POLITICIAN, HEAL THYSELF: With the AIDS Cure Act in Trouble, Who Will Cure the Curers?

Greater than the tread of mighty armies is an idea
whose time has come.--Victor Hugo
SUPPOSE THEY GAVE A CURE FOR AIDS AND NOBODY CAME.

After nearly 10 years of largely dead-end research, a handful of toxic drugs of dubious merit, and a steady string of gloomy international AIDS conferences, the dawning of the 1990s seemed to have brought a new buzz to the air. Even old rivals in the AIDS-politics game suddenly found themselves in agreement: What AIDS needed was a completely fresh approach--new ideas, new ways of looking at the disease, a revitalization of research efforts, and a reassessment of whether AIDS money was actually going where it could do the most good.

In New York and in other AIDS centers across the country, a coalition of AIDS activists set out to provide exactly the fresh, innovative ideas that everybody was talking about. During President Clinton's campaign, they pointed out, he had promised a "Manhattan Project for AIDS," but the plan had gone no further than election-year rhetoric. They would provide the missing blueprint.

After two years of intensive national meetings, the AIDS Cure Project (originally called the Barbara McClintock Project to Cure AIDS) was born. The Project was a radical, even idealistic approach to the development of a cure for AIDS. It skewered pharmaceutical companies for their role in delaying AIDS research and attacked the NIH for its continued failure--despite 11 years of effort and billions of dollars in spending--to come up with so much as a workable model of AIDS pathogenesis.

The Project's advocates demanded a coordinated, highly focused effort to find a cure for AIDS--what they dubbed "a new initiative"--that would be modeled on the Manhattan Project (which developed the atom bomb) and the Apollo Project (which put the first men on the moon). In May 1994, the AIDS Cure Act was introduced into Congress by Representative Jerrold Nadler (D-Manhattan). And there it has languished.

Far from rallying behind the AIDS Cure Act's visionary reforms, in fact, the AIDS establishment--what not a few activists have cynically dubbed "AIDS, Inc."--is doing everything it can to make sure the AIDS Cure Act doesn't get far off the ground.

TO UNDERSTAND THE IMPETUS BEHIND THE AIDS CURE PROJECT, IT'S
useful to know something about Barbara McClintock, the Project's original namesake. A Nobel Laureate in genetics who died in 1992, McClintock spent her entire career studying corn. During her life, McClintock was perhaps most notable for two attributes: First, beginning in the 1930s--decades before the discovery of DNA--McClintock developed a series of novel theories of gene behavior that remain the cornerstone of modern genetics. And second, McClintock's work was so far outside the scientific mainstream that it met almost universally with hostility and derision at the time it appeared. In fact, although McClintock's most dramatic discoveries came in the early 1940s, she wasn't awarded a Nobel Prize for that pioneering work until 1983--a long-delayed vindication for a scientist whose colleagues had openly called her a "kook."

McClintock's approach, say AIDS Cure Project organizers--intense commitment coupled with a focus on divergence rather than on statistical norms--is the only appropriate model for AIDS research in the 1990s.

With a philosophy like that, it's no surprise that the AIDS Cure Project's reforms, like McClintock's work, fall outside the mainstream. In specific, the Project calls for the establishment of a research agenda that emphasizes a focused, basic-science effort to answer essential questions about AIDS pathogenesis; gives the Project broad legal powers to commandeer any other research project, after compensating the parties involved, if all other efforts to accelerate development of a promising drug have failed; and requires researchers to give up honoraria, stock dividends, lucrative consulting contracts with pharmaceutical companies, and income from any source that poses a conflict of interest with the Project's work (researchers typically take out patents on cell lines, drugs, and tests that they develop, for example; the HIV-antibody test alone brings some $11 million a year in royalties to its patent holders).

Given reforms that would literally mean a revolution in medical research, it's also no surprise that the first line of resistance to the Project is often philosophical. A certain battle-weary Realpolitik, that is, surfaces quickly in the face of the AIDS Cure Project's optimistic, even utopian goals--and of its inherent critique of the status quo. To put it another way, the Project inspires conflict over two basic principles: the nature of reality and the likelihood of change.

In a 1990 Op-Ed piece in the New York Times, Larry Kramer, co-founder of Gay Men's Health Crisis and of ACT UP, described the need for a "Manhattan Project" for AIDS in characteristically blunt terms. "Ten years into this plague," Kramer wrote, "the Federal agencies dealing with AIDS are mired in such bureaucracy that it is next to impossible for them to respond to the crisis.... Paths of least resistance are the chosen norm. Imagination is not encouraged and exchange of vital information is often nonexistent.... The bureaucracy is so byzantine, nobody can or has to make a decision. Research is delayed not only by a lack of any coherent plan and mature guidance, but also by a lack of first-rate personnel.... Vital studies that many assume are being done are not. Conflict of interest is rampant...."

