Subject: Giving $ for AIDS Research, Major new book Date: Aug 14 1987 (460 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1987 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS, issue #38, August 14, 1987 Also published in SAN FRANCISCO SENTINEL, same date. CONTENTS [***** marks start of new item of CONTENTS] Where To Give Money For AIDS Research Major New Book: Living With AIDS: Reaching Out Where To Give Money For AIDS Research by John S. James Several people have asked this writer to suggest where they could contribute to AIDS research in order to do the most good. The answer depends on your perspective and what you want to do. This article outlines some options by giving examples which the writer recommends. The options are extremely diverse, as you will see. And no such listing could be comprehensive; many equally important possibilities do not appear here. Those who prefer to make anonymous contributions can do so by using postal money orders. The AIDS-Research Problem Already the Federal government spends hundreds of millions of dollars on medical research relevant to AIDS. Most of this funding does go to worthwhile projects. But the money gets dis- tributed through an intensely political process -- a process reflecting the interests of the biggest drug companies, old-boy networks of scientists who want high-tech, glamorous projects, and a national political administration fundamentally hostile to AIDS research. Almost no one represents the interests of persons with AIDS or ARC when these funding decisions are made. The result is that only a narrow range of research ideas -- mainly those related to AZT and similar drugs such as DDC -- get serious mainstream attention. The current system does fund worthwhile projects, but it also leaves gaping holes of neglect. The real decisions on AIDS research are made outside of pub- lic view -- sometimes because of corporate secrecy, but mainly because of the inattention of AIDS service organizations and of the press. This lack of public attention has made it hard for individuals to make independent funding decisions which bypass the politics of AIDS treatment research. Fortunately there are some attractive organizations which either give money to AIDS research, or are directly involved themselves. You can contribute through them and let their scien- tific committees evaluate specific proposals. Or you may want to contribute to advocacy, investigative, or political groups work- ing to improve public policy on AIDS research. Direct Support Of Research * The American Foundation for AIDS Research (AmFAR). By far the largest and most established non-profit AIDS research group, AmFAR gave about four million dollars last year, mostly for laboratory biomedical studies. AmFAR also publishes the excel- lent AmFAR Directory of Experimental Treatments for AIDS & ARC, available from their New York office, phone 212-333-3118. (The regular subscription price for six updates a year is $50.,but AmFAR has been sending free copies to persons with AIDS or ARC, or those who are taking care of them.) At least 70 percent of money received goes directly into laboratory and clinical investigation, to accelerate the develop- ment of a vaccine and effective therapy for AIDS. In addition, AmFAR gives grants for educational, ethical, legal,and behavioral research, and conducts in-house projects such as the Directory, and the preparation of public-service announcements. AmFAR can fund projects much faster than the U. S. National Institutes of Health -- approximately two to three months,compared to 12 to 18 months for Federal funding. However,researchers who apply need to fit into AmFAR's twice- yearly funding cycle. The application process first starts with a letter of intent; if that is accepted, a formal application will be sent. AmFAR does not have the flexibility to award, say, a few thousand dollars to a scientist next week for a quick test of a promising idea. The 32-member scientific advisory committee, which makes the funding decisions, includes some of the best-known people in AIDS research. Some of the familiar names are Robert Gallo and Samuel Broder of the National Cancer Institute, Jay Levy and Paul Vol- berding in San Francisco, and Mathilde Krim, a medical researcher and well-known advocate for faster development of and access to treatments. The board also includes physicians known for their work with AL 721 and other experimental treatments at St. Luke's / Roosevelt Hospital Center in New York. AmFAR's president is Mervyn Silverman, and its national chairman is Elizabeth Taylor. The founding co-chairs are Mathilde Krim, Ph.D., and Michael S. Gottlieb, M. D. Typical studies funded in the current year include "Analysis of AIDS Retrovirus Envelope Gene" ($60,000), "Studies Towards the Development of an AIDS Virus Vaccine" ($47,500), and "Increasing T Cell Resistance to Primary Infection by HIV" ($50,000). Tax-deductible contributions can be sent to AmFAR, 9601 Wilshire Blvd. Mezzanine Level, Beverly Hills, CA 90210-5294. For more information, call (213) 273-5547, or in New York call (212) 333-3118. For contributions only, call 800-992-CURE. * Community Research Initiative (CRI). This research organ- ization originates from the AIDS community, and has obtained legal status as an Institutional Review Board (IRB) to conduct rapid, low-cost clinical trials of promising AIDS/ARC treatments, in cooperation with private physicians and their patients. The CRI is a subsidiary of the People With AIDS Coalition, Inc. in New York. Most IRBs