Subject: AIDS Treatment News retransmission Date: Jan 13 1989 (938 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1989 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS issue #72, January 13, 1989 CONTENTS: [***** appears here at each new item] January 1989: AIDS Treatment Status New Treatments to Watch, 1989 About AIDS TREATMENT NEWS: Past, Present, and Future Announcements: Natural Therapies Symposium; New Computer Phone Number; Montreal Conference Deadline ACT-UP Announcements: Quality of Care; Holistics; FDA-Portland Demonstration PWA Coalitions, ACT-UP Affiliates, and Buyers Clubs ***** January 1989: AIDS Treatment Status by John S. James What do we see happening with AIDS treatments in the com- ing year? While no cure is yet in sight, some very promising new treatment possibilities are now in view. Any one of them might lead to major improvement in AIDS therapy this year, even for those seriously ill. While more research is needed to make sure that these treatments do work, the big question in 1989 will be access. Will the research be done? Will treatments get to patients when clearly appropriate, despite formidable bureau- cratic, commercial, and political obstacles in the way? Existing institutions will not automatically provide access. Much will depend on grassroots efforts and organizations. Here are some of the developments and treatments we see as most important in 1989: * Early treatment. Some physicians believe that early treatment can reliably halt disease progression, perhaps indefin- itely. Others disagree. Because of the slow development of AIDS/HIV disease, it will take time before we know for sure. But systematic, unbiased followup of cases, both successes and failures, could quickly sharpen the available answers and improve decision-making guidance for patients and physicians. * Practical clinical trials. While comprehensive lists are not available, it is clear that much more useful testing of treatments is being done now than a year ago. Unfortunately most of the current management of clinical trials still does not reflect a sense of emergency; needless delays of weeks or months, caused by dysfunctional rules, are still easily tolerated. But many more trials, and more important trials, are happening now than a year ago. And during 1988 the relevant establishment -- the medi- cal, political, and media leadership -- became far more willing than ever before to acknowledge major shortcomings in drug development management, to openly discuss the issues and consider possibilities for improvement. * New drugs. Many promising antiviral and other treat- ments are now in view (see our list in the article below). While not cures, these treatments might be better than any now available. They could also provide options when existing treatments do not work, as well as new possibilities for combina- tion therapies. Unfortunately the treatments themselves and the research needed to make them useful are still usually out of reach. Existing government and corporate structures will not bring them to patients in 1989. But community activism could do so, through community-based research, through political advocacy, and through ongoing nuts and bolts work by self-help organizations. * Community-based research. The recognition and momentum achieved by New York's Community Research Initiative (CRI) is now allowing other organizations, such as San Francisco's Community Research Alliance (CRA) to develop much faster than otherwise possible. Community-based research not only empowers patients and organizes additional trials. It also builds a knowledge base to support expert public advocacy, sometimes for the first time ever, for correcting deficiencies in the medical-research system. (Advocacy-only organizations are also essential, but by them- selves they are unlikely to develop as much depth of knowledge about what does and does not work in the research process as groups which routinely work with the FDA or state authorities, pharmaceutical companies, principal investigators, scientific and ethical review boards, etc.) * Other advocacy and self-help organizations. ACT UP con- tinues to focus attention on lost opportunities to save lives. Some of the groups now have ongoing research arms to investigate behind the scenes and discover the causes of research bottlenecks and access obstacles. And a new kind of self-help group -- exemplified by the passive immunotherapy support group in the San Francisco area, which is doing the organizing necessary to provide access to this treatment option for its members and others -- may have long- range importance in providing a serious patient role in all fields of medicine and medical research, for AIDS and other diseases as well. * The new U. S. administration. At this time, a week before the inauguration of President-elect George Bush, initial signs look good. Transition-team staff members are well- informed. President-elect Bush must know that AIDS will not go away and will be a disaster for his administration unless handled properly. On the other hand, the new President must focus on economic and foreign problems. The AIDS response will depend on officials whose attitudes are unknown at this time. * Economic access issues. Here the prospects look poor, because of the prohibitive cost of medical care and the national budget deficit. AIDS is one disease