Treatment Library: Books and Newsletters

An organization or an individual can set up a basic AIDS library for relatively little cost. A few reference books, newsletters, and referral phone numbers are most important as the core reference materials. After that, there are many directions in which a library can evolve, and specialization is appropriate, as few could afford to be comprehensive. This article provides an annotated list of basic materials, a starting point which will make an AIDS treatment library immediately useful.

The section on reference books, below, is central; an AIDS treatment library can provide a core of current information and make itself useful for under $200. The other lists, of AIDS newsletters and of "alternative" information sources, include more optional items, which some libraries will choose not to carry. We have not included academic medical and scientific journals in this article; we may publish a list in a future issue.

The standard medical books can best be found at a bookstore with a good medical department (in San Francisco, for example, we usually check the bookstore at the University of California San Francisco Medical Center, 500 Parnassus Avenue -- or the medical section of Stacey's Books, 581 Market Street). If no store is convenient, the books can usually be ordered from the publisher. For newsletters, we include contact or ordering information.

Reference Books

* Introductory handbook for patients. Early Care for HIV Disease, by Ronald A. Baker, Ph.D., Jeffrey M. Moulton, Ph.D., and John Charles Tighe, 1991, published by the San Francisco AIDS Foundation, 415/863-2437, or 800/367- 2437 (from Northern California), $9.95. This 108-page book, released last week, is a first introduction for persons who have learned that they are HIV positive. It includes topics such as finding a doctor, understanding blood tests, nutrition and food safety, drugs (including AZT, ddI, and ddC, interferon, GM-CSF, and combination therapies), clinical trials, expanded access, paying for medical care and obtaining public assistance when necessary, and finding psychosocial support. An excellent resource list includes phone numbers for local and national hotlines throughout the United States, six different Spanish hotlines, a Filipino hotline, addresses and phone numbers for over two dozen minority AIDS organizations, and an annotated list of 20 AIDS newsletters and other publications; an organization with an AIDS library might
want to photocopy this hotline and resource list for easy reference by library users. The book includes a glossary to define the medical terms it uses.

* Medical dictionary. Webster's Medical Desk Dictionary, Merriam-Webster Inc., Springfield, Massachusetts, 1986, $21.95, is clearly written and accessible to a general audience. If you want a more technical dictionary, consider Dorland's Illustrated Medical Dictionary, W. B. Sauders Company, Philadelphia, 1988; Dorland's is written primarily for physicians.

* Drug book(s). We usually use Nursing91 Drug Handbook, Springhouse Corporation, Springhouse, Pennsylvania, 1991, $21.95. It is updated every year, and the information it presents on each drug is practical and well written. This handbook is organized by classes of drugs, rather than one alphabetical list, so patients can learn about other potential treatment options, which might be necessary if a drug prescribed for them causes side effects.

Many people use the Physicians' Desk Reference (the "PDR") as their basic book on approved drugs. The 1991 edition is available now in bookstores for $49.95. It is thorough and authoritative, as it contains the official "labeling," what the FDA allows drug manufacturers to say about each drug. The PDR is not as convenient to use as the nursing handbook; for example, it is organized by drug manufacturer, not by type of drug. But the PDR is more thorough, especially on side effects. A good library should consider both.

Another option is Handbook of Drugs for Nursing Practice, by Virginia Karb and others, the C. V. Mosby Company, St. Louis, 1989, $28.95. We would choose this book over the other two except for the fact that the latest edition now available is two years old, and AIDS drug information changes rapidly.

* AIDS textbook. We recommend The Medical Management of AIDS, Second Edition, by Merle A Sande, M. D., and Paul A Volberding, M. D., W. B. Saunders Company, Philadelphia, 1990, $45. This book, edited by two professors at the Department of Medicine of the University of California San Francisco, was written by dozens of leading AIDS experts. Chapters include early HIV infection, dermatologic care, oral manifestations of AIDS, gastrointestinal disease, neurologic complications, hematologic manifestations, and cardiac, endocrine, and renal complications. There are also chapters on pneumocystis, toxoplasmosis, cryptococcal meningitis, fungal infections, mycobacterial diseases, salmonella and other encapsulated bacteria, herpes virus infections, and malignancies. Other sections examine epidemiology, prevention of transmission, pathogenesis, children with AIDS, and legal issues. Most chapters have dozens of references. This book is written for physicians; the general reader will need a medical dictionary to follow parts of it. Be sure
to get the second edition, since the first was published in 1988 and is now out of date.

