AIDS TREATMENT NEWS No. 113 - October 19, 1991
John S. James

Good Intentions is based on over 100 interviews between 1988 and 1990 with key figures in AIDS research, mostly in the Washington, DC, New York City, and Raleigh, North Carolina, areas; only one scientist refused to be interviewed. The author approached the subject without preconceptions: "I didn't begin the book angry but I did finish it that way." A quote from the introduction gives a better sense of the message than our description could:

"Despite my twenty years as a journalist, much of it covering business and finance for Business Week, I was not prepared for the behind-the-scenes realities of big-time medical research. Even after the wild and woolly eighties, where greed became a Wall Street theology, the corruption was startling.

"On Wall Street, the financial crooks, the insider traders, knew for the most part that they were cheating, breaking the law. The games they played were new -- the LBOs, the hostile takeovers, the greenmail. But the corruption itself was as old-fashioned as embezzlement.

"Nothing of the sort exists in medical science. In that arena, people have good intentions. They believe they are doing good works for the general health of the nation. Indeed, personal corruption is still rare, although faking experimental data appears to be on the rise.

"The corruption in medical science goes much deeper. It derives from the very way the Food and Drug Administration, the National Institutes of Health, and the dozens or so elite academic biomedical research centers work with private drug companies.

"An old-boy network of powerful medical researchers dominates in every disease field, from AIDS to Alzheimer's. They control the major committees, they run the most important trials, they determine what gets published and who gets promoted. They are accountable to no one. Despite the billions of taxpayer dollars that go to them every year, there is no public oversight. Medical scientists have convinced society that only they can police themselves.

"Yet behind the closed doors of 'peer review,' conflicts of interest abound. These are not perceived as conflicts of interest by the scientists themselves. The researchers are convinced that they have only good intentions. This book will show that medical science is the graveyard of good intentions. It will indicate how medical science, in its own unique way, may turn out to be the Wall Street of the nineties.

"Good Intentions is about AIDS. It could be about cancer or heart disease or any other major disease. The social, political, and financial structure of the biomedical research behind each one is similar. Acquired Immune Deficiency Syndrome is relatively new. The deals, the arrangements, the conflicts of interest are therefore more open to the observer. They are only just now being constructed.

"AIDS is also a killer. It strikes young people in the prime of their lives. The AIDS virus is infectious. Anything that gets in the way of quickly developing safe and effective treatments is monstrous. Against this background, the behavior of medical science is thrown into stark relief. A long history of cancer would illustrate the same issues and problems."

(Copyright 1990 by Bruce Nussbaum, reproduced by permission.)

Comment

Good Intentions seldom attacks individual researchers. Some emerge as heroes, and most did the jobs they were supposed to do. The problems arise more from the system than from the people.

This is not the first book to allege that medical/scientific monopolies or conflicts of interest have grossly harmed research in AIDS and other diseases. But it may be the first to make the message accessible and credible to non-specialists -- media people, politicians and their staffs, business and foundation leaders, and anybody else interested in current affairs.

Why is this book important? You can see for yourself by visiting any book or magazine store with a good public-affairs section. Shelves are loaded with general-interest books and articles on science and government, and on almost every national problem. But AIDS is strangely absent from this world of discourse -- not mentioned at all, for example, in books on the Federal government during the Reagan years, or getting at best a few sentences of the most superficial comment. Many books have been published on AIDS, but few include anything about treatment research, and fewer still are ever seen by the general public.

Why has AIDS research suffered this neglect in the intellectual life of the nation? We believe the major reason is that non-specialists were afraid of the difficulty and complexity of the issue. They do not want to say anything about AIDS research, because they fear getting it wrong.

Until now, any non-specialists who wanted to know what really was happening in AIDS treatment development would have needed to undertake an extensive personal research project, finding information in newsletters, in Congressional hearings, through interviews with experts, etc., and then deciding what is relevant and what is credible. No wonder it was easier to accept the "mantra" that everything possible was being done, we're moving as fast as we can, good science takes time.

Good Intentions is far from the last word on AIDS research; no single book could tell the whole story. Many legitimate questions and criticisms will be raised. Some of those who appear in the book may have good reason to question how they are portrayed. But while not the last word, it is in a sense a first word, opening research issues for the first time to the normal process of public discussion and debate.

Some may say this book appears at the wrong time. For AIDS activists and researchers are now working together better than ever before; the spirit of cooperation calls for defending rather than attacking each other. Many believe there are too many personal attacks already. We should remember that the book is not accusing individuals of wrongdoing; instead it shows problems in the system, problems no one could have foretold and which few have imagined until now. It provides a first glimpse of the enormous inefficiencies and lost opportunities everywhere in medical research. We can only guess what progress could be made if these problems can be corrected.

Some may fear that the book is ill-timed because of the growing dangers to Congressional funding due to Federal financial problems. But a recent nationwide survey found that one American in five personally knows someone who has AIDS or is HIV positive (Boston Globe, July 17, 1990, page 1). Congress cannot walk away forever. We can and must address alleged problems openly, and correct them to make research more efficient and productive.

Good Intentions suggests that the fundamental problem in medical research, not just in AIDS, is that the real decisions are made for the benefit of powerful interests, not for the benefit of current and future patients, on whose behalf the whole enterprise is ostensibly being run. The best corrective may be the development of patient advocacy movements (like ACT UP and Project Inform), which do their homework on research, learn what really happens there, and represent the public interest in a way it has not been represented before. These movements are not always adversarial; they increasingly work together with professional, industrial, and regulatory interests. They provide a voice at the table for those who have had no voice until now.

In many areas of U.S. public life, most real power rests with what is called the "iron triangle," consisting of an industry, the Federal regulators of that industry, and the Congressional committees and staffs which oversee the regulators. In medical research the traditional structure might be called an iron quadrangle, including not only the usual three, but also the relevant professions (medicine and science), which have rules, independence, and interests of their own. The AIDS activist movement is adding a fifth group, as patients demand and win a place at the bargaining table, too.

A potential problem for this patient movement is that most of the public-affairs constituency has had no understanding of its issues. Groups in the liberal, public-interest, good-government, consumer-protection spirit should be allies of patient advocates, not opponents. It is easy for well-intended reformers, intimidated by the complexity of science, to uncritically accept the opinions of authorities, without realizing that these authorities have interests and agendas of their own. Good Intentions sheds light here; for the first time, it brings the hidden realities of drug development into general public view.

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