[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.

                          ____________________