* Directory of AIDS treatments. The AIDS/HIV Treatment Directory is published by the American Foundation for AIDS Research, 1515 Broadway, Suite 3601, New York, NY 10036-8901, 212/719-0033, updated quarterly, $30 per year. This directory focuses primarily on experimental treatments now in clinical trials for HIV, opportunistic infections, malignancies, and other AIDS-related complications. The entries are continually updated; sometimes drug information appears in the Directory before it is published anywhere else. Besides the listings of treatments and clinical trial sites, editions include other useful information; for example, the December 1990 issue includes an article on combination therapies, a list of compassionate use and treatment IND programs, a list of community-based trial organizations, a list of U. S. AIDS Clinical Trials Group centers, an index of drug manufacturers, a glossary, and an extensive list of AIDS newsletters and other information sources.

* How to get medical benefits. The AIDS Benefits Handbook, by Thomas P. McCormack, Yale University Press, 1990, is "a brief encyclopedia of income, health, and housing programs for the disabled," including information on state-by-state variations. It explains SSDI, SSI, AZT assistance, Medicaid, General Assistance, Emergency Assistance, Food Stamps, and others, including "several programs of real potential for aiding PWAs, but which are far less well known to the AIDS advocacy community and therefore not used nearly to their potential: the Hill- Burton, state or local indigent medical assistance and private charity programs available in many hospitals; State Supplementary Payment (SSP) programs to finance PWA group housing in 'board and care homes'; and state-run drug (and even health insurance) subsidy programs." [Note: a brief announcement of this book appeared in AIDS TREATMENT NEWS #105, June 15, 1990.]

Treatment Newsletters

At last count, there were well over 100 periodical publications devoted solely to AIDS. We cannot evaluate them all; if we have missed some which you believe should be listed, please let us know. Note that this list does not include many specialized newsletters, such as local clinical-trials directories, or newsletters not primarily about treatment.

The first three listed below often cover some of the same material as AIDS TREATMENT NEWS, with articles on treatments and interviews with physicians. Of the four, BETA is probably the most conservative; AIDS TREATMENT NEWS is usually regarded as most willing to venture outside of the medical mainstream.

* Treatment Issues, published ten times a year by the Gay Men's Health Crisis, 129 West 20th St., New York, NY, 10011, $20 suggested donation for a one-year subscription.

* PI Perspectives, published several times a year by Project Inform, 347 Dolores, Suite 301, San Francisco, CA, 94110. 415/558-9051 from San Francisco and other countries, 800/334-7422 from rest of California, 800/822-7422 from U. S. locations besides California; $25 suggested donation for information packet and subscription.

* Bulletin of Experimental Treatments for AIDS (BETA), published four times a year by the San Francisco AIDS Foundation, $35 per year. For subscription information call 415/863-AIDS from San Francisco and other countries, 800/327-9893 from elsewhere in the United States, 415/861-3397 for information about bulk orders.

Positive News is another newsletter also published quarterly by the San Francisco AIDS Foundation. It is free and appears in four languages: English, Spanish, Tagalog, and Chinese. Described by the Foundation as "a low-literacy newsletter on issues affecting people with HIV infection," Positive News contains little treatment information; it is important because it provides AIDS information in several languages.

* Notes from the Underground, published six times a year by the PWA Health Group, 31 West 26th St., 4th Floor, New York, NY, 10010, 212/532-0280, $35 individual, $75 institutions/physicians; send a self-addressed stamped envelope for a free sample copy. The January 1991 issue includes articles on azithromycin, a guide on where to get non-approved drugs, an article on pricing at the PWA Health Group (which is a non-profit buyers' club), and important testimony by executive director Derek Hodel to the Congressionally-mandated AIDS Research Advisory Committee.

* Treatment & Research Forum, published monthly by the Community Research Initiative, 31 West 26th Street, 3rd floor, New York, NY 10010, 212/481-1050, donation requested. Includes information on drugs being studied by the Community Research Initiative, one of the oldest and largest community-based AIDS research organizations, and other treatments of interest.

* AIDS Medical Report, published monthly by American Health Consultants, 67 Peachtree Park Drive, NE, Atlanta, GA, 30309, 800/688-2421, $149 for subscription ($199 with CME credit). Written for physicians, this newsletter usually has one in-depth, practical report per issue on standard-of-care treatments.