exist in hospital research centers. Unfortunately it costs so much to do anything in that setting that little can happen without the initiative of a major pharmaceutical company. If a drug is unpatentable or otherwise doesn't fit into corporate business plans, it is unlikely to ever get tested, regardless of its medical promise. The Community Research Initiative, with its IRB and associ- ated Scientific Advisory Committee, can organize testing through private physicians at far less than the usual cost. Therefore it can raise enough money in the community to do trials that should be done, even for treatments not commercially attractive. It will also work with pharmaceutical companies to test their pro- ducts when appropriate. The CRI is already setting a healthy example by designing studies without placebos, trials not arranged to sacrifice one group of patients in order to prove that the drug received by the others is effective. One example of such a trial is a design to test aerosol pentamidine in two different doses, both equally reasonable according to all current knowledge, in order to see which dose works best. The scientific committee, which decides which tests to do,includes Dr. Bernard Bihari (developer of the naltrexone treatment for ARC/AIDS), Michael Lange (of Columbia University, currently conducting trials of AL 721 at St. Luke's-Roosevelt Hospital Center), Dr. Donald Armstrong (Chief of Infectious Diseases at Memorial Sloan-Kettering Cancer Center), and 12 other physicians. The IRB itself, which functions primarily to assure the welfare of patients in the trials, has 16 members including Dr. Bihari, Michael Callen (a founding member of the National Association of People With AIDS and ARC), Dr. Mathilde Krim (also with AmFAR), Ms. Carol Levine of The Hastings Center Institute of Society, Ethics, and the Life Sciences, Dr. Nathaniel Pier (who has a large AIDS/ARC practice in New York and has long urged proper testing of lentinan), and Dr. Joseph Sonnabend, one of the principal organizers of the Community Research Initiative. The IRB first met in March of this year. The Community Research Initiative is now considering clini- cal trials with aerosol pentamidine PCP prophylaxis, AL721, DHPG for early intervention in AIDS, DNCB, naltrexone,transfusion therapy, large-dose penicillin, and a hyperimmune milk treatment for cryptosporidiosis. It is investigating the feasibility of a computerized database for treatment information and rapid commun- ication among physicians. In addition, it plans to review research at other institutions and publish critiques. If there is one place where money could do the most good in the direct support of clinical AIDS research, it is probably the CRI. The low-budget clinical research makes donated funds go a long way. The organization has first-rate physicians and scien- tists, and it is fast, flexible, open-minded, and responsive to the AIDS/ARC community. For information on contributing to the Community Research Initiative, call Thomas Hannan, CRI Administrative Director, at (212) 463-8981. Contributions are tax deductible. Changing Public Policy: Advocacy, Investigative, Political and Other Groups Your contribution might accomplish more for AIDS research by changing public policy than by paying for the research directly. AIDS is a major public emergency which has not been handled in a responsible manner. Part of the problem stems from homopho- bia. But an equal part stems from lack of advocacy -- something easier for us to remedy. The U. S. government runs on pressure groups. Yet almost all AIDS, medical, and gay organizations have refused to even look at public policy concerning the management or direction of treatment research, ethics in the conduct of clinical trials,or compas- sionate access to drugs not yet fully approved for massive com- mercial promotion and marketing. The groups below are some of the exceptions. These low- budget organizations rely almost solely on individual contribu- tions. Just a few hundred dollars can be a major part of a monthly budget and make a visible impact on some of the most important AIDS work now being done. These groups seldom get any of the money from the major AIDS fund raising appeals; individual donors need to inform themselves and make their own allocations. The list below includes only San Francisco-based organiza- tions, because those are the ones this writer is most qualified to recommend. Many equally important organizations are working elsewhere. * Mobilization Against AIDS (MAA). In existence since 1984, Mobilization Against AIDS has consistently fought for huge increases in funding for research on the Federal level. It focuses especially on the House Budget Committee, which sets the high ceiling mark for Federal expenditures for AIDS research. It has been very effective in organizing constituents in Congres- sional districts around the country, especially for members of the House Budget Committee and other key persons in Congress. Last year, MAA fought for 500 million dollars for Federal AIDS research, despite criticism from other lobbying groups which said such an amount was impossible. MAA got diverse groups to use 500 million as their high figure in discussions -- instead of a much lower ceiling -- probably resulting in far more money being appropriated in the final compromise than otherwise would have been the case. This year, MAA is asking for one billion dollars for research -- an amount also recommended in the National Academy of Sciences report on AIDS. In addition to its