Books: Medical; History

** THE MEDICAL MANAGEMENT OF AIDS, THIRD EDITION. Edited by
Merle A. Sande, M. D., and Paul A. Volberding, M. D. W. B.
Saunders, Philadelphia, 1992.

This book, written by over 40 AIDS physicians and other
treatment experts from around the world, and edited by
leading physicians at San Francisco General Hospital, is the
most authoritative textbook on mainstream AIDS treatment. The
information is up to date; the third edition, published in
six months from when the chapters were ready (very rapid
turnaround for A medical textbook), is reaching bookstores
now.

The material is well organized, with 26 chapters covering
such areas as dermatologic care, oral complications,
gastrointestinal manifestations, neurological complications,
hematologic manifestations, and specific infections including
pneumocystis, cryptococcal infections, toxoplasmosis,
bacterial infections, syphilis, TB and MAI, and malignancies.
A "Special Aspects of AIDS" section includes chapters on
pediatric AIDS, therapeutic issues in women, AIDS litigation,
and supporting health care workers in treatment of HIV-
infected patients.

Not everyone with HIV will want to read so technical a book
about it. But The Medical Management of AIDS should be
readily available, perhaps in libraries of support
organizations. Patients may want to see how their specific
diagnosis fits into a larger picture, or how their treatments
look from the viewpoint of mainstream consensus.

** AGAINST THE ODDS: THE STORY OF AIDS DRUG DEVELOPMENT,
POLITICS, AND PROFITS. By Peter S. Arno, Ph.D., and Karyn L.
Feiden. HarperCollins Publishers, New York, 1992.

This is the second book to tell the history of AIDS treatment
research and development in a way nonspecialists can
understand. (The first was Good Intentions: How Big Business
and the Medical Establishment are Corrupting the Fight
Against AIDS, by Bruce Nussbaum, published in 1990.) Against
the Odds may have more influence; it is being reprinted as
the first printing quickly sold out. Like Good Intentions, it
is based on interviews with some of the key people involved,
as well as on documentary evidence.

Health economist Arno and health writer Feiden, who are both
well known in their fields, focus on the time between the
approval of AZT in March 1987, and of ddI in October 1991.
Their health expertise allows them to speak authoritatively
on many issues: for example, to place the modern history in
the context of the other horrors that happened before the
development of modern ethical standards for research (the
infamous "Tuskegee experiment" was the most notorious case,
but far frOm the only one); and to show that much of the
treatment access AIDS activists are still fighting for has
long been routine with cancer.

The most important part of the book is its catalog of
dramatic, disastrous mistakes, mostly by government agencies,
which delayed the development of AIDS-related drugs --
pentamidine and other pneumocystis prophylaxis, ganciclovir,
fluconazole, trimetrexate, and others. (Pharmaceutical
companies may have made fewer notable mistakes because most
of them chose not to help in AIDS at all.) Here also are the
partial successes, such as the rapid approval (but not the
pricing) of the first anti-AIDS drug, AZT.

The book is also a short history of "the activist and patient
communities who have informed themselves about this epidemic
more fully than any community ever has and have now altered
the course of government policy toward AIDS and other
diseases."

One of the most important points was quoted from Martin
Delaney of Project Inform: "There is no bureaucracy in this
nation whose goal is to advocate on behalf of the needs of
people with this disease. FDA's task is to keep unsafe or
ineffective drugs out; NIH's task is to conduct the research.
Whose task is to make sure that people get what they need?
Nobody's." We could add that AIDS activism has developed to
fill this gap as best it can.

The book ends inconclusively. "For now, the story of AIDS
drug development remains a struggle between those who have
all the time in the world and those for whom time is running
out. But it also remains a story of hope -- a hope that holds
steadfast against the odds."

Comment

Where are we now? Our own view is consistent with the picture
supported by Arno and Feiden.

We believe that the end of the drug-development pipeline --
FDA approval of urgently needed drugs -- has been repaired as
well as we can expect given political realities. The new
accelerated-approval procedure has delivered ddI and ddC. We
must be vigilant against forces seeking backsliding. But the
main problem now shifts from a constipated pipeline to an
empty one.

For repairs have only started on the beginning of the
pipeline (getting promising agents through preclinical
testing and into humans for the first time) and the middle
(larger human trials, by the often-disorganized AIDS Clinical
Trials Group, and the often-uncommitted pharmaceutical
industry).

This development is no happenstance. For activists have had
to step in where national leadership (both government and
private institutions) has failed. And some parts of the
leadership vacuum are more difficult than others for
grassroots activists to fill. For example, it is easy to
organize around FDA delays late in drug development, because
by then data exists, and the drugs are ready to go. But -- as
Arno and Feiden quoted from AIDS TREATMENT NEWS -- "It is
harder to organize people around deaths caused by drugs which
do not exist and perhaps never will, but should."