NEW THREATS TO AIDS RESEARCH FUNDING

A growing chorus of voices in Washington and in the media is saying that AIDS has unfairly been given special treatment, that the epidemic is not as serious as had been believed, and that money should be taken away from AIDS research and distributed to other diseases or other purposes.

AIDS TREATMENT NEWS focuses mainly on scientific and [????] information about treatment, and on how to design and administer research to get results, rather than on funding issues. But many arguments now being circulated to support reduced AIDS funding are one-sided or worse, and so far the other views are not being wide+heard. This article outlines some of the issues in the current funding debate, in order to provide a more balanced view and help our readers support attempts to deal with AIDS through effective research, prevention, and treatment, instead of by writing off certain populations and dismissing the epidemic as not a concern to the majority.

The Case Against Research Funding

Much of the case for reducing AIDS treatment research was summarized in an article published last month in Time magazine ("The AIDS Political Machine," January 22). It made the following arguments:

* The Federal AIDS budget of $1.6 billion is greater than that for cancer ($1.5 billion), although cancer killed 12 times as many people last year. The article also quoted without challenge a statement by Michael Fumento, author of The Myth of Heterosexual AIDS, that AIDS would never kill more than 35,000 to 40,000 people a year.

* Twice as much money is being spent on drug development as on prevention of transmission, although experts believe that prevention, not treatment, should be the key to stopping the epidemic.

* Money targeted to AIDS reduces funding for other diseases.

* Traditional principles of drug approval are being "distorted." The article's prime example: that AZT was approved in less than four months, compared to an average of two years. The article invoked the memory of Laetrile, a discredited cancer treatment, to suggest that changes to speed FDA drug approval threaten to leave the public vulnerable to quack cures.

* "AIDS has a far greater impact than the number of its victims (sic) would dictate" -- implying it has been overemphasized -- because of the money, organization, and articulateness of the gay community.

Another common argument against AIDS funding, which did not appear in the Time article, is that the public need not pay for AIDS because it was acquired by people's voluntary behavior and therefore is their fault. This argument ignores the fact that the average time from infection to AIDS is about nine years, and highly variable, while the disease was unknown until 1981, the virus not announced until 1984, and prevention information was not widely disseminated until later. Most of those now ill were infected before they had any warning of how to protect themselves. Much of the public does not know that persons now ill were infected years ago, but those quoted as AIDS opinion leaders almost certainly do. Apparently this argument against paying for AIDS has been spread even when it was known to be false.

The Other Side

Here is some of the information omitted from the Time article and from similar attacks on AIDS funding:

* The comparison of the money spent for AIDS and cancer is misleading. According to a fact sheet prepared by the Human Rights Campaign Fund in Washington, D. C., the $1.5 billion for cancer only includes the spending of the National Cancer Institute, part of the National Institutes of Health (excluding spending for AIDS-related cancer research). But the $1.6 billion AIDS figure includes not only the entire National Institutes of Health (including the NIAID clinical trials, AIDS spending in the National Cancer Institute, and much basic biomedical research sometimes arbitrarily counted under AIDS), but also the Centers for Disease Control, the Food and Drug Administration, the Health Resources and Services Administration, and the Alcohol, Drug Abuse, and Mental Health Administration. If cancer spending in the National Cancer Institute alone is compared with AIDS spending in the entire National Institutes of Health -- a comparison which still exaggerates the relative money spent on AIDS -- then cancer receives twice as much money as AIDS, $1.5 billion vs. $750 million.

* The cancer infrastructure has been built over decades, whereas the AIDS infrastructure had to be created from scratch during the last few years in which funding was available. It is unfair to ignore this difference when comparing recent funding only. And cancer is really many different diseases; comparing cancer with AIDS can obscure more than it reveals.

* Spending on AIDS is comparable to that for other diseases in research dollars spent per year of life lost.

* The four months to approve AZT vs. two years average for drugs refers to the time taken for government paperwork, not scientific research. Although figures are not available, it is likely that most of the cited two years is due to inadequate staff at the FDA, causing drugs to wait in line while nothing happens. Until staff shortages can be corrected, it is essential to give vitally important new drugs for any disease priority over marginal or "me too" product introductions. This kind of reform does not weaken the approval process or threaten to introduce quack remedies.

* AIDS is spreading rapidly in many communities and will certainly kill more people in the future than it is killing today. Research funding should consider not only today's deaths, but the future as well.

* Aside from all these specifics, the thrust of some current efforts to compare dollars for cancer vs. AIDS is to get the different disease lobbies fighting among themselves, when everyone would benefit if we could work together better as a coalition. We should remember that the entire budget of the National Institutes of Health, for all diseases combined, is $7.6 billion, less than the current year's cost of only two military systems, the Strategic Defense Initiative ("Star Wars," at $3.8 billion), and the B-2 bomber ("Stealth," at $4.3 billion). Which effort is more cost-effective in saving the lives and protecting the quality of life of U. S. citizens? Which is the better use of the same tax dollars -- Star Wars and the Stealth bomber, or all Federal biomedical research on all diseases conducted by the National Institutes of Health? This country can afford adequate medical research; the real issue is national priorities, not whether money is available.

