Click here to view Part 1 of the POZ 50.
"Power means the willingness to accept responsibility"
Gregg Gonsalves and Mark Harrington
Treatment Action Group (TAG), Activists
New York, New York
"Demonstrations are good for getting you in the door," says Mark Harrington, who with his lover Gregg Gonsalves has participated in a number of them, first as members of ACT UP/New York and then as full-time employees of Treatment Action Group. "But once you're in, you have to have credible public policy proposals or people will get tired of you just complaining." Just after President Clinton was inaugurated, TAG was ready with those proposals and many of them were adopted in the Kennedy-Waxman NIH Revitalization Act of 1993 which centralized authority for many of the agency's AIDS programs in the Office of AIDS Research (OAR). Critical to the bill's success was a TAG analysis of NIH research programs written by Harrington and Gonsalves, a two-year project for which TAG mobilized hundreds of researchers and investigators. In order to keep people alive until a cure arrives, Harrington says, "We're trying to build a culture of resistance, of informed dissent to the way science is done. But power also means the willingness to accept responsibility and the possibility of incremental progress over revolutionary change. Our priority is to have a small army of activists always putting the pressure on," says Harrington.
"Knowledge is power"
Treatment Action Group (TAG), Founder
New York, New York
When Peter Staley, as a member of ACT UP/New York, began negotiations with Burroughs Wellcome to roll back the price of AZT, the BW executives tried to defend their costs with financial reports. A former government bond trader, Staley knew how to interpret the figures. "They started squirming," he said. "It showed them they weren't dealing with just a bunch of East Village punks. It's not the threat of going to the streets that's most effective. It's doing our homework. Knowledge is power." Staley channeled that power when he helped found the Treatment Action Group in 1992. TAG's agenda is clear: To grease the wheels of AIDS research. "We want the science to be better and for there to be more of it," says Staley. "We want drugs and information on how to use them. We're not a pack of cheery optimists but even the small victories are important." TAG's greatest victory, so far, has been their leadership in helping to expand the Office of AIDS Research through federal legislation. To those activists who insist on beating up President Clinton, Staley has some advice: "It's Congress, stupid." To the charge of having been co-opted, Staley says, "We're always at the table, but we consider ourselves outsiders. It's just a different tactic. We effect changes through alliances that we then play against the middle. We've gotten quite good at grass-roots coalition building but we're still in everybody's face."
"We can't measure Clinton's effort on the basis of two previous mediocrities"
A. Cornelius Baker
National Association of People with AIDS (NAPWA), Director of Public Policy and Education
Cornelius Baker understands that policy, like politics, is the art of the possible. "It's compromise and deal making, not just screaming and yelling," says the former Bush appointee and assistant to a D.C. council member. As an African-American man and a person living with HIV, Baker says he negotiates his existence day by day, and that helps to keep him focused as the policy director for NAPWA, a national advocacy and information coalition dedicated to improving the lives of people with AIDS. To do that, he says, it is essential to attack the plague's root causes of poverty, racism and homophobia. "We cannot begin to end the epidemic without a civil rights bill that protects gays," he says. While Baker gives Clinton a mixed grade for leadership -- noting that his efforts can't be measured on the basis of two previous mediocrities -- he applauds the Center for Disease Control and Prevention's (CDC) new community planning process for placing resources in the hands of local communities. "It's not about you, it's about the people you serve. It's easy to lose sight of that in this town."
"I'm a data queen. Give me info on drugs and how to use them"
Gay Men's Health Crisis (GMHC), Director of Treatment Education and Advocacy
New York, New York
"The overriding concern is to get the available treatment to the people who need it," says David Barr. "Pneumocystis Carinii pneumonia (PCP) is still the leading cause of death from AIDS, and it's preventable." The 38-year-old lawyer believes that while AIDS organizations are good at providing services and counseling, they fail at the dispersal of medical data. Treatment libraries should be staffed, and that staff should include PWAs, who can talk about treatment in simple terms. Barr calls the drug development process a mess. In the rush to get drugs out, there has been a breakdown in clinical testing to gather follow-up information. "I'm a data queen," says Barr. "Give me info on drugs and how to use them. With new drugs, we frequently don't know the dosage, when to start, when to stop and in what combinations to take them." While Barr says there is room for cautious optimism, the in-fighting among AIDS groups is depressingly grim. "I'm not interested in who wants to be the angriest person in town. That doesn't help anybody."
