How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS
By Bruce Nussbaum
Atlantic Monthly Press. 352 pp. $22.95
Rarely have patient and doctor come so dramatically into conflict as in the first 10 years of the AIDS epidemic.
Confronted with a medical establishment they felt was complacent and aloof, gay rights activists demanded wholesale changes in the way drugs are tested and approved, a voice in decisions about the treatment of those infected with the human immunodeficiency virus (HIV) and unprecedented financial support from Congress.
The story of this revolt -- and the extraordinary implications it has for the way in which all diseases are treated -- is a compelling one, and it forms the basis of Bruce Nussbaum's "Good Intentions." Picking up where Randy Shilts's best-selling account of the roots of the AIDS crisis, "And the Band Played On," left off, Nussbaum attempts to track the turbulent course of the epidemic through the middle and late 1980s, detailing how much of the multi-billion-dollar effort to find and test new AIDS drugs has been caught up in turf battles and political infighting.
All of this makes for engrossing reading, particularly since Nussbaum has a gift for bringing out the drama in the AIDS story. But this is not a balanced history. In fact, ultimately it serves to distort the conflicts and tensions that underlie the war against AIDS as much as it clarifies them.
Part of the problem is that Nussbaum appears never to have met a scientist whom he likes, which is a problem in a book dealing overwhelmingly with the efforts of the scientific community.
Tony Fauci, the head of the government's multi-billion-dollar AIDS program, is portrayed as a self-aggrandizing press hound, a "hit-the-front-page-every-day kind of guy." Robert Gallo, whose work serves as the scientific foundation for AIDS research, is dismissed as arrogant and unfeeling. The head of AIDS drug approval at the Food and Drug Administration, Ellen Cooper, is "cold as ice"; another scientist looks on AIDS patients as "human fodder"; and on and on until Nussbaum has put a black hat on just about every white coat in the AIDS business.
All of this may be true, of course. Except that Nussbaum appears to take the position that if scientists are not nice people they are incapable of making substantial contributions to medicine, a misunderstanding possibly arising out of the inspirational literature on Florence Nightingale.
"It is a polite fiction that scientists at the NIH and the drug companies work for the public health," Nussbaum writes, in what amounts to the book's theme. "They really work for credit and cash."
Can't they do both?
Nussbaum's curious biases create an even bigger problem when he comes to discuss the conflict between activists and the government over how to test potential AIDS drugs.
Traditionally the FDA and the National Institutes of Health have insisted on a highly conservative approach to the evaluation of new drugs. Trials to assess a drug's safety and efficacy took many years to complete, with access to promising but unproven treatment limited until the full scientific data on a compound was available.
What has happened with the AIDS crisis is that federal scientists have been persuaded to relax their strict scientific requirements for clinical trials, to base decisions about whether a drug works on more preliminary or incomplete data in order to get the drug more quickly to people who might benefit from it.
Nussbaum, correctly, sees this shift in philosophy as a tremendous victory for AIDS activism. But he also interprets the scientific community's continuing resistance to the relaxation of drug-testing standards as still further evidence of the corruption of the system and the insensitivity of the medical establishment.
For example, Nussbaum quotes one of the country's most important clinical researchers, Stanford University's Thomas Merigan, complaining that the new AIDS testing rules -- even though they gave patients early access to the experimental drug ddC -- made it difficult to make a full assessment of the drug's effectiveness.
Merigan saw those taking ddC simply as "part of the scientific method," Nussbaum writes. "They certainly were not perceived as ill people who needed greater access to treatment. Merigan stripped them of their humanity... . "
What Nussbaum does not concede is that Merigan's interests might differ from those of patients for quite legitimate reasons, that as a researcher he might have a different but equally valid perspective on how to test new drugs. The gravely ill are, after all, understandably willing to accept high short-term risks in exchange for even a small chance of success. Scientists, by contrast, may be far less inclined to accept those risks. They are called to make precise judgments among many competing options, to take into account the interests not just of one person here and now but of the entire future patient population.
This conflict between the varying perspectives of doctor and patient -- and the continuing attempt by those involved in the struggle against AIDS to reach some sort of middle ground -- is a fascinating and complex story. But there are no villains here. The reviewer covers science for The Washington Post.