* Critical Path AIDS Project, published monthly by the AIDS Library of Philadelphia, 32 N. 3rd St., Philadelphia, PA, 19106. 215/545-2212, $15 or contribution of choice for subscription, free to people with HIV. Publishes in-depth articles, often reprinted from elsewhere, on treatments, as well as prevention and services, including listings of support groups in the Philadelphia area.

* AIDS Medicines in Development, quarterly survey of most investigational agents currently in AIDS research, published by the Pharmaceutical Manufacturers Association, 1100-15th St., NW, Washington, DC, 20005. No cost; send written request for subscription.

* Treatment Update, and Traitement Sida, published by AIDS Action Now!, 517 College Street, Suite 324, Toronto, Ontario, Canada M6G 1A8. 416/944-1916. Varied subscription prices. Notes on research and treatment ideas.

* STEP Perspective, published by the Seattle Treatment Education Project, 1535-11th Ave, Suite 203, Seattle, WA, 98122. 206/329-4857. $15 or more suggested contribution for subscription. Well researched articles on treatment studies.

* Washington HIV News, Box 3933, Merrifield, VA 22116-3933, 202/797-3590. Published in cooperation with the Whitman-Walker Clinic, Washington HIV News includes medical news and education, and information about new treatments, especially those in clinical trials. Subscriptions (four issues) are free for persons with AIDS, otherwise $8 individual rate, $80 institutional rate. Phone or write for free sample issue.

* ATIN: AIDS Targeted Information Newsletter, sponsored by the American Foundation for AIDS Research, published monthly by Williams and Wilkins, P. O. Box 23291, Baltimore, MD 21203-9990, 800/638-6423 (in Maryland call 800/638-4007), $125 per year individual, $275 institution. This review of the medical and scientific literature on AIDS has several hundred citations in each issue, with brief reviews, sometimes quite technical, of the most important articles.

* The treatment committees of at least three ACT UPs now publish newsletters. Some articles report on treatments, others discuss business, such as meetings with pharmaceutical companies or government agencies. Because these groups are in the forefront of treatment activism, the newsletters include information not otherwise available. For more information, call the numbers below:

* ACT UP/New York Treatment and Data Committee: The Treatment and Data Digest. Call Mike Barr at 212/982- 8206, or Chris DeBlasio at 212/420-8432.

* ACT UP/Los Angeles Treatment and Data Committee: Treatment Issues Report. Call Wade at 213/841-2631, or the ACT UP office at 213/669-7301.

* ACT UP/Golden Gate Treatment Issues Committee: Treatment Issues Report. Call the ACT UP office at 415/252-9200, or Michael Wright at 415/864-6305.

Alternative (Complementary) Treatment Information

It is hard to judge information about potential treatments which are in some way outside of the medical mainstream. Some guidelines can be given, however:

* Even for non-mainstream treatments, there is almost always some background information published in credible medical or scientific journals; if there were not, the proposed treatment would clearly not be ready for use except by qualified research institutions. (Persons should be aware, however, that unscrupulous promoters sometimes provide impressive-looking but irrelevant references, knowing that most people will not follow up and discover that the cited articles do not support the claims the promoter is making.)

* Besides the medical literature, the background and motives of those interested in the treatment can be considered. Is the information about it coming from a nonprofit or community-based AIDS organization, or from a promoter with a scheme to make money?

* Particular danger signs are secret remedies, or any attempt to keep patients from obtaining standard medical care, or from discussing all treatments they plan to use with their physicians. Quacks often try to cut their victims off from other information sources, to increase their own control.

Patients should tell their physicians about all treatments they are considering; both parties should seek to build relationships where this is possible. Physicians are busy; few have time to follow the latest research on everything their patients may be interested in, and some are threatened when patients ask questions they cannot answer. Still, complementary treatments should be discussed, in case there is important information, especially precautions or other safety concerns, which may apply particularly to the individual patient because of his or her health status, or because of drugs the physician has prescribed. [Note: We prefer the term "complementary" to "alternative," to emphasize that any unproven treatment possibilities should be used in addition to good-quality standard medical care, not instead of it. Also note: for more information on the physician-patient relationship, see "Managing Your Doctor," by Michelle Roland, AIDS TREATMENT NEWS #111, September 21, 1990.]

Disclaimer: we have listed the following information sources as a starting point for a complementary- treatment section of an AIDS library. But we cannot be as confident about non-standard treatment information as we can be about standard medical information, such as that found in medical dictionaries or in drug handbooks. While we believe that the following sources are usually correct in summarizing information from the medical and scientific literature, we could not check everything; in addition, some of the writers have strong viewpoints or preconceptions which need to be taken into account. We urge readers not to rely on any single source as authoritative, but to follow up by seeing additional information about any treatment options which interest them.

