AIDS Treatment News #158, September 4, 1992
Nancy Solomon

While reviewing research proposals for clinical trials for a pre-cancerous cervical condition in HIV-positive women, she discovered two similar studies under review by two separate committees of the AIDS Clinical Trials Group (ACTG) at the National Institutes of Health. Not only are the studies an inefficient use of resources in the federal research program on AIDS, but the duplication means that each study would compete for enrollment, causing both studies to have low participation and fail to prove anything, Roland says.

She has been raising this issue for almost a year, but has not found enough willingness from the different committees of the ACTG to coordinate research.

"That's a microcosm example of the problem -- but the problem is much, much larger," Roland says. "If there isn't sufficient coordination within the ACTG itself, we can't expect coordination at any other level...I get calls from clinical scientists at the NIH who ask me what the basic scientists are doing down the hall."

She has tried to force the issue in one area of research, Kaposi's sarcoma, and has walked into brick walls. "I've just tried to get Sam Broder of the National Cancer Institute and Tony Fauci of the National Institute for Allergy and Infectious Diseases to sit down in the same room together and tackle the tremendous challenge of planning and coordinating research," she says.

Roland's criticism is backed by many researchers and leaders in the fight against AIDS who say that research is undermined by competition, the building of fiefdoms, and lack of coordination and an overall strategy. Furthermore, AIDS prevention strategies are ineffective because government health leaders refuse to talk directly about sexual transmission of HIV. And funding for direct services and health care continues to be slashed at both a federal and local level.

Responsibility for this quagmire, they say, lies at the door of the White House where first President Reagan and then President Bush showed no interest in stopping the AIDS epidemic. People with AIDS and those fighting the epidemic agree that the Republican administrations over the 11 years of the epidemic have failed to properly address AIDS.

With the possibility of a change at the White House come January, AIDS TREATMENT NEWS recently asked community leaders, researchers and activists what exactly they would want from a president who cares about AIDS.

Proposed Infectious Disease Emergency Act of 1993

Terry Beswick of the Human Rights Campaign Fund, the largest lobbying group representing the needs of gays, lesbians and people with AIDS, has written a plan for a White House response to the epidemic. He is calling for an Infectious Disease Emergency Act of 1993 that would dismantle the present bureaucracy and replace it with a coordinated system. That system would have clear lines of authority and communication from the president, and a national management plan that would establish a definitive division of labor among all federal agencies involved in AIDS work, eliminate duplication and inefficiency, and ensure that necessary work is undertaken.

His plan, and the suggestions of many others, require that AIDS be de-politicized to the extent that efforts to stop the spread of HIV, care for the ill, and conduct research be driven by principles of public health and science.

Beswick is circulating a 19-page draft of the plan for input from people with AIDS, activists and community leaders. So far, he has received support. (He can be reached at the Human Rights Campaign Fund, 202/628-4160.

AIDS Czar

"We can't conceive of the power of the president because we've never had it," says Paul Boneberg, director of Mobilization Against AIDS in San Francisco. "A new president could get the funding, he could double the NIH budget. It changes to what level of a champion do you have versus what level of an opponent."

Boneberg is among the many who are calling for an "AIDS czar" -- a cabinet-level coordinator of the federal response to AIDS who would have the ear of the president. The White House must also commit to adequate funding for research and health care and to legislative reforms that could change the Centers for Disease Control restrictions on HIV education, the immigration ban on people with HIV, and procedures of the Food and Drug Administration.

Replacing Political Appointees

He also advocates replacing some of the existing AIDS bureaucracy. "Everyone agrees that there are many people there principally for their political views, not for their medical expertise," Boneberg says.

Leading his list are the top three men in the federal health administration: Secretary of Health and Human Services Louis Sullivan, his undersecretary and right-hand man, James Mason, and the director of the Centers for Disease Control, William Roper. All three are Republican political appointees, and Mason and Roper have connections to conservative Senator Orin Hatch, R-Utah.

Mason bared his philosophy on AIDS in the March 1992 issue of Medicine & Health, where he was quoted as saying "there are certain areas which, when the goals of science collide with moral and ethical judgement, science has to take a time out." Mason's spokesman is quoted in the same article as saying "When you're fighting a fire, you control it from the outside and let the center burn. The same holds true for medicine."

Mason was promoted from his post as head of the Centers of Disease Control during the 1980s, when the federal agency failed to stop the spread of HIV.

A senior AIDS researcher, who spoke with unusual candor about the federal research program under the condition of anonymity, agrees with Boneberg's assessment.

"The White House should appoint a Secretary of Health who is knowledgeable in science, not just a guy who has a medical degree," he says.

"There's no central coordination at the NIH. God knows there's no coordination at the Centers for Disease Control. We don't have a national program," the AIDS researcher says.

"If you go out through the states you'll see there's no consistency about AIDS prevention. In North Carolina, students get prevention from English teachers. Most of them can't say the word penis without blushing. To talk about condoms drives them nuts. This ultimately comes back to the CDC and that ultimately comes back to James Mason...He's going to make absolutely sure that nobody talks dirty during the Bush Administration."

The AIDS bureaucracy grew without any overall plan, strategy or structure, he says, and its history is marred by opportunism, competition and careerism. "The whole process has been slowed down by opportunists."

Leadership Is Paramount

Derek Hodel, who started the PWA Health Group, a New York City buyers club, and now works with the AIDS Action Council in Washington, says the question of leadership is paramount to untangling the mess that has become the government's research program on AIDS. "There is precious little in authority that guides research across the institutes," he says. "A cabinet-level post would send a signal that this is a serious issue."

He likened the need for coordination, strategy and commitment to the way the White House runs the military. "The air force, army and navy all work in collaboration," Hodel says. "We need a triple track message: research, prevention and care."

That triple track was also discussed by Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, who suggested an AIDS czar to coordinate a national plan to fight the epidemic. That person should have the expertise necessary to direct the research program as well as a public health program willing to use explicit language to prevent the further spread of HIV. "It will come from an administration that is compassionate and understanding."

In a report released in July, the Treatment Activist Group, a splinter group of ACT UP/New York, calls for a doubling of the NIH budget, a line-item in the federal budget for AIDS research, and the authority of the Office of AIDS Research to reallocate funds across institute lines.

In a foreword to the report, Larry Kramer sums up TAG's conclusions. "The AIDS plague is utterly and completely devoid of leadership," Kramer writes.

"At the NIH, no one is at the center, nothing is coordinated, no one is asking the life-saving (and money- saving) questions: what is missing from our efforts, what is being duplicated, why are we being forced into competition with our own fellow institutes right here on our own campus, when budgets are shrinking and shrinking?"

Comment

This article attempts to further the necessary debate about what we would want from a White House that is not hostile to people with AIDS. We felt that our readership could benefit from this kind of discussion rather than a comparison between the policies of George Bush versus Bill Clinton. We hope this article will encourage thinking about what we need from government. Asking only for more money will signal that we are not doing our jobs: The federal response to the AIDS epidemic must change in many significant ways in addition to an increase in funding. We are more optimistic than at any time since the emergence of HIV that a new administration in the White House will address AIDS. The question is, will we be ready to harness the power of the presidency to end this epidemic?

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