AIDS Treatment News #165, December 18, 1992
Keith Griffith

The reform package, actually a series of 24 proposals, would centralize all AIDS research programs at NIH under the authority of the Office of AIDS Research (OAR). "We want the OAR to have increased budgetary and administrative authority," TAG representative Gregg Gonsalves stated. "Right now there are 21 institutes, centers and divisions at NIH that supervise AIDS research, and we would like OAR to have a single budget line for themselves and to distribute money instead of going through 21 directors who decide where it goes. [The AIDS program at NIH] is a huge program, $1.2 billion. If that were reorganized well, run more efficiently, with some sort of strategic vision for what they were doing, we would have reason for hope."

Gonsalves speaks confidently about the need to centralize AIDS research at NIH because earlier this year he and colleague Mark Harrington, both of TAG, conducted an exhaustive study of the NIH AIDS program (see AIDS TREATMENT NEWS issue # 156). What they found was a billion dollar investment with no one in clear command. In the study by Gonsalves and Harrington, they documented what many have suspected all along: that NIH is plagued by gaps in research, that redundancy is far too common and that there is virtually no strategic planning. OAR, which was created by Congress in 1988 to oversee federal research at NIH, was never given enforcement powers to carry out its mission. The TAG report calls it all "an elaborate charade."

"OAR has no teeth at all," is the belief of Derek Hodel of AAC. "The reforms we are circulating are designed to give OAR the teeth to do the job they were mandated to do in the first place: to coordinate AIDS research, to devise a strategic plan with broad research goals, and to coordinate research among the NIH institutes." This would be accomplished by giving one office, the OAR Director, authority to oversee budget decisions and enforce both short and long-term planning. OAR would report directly to the NIH Director and would work with the newly created Special Assistant to the President on AIDS (frequently referred to as "AIDS Czar") to assure a continued pro-active stance from the White House.

Will These Reforms Work?

The critical question, we think, is whether these reforms would actually make a significant enough improvement in the development of meaningful treatments, a cure for persons living with HIV today, and eventually a vaccine. Additionally, many scientists will wonder how these reforms will impact on them.

There has been little community discussion over these reforms recently since very few people are aware just how seriously they are being taken, now that the Bush Administration is on the way out. This lack of public discourse is not because of some desire to hide these proposals. It reflects the sad state of affairs regarding how few people are advocates for treatment research within the network of community-based organizations which deal primarily in AIDS care giving and prevention. Nevertheless support is growing and supporters on Capitol Hill may place the reforms into legislation as early as January. Senator Ted Kennedy and Congressman Henry Waxman are expected to include the package in bills that will also remove the ban on fetal tissue research and strengthen women's health research funding.

AIDS TREATMENT NEWS, looking to find expert opinion about whether this particular reform package could succeed in improving research at NIH, spoke at length with a senior professor at one of the nations most respected schools of public health. This person, who did not wish to be identified, has significant experience working within large institutions engaged in protecting the public health. Our source has had little experience in the field of AIDS research and was relatively unaware of the current situation at NIH.

After studying the reform package, we went through each proposal separately. Concern was voiced only around issues of how some points would not likely be acceptable to a bureaucracy or to existing government hierarchies. There was concern that the OAR Director would be in a position of advocating publicly against the policy of the Administration. Another concern was voiced about the implications of creating a budget bypass (allowing OAR to report directly to the president on budgetary issues, rather than going through NIH; the National Cancer Institute at NIH has had a similar bypass since 1972), though there was agreement that oversight and enforcement of a budget would work better if direction comes from one office. Even with these reservations, our expert source stated, "The idea of having an (OAR Director) who is in charge of coordinating across all the institutes and having a lead role in running various task forces, not only within the Public Health Service, but also outside, would be very healthy and helpful and I think ought to be possible."

Those pushing these reforms are in the process of winning scientific support, as well as seeking out diverse views about how to strengthen the existing package. A large list of names, both in AIDS research and in other areas, has been assembled and will be consulted in the coming weeks. Derek Hodel with AAC worries that some scientists might see these reform efforts as a way to interfere with what researchers can do in the lab. "I don't think that our plan would impede the kind of creative thinking needed to fight AIDS," Hodel said. "The types of direction we are looking for are very broad, thematic directions."

The reform package is coupled with a push for a fifty percent increase in federal spending on AIDS research in 1993. Activists believe the two together will provide the significant jolt needed to open up the pipeline to new research and speed along projects already in development. Another crucial part of the strategy, being developed jointly by TAG, AAC, HRCF and others, will be obtaining the president's support. One document, "Confronting HIV/AIDS: Initiating Change," a 24 page outline of what is needed from the new Administration, which came out of a recent meeting of 75 community leaders convened by AAC, calls upon President-elect Clinton to deliver a major televised address to the nation on AIDS during the first 100 days of his Administration. Hodel described what the president should do in such a national address, to add the sense of urgency needed as well as reforming NIH and providing additional funding. "It is hard to know for sure, because we have never had presidential leadership, but I think in the case of AIDS, a signal from the president would do it. If the president tells NIH, 'move this stuff,' it will happen. President Clinton needs to say that AIDS research is a top-priority of this administration. It needs to be that clean and that simple and that public a signal."

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