"When a mother speaks, people listen"
Ivy Duneier, Co-founder
New York, New York
Recently President Clinton was paid a call -- a wake-up call -- by a group of 60 mothers representing 39 states. They were there under the banner of Mothers' Voices, a four-year-old advocacy organization which was formed to articulate the needs and urgency of those concerned about children affected by HIV. "We told Clinton that he needed to become a commander-in-chief in the war against AIDS," says Ivy Duneierm, who co-founded the group with Lili Rundback, Dory Bless and David Pearl. "AIDS is a national emergency on par with a flood or an earthquake. When a disaster occurs, the funds materialize -- and they appear within weeks. That should happen here." The first AIDS organization to be invited to the White House, Mothers' Voices conducts a Mother's Day card campaign that this year yielded some 300,000 signatures which they took with them to Capitol Hill. They buttonholed members of Congress to plead for funds for research, treatment and services as well as pushing for legislation against discrimination and for more education. "When a mother speaks, people listen. They take it more seriously than from another source," says Duneier.
"When we keep things silent and secret, we empower fear"
Family AIDS Network, Director
No one can ever accuse Mary Fisher of preaching to the converted. The face of AIDS changed dramatically when this young mother of two and wealth scion of a philanthropic Detroit family addressed the 1992 Republican Convention, casting herself as just one more HIV positive statistic. Since then, she has traveled tirelessly, encouraging a national dialogue on AIDS. "When we keep things silent and secret, we empower fear," she says. "If we are going to make our communities compassionate enough to do something about AIDS, then the best we can do is to speak to an audience who hasn't listened before." Fisher suggests it is best for them to hear it from their peers -- moms talking to moms, teens to teens. Distressed and discouraged by the alarming rise in HIV infections rates among teens, Fisher says that everyone must re-double their efforts to reach out. "It's difficult for me to understand the phobias," she says. "But everyone can understand this: If you love a person, then don't you have the responsibility to pass on the information that may save their life?"
"Making the government listen to the frontlines"
Gay Men's Health Crisis (GMHC), Director of Public Policy
New York, New York
"Over and over again I go to conferences where the discourse is in outer space," says Mike Isbell, GMHC's new policy director. "It's the community folks who bring it back down to earth." GMHC, the nation's largest AIDS organization, has in the past been criticized for bureaucratic stasis, but the 37-year-old Alabama-born Harvard-educated lawyer is determined to keep the community's voice focused and upfront. Certainly, New York City Mayor Rudolph Giuliani heard that voice opposing him when he proposed eliminating the city's Department of AIDS Services (DAS). Energized by winning that fight, Isbell says GMHC is determined to influence the implementation of the CDC-directed AIDS prevention measures and to make sure that people on the frontlines are listened to in the upcoming health-care debate. Look for GMHC to push for more government-funded research on sexuality -- "We need hard data about human sexuality to build these prevention programs."
"The right-wing and religious crowd are more vehement than ever"
The Aaron Diamond Foundation, Executive Director
New York, New York
When New York City Schools Chancellor Joseph Fernandez was looking for funding to support a condom distribution plan in high schools, he petitioned a number of charitable organizations, all of which backed away from the controversial project. All but one, that is. The Aaron Diamond Foundation -- created in 1987 under the proviso that it must spend itself out of existence in 10 years -- donated $450,000 of its $150 million endowment. The religious right responded with legal challenges and calls for abstinence. "They preach abstinence while people are dying," says Vincent McGee, the executive director of the foundation and a longtime human rights activist. "You can't accommodate that kind of narrow-mindedness. The right-wing and religious crowd are more vehement than ever." Approaching problems head-on has always been the foundation's style and since 1993, that has meant an annual commitment of $20 million to fund the Aaron Diamond Research Center. Sensing that New York City was lagging in its response to the AIDS crisis, the foundation established programs and post-doctoral fellowships which would attract the finest young doctors to the city to work on its most pressing problem: AIDS.
