"Some AIDS Advocates Now Question Need for Special Services"
by SHERYL GAY STOLBERG
NEW YORK -- Behind the swinging glass doors that welcome visitors to the Gay Men's Health Crisis is a world where HIV 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 HIV, 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 GMHC executive director Mark Robinson, 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 of 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 HIV.
Some people are growing increasingly uncomfortable with government's setting aside money for doctors' visits, shelter and drugs for people with AIDS while not operating 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 HIV positive. It makes no sense."
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," he 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 HIV patients. But 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 the 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 the 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 may soon turn 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 from sophisticated treatment advice to 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," said playwright Larry Kramer.
He founded the 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 HIV-status is a nonevent."
Craig Gibson, 31, of the Bronx, is one of 10,000 people a year who seek services there. Several days each week, he 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, according to Robinson.
"We still need this extraordinary short-term help," he said.
But he 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.
Robinson, a former accountant, said the building was designed so that any other business could easily move in. The lease is relatively short, for 15 years. The agency, he added, has realized that it cannot afford to be all things to all people. Until recently, Robinson said, "anybody with HIV 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 Robinson and others say they believe that 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," 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, 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 HIV.
If Congress enacts the plan, AIDS spending would increase 4 percent over last year, and 70 percent over 1993, when 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 HIV-negative people to help them stay negative," said Dr. Michelle Roland, who treats indigent patients at San Francisco General Hospital. Many of her patients are drug abusers, people at high risk.
"The truth is," Dr. Roland said, "we have a lot more access to resources for HIV-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, 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 Delaney was correct in pushing for universal health care. "We've got to form an alliance with these other diseases," Ammann said, "and say none of us is going to get adequate health care the way the system is going."
But others call Delaney naive. "It's interesting to muse about what he says," said 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 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."
From the very inception of federal consideration of ANY funding and/or recognition of the HIV/AIDS epidemic, we have been tagged as being treated "special" (translation for the late 90s as "exceptionalism"). Let's address a deeper question -- the inherent internalized phobia and guilt that underlies these comments -- reading between the lines, AIDS exceptionalism, when agreed to and mouthed by the HIV/AIDS community is the moment when we agree that we do not deserve to be treated as equals and that we should stop fighting and that all the efforts we have put into saving our own lives and those of our friends and communities should never have happened because we don't deserve to be treated well. AIDS exceptionalism, at its core, reinforces the notion that people with AIDS do not deserve health care or medical care or anything.
Let's be clear here -- congress voted away universal coverage. Congress voted away health care reform. Remember? We fought them and they voted.
Now, just for clarification's sake about HIV's ability to work in coalition, who knows of our work on medicaid/medicare or even the Kassebaum/Kenedy bill? Yelling fire in a movie theater to see if people run is irresponsible and unethical and shameful.
Remember the idea to block grant Medicaid? We fought that in coalition with other chronic and life-threatening diseases, and we won. Remember the idea to block grant HIV, STDs and TB? We fought that in coalition and we won. Remember per-capita caps this year in Medicaid? We fought that in coalition and we won. Absent the truth, the NY Times piece plays like Tom Coburn's and Chandler Burr's atemtps to strip AIDS from its rightful gains. And that is wrong.
For the record, what actually happened in the national health care debate of 1994 was that the Democrats (who were the ONLY ones pushing reform) stalemated in the late summer/early fall over how to proceed and the whole effort died. Congress as a whole never did actually vote on a bill. There were two bills that were voted out of committee at the time, but they never came to a vote on the floor: one was the "Mitchell-Gephardt" bill (backed by over ~140 members of Congress) which reflected a version of Clinton's managed competition scheme (keeping the private insurance industry in the game, and in fact, turning over the entire system to a handful of big, national managed care companies); the other bill was the "McDermott/Conyers-Wellstone" bill (backed by over 100 members of Congress) which would have set up a single-payer national health insurance program like every other industrialized democracy has (and would have eliminated the private insurance industry from the game, set fees and global budgets for doctors and hospitals, and set up a process of negotiation over payment for drugs, durable medical equipment, "sick room" supplies, etc. -- in short, actually controlled costs and industry profits while providing universal coverage.)
Yes, the other side won, and it was the Republicans as shills for the vested special interests who make a (literal) killing off the American health care system. The Times also had another front-page, above-the-fold story recently (ran on election day) about how the Republicans are once again blatantly working hand-in-glove with the insurance/managed care industry, this time to kill new efforts to regulate managed care. One quote attributed to Senate Majority Leader Trent Lott stated something to the effect of, "It's time for the industry to get off their butts and their wallets. This is war, and it's time we treated it as such." (I couldn't think of a more poignant argument for campaign finance reform --AIDS as a politcal crisis doesn't exist in a political vaccuum, afterall.)