among others in a nation which is increasingly choosing to control medical costs by simply abandoning those who cannot pay for care they need -- not only the poor but also part of the middle class, even some who are well insured. While the United States does not yet have the political will to seriously address the growing lack of access to care, we believe that some issues can be successfully pursued: * The AIDS community must resist attempts to pit dif- ferent disease constituencies against each other. Affordable health care is an issue for everybody. * All industrialized countries except the United States and South Africa have some form of national health insurance. The AIDS community can build needed contacts with other health groups by contributing to the effort to end the nightmare of unmanageable costs for catastrophic illness, a nightmare which will increasingly affect all but the richest or luckiest Ameri- cans, as insurance companies, employers, and government agencies find more sophisticated ways to renege on their clients and the public. * Localities greatly impacted by AIDS or any other disease -- like those impacted by hurricanes or other disasters -- need Federal help when the strain on local institutions becomes unmanageable. * Community-based research organizations can contribute directly to cost containment and access to care by making sure that low-cost treatments are studied. In the United States, the existing research system -- including public agencies as well as private companies -- only develops the most expensive treatment possibilities. Treatments which may cost a thousand times less, and have unique medical value as well, are usually ignored. In summary, the elements for major improvements in 1989 are already in place. But no existing institution will bring these benefits to patients automatically. Community activism will determine how much of the existing potential is developed and made available this year. ***** New Treatments to Watch, 1989 by John S. James Here are the potential AIDS therapies which we believe are most likely to become important in 1989. This particular list only includes treatments for AIDS/HIV itself; therefore it omits other important new develop- ments; for example, better antibiotics for opportunistic infec- tions or treatments for anemia. All the AIDS therapies we selected as most promising turned out to be antivirals -- although we did not start out with that criterion. We included only "new" treatments, meaning ones which were seldom or never available before, but might become accessi- ble for the first time in 1989. Therefore we did not consider existing treatments such as AZT or dextran sulfate. We based this selection mainly on "quality rumors", choosing those treatments which are generating enthusiasm among medical professionals familiar with them. A few were too new to have rumors; we included them because of the reputations of those involved in their development. The best source for additional information about most of these treatments is the new AIDS/HIV Experimental Treatment Directory (December 1988, Volume 2 Number 3), published by the American Foundation for AIDS Research (AmFAR). The directory can be obtained from AmFAR, 1515 Broadway, Suite 3601, New York, NY 10036-8901, 212/719-0033. * ddI (dideoxyinosine). ddI is a nucleoside analog (a drug in the same class as AZT), but appears much less toxic. The first human trial, with 15 early AIDS/ARC patients who have now taken the drug for at least 14 weeks, started last summer at the U. S. National Cancer Institute. Another phase I (dosage and toxicity) trial is taking place at the New York University Medical Center in New York City, and the University of Rochester Medical Center, in Rochester, NY; a separate phase I trial is taking place in Boston. No human results have been pub- lished, although there are reports of patient improvements. More importantly from our perspective, we have repeatedly heard rumors that the researchers working with ddI are very enthusiastic about it. These rumors were indirectly supported by a dispute between top officials of the U. S. National Cancer Institute (NCI) and the Food and Drug Administration (FDA). Dr. Samuel Broder, recently appointed head of the NCI, and Dr. Bruce Chabner, director of the cancer treatment division at NCI, strongly criticized the FDA for not allowing NCI to begin tests of ddI in children under two with AIDS, before adult trials were finished. Dr. Broder himself had run the early NCI trial, the first human use of ddI; he must know as much as anyone about how to use the drug. He would hardly have made an issue of the FDA's refusal to allow immediate testing in children if problems had been encountered. The new AmFAR directory (December 1988; see reference above) reports that ddI is believed to be ten times less toxic than AZT. "No substantial toxicity or bone marrow suppression have been noted in the NCI study; some patients have complained of mild headaches and lightheadedness. Because ddI is acid unstable, ingestion of an antacid is required prior to oral administration." The phase I clinical trial excludes persons with a history of heart disease or seizure disorder. ddI appears to be effective in macrophages, and to be able to cross the blood-brain barrier to some extent. What will happen next? At this writing, the phase I trial in