Tony Davis, a member of the New York AIDS Cure Project Working Group, brought Kramer's analysis up to date in a recent interview. "I have little faith in the NIH's ability to respond in any kind of emergency fashion (to AIDS)," he said. "What they have to offer are new improved deck chairs on the Titanic. Ergonomic deck chairs."

But wait. Massachusetts Congressional Representative Barney Frank bristles when asked about the criticisms Project activists have leveled at AIDS researchers. "These are well-motivated, decent people," he insists. "Frankly, I'm a little skeptical of those whose interest in this disease came only because they got the disease, and are then critical of people who've spent their whole lives and careers trying to find ways to cure disease."

Professor Ed Tramont, Director of the Medical Biotechnology Department at the University of Maryland School of Medicine, and formerly the head of Infectious Diseases (including AIDS) for the U.S. Army, is also leery of proposals that tamper with the existing federal structure. "The perception that there is an uncoordinated or disjointed research agenda (at the NIH) is not true," he says. "If you look at what the NIH has put together, it's a network, with research going on in many different areas. Therefore, it has seeded the landscape and made it more probable that something good will happen eventually. That doesn't mean there aren't problems, but I don't think that the criticisms I hear from (various) groups are well founded. I think progress (on a cure) has been extraordinary, to be honest."

Discussions of the Project's specific provisions, meanwhile, tend to turn subjunctive: If scientists had to give up conflicts of interest, might they stop doing AIDS research altogether? Wouldn't pharmaceutical companies abandon AIDS if they knew the Project could step in and demand that they speed up their work?

And Mike Shriver, director of Mobilization Against AIDS, one of San Francisco's most powerful AIDS-service organizations and one of the Project's most vocal critics, argues that the Project could never realistically be funded. Says Shriver, "The Congressional will on HIV and AIDS right now is at an all-time low. In terms of the larger, philosophical approaches of the Project, we absolutely agree. But it's a practical question. There simply isn't going to be any new money for AIDS."

In other words, to sum up the Frank's, Tramont's, and Shriver's positions: We don't need the AIDS Cure Project and, even if we did, it could never happen.

New York-based AIDS Cure Project organizer Mark Milano has been fielding criticisms like these for nearly two years. "In terms of comments that (the Project) won't work," he says, "I agree that it's a big question mark. But the risk that this won't work is a risk we have to take. Given (the operation of) the NIH and AIDS research the way it is now, we won't have a cure for 50 years. We have to try something new. I can't guarantee that the AIDS Cure Act will work. But I can guarantee you that the current system won't."

Ironically, even Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases at NIH, might agree with Milano's assessment. In a June 1993 interview for the Journal of the American Medical Association, Fauci summarized the search for an AIDS cure this way: "On a scale of 10," he said, "we're only at a '4'."

ACCORDING TO AIDS CURE PROJECT SUPPORTERS, COMMUNITY
awarness--and a sense that those affected by AIDS are entitled to demand sweeping changes from government--is what is missing in the push for the Cure Act. Huge AIDS-service organizations like Gay Men's Health Crisis in New York, AIDS Project Los Angeles, AIDS Action Baltimore, and the San Francisco AIDS Foundation, among others, have duly met with spokespeople for various regional Cure Project working groups--and have just as duly issued polite statements supporting the AIDS Cure Project's "spirit" but refusing to endorse it. In most cities hard hit by AIDS, moreover, grassroots debate on the Cure Act has yet to take place. Even gay-community newspapers, traditionally on top of anything new in AIDS, have largely ignored the Cure Project.

San Francisco AIDS Cure Working Group member Michael Belafontaine thinks that's no accident. He charges that powerful mainstream AIDS organizations across the country are actually stifling debate on the Cure Act.

"I came from Portland, Maine to be an AIDS activist," he says, "thinking that to push AIDS legislation in SF would be the easiest thing I have to do. But we can't even get (the AIDS Cure Act) out to the community to create a dialogue or grassroots movement because the people with access won't allow it. If this community said, 'Enough is enough. We are doing this,' we'd have the AIDS Cure Project. Instead, mainstream AIDS organizations have become a new strata that activists have to push through."

Mark Milano is perhaps no less frustrated, but he couches his criticisms in more moderate terms. "We understood from the beginning that mainstream AIDS organizations would have a tough time endorsing this," he says. "It's a radical proposal that calls into question the entire current structure--which they are deeply ensconced in."

Many national AIDS organizations, it is true, simply have their irons in other fires. The New York-based Treatment Action Group (TAG), for example, has labored for years on various NIH reforms and its members now occupy key positions at many levels of federal AIDS bureaucracy (including on the National Task Force on AIDS Drug Development, established in early 1994 by HHS Secretary Donna Shalala).

San Francisco's Project Inform, at the same time, has been advocating its own "mini-Manhattan" project through former AIDS "czar" Kristine Gebbie's office, as well as a series of Office of AIDS Research reforms that have yet to take effect.