The Republicans are now branding the effort to rein in managed care as "Clinton Health Care II", and claim that these proposals are a backdoor attempt to achieve national health care reform. (If only!) The reality of course is that even if these reforms are passed in tact, no one will necessarily get new coverage or necessarily be able to keep current coverage (despite Kennedy-Kassebaum, which creates so many hoops to jump through it's nearly worthless), the cost of health care coverage will NOT be controlled, comprehensive coverage will not be guaranteed, etc., etc. --all of which must be done if we are to truly reform the American health care system to provide comprehensive quality care to ALL Americans (witness 42 million currently uninsured, and another 50+ million under-insured), and --most important to politicians-- control costs (i.e. Medicaid and Medicare).
Remember the old facist phrase: "Divide and conquer"; THAT is the hidden subtext of the AIDS exceptionalism argument which just happens to serve the special interests' agenda.
Another thing to always remember about the New York Times. It represents the voice of the Establishment (with a capital E), and is part of the "permanent government" both here in New York and nationally (and even internationally). And when a story makes it to to the front page, especially above the fold, it's purpose is to carry out an agenda, as much as to inform readers.
Who's agenda is being carried here, in the argument over 'AIDS Exceptionalism'? (God, I HATE that term!)
I think what ultimately galls me about the NY Times article is the belief that in order for people with disabilities to get what they deserve, AIDS has to lose.
Who in their right mind does NOT think that we have shitty health care in the U.S.? Who in their right mind does NOT think health care is a right? Tell us something we do not know, point us in a direction we have NOT yet gone.... We all agree we need more. Who proposes AIDS cuts off its nose to spite itself because the health care system is rotten in the U.S.?
It is a saddening moment when someone spouts off nonsense to a FEABLE reporter, and makes it to the front page of the NY Times.
No one diagrees that we need beter health care. What we do believe, however, is that the meager gains for people with AIDS have been hard fought, tough and well-deserved. and insufficient, insufficient, insufficient. There are adap waiting lists, formularies that cap enrollment, people with HIV who can not even see a doctor who can diagnose PCP, amazing gaps in social and ancillary services, not to mention almost NO secondary prevention programs. No, AIDS does not dseserve less, and no, AIDS should not apologize for taking care of its community.
Remember that Clinton and Congress have cut our funding (they call it the Balanced Budget agreement) and in spite of that, we fought and won a $280 million dollar increase for HIV programs. Should we give that money back? Over my dead body.
In case anyone has forgotten, we lobby HARD for increases for ALL biomedical and prevention science at the NIH, not exclusively for AIDS. We've been doing that for three years now. And we lobby hard for STD moneys too. For years.___oooooh...pissed, tired and cranky.....
A more paranoid interpretation of this point of view might suggest that profit-based health bureaucracies (drug companies, corporate health care providers, insurance companies who want the leverage to jack up rates -- and the AIDS advocates paid to sit on their advisory boards) don't even want an AIDS cure, lest they lose a valuable cash cow. (No, I'm not accusing of Jim Graham personally of such intentions and profiting therefrom, only of not wanting to talk about it.)
We do know, however, that our mainstream gay and AIDS lobbies, from HRC to National Gay & Lesbian Task Force (NGLTF) to AIDS Action Council, failed to campaign for either single payer universal health coverage (i.e., Senator Paul Wellstone's bill, back in 1993 when health care was the national debate) or for the AIDS Cure Act, a proposal for a comprehensive national effort that was earlier called the Barbara McClintock Act, and which Bill Clinton promised to support in his 1992 campaign and later forgot about. (Shame on HRC for honoring the duplicitous Mr Clinton at its annual dinner on November 8.)
In summary, the rejection of universal coverage, even as a long range goal, by folks like Mr Graham represents a tragic capitulation to corporate interests, whether or not the same corporations have actively influenced mainstream activists and lobbyists to dismiss single payer.
The fact is that activists in ACT UP and elsewhere on the margins have spent years clamoring for universal coverage. The steering committee of the 1993 March On Washington for Gay, Lesbian, and Bisexual Rights planned a major demonstration for universal coverage at the Capitol on the day after the March (April 26). At the last national steering committee meeting during the first weekend of February, 1993, the steering committee, under pressure from NGLTF and HRC, decided to sever itself from the "Health Care is a Human Right" demo, to the consternation of many of us who were there that weekend. The reasons given included the need for queers not to place such demands on our new gay-friendly President and the new Congress, lest we risk our hard-won access to the White House.
The demo took place as planned on April 26, but with a few hundred participants and 43 arrested for civil disobedience it was vastly smaller than the counterpart demo at the 1987 March On Washington, which drew thousands of queers to the front of the Supreme Court and at which over 600 were arrested in protest of the Court's Harwicke versus Georgia sodomy decision. The 1993 March in general seemed more of an elaborate, celebrity-obsessed party than a powerful occasion for influencing the powerful, and not one speaker on the rally platform demanded universal health care. Speakers only mentioned AIDS in sympathy and commemoration, not in challenge to the powerful.
We won't gain single payer quickly, of course, but it would be a more valuable use of our time and talents than arguing, as reported in the above-quoted New York Times article, whether AIDS is still a crisis or whether AIDS deserves "exceptional" status and requires that those with HIV get more services than do sufferers of other diseases. ____>End of rant<
ABC NEWS 20/20 CRAP: AIDS Gets Too Much Money, Oct. 11, 1999
MEDIA FRENZY: Nushawn Williams