New York City and Rochester has only recruited 9 of 42 subjects. The problem is not lack of interest by patients; New York University at least has a long waiting list. The bottleneck is in the study design. Each dosage level, starting with the lowest, must be tested for several weeks before the next higher dose can be tried (in different patients); this process must con- tinue until the maximum tolerated dose is reached. It is also rumored that limited hospital space has caused delay (each patient is hospitalized for the first two weeks of treatment, as is commonly done in phase I studies). It is possible that Bris- tol Meyers, which has rights to the drug, will begin a phase II trial without waiting to complete phase I, providing the FDA does not object. ddI is easy to manufacture. If it is bogged down in red tape and institutional inertia, an underground will be inevit- able. For more information, see the latest AmFAR directory and the information cited there. For the best published report on the dispute between the NIH and the FDA, see the Chicago Tribune January 5, 1989, page 4. * Passive immunotherapy. This treatment consists of transfusions of plasma from healthy HIV-positive donors, selected to have high levels of effective anti-HIV antibodies, to recipients who lack those antibodies because they have reached a stage in the disease where they can no longer produce them. The plasma infusions, commonly given about once a month, can be dramatically helpful even to some persons with advanced AIDS. Only about 20 people have received this treatment so far, but there is great interest among both professionals and patients. AIDS TREATMENT NEWS has already covered passive immunoth- erapy, so we will not repeat the details here. For more informa- tion, see issue # 67, October 21, 1988, and issue #70, December 1, 1988. You can also call the Passive Immunotherapy Project, a patient support group organized to obtain access to this therapy, at 415/549-9137. At this time the two major concerns about passive immu- notherapy are (1) that FDA restrictions may delay access for as long as a year or more, and (2) that some physicians may offer the treatment but not do it properly, endangering their patients. These concerns may seem to be opposites, but in fact they are two sides of the same problem. For the FDA could seriously hamper the organized, professional effort to do passive immunotherapy right -- driving this treatment into the separate practices of individual physicians, where the FDA does not have jurisdiction. Excessive restriction could stymie the high-quality, organized efforts, pushing the treatment into settings where there is less quality control. Antiviral herbs and extracts. This category consists of traditional medicinal herbs which have shown antiviral activity in laboratory tests. We listed the following three: * Hypericin. This chemical, found in the St. John's Wort plant, appeared to be an excellent anti-retroviral when tested in animals (against retroviruses other than HIV). It also shows anti-HIV activity in the laboratory. (Since few animals can be infected with HIV, the obvious animal test against HIV infection could not be done.) For background information on hypericin, see AIDS Treatment News issue #63, August 26, 1988, and issue # 64, September 9, 1988. So far we have received only one report of human use for AIDS/HIV, from a physician who has five patients who are using "Hyperforat", (a high-strength, standardized St. John's Wort extract available in Germany), with good to excellent results. It is generally believed that most of the St. John's Wort preparations available in the U. S. in health-food stores are worthless, because they do not contain enough hypericin, the active ingredient. Laboratory testing is now going on to see if any of the U. S. preparations appear likely to be useful. * Compound Q. This experimental treatment (also called GLQ 223, and not to be confused with coenzyme Q), is a protein derived from Chinese herbs. It worked very well in stopping HIV in laboratory tests, but no human trials have yet been done. Apparently the drug must be given intravenously, so human experi- ence with the herbs does not prove safety; toxicity tests are now being done in animals. The developer has applied to the FDA for permission to begin human testing. Compound Q was developed by Genelabs in Redwood City, CA, with consultants from the University of California San Francisco, and the Chinese University of Hong Kong. The project is funded by the Swiss pharmaceutical company Sandoz Ltd., which will have exclusive rights to the product. Genelabs has previously worked with Stanford University in screening chemicals for possible use in AIDS treatment. For more information about compound Q, see the AmFAR directory. Or see the article on new patents in The New York Times, January 7, 1989, or U. S. patent number 4,795,739, which was issued to the researchers early this month. * Chinese anti-infection herbs. A screening program con- ducted by researchers at the Chinese University of Hong Kong and the University of California at Davis tested 27 herbs and found that 11 of them showed anti-HIV activity; five of these almost completely stopped the virus in the test tube. For more informa- tion, see AIDS Treatment News issue # 61, July 29, 1988, and issue # 68, November 4, 1988. We do not have any