Synopsis
A look at how community activism has changed the course of AIDS treatment and discusses how government officials have held up the distribution of promising treatments
Reviews
Freelance writer Feiden and health analyst Arno illuminate the profound effect that the AIDS patient community has had on the process of pharmaceutical testing, treatment and approval. Ten years into the epidemic, patient-activists have become increasingly involved, aware and influential in their interactions with pharmaceutical manufacturers, federal regulatory agencies and international underground trafficking. The book details how the travails of AIDS therapies have caused the emergence of parallel-track testing and community-based clinical trials, redefined placebo standards and private-use pharmaceutical importation, and recast the Orphan Drug Act and medical journal publication embargos. Extortionate pharmaceutical pricing and the absence of quality care for the disenfranchised are only a few of the book's sad revelations. This is an incisive view of how health activism has become an invaluable tool in dislodging the bureaucratic U.S. health-care system. Most alarming is the assessment that the tragedy of the stalled AIDS response could be easily replicated by a federal health-care system as yet ill-equipped to respond to a national emergency.
Copyright 1992 Reed Business Information, Inc.
How AIDS activists changed the way new drugs are developed, and why the biomedical establishment may never be the same again. The fight against AIDS, say Arno (a public-policy analyst at N.Y.C.'s Montefiore Medical Center) and Feiden (a freelance journalist), has been hampered by a combination of ``indifferent leadership, cumbersome bureaucracy, and corporate greed [that] has had an impact almost as devastating as that of the AIDS virus itself.'' These are strong words, but the authors back them up with a wealth of evidence. While noting with anger that the US still has no single agency responsible for developing a national strategy on AIDS, Arno and Feiden save their sharpest criticism for Burroughs Wellcome, the pharmaceutical firm that has reaped enormous profits from the drug AZT. The long-troubled Food and Drug Administration is treated more sympathetically, being described here as an underfunded, understaffed agency that has demonstrated an ability to change with the times. AIDS activists, the authors report, have brought pressure on the FDA and on other government agencies, researchers, and drug companies that has resulted in significant changes in how research on new drugs is conducted and how experimental drugs are made available. Arno and Feiden suggest that other groups can learn from AIDS activists and that, in fact, a few already have. Their chronicle has a confusingly large cast of characters, but useful appendices list names and affiliations and also spell out acronyms and abbreviations. Other appendices provide a chronology of AIDS, data on how clinical trials are designed, and a summary of the current challenge to the Burroughs Wellcome patent on AZT. Inspiring documentation showing that motivated and organized patients can make a difference. (Fifteen b&w photographs--not seen.) -- Copyright ©1992, Kirkus Associates, LP. All rights reserved.
This is a fascinating account of how government and drug company bureaucracies have held up the development of such life-saving and life-prolonging AIDS drugs as AZT, ddI, bactrine, pentamidine, ganciclovir, and compound Q. At the same time knowledgeable activist and patient communities, frustrated and impatient, work heroically to change the policy and procedures of drug testing, pricing, and availability, thereby inspiring a new wave of health activism. Like Bruce Nussbaum's Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight Against AIDS ( LJ 12/90), this scathing indictment of our political and medical establishment points up an unforgivable lack of leadership. Strongly recommended for all collections.
- James E. Van Buskirk, San Francisco P.L.
Copyright 1992 Reed Business Information, Inc.
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