"AIDS is not a 'special interest'"
American Foundation for AIDS Research (AmFAR), Policy Director
"Speaking out on discrimination can be helpful, but it's on the tough issues that we need leadership and vision," says Jane Silver the policy director of AmFAR. According to Silver, that voice and vision is missing when it comes to needle exchange, immigration and explicit sex education. "AIDS should be as much a part of Clinton's daily schedule as jogging," she adds, noting that while the President is to be lauded for some initiatives, the community should keep the pressure on. "AIDS is not a 'special interest' and we mustn't let it be defined that way. It demands a daily commitment and a certain amount of courage." Given the fecklessness in Washington, Silver sees the role of the private sector as initiating controversial programs. "That's the hope for needle exchange," says Silver of a program which AmFAR pioneered. "Its success should make it safe for the government to do it eventually." While winning congressional support continues to be an uphill battle, the policy director believes that effort will be successful. "If we are to win -- and we will win -- we have to deliver a plan. We can fill in the spaces later. But without a blueprint, we're flailing."
"Unless people of color are explicitly included, they're implicitly excluded"
AIDS Project Los Angeles (APLA), Policy Director
Los Angeles, California
One of the challenges in creating sound, comprehensive and compassionate HIV policy is to make sure that the people who are making the decisions look like the people who are being impacted by them," says Phill Wilson of AIDS Project Los Angeles, the second largest AIDS organization in the country. As an HIV positive person of color, Wilson himself reflects a broad segment of the population affected by HIV, and he makes no bones about seeking out minorities to join him in the fight. "Unless people of color are explicitly included, they are implicitly excluded," he says. Wilson began his AIDS work as a care giver and political organizer before serving as Mayor Tom Bradley's AIDS coordinator for Los Angeles. Distressed by the rifts and schisms in the AIDS communities, Wilson says that the way to overcome them is to empower communities which have been traditionally neglected. "The better people feel about themselves," he says, "the more willing they are to speak to people's needs. We are in the midst of tremendous backlash. People are weary of AIDS. But it's an expanding disease, and it's going to require an expanding effort."
"We should be asking continually, 'Where are the results?'"
Dr. Arthur J. Ammann
The Ariel Project, Director
San Francisco, California
When the Ariel Project was founded in 1992, it had a well-focused objective -- how to prevent HIV transmission from mother to infant -- a three year time limitation and review mechanisms in place to independently monitor its progress. "What needs to characterize AIDS projects are organization, cooperation and communication," says Dr. Arthur J. Ammann, chairman of the Pediatric AIDS Foundation's health advisory board and director of the project. The clinical research was not green-lighted, he noted, until an independent board of scientists had an opportunity to study the viability of the hypothesis and recommend changes in focus. The board, which continues to check on the results every six months, has an interactive role with the scientists. "If we provide funds to accomplish a certain goal, then it's incumbent upon those getting the funds to reach those goals," says Ammann. "What puzzles me about the NIH's approach to some research is that there is not more accountability. We should be asking continually, 'Where are the results?' With limited funds for AIDS," he says, "we have to have checks on whether we're on the right track with any given project. It's very hard to discontinue a study, and that's why it's rarely done. But, in the future, we're going to become much more discriminating."
"You can't second-guess the genius of scientists working in their labs"
Dr. Samuel Broder
National Cancer Institute (NCI), Executive Director
The tension in finding the balance between basic research and clinical research is not a problem in the eyes of Dr. Samuel Broder, the executive director of the National Cancer Institute. "The two are not in competition," he says. "A strong basic research agenda is not negotiable. You can't second-guess the inherent genius of scientists working in their labs with peer review. If you're going to make revolutionary advances, you have to have a basic research agenda." Broder suggests that where improvements can be made is in the cross-fertilization of disciplines and approaches. "Disciplines that don't normally work together, neurologists working with oncologists, for example, are coming up with very interesting collaborations. They are developing a synergy that I believe will lead to many solutions. There is really only one overriding policy and one issue affecting AIDS. That is to find a cure."
"There's too great a tendency today to be high tech and low thinking"
Dr. Max Essex
The Harvard AIDS Institute, Chairman
"My greatest strength as a scientific researcher is in being creative," says Dr. Max Essex, chairman of the Harvard AIDS Institute, a laboratory braintrust which has advanced national strategies to deal with AIDS, such as the Madison Project. "I think too many researchers are happy using a portfolio of modern techniques to very minimally extend our knowledge into various areas." Dr. Essex suggests "thinking more and doing less" as a way to avoid what he sees as wasteful replication and redundancy in the field of drug development. (He was recently appointed to the President's National Task Force on the subject.) In order to expedite AIDS research, he suggests that 50 to 100 scientists should be asked: Who is most likely to solve the AIDS problem? That list should then be pared down to 10 or 20, he says, and they should meet under the auspices of an independent organization. "My introduction to independent research came with Nixon's war on cancer which came with a huge public outcry against spending money in this way," he says. "In retrospect, it turned out to be a good thing."