new results at this time. Anecdotal results seem good. * FLT (fluorodeoxythymidine). In recent Swedish tests, FLT was found several times as effective as AZT both against HIV in laboratory cultures, and against SIV, a related retrovirus, in monkeys. The drug has previously been tried in humans, as it was tested and rejected as a cancer therapy 20 years ago in East Ger- many. The recent Swedish results were announced by Professor Bo Oberg, a virologist at Sweden's Karolinska Institute. FLT is being developed by the Medivir research company, which wants to sell the patent rights to a large pharmaceutical company, prob- ably one in the United States. Dr. Oberg previously headed an AIDS research team at Astra, the Swedish pharmaceutical company which also developed foscarnet, an anti-HIV treatment now also being used for CMV retinitis. The team screened almost 2,000 chemicals for anti-HIV activity. FLT causes bone-marrow suppression like AZT, but it appears to have much less toxicity at an effective dose. Dr. Oberg was quoted as saying that two years of labora- tory and human testing would be required before the drug could be marketed. We suspect that this time-frame reflects the fact that FLT will probably be developed in the United States (Sweden does not have enough AIDS/HIV patients to run trials). In the past, Astra has had major problems trying to conduct AIDS research in the U. S. ; see Wall Street Journal editorial of April 21, 1987 concerning Astra's frustration and withdrawal from U. S. trials of foscarnet two years ago.) Many people would be willing to take the risk of trying FLT now, with doses based on what worked in monkeys and on human toxicity data from the earlier cancer studies. We could know in weeks or months whether or not this drug could make a substantial contribution to AIDS treatment. Red tape alone -- or rather the empires and vested interests which benefit from it -- will extends that time to years, unless the public insists that AIDS be treated as an emergency instead of business as usual. * Azidouridine (AzdU). Formerly called CS-87, azidouri- dine showed no toxicity when given orally to animals in high doses. In laboratory tests, it is effective against HIV in macrophages as well as in blood cells. The first human trial is planned for early 1989. For more information, see the AmFAR directory. * D4T. Animal and laboratory studies have found this nucleoside analog considerably less toxic than AZT, and about as effective in stopping HIV. Human trials are planned for early 1989. For more information, see the AmFAR directory. * CD4. Despite the publicity about CD4, we put it last in this list of best treatments because so far we have not heard much enthusiasm from those with direct experience with the drug However, the current trials were not designed to test for effi- cacy, and they started with very small doses. CD4 may prove effective in further testing. ***** About AIDS TREATMENT NEWS: Past, Present, and Future by John S. James This new-year issue provides an occasion to answer the frequent questions about AIDS TREATMENT NEWS. How do we get our information? How do we decide what treatments to cover? Where does the money come from? How did the newsletter begin? Who is involved? History AIDS TREATMENT NEWS began in May 1986 as a biweekly column in the San Francisco Sentinel, a gay newspaper. The column appeared there for over two years; starting this month it moved to a monthly San Francisco newspaper, Coming Up. (The newsletter will remain biweekly of course.) This writer was first involved with AIDS in 1985, and went "shopping" for an organization which could use research and writing skills. Mobilization Against AIDS suggested the Documen- tation of AIDS Issues and Research Foundation (DAIR) in San Fran- cisco. DAIR most wanted articles on experimental treatments, and suggested about a dozen for us to research. The first article that came together successfully happened to be about AL 721, and it was published in DAIR's newsletter in April 1986; the same article is also issue #1 of AIDS TREATMENT NEWS. (DAIR still pub- lishes its newsletter, DAIR Update, and it also maintains an AIDS archive open to the public. For more information, call DAIR at 415/552-1665.) Several months later there was so much demand for back issues that we started the newsletter. The first issue was in January 1987, but we republished the earlier columns as back issues. This writer had no medical training, but had worked several years doing statistical computer programming for medical research projects, and also had some journalistic experience. (He is known in the computer field for a series of articles on then-little-known computer language called Forth, and also for developing a computer-communication program called The Conference Tree.) How was AIDS TREATMENT NEWS financed? In 1986 there was no prospect of funding for this work, because of our lack of credentials, and because of the disinterest and hostility toward treatments in the AIDS service community. "Beautiful death" ideas were strong in San Francisco, and treatment information was regarded as quackery, false hope which interfered with the pro- cess of accepting death. We realized that the newsletter would have to be self-financed, so we set a regular price in the low- to-middle range of professional newsletters, and a much lower PWA price; the