work on research funding, MAA organizes the world-wide candlelight vigils on Memorial Day. In Califor- nia it has also taken major leadership roles in the fight against attacks on civil liberties, such as the LaRouche Initiative, or the current efforts of State Senator John Doolittle to force much of the LaRouche policy through the California legislature. Mobilization Against AIDS does not receive nor would it accept funding from any government agency. It receives very lit- tle help from foundations and relies almost entirely on member and other contributions. You can contribute to the Mobilization Against AIDS by sending a check -- or anonymous money order if you prefer -- to them at 2120 Market St. Suite 106, San Francisco, CA 94114, phone 415-431-4660. If you call during the current Doolittle campaign, you will probably have to leave a message for them to call you back. * Project Inform. This organization is one of the few which is willing to give information on treatments not already approved by the Food and Drug Administration. It runs a toll-free hotline (800-334-7422 from within California, 800-822-7422 from other states), trains volunteers, and answers about 400 phone calls and mails about 250 information packets per week. It has conducted its own research surveys of reports from users of experimental treatments, including ribavirin and isoprinosine, and AL 721. For background information on Project Inform, see "AIDS Treatment News From Project Inform", SF Sentinel March 13,1987. Project Inform is supported primarily by individual dona- tions, although recently it has received some foundation support, and last year it received a research grant from ICN Pharmaceuti- cals, the manufacturer of ribavirin. It needs more donations to maintain the toll-free hotline, the special telephone equipment required for the high volume of calls, and the paid staff of two. For information on contributing to Project Inform, call Bill Woods at (415) 928-0293. * Guerilla Clinics. In July of last year, a leading U. S. dermatologist was scheduled to begin a clinical trial with DNCB in the treatment of AIDS/ARC, at the University of California San Francisco Medical Center. This chemical is painted on the skin where it causes a reaction very much like poison oak. It also increases the number of T-cells in most patients. Considerable anecdotal evidence suggests that this treatment may be helpful for many people with KS or other forms of HIV infection. (For background information on DNCB, see "DNCB AIDS/ARC Treatment", SF Sentinel, September 26, 1986.) But the study kept being postponed, due to funding and other problems; to this day it is still being postponed. Meanwhile a grassroots "guerilla clinic" movement came into being and distri- buted DNCB to an estimate four to five thousand people, who have used it under a physician's supervision when possible, otherwise without. A center of this movement has been Jim Henry, who esta- blished a national DNCB information phone (415-647-8561) and sends out about 20 free packets of DNCB information per day. We asked him about the concern of some physicians that DNCB might increase growth of the virus, either by providing more T- helper cells to infect, or by causing inflammation,which recent indications suggest might itself stimulate growth of HIV. He replied that most people using DNCB today are combining it with an antiviral. Until recently most had been using ribavirin, but now many are switching to AL 721,primarily because of the prohi- bitive cost of ribavirin. Some are using AZT. Mr. Henry has seen that most people whose T-helpers are not too low to begin with can sustain an increase in T-cells by using the DNCB/antiviral combination. We asked about indications that DTC (Imuthiol) may be better than DNCB in every way -- safer, more effective, not leading to increased viral growth despite increase of T-helper cells, and now supported with much better data than DNCB. Jim Henry replied that the guerilla clinics do indeed have an interest in DTC, but right now their hands are full maintaining what they are already doing. Mr. Henry and other leaders of the guerilla clinic movement are approaching burnout due to the heavy commitments of time and money required, and lack of sufficient support from the commun- ity. Jim Henry works 40 hours a week to support himself and the clinics, and an additional 40 hours a week on DNCB. Donations haven't paid all the bills, so he must contribute his own money in addition. He needs enough support to cover postage and print- ing expenses, and to either hire someone to help with the work or to enable him to devote fulltime to it. Chances are excellent that people looking back on the epi- demic will realize that the guerilla clinic movement saved dozens if not hundreds of lives. To discuss how you can contribute to this important effort, call Jim Henry at (415)647-8561. * Citizens For Medical Justice (CMJ). This group conducts protests to publicize the issues around AIDS research, afforda- bility of treatments, and civil liberties violations. Recent demonstrations focused on red tape in fAIDS research and access to treatments, and major delay in the development and operation of AIDS Treatment Evaluation Units, the Federal program for test- ing drugs for AIDS and ARC. Other demonstrations have focused on the Governor's veto of a California bill to protect persons with AIDS/ARC against discrimination, on the exorbitant cost of AZT, and on mandatory testing of applicants for the Job Corps -- and exclusion of those testing