors said many of the problems stemmed from the
agency's failure to review its own data and client files
before making payments to housing providers. In the audit,
Thompson's office looked at five housing facilities as well
as payments and records made from July 2002 to December 2004.
Among the findings, auditors said, $1 million went to
housing providers for residents who did not sign registration
logs; $456,292 was paid for overnight stays on or after
clients' last days of occupancy; $417,463 in payments for
people not in the agency's new database; $118,185 in double
billing; and a $20,030 check to one vendor who submitted a
$2,030 bill, an overpayment the agency said it will correct.
HRA spokesman Bob McHugh said yesterday that agency heads
had not seen the comptroller's final report.
``For whatever reason, they chose to release it on the
Fourth of July, so we're not going to comment . . . until we
get a chance to review it,'' McHugh said.
In letters sent to the comptroller's office, HRA disagreed
with many findings. In a June 15 letter, the agency said it's
still waiting for Thompson's office to provide all the
details so it can double-check the findings.
For example, officials replied in letters to the
comptroller's office that at least three people were
erroneously listed as dead in Social Security records.
In addition, the agency wrote, weekly registration logs are
not final proof of whether housing was provided, because
people with AIDS may have been too sick to sign.
The agency also accused Thompson's office of giving an
``unbalanced'' picture of housing conditions by concluding
the 91 units checked were ``generally in satisfactory
condition'' but then rating 25 of them as ``unsafe and
unsanitary.''
The housing agency agreed with most of the audit's
recommendations, including checking vendors' bills against
client and Social Security records.
Mr. COBURN. Mr. President, it is disingenuous to use AIDS cases alone
to make comparisons. The reason for that is because this is an
epidemic. And thanks to the wonderful presence of modern-day medicines,
medicines are preventing people who have HIV from ever contracting the
fullblown AIDS syndrome.
The whole idea behind the bill that Senators Enzi and Kennedy have
offered and that has passed the House with over 300 votes is to have
the money follow the epidemic. That is what this bill does. There are
small declines in the amount of money per person in New York so that
marked increases in funds are available for those in the
nonmetropolitan areas throughout the South.
We know the face of the epidemic is changing. That epidemic says that
we ought to be caring for them. The Senator's answer is just spend more
money. But last year, when I offered an amendment to add $60 million to
the ADAP by cutting pork projects, she voted against it. So you can
come to the floor and claim you are for spending more money, but if you
don't want to cut out a Japanese garden which is for a Federal
Government building which was $60 million so you can put $60 million
into lifesaving drugs, some would claim that is not real support for
more money.
The final point I wish to make is that last year, New York received
over $1.4 billion in earmarks, earmarks that aren't a priority,
earmarks that aren't necessarily needed in a time of war. There was no
offer to cut back on the earmarks for the State of New York to pay for
greater care for AIDS patients. Some want to have it both ways:
earmarks in the bill that are going to come back to us this November
for New York, $600,000 for exhibits, $500,000 for New York City. We
have to get a hold of priorities. Is HIV/AIDS a priority? Yes. And can
we put more money into it? Yes. But we ought to be making the tough
choices.
So I would say to my colleague that I have great respect for her
desire to make sure everybody is cared for, but I also have a desire to
make sure our children are cared for. And we need to pass this bill. It
is a fair bill in the long term. We will work hard to make sure the
moneys are there. We will work hard.
A final point. This new bill directs that 75 percent of the money
ought to go to treatment. Less than 50 percent of the money in New York
goes for treatment. Fifty percent goes for other things. So we have
people living in South Carolina, North Carolina, Oklahoma, and in other
States who are now on a drug waiting list who can't get treatment, and
we are quibbling about $300 in other programs--not treatment--other
programs these people won't ever have any access to, but yet they can't
get drugs. Is it a geographical disagreement? Yes. Everybody who is
talking on this is for taking care of this problem. This is a great
way. This bill is a good start.
Here is the other problem. If we don't pass this bill before October
1, lots of people in New York and in other States will be hurt because
of the legislation in the previous Ryan White Act in terms of forcing
the redistribution of this. It is my hope we can work this out.
I appreciate the Senator's sentiments in terms of her caring for
those with HIV, but I know, in fact, what has been offered and worked
and gotten through the House is a good approach that takes a little bit
from New York, takes a little bit from San Francisco, and gives
lifesaving drugs. It doesn't take any lifesaving drugs away from New
York or San Francisco or California but gives lifesaving drugs to the
people who don't have them today. We ought to be about doing that.
I yield the floor.
The PRESIDING OFFICER. The Senator from West Virginia is recognized
for 45 minutes.
____________________