"Ego is important if it's used in a productive and positive manner"
Dr. Anthony Fauci
National Institute of Allergy and Infectious Diseases, Director
Activist Larry Kramer claims that Dr. Tony Fauci was emasculated when his Office of AIDS Research was turned over last February to Dr. William Paul. "I don't see it that way," responds the doctor, saying that morale has been enhanced with the fortification of the OAR and the arrival of both Dr. Varmus and Dr. Paul at the NIH. As someone who bore the early brunt of activists' scorn, it's ironic that Fauci thinks that the AIDS policy front could best benefit from new activists to replace those who are burned out. He says, "Things are on the right track but it's crucial to monitor the effort and objectively evaluate very complex problems, not only from a scientific point of view but also with sensitivity to the AIDS communities. You have to hear them out. And if they're incorrect, you have to point that out too." Having been accused of arrogance in that regard, Fauci counters, "Ego can get in the way, but it's important if it's used in a productive and positive manner. We've made measurable advances on the level of pathogenesis but the general public can't appreciate it because they can't see an impact -- not yet."
"I lost significant time, and I feel obsessed with making up for it"
Dr. Robert Gallo
National Cancer Institute (NCI), Virologist
The public is largely familiar with Dr. Robert Gallo as the egomaniacal and ruthless scientist played by Alan Alda in the Home Box Office movie, And the Band Played On. But, last November, after four years of charges and counter charges, a Government appeals board concluded that Gallo had not stolen from French scientists the credit for discovering the AIDS virus. "One might anticipate that after all the sound and fury, there would be at least a residue of palpable wrongdoing," wrote the government panel. "That is not the case." Gallo, one of the world's leading AIDS researchers, took scant comfort from the vindication. "These were the most painful and horrible years of my life, and there's no doubt I lost significant time, and I feel obsessed with making up for it." The NCI virologist has largely been concentrating on a recent discovery of HHV-7, an apparently harmless virus that uses the same site as HIV to infect CD-4 cells, those cells responsible for triggering the body's immune system. What has occured in lab studies is that HHV-7 has blocked the entry of HIV into CD-4 cells. "We've started a crash program to identify the part of HHV-7 that is responsible for infecting the cells," adding that the ultimate aim would be to use one virus to fight another.
"Everyone with HIV should be in a trial"
Dr. Mathilde Krim
American Foundation for AIDS Research (AmFAR), Founder and Board Chairperson
Los Angeles, California
Perhaps it is her slightly teutonic accent, but Dr. Mathilde Krim sounds like a general marshaling the troops in outlining the 1994 goals for AmFAR, the national research organization she helped co-found in 1985. "We're back to the drawing board," says the molecular scientist, mapping out strategies for basic research in order to look at more sophisticated ways of going after the virus. Krim suggests that community-based clinical trials should be speeded up with the numbers increased to the tens of thousands. "We believe that everyone with HIV should be in a trial," she adds. As for public policy, she maintains that the policies have always been there; they need only to be implemented. "What are they waiting for?" she asks of the federal government's attempts at education and prevention -- particularly on the question of needle exchange. "It's been bigoted and stupid and the timidity is costing lives. A decriminalization of drugs would be a step in the right direction." Despite its illegality in many states, AmFAR, in fact, has taken the lead in promoting needle exchange and financing centers for distribution. "The police look the other way," Krim says. Still, she is encouraged. "There is no doubt there will be effective treatments and vaccines," she says. "We are making constant progress. We now need a second generation of drugs to extend life even more."