To its credit, Project Inform is virtually the only national AIDS-service organization to produce an analysis of the Project for public consumption (a two-page, point-by-point article in the June 1994 issue of its newsletter, PI Perspective), but PI still found more to dislike than to like in the Project and branded it "unworkable." The article ended with a plug for the Accelerated AIDS Research Initiative, a 1993 model that PI was instrumental in developing.

In the Washington office of California Representative Nancy Pelosi, meanwhile, whose district includes San Francisco and whose support is considered crucial by local Cure Project organizers, legislative aide Steve Morin explains that Pelosi's refusal to co-sponsor HB 4370 or to endorse the AIDS Cure Project is due to the fact that "We have significant opposition in our district from the San Francisco AIDS Foundation, Mobilization Against AIDS, and Project Inform."

Officially, however, PI, the San Francisco AIDS Foundation, and Mobilization Against AIDS say they don't "oppose" the AIDS Cure Project at all--they just don't endorse it. Still, in August 1994 the executive directors of all three organizations signed a widely circulated "Open Letter to the Community" that criticized the Project and attacked local working group members for being disruptive and threatening at a public meeting.

In San Francisco, that's AIDS politics as usual. But while opposition to the Cure Project clearly exists in that city, there is also considerable support. In fact, San Francisco endorsers of the AIDS Cure Project include the Early Advocacy and Care for HIV Program, the Executive Directors of the Black Coalition on AIDS and of the Lawyers' Committee for Civil Rights, both chapters of ACTUP, the Green Party, the Metropolitan Community Church, Social Justice for Street Youth, the Gray Panthers, Haight-Ashbury Free Clinics, the entire San Francisco County Board of Supervisors, and Mayor Frank Jordan.

For Morin, however--and, evidently, for Pelosi--that's not enough to tip the balance. And so, Morin repeats patiently, "There just isn't consensus in favor of (the AIDS Cure Act) in San Francisco."

ON THE OTHER SIDE OF SAN FRANCISCO BAY, HOWEVER, THE "BIG THREE"
evidently hold less sway. There, in the Cities of Oakland and Berkeley, both of which are located in Alameda County, some 30 organizations and individuals have endorsed the Project. They include the Mayors of Oakland and Berkeley, the Oakland City Council, and the Alameda County Board of Supervisors. Their elected representative to Congress, meanwhile--Ron Dellums--has not only endorsed the Project, he's become an official co-sponsor.

These northern California supporters join AIDS-service organizations, National Organization for Women chapters, People With AIDS Coalitions, politicians, clergymembers, ACT UP groups, medical professionals, labor organizers, and others from Nevada, Texas, Florida, Georgia, New York, Ohio, New Jersey, Arizona, Connecticut and a dozen other states in endorsing the Project. Washington State Congressional Representative Jim McDermott, author of the single-payer health plan, is an official co-sponsor of HR 4370, as are Major Owens, Charles Rangels, and 18 others from a total of nine states.

With that kind of support, why aren't the big boys among mainstream AIDS organizations climbing on board--or, at least, working with the AIDS Cure Project to revise the provisions of the Cure Act that they find unpalatable?

"I understand why," says Mark Milano. "When someone has been lobbying in Washington for years to try to get increased AIDS funding, they know it's like pulling teeth. And as far as they're concerned, it's clear: There is no more money for AIDS. So when we come along and ask for $2 billion, their reaction is, 'You're idiots. You can't do it.' But what they essentially admit is that their efforts are not going to generate any more money. Precisely the reason they dislike us--that we're visionary and radical--is the only reason we feel this thing has a chance of working."

Barely concealing his frustration, Michael Belafontaine adds, "We have to demand what we know is right, not what someone decides is 'reasonable.' For months I've been hearing how politicians like Jesse Helms are going to savage this bill when they get their hands on it. Well, Jesse Helms is never even going to see it because his friends in this community are going to make sure that it never reaches the Senate floor."

But Mark Milano is allowing himself a bit more optimism. HR 4370 became dormant when the 103rd Congress adjourned, and there's still time to regroup before the bill is reintroduced. Tentative plans are underway for a meeting with national mainstream AIDS organizations to "hear their suggestions and problems ... and see how and if the Project should be modified."

The AIDS Cure Project has, from the start, been a "working document," Milano point out. "We've always been open to constructive suggestions. If someone has a better solution to the conflict-of-interest problem, we want to hear it. But the Project has to deal with that in some way. Similarly, we have to address the absolute power that drug companies have now, and what we've come up with is eminent domain. There has to be a way through the careerism and fiefdoms at the NIH. Our solution is to make (the Project) completely separate from NIH. If somebody has a better solution to those problems, please, we want to hear it."

In the meantime, a graphic from one of the New York Working Group's broadsides may most succinctly sum up the Project's goals. Above a blank endorsement form runs a legend in bold, half-inch-high capitals. "There will never be a cure for AIDS," it reads, "if we don't cure the research."