* The Time article suggested that money should be spent on prevention rather than drug development. It quoted an ACT UP member to portray the AIDS movement as focusing on treatment instead of prevention, implying that people with AIDS or HIV by trying to save their own lives are distorting the national response to the epidemic, thereby threatening the lives of "blacks and Hispanics of the inner cities of the East." But in fact the gay community has long been in the forefront on prevention, and the AIDS movement has emphasized prevention far more than treatment, which only recently became a priority. The scandalous delays in prevention have not resulted from money being spent on drug development, and are not at all the fault of the (mostly gay) AIDS movement, which the Time article has framed as a threat to the lives of members of other groups. Anyone involved in prevention knows that the bottleneck has resulted from consistent, long- standing political obstructionism by certain conservatives and fundamentalists. But those unfamiliar with the history of what is actually happening could take from the Time article images divorced from the facts.

* Another argument for reducing AIDS funding is that the epidemic is not affecting as many people as had been predicted. For example, new AIDS cases reported in 1989 to the Centers for Disease Control were only nine percent above the total reported for 1988 -- a much lower rate of increase than in previous years. And according to another recent report, an unexpected change for the better seems to have started in mid 1987.

But much is still unclear. For example, nobody knows for sure why the improvements have occurred; there are at least five different theories, each with its own proponents (safer sex, availability of treatments, underreporting, changes in the definition of AIDS, or estimates not being comparable because the original ones were erroneous). This good news does not justify seizing on new and uncertain information, sometimes before it is even proofed and published, in an unseemly rush to take money away from AIDS.

* Another argument (not in the Time article) for deemphasizing AIDS is that the disease is not spreading rapidly in the heterosexual community -- meaning white, middle class heterosexuals in the United States. Aside from the ethical objections to writing off other populations, there are epidemiological reasons to be careful of telling the white middle class that it has little to worry about. In Africa AIDS is spread almost entirely by heterosexual contact, including in the middle class. In parts of Latin America, AIDS is in transition from the U. S. /European pattern (gay men and IV drug users) to the African pattern (heterosexual transmission), showing that this change can happen. And in the U. S., syphilis has reached its highest rate in 40 years, mostly among heterosexuals -- showing that people are not being careful, and also providing genital sores which are believed to facilitate epidemic heterosexual transmission. A major heterosexual epidemic in the United States cannot be ruled out, and after it starts, it may be too late to stop. Now is not the time to encourage people to let down their guard by telling them that AIDS is someone else's problem.

Toward Coalition and Consensus -- And a Demographic Obstacle

The current push to de-emphasize AIDS research is objectionable not only for its factual distortions, but for what it is
trying to do. It is seizing every excuse to try to write off and abandon people with AIDS or HIV, divide the spoils among other interests, and dismiss what AIDS has taught us about weakness in the health-care and research/approval system, and about how to begin to change them. Instead of encouraging disease groups to fight each other, we should be working together to improve health care for all.

One demographic obstacle to building such coalitions has not, we believe, been pointed out before. It appears that almost everyone working in AIDS is under 40. A major underlying problems in mobilizing public support and understanding for AIDS may stem from the tendency of older people not to listen to younger people or take their concerns seriously. And AIDS organizations had to be created from scratch, without benefit of the leadership of those who were older and more experienced, as the older people were not there. The result may have been the development of organizations which are not comfortable for the senior people who are usually the leaders in U. S. institutional life. These leaders are used to being in charge. They are not inclined to learn the ropes from younger activists, as may be necessary in AIDS since usually older people are not involved.

This same dynamic may also explain failures of mobilization within the medical community. Most physicians involved in AIDS are too young to have major influence in the medical profession as a whole. They could not speak out effectively to correct such problems as unworkable clinical-trial designs, irrational barriers to access to necessary treatments, and national research programs which could not possibly save their patZYÍ lives. The senior physicians who could have provided this leadership were not involved in AIDS.

One pioneering effort to bring in leaders from other fields is the Mayor's HIV Task Force in San Francisco. It spent a year investigating AIDS here, and then produced a short report with no surprises. The real significance of the project is that it involved leaders from the business and religious community who had not been familiar with AIDS before, and then developed consensus on needs and recommendations.

Those of us who work constantly with AIDS may not realize how extensive a subculture has developed. This writer, for example, had thought that a few meetings and a reading would be enough to bring leaders from other fields up to speed in AIDS. Instead it took more than a year, in a specially- designed project sanctioned by San Francisco's mayor.

We hope that the identification of this problem of the absent older generation in AIDS will contribute to the creative thought and experimentation which will be needed for its solution.