latter was computed to cover the incremental cost of sending each issue (including labor), allowing circulation to expand indefinitely even at the low rate. Meanwhile the professional-rate subscriptions pay for research and overhead. We spent $10,000 starting AIDS TREATMENT NEWS, not counting dona- tion of our own time, but it could have been done for much less; for example, we were so concerned to get the material out that we did not send bills for eighteen months, but kept sending issues whether subscribers paid or not. Exposure in the Sentinel was crucial, however, as AIDS TREATMENT NEWS has seldom advertised; it is hard to establish its credibility except by word of mouth, and the issues themselves are the most effective advertisements. AIDS TREATMENT NEWS is organized as a sole proprietor- ship -- which any business is if it does not file papers to become something else. Recently we considered incorporating as a nonprofit, but the disadvantages outweighed the benefits. As a nonprofit we would in fact have become an organization specializ- ing in raising money from corporations and foundations. Funding organizations have handled AIDS poorly, first ignoring it entirely and now flocking from theme to theme as each new idea gets its moments in the sun. We have succeeded in large part because we have answered only to our subscribers, avoiding the pressures which have shaped almost everything else in AIDS. Operation Today At this time the paid circulation is over 5,000. About two thirds have paid the PWA rate, but we do not have exact fig- ures, because for additional confidentiality protection we put no indication into our database of what rate subscribers chose. This policy causes bills to always have both the PWA and professional-rate options, no matter what the subscriber paid before. Of course we never give out the list, but we took this precaution so that in case a copy were stolen, it would have no information about the health status of subscribers. Who works at AIDS TREATMENT NEWS? Four people (including the publisher) work full time , one is part time, and several work occasionally. Besides the publisher, the regular-hours staff consists of: * Denny Smith -- treatment information; * Thom Fontaine -- subscription services; * Tim Wilson -- office operations and marketing; and * Debra Kelly -- administrative support and special projects. Where do we get our information? Some people think that AIDS TREATMENT NEWS must have inside connections, but in fact we have surprisingly little access to non-public information. We are press, and officials seldom tell us anything they are not telling the rest of the press. Instead, we spend much time on the phone, and we usually first hear of a new treatment during a conversation about some- thing else. Then we use online databases for background informa- tion, so that we can interview experts intelligently; without access to computerized databases this newsletter would have been impossible. Then we talk with physicians, patients, scientists, or anyone else with first-hand experience with the treatment, and write the article based on these conversations. How do we decide what to publish? There is no simple answer. We try to avoid imposing medical ideas or biases of our own. Instead we look at the quality and credibility of informa- tion available. What has been published about a proposed treat- ment, and by whom? What are the reputations of the people behind it? What are their vested interests? What human experience is available? Has data been collected and assembled properly, and fully reported? Is there any independent confirmation? And if the information is correct, would it be useful to our readers? The Future We feel that it is our duty to continue to provide the kind of reporting our readers have come to expect. Our main focus is treatment information. But we believe that community organizing and public-policy awareness are also essential for saving lives. For the treatments now available cannot guarantee survival, even for those who can pay for any- thing. Individual action alone is not enough; only community action can assure that research and access are not obstructed by red tape, mindless rules, and indifference. AIDS TREATMENT NEWS has focused on covering the most promising treatments rather than debunking others. There are several reasons for this practice: * Readers want to hear about what is promising, not what isn't. * For every treatment we do cover, there are ten others we would cover if only we had time. It takes as long to investi- gate a bad treatment as a good one, so we choose to focus on the latter. * A debunking publication must spend considerable effort on legal preparation or defense. We could do so, but we would have to become a different kind of organization. * We want to keep information channels open; therefore we want people to be able to approach us without fear of being trashed, no matter how unconventional their ideas may be. * We want to avoid the easy mistake of rejecting unfami- liar ideas prematurely. On the other hand, times have changed. Two years ago so little was happening in AIDS treatment development that anything that moved was welcome. Now much is happening, so there is more concern that shallow but heavily promoted ideas can divert com- munity attention and waste energy which is critically needed to address