positive. CMJ has also taken a major role in organizing protests against the Doolittle bills in the California legislature. Some of the demonstrations involve legal picketing and com- munication only. Others involve civil disobedience and arrest. CMJ specializes in thorough, very strict nonviolence training, to avoid any behavior which would antagonize or harass persons work- ing at the demonstration site; instead, all action is focused on publicizing the issues. CMJ has also specialized in conducting fast-paced public meetings, at which representatives from dif- ferent constituencies can reach consensus on major goals and on specific demonstrations or other actions to achieve them. Citizens for Medical Justice consists of a core group of about ten people, plus others who join in some of the projects. It operates on a low budget, about $1500. per month in expenses, mostly contributed from the pockets of the organizers. You can send contributions to Citizens for Medical Justice at 275 Turk Street, Apt. 404, San Francisco, CA 94102. For more information, you can call John Belskus or Frank Richter at (415) 771-4688, or Terry Beswick at (415) 552-8897. * National Gay Rights Advocates, 540 Castro Street, San Francisco, CA 94114, (415) 863-3624. This public-interest law firm specializes in litigation which can have a broad impact on public policy. It has been highly effective in opposing insurance discrimination, quarantine, and other civil-liberties violations. In June of this year NGRA filed a class action lawsuit against the U. S. Department of Health and Human Services, the Food and Drug Administration, and the National Institutes of Health, concerning mismanagement of treatment research and access to treatment by persons with AIDS and ARC. NGRA will be able to use subpoena powers to obtain and make public previously hidden information from government records and from the testimony of government officials concerning AIDS treatment research and how it has been conducted. If you have specific information about conflict of interest or other improper actions by Federal offi- cials in AIDS research, contact Leonard Graff, the attorney in charge of the lawsuit, at the address or phone number above. Donations to NGRA are tax deductible. They can be directed to the class action lawsuit on AIDS treatments, or given for the general work of the organization. For more information, contact NGRA at the address or phone number above. ****** Major New Book: Living With AIDS: Reaching Out San Francisco AIDS activist Tom O'Connor has had ARC for seven years and was seriously ill in 1982 and 1983. Then he began a systematic study and practice of many forms of AIDS/ARC treatments and healthy ways of living, centered around nutrition. Recently he has done extensive organizing work with groups such as the Gay Macrobiotic Network, the AIDS Healing Alliance, and the Healing Alternatives Buyers Club. And with Ahmed Gonzalez- Nunez he has put together an excellent survey book on all kinds of nutritional, holistic, and conventional medical treatments for AIDS and ARC. The authors designed the book for "people who want to do something about their disease but don't know where to start; who see a need to take responsibility over their lives, no matter where they are; and who are willing to participate actively in their healing". The book presents the authors' excellent and wide-ranging research in a style remarkable coherent and easy to read. The book is scientifically literate, and maintains a solid, common-sense perspective from the point of view of the person with AIDS or ARC. Some of the major topics include background on the immune system and on health and nutrition, choosing and dealing with physicians and other health practitioners, background and specif- ics on nutrition and diet, and problems such as food allergies, alcohol and recreational drugs, and likely cofactors in the development of AIDS such as herpes viruses and intestinal parasites. The book also discusses dozens of specific treatments, such as AL 721, DNCB, naltrexone, vitamin C, other vitamins, garlic, herbs, acupuncture, homeopathy and others. Included are many conventional medical treatments such as chemotherapy, anti- biotics such as Bactrim and fungal treatments, and others. The authors see conventional medicine as an essential and major part of a treatment program, although they criticize certain excesses, and certain blind spots such as nutrition. Extensive appendices include a comprehensive psychosocial and nutritional treatment approach by Keith Barton, M. D., a very extensive list of conventional and experimental drugs,information on vitamin C, food additives, food allergies and elimination diets, the use of herbs in AIDS and ARC, and macrobiotics. A resource directory includes addresses and phone numbers of dozens of information sources, from acupuncture to people with AIDS organizations to physicians sympathetic to complementary thera- pies (conventional Western medicine plus holistic approaches such as diet, herbs, orthomolecular treatment, and healthy living). Living With AIDS: Reaching Out was published privately and is not available in most bookstores at this time. You can order copies from Corwin Publishers, P. O. Box 2806, San Francisco, CA 94126. The retail price is $18.95 plus $1.50 shipping and han- dling; California residents add $1.23 tax. For more information you can call Tom O'Connor at (415)621- 4346, or at (415) 626-0469 (message number). ***** [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display