The Aids Political Machine

By Dick Thompson

Good news rarely kicks up controversy, but this may be an exception. A report soon to be published by the national Centers for Disease Control estimates that the size of the AIDS epidemic is significantly smaller than originally projected. Since 1986, the Federal Government has claimed that as many as 1.5 million Americans were infected with the incurable virus. The number soon to be announced will be around 1 million, and some Government officials suggest that the count could be as low as 650,000. Also, the rate of new infections in New York City, Los Angeles and San Francisco is at last slowing. "In retrospect," says the CDC report, those earlier estimates, "based upon limited data available at the time, were too high."

Why the controversy? Because AIDS lobbyists insisted all along that the scope of the epidemic was being understated. By doing so, AIDS activists overcame conservative resistance and rightfully elevated the fight against the disease to the top of the nation's public-health agenda. Says June Osborn, chair of the National AIDS Commission: "We should not be content or comfortable. The national response to an out-of-control epidemic has been frighteningly modest."

But now that the picture is brightening statistically after a decade of gloom, many research scientists and health-policy analysts question whether the changes wrought by AIDS activists harm basic research, the public health and perhaps even those who are at risk of acquiring the virus. Says Joel Hay, a health economist and senior research fellow at the Hoover Institution: "Things are out of whack." Three areas merit special concern:

A swollen budget. After an initially sluggish response by the Reagan Administration, Washington has pumped current AIDS funding to a robust $1.6 billion. That is slightly more than the budget for cancer ($1.5 billion), which killed more than twelve times as many people last year (500,000, compared with 40,000 who died from AIDS). And it is far greater than the $610 million budget for heart disease, the nation's top killer. "It's wrong to spend more money on a disease that will never kill more than 35,000 to 40,000 people a year than on a disease that will kill a half-million every year," says Michael Fumento, author of the recently published Myth of Heterosexual AIDS.

Cures first, prevention second. The most effective means of controlling a contagious epidemic is through prevention. But the AIDS movement has emphasized the rapid development of treatments for AIDS victims. Says Michael Nesline of the activist group ACT UP: "We're fighting for people for whom the question of prevention is a moot point." In this regard, the movement found allies in conservative politicians who were unable to support "safe sex" education but saw AIDS research as politically neutral.

Consequently, spending on drug development has outpaced funding of prevention programs 2 to 1. Some public-health officials fear that the concentration on cures has been at the expense of educating Americans who remain at risk -- primarily blacks and Hispanics of the inner cities of the East. Thus the epidemic in those ghettos is likely to grow. Says Samuel Thier, president of the National Academy of Sciences' Institute of Medicine: "We should have known that focusing largely on treatment after infection would not be an adequate long-range strategy."

The emphasis on AIDS research is also beginning to draw fire from scientists whose non-AIDS projects have been squeezed for funds. Traditionally, major health efforts have fueled broad basic-research programs. But "AIDS money is targeted," observes Donald Fredrickson, former director of the National Institutes of Health. The narrow focus reduces the chances of spin-off discoveries for other diseases. Says David Korn, dean of the Stanford School of Medicine: "The course of discovery in biology is not linear. When you target money too narrowly, you exclude other areas that may prove to be very fruitful."

Lowered standards for drug approval. Almost as soon as drugs are shown to be somewhat effective, the AIDS lobby pushes for their immediate release. To overcome bureaucratic delays, some activists have launched so-called underground testing of drugs that have been of questionable value. The lobby's greatest influence has been at the Food and Drug Administration. AZT, for example, won Government approval in less than four months, compared with a current average of two years. Says James Todd, senior vice president of the American Medical Association: "It's distorted all the traditional principles for drug approval. Penicillin couldn't get through that fast." While some modification of FDA regulations may have been necessary, many people believe that the changes being made at the FDA to accommodate AIDS activists threaten a system that has protected the public from quack cures, like the apricot pits once touted for cancer sufferers.

The AIDS lobby has been so successful because early on it grasped a fundamental principle of American research. Explains Philip Lee, University of California at San Francisco professor of social medicine: "The system is a political process." By using Washington connections, media savvy and even civil disobedience, the AIDS movement may have become the most effective disease lobby in the history of medicine. Says Jeff Levi, former executive director of the National Gay and Lesbian Task Force: "Long after AIDS is gone, we will have changed how research is done in this country."

Certainly every disease has its lobby. But AIDS is the first deadly epidemic to strike an already organized political constituency, the gay-rights movement, which began with a fundamental distrust of mainstream society, including organized medicine. The AIDS lobby, says Columbia law school professor Harold Edgar, "is independent of and really indifferent to the interests of the scientific establishment." AIDS lobbyists have often been motivated by fear and anger about public indifference, or even hostility, to their terrible problem. AIDS activism "has to do with racism and homophobia," says Nesline of ACT UP. "What's new is that queers and junkies started doing something about it."

Translating the grass-roots movement into legislation was the work of the National Organizations Responding to AIDS. Representing 150 health and civil rights groups, NORA orchestrates long-range strategy and shepherds all AIDS legislation through Congress. "The coalition provides an opportunity for groups to have more influence than their size would dictate," says William Bailey, federal-policy officer for the American Psychological Association and a founding member of NORA. "When you have 40 to 60 groups saying the same thing, that's a very compelling statement."

The efficient AIDS lobby towers over lobbies for other diseases that strike just as many people. NORA executive director Jean McGuire acknowledges, "The unlevelness of the playing field is a result of the gay community's initial articulateness and money." That has come to mean that AIDS has a far greater impact than the number of its victims would dictate.

If the current response to AIDS is skewed, it may be because so much effort was required to overcome the inertia of the Reagan years. Congress found every Reagan AIDS budget inadequate and increased funding year after year. The AIDS political machine is running as efficiently as ever, and any modification of the nation's AIDS response will require a more dispassionate approach among activists.

Still, AIDS remains a significant problem worldwide. And while researchers have made tremendous strides in drug development, these drugs are expensive and more difficult to use elsewhere, especially in the hardest-hit areas of Africa. The challenge to American researchers now is to find not only better treatments but also treatments that are low in cost and easy to use.

Fundamentally, the problem is that scientists are better at making pleas for more money than at setting priorities for research. "There's a lot more to do ((in science)) than money to do it with," says Stanford's Korn. "Without priorities, we're left to well-organized lobbyists. That's the American way." Bumper stickers and demonstrations may be acceptable in picking a mayor, but the political process is proving to be a mixed blessing when confronting an epidemic.