"Think globally and work locally"
Dr. Jonathan Mann
Global AIDS Policy Coalition, Chairman
"We tend to see this as less of a virus than as a problem of society," says Dr. Jonathan Mann, the founding director of the World Health Organization's global program on AIDS, which he headed from 1986-1990, and the present chairman of the Global AIDS Policy Coalition, an independent research and advocacy organization. "This epidemic is being driven by societal factors we can identify." According to Mann, the major risk factor for AIDS is the denial of human rights and dignity, the global common denominator that unites the HIV-infected child of the Brazilian favelas with the Bombay prostitute with the inner-city African-American. "Our current global strategy is totally inadequate. It deals only with the surface manifestations and doesn't get at the roots of the epidemic," says Mann, recommending that education activities surrounding HIV and AIDS be linked to human rights and dignity of all marginalized people. "We can take a cue from the environmental movement to think globally and work locally," he said. "To the extent a society can improve human rights for all of its people, it will protect itself from HIV."
"Denial and complacency have been problems throughout the epidemic and they still are"
Dr. Michael Merson
The World Health Organization Global Program on AIDS, Executive Director
"We are still very much in the beginning of an epidemic in which no country will be spared," says Dr. Michael Merson, the head of the World Health Organization's Global Program on AIDS, an office he took over from Dr. Jonathan Mann in 1990. Not surprisingly, prevention is at the top of the policy agenda. Trying to convince world leaders of the urgency has been particularly difficult since there is a long period between infection and full-blown AIDS. "Denial and complacency have been problems throughout this epidemic and they still are." One way to cut through that barrier is to show leaders and policymakers the effects of delay and indifference. "HIV positive people are often the best advocates," says Merson. "Showing the reality of the epidemic is often the most striking and effective way to reach world leaders." WHO is launching a joint program among six global agencies -- including ones developed through the United Nations and World Bank -- to contain the epidemic through research (including the testing of experimental vaccines), the distribution of simple diagnostic tests, political advocacy and education and prevention. "I hope it will cut down on bureaucracy and competition," he says. Ever the optimist, Merson says that new AIDS cases can be cut by 50 percent. "Call me in a year and I'll let you know."
"Our goal is not to create another bureaucratic mess"
Dr. William Paul
Office of AIDS Research (OAR), Director
"With trepidation" is how Dr. William Paul says he approached his appointment as the director of the newly revitalized and enhanced Office of AIDS Research (OAR) last February. Mindful of criticism for the bureaucratic morass at the National Institutes of Health (NIH), under which the OAR functions, the distinguished immunologist is quick to reassure others that his mandate is to advance science, not impede it. "The magnitude and breadth of NIH research in AIDS is so large that it isn't feasible for any single institute to think broadly about the effort," he says. "But we can do that in a way that helps to avoid reduplicating efforts and serves to preserve and promote the most important work." Yet, Dr. Paul says that there are still the most profound differences of opinion regarding AIDS research. "We'll have to fight it out," he says, cautioning that majority rule doesn't always determine the truth. "We have to work together to create a plan that will make sense." Warning that "command science" must be balanced with the creativity and deep thinking that often bring unexpected results, he says that there must also be a redoubling of efforts in basic research to understand the progress of the virus. But, he adds, that cannot come at the expense of working on the agents that are urgently needed to help people immediately. "That still has to take priority," he says. Dr. Paul adds that he will actively seek the counsel of the various AIDS communities whose sophisticated understanding has been extremely helpful in carrying out critical but difficult medical trials. "There's a lot we don't understand," he says. "But this scientific community does not share the pessimism spoken about in Berlin [at last year's international AIDS conference]. There is the excitement of reinvigoration here. We simply have to get on with it."
"What I'm looking for are new ideas, real discoveries -- daily"
Dr. Harold Eliot Varmus
National Institutes of Health (NIH), Director
Many AIDS activists viewed the appointment last February of Dr. Harold Varmus to lead the NIH as an extremely promising move in the war against AIDS. A Nobel Prize winner for his work in cancer research, he is a recognized authority on retroviruses (like HIV) and now that a pure scientist rather than a clinician is in charge of the institute's $11 billion budget for biomedical research, it is not surprising that the emphasis at NIH has shifted slightly from clinical to basic research to explore a cure and treatment for AIDS. "It's a drug, an addiction, a craving," is how the forceful scientist describes his craving for scientific data. While many believe that the 55-year-old, bike-riding researcher will energize the NIH, they worry that he may not have the administrative experience to wield a strong hand over an agency riven with professional rivalry and from which the public is demanding greater accountability. Varmus, who worked as a doctor in India as a young man and who holds a degree in English literature from Harvard, says he intends to recruit the best minds in the world to work at the federal biomedical campus. "What I'm looking for are new ideas, real discoveries -- daily," he says, adding that the breakthroughs which he sees in gene therapy may well lead to progress in AIDS treatment.