This list is not complete; there are many useful publications not included here. Some entire areas are omitted -- Chinese medicine, for example -- not because we dismiss them, but because we are not prepared to cover them well.

The items listed below are extremely diverse. We cannot vouch for all of the information they contain. We have listed each item because we believe that some of our readers will want to know about it.

The books may be available in AIDS sections of gay or medical bookstores. For newsletters, and sometimes also for books, we include mailing addresses and telephone numbers.

* Surviving AIDS, by Michael Callen, Harper Collins Publishers, 1990. This is not primarily a book about treatments, but rather is based on interviews with long-term survivors. The author, one of the founders of both the People with AIDS Coalition and the Community Research Initiative in New York, was diagnosed with AIDS in 1982 (before the term "AIDS" existed), and given a short time to live; he is still alive and active today, over eight years later. Aside from the interviews, other chapters include "Why Some Survive," "The Propaganda of Hopelessness," "Making Sense of Survival" (summarizing what he learned from his continuing study of survivors), "What I Would Do If I Were You," and "The Case Against AZT."

* Living with the AIDS Virus, by Parris M. Kidd, Ph.D., and Wolfgang Huber, Ph.D., 1990, HK Biomedical, Inc -- Educational Division, P. O. Box 8207, Berkeley, CA 94707, phone 415/527-6871. This 182-page book provides an easy-to-read overview of most of the better-known complementary and experimental treatments. While there are chapters on AZT and the biology of HIV, the main emphasis is on nutritional approaches, especially egg lecithin lipids (i.e., AL-721) and "natural" antioxidants, reflecting Dr. Kidd's background as a consultant on nutritional supplements.

* HEAL (Health Education AIDS Liaison) is preparing an updated version of its AIDS Information Packet on Alternative & Holistic Therapies for AIDS. We have not seen this packet, which should be available in about three weeks; the previous version was 150 pages. HEAL requests a donation of $12.50 or more for the packet, but will send it without charge to anyone who cannot afford to donate. HEAL, a nonprofit organization, holds treatment meetings in New York; it also plans to publish a quarterly newsletter. For more information, send a self- addressed stamped envelope to: HEAL, P. O. Box 1103, Old Chelsea Station, New York, NY 10113, or call 212/674- HOPE.

* Nutritional Influences on Illness, Melvyn R. Werbach, M. D., 1988, 1990, Keats Publishing, Inc., New Canaan, Connecticut, 203/966-8721, $17.95 (paperback). This 504-page book by an assistant professor at the University of California Los Angeles School of Medicine is not about AIDS -- which does not even appear in the index. Instead, the book has chapters on 92 different diseases, each one reviewing the medical and scientific literature suggesting that certain foods or nutrients may be helpful (or in some cases harmful) in its treatment. While few of the conditions covered are AIDS related, persons with AIDS or HIV might find ideas worth trying.

* Smart Drugs and Nutrients, by Ward Dean, M. D., and John Morgenthaler, 1990, B&J Publications, Santa Cruz, CA 800/669- 2030. This book, released in January 1991, is subtitled "How to Improve Your Memory and Increase Your Intelligence Using the Latest Discoveries in Neuroscience." It is not about AIDS; instead it reviews scientific studies of several dozen drugs which some researchers believe may improve mental functioning. Drugs are regularly prescribed for this purpose in some countries, but in the U. S. the concept has so far not been accepted. We mention the book here for research interest, because of the possibility that some of the drugs might be helpful in treating AIDS-related neurological problems. As far as we know, however, no studies to test this possibility have ever been done.

A two-part article on cognition-enhancement drugs is also being published by Megabrain Report: The Psychotechnology Newsletter, P. O. Box 2744, Sausalito, CA 94965.

* Forefront Health Investigations, published six times a year by MegaHealth Society, P. O. Box 60637, Palo Alto, CA 94306, 408/733-2010. Originally called Journal of the MegaHealth Society and focusing on "health information on life extension and biological technology," Forefront recently changed its name and has begun to include more information on AIDS and HIV; for example, the December 1990 issue includes an article on anabolic steroids as a proposed treatment for wasting syndrome, and an article on yeast infections (not AIDS-related, but possibly useful with AIDS). The previous issue discussed combining AZT with ddC or with ddI.

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