"As a regulatory agency, we've crossed the line, but it's a risk worth taking"
Dr. David A. Kessler
Food and Drug Administration (FDA), Commissioner
Risk taking is not anything one would associate with a federal regulatory agency, but since Dr. David Kessler, a New York City lawyer and pediatrician, was named to head the FDA in 1990, the agency has accelerated drug approvals to an unprecedented degree, drawing both praise and criticism. "We're aware that some people feel the pendulum may have swung too far," says Kessler, whose agency was once vilified for its bureaucratic delays. "But we're willing to take that risk when people are confronting a life-threatening illness." One of the main backers of the Drug Development Task Force, Kessler says he's committed to helping foster intercompany and interdisciplinary collaborations designed to get follow-up data as well as to yield new AIDS drugs. Noting that the FDA joined in the presentation for approval of ddI, he said "As a regulatory agency, we've crossed the line, but it's a risk worth taking." To maintain objectivity, the FDA submits their reviews of applications to an independent public advisory board. A troublesome subject for Kessler is buyers clubs, which provide access to unapproved drugs. "If there is any reason to believe that a drug can be of benefit to you, there should be mechanisms in place to make sure that drug is available without your having to go through buyers clubs."
"My only ally is the truth"
Dr. Peter Duesberg
University of California, Berkeley, Professor of Molecular and Cell Biology
If Dr. Peter Duesberg were suddenly made the Secretary of Health and Human Services, he says, "I promise you that AIDS would be prevented almost completely." First, he'd educate people as to what he considers the real causes of AIDS: Long-term recreational drug use -- especially nitrites -- and AZT, the anti-retroviral drug which he would ban immediately. Duesberg has long challenged the hypothesis that HIV causes AIDS. That has made him a pariah among the medical orthodoxy, despire the German-born doctor's credentials. He has been elected to the National Academy of Sciences and been an NIH grant recipient for his distinguished work on retroviruses. An increasing number of scientists, including several Nobel laureates, have called for investigations surrounding questions raised by Duesberg's contentions. "The hypothesis that HIV causes AIDS has produced absolutely nothing for the patient," he says. "The American taxpayers have now paid out $22 billion on this hypothesis and the only thing they have to show for it is that 100,000 people may have been killed in the name of AZT and ddI. It's a disastrous record." Duesberg firmly believes that, at the very least, consumers are entitled to alternative views. "We have credible alternatives now, but we have to go back to basic research and develop more," he says. "You find the cause and then you fight the cause. We're developing drugs and vaccines against a cause for which there is no proof." Duesberg is not surprised that few other scientists have rallied to his side. "My only ally is truth," he says.
"There are fads in science"
Dr. Robert Root-Bernstein
Michigan State University, Associate Professor
East Lansing, Michigan
As Dr. Robert Root-Bernstein sees it, the medical orthodoxy has put all its eggs in one basket -- HIV as the cause of AIDS -- and it doesn't work. After 10 years and billions of dollars, he says, we still don't have crucial answers to questions raised by the disease. "It's not popular to say it, but there are fads in science. The key to successful research is to cover all possible explanations and theories -- even the most unlikely." Like Peter Duesberg, Root-Bernstein has been labeled -- and castigated -- as a heretic for suggesting in his book, Rethinking AIDS, that AIDS is not caused by HIV alone and could be the result of other causative agents, such as an autoimmune response triggered within the body or various co-factors combining with HIV to suppress the immune system. "Those models are not even being studied," he maintains, and should be, along with the 50 to 100 cases of PWAs in this country who have sero-converted back to HIV negative status. Root-Bernstein believes that there will be no solution to AIDS unless the research effort and funding are decentralized. "If you took $20 million from one AIDS lab and funded a couple of hundred of what may turn out to be crazy or bizarre ideas, the least you'd get is 10 or 20 new ideas to pursue."
The POZ 50, Part 2
Our list of 50 men and women who are directly influencing federal AIDS policy today
Click here to view Part 1 of the POZ 50.