the real treatment issues. On these and other matters, we want to hear from our readers. While we cannot answer all our mail, we always read it and consider it with respect. ***** Announcements Los Angeles: AIDS/Natural Therapies Symposium, Feb. 4-5 Over 60 speakers, including 40 M. D. s or Ph.D. s, are scheduled to speak at the "Advanced Immune Discoveries Symposium 1989" at the Regency Hotel, Universal City Los Angeles, February 4 and 5. The conference is organized by by Laurence Badgley, M. D., author of Healing AIDS Naturally. Dr. Badgley organized a similar but smaller conference, in August 1986; it was reported in AIDS TREATMENT NEWS issue #12. The speakers list for the February conference includes top experts, but also persons regarded as far outside the medical mainstream. A key paragraph in a press release announcing the conference gives the flavor: "The speakers scheduled for the conference read like a who's who of immune system research, including Candace Pert, Ph.D., 'Neuropeptides', George Solomon, M. D., Jaffee, M. D., Meir Shinitzky, Ph.D., from Israel, Laurence Badgley, M. D., author of Healing AIDS Naturally, Subhuti Dharmananda, Ph.D., a pioneer in herbal research of the immune system, David Steen- block, M. D., Jeffrey Bland, Ph.D., a well-known nutrition expert, Ann Wigmore, N. D., who will speak on 'Living Foods', Dana Ullman, M. P. H., on acupuncture, chinese herbs, and AIDS, and many more authorities on the immune system and natural thera- pies." Another flyer lists topics beginning with "The role of vitamins in metabolic imbalances. The impact of syphilis in AIDS. The cancer microbe and the origin of AIDS. The use of ascorbate in infectious diseases and allergies. HIV and AIDS: correlation not causation..." We expect that attendees may find important information at this conference, but that they should be selective. The cost for the two days is $155.00 regular, $120.00 student/senior citizen, or $275.00 with continuing-education credit. For more information, call the Foundation for Research on Natural Therapies (FRONT), at 213/394-3073. ***** AIDS TREATMENT NEWS Computer Access: New Phone Number The computer system we previously used to make AIDS TREATMENT NEWS available in computer-readable form is no longer running. The newsletter is available on another computer at 415/626-1246. This system, the AIDS Info BBS, is run by Ben Gar- diner in San Francisco. It does not have downloading software, so it will be necessary to save the terminal session and edit out any extraneous lines in order to obtain a good copy to make available online through other computer systems. Note: While AIDS TREATMENT NEWS is copyright, we give permission to make online copies available without payment or other arrangements with us, providing the material is not cut or editorially altered. ***** Montreal AIDS Conference Deadline for Discussion Ideas Feb. 1 The major AIDS conference of the year will be in Mont- real, Quebec, June 4-9. This conference seeks not only scien- tific papers, but also ideas for discussion groups, panels, or forums for a module of the conference entitled "AIDS, Society and Behavior", from PWA groups and non-governmental organizations working with AIDS. The deadline for letters of intent for these discussion-group ideas is Feb. 1. Letters of intent can be mailed or faxed to: The Secre- tariat, Suite 628, Vth International Conference on AIDS, 110 St. Catherine Street West, Montreal, Quebec, Canada H3B-1G7; fax number 514/874-0679. For more information you can also contact Don DeGagne of the Vancouver PWA Society, Suite 1, 1170 Bute St., Vancouver, B. C., Canada V6E-1Z6, fax number 604/682-8578. To obtain a packet for conference registration, hotels, etc. call 514/874-4006. Registration fees go up slightly after January. ***** ACT-UP Announcements HIV Quality of Care ACTION NOW, an ACT-UP affiliate in Orlando, is compiling a file of stories sent to them by anyone who feels they received inferior medical care for HIV. If you have had such an experi- ence, mail it to ACTION NOW, attn: Madame de Farge, 4618 Canna Dr., Orlando, FL 32809. The results of the survey will be pub- lished. Holistic Treatments An Alternative and Holistic.Treatment Subcommittee of ACT-UP New York will examine political aspects of holistic treat- ment and access. This group started only recently, and is now in the stage of discussing ideas and plans between different cities. This group is researching the treatments and will publish an introductory booklet. For more information contact the chairperson, Bob Lederer, 437 State St., Brooklyn, NY 11217, phone 718/237-0380, evenings and weekends. Portland, Oregon FDA Demonstration, Feb. 27 A demonstration against the FDA's refusal to release promising AIDS drugs is planned for the Portland, OR regional office of the FDA on Monday, February 27. There will be a legal picket, rally, and non-violent civil disobedience for those wil- ling to be arrested. For more information call ACT-UP/Portland, 503/224-8809, or ACT-UP/Seattle, 206/623-5061. In Memoriam: John Scafuti, 1949-1989 John Scafuti, who died of AIDS-related lymphoma, was well known in Florida as a pioneering PWA who fought hard to make new treatments available to the community. He worked to make aerosol pentamidine and chemotherapy for KS available to any Orange County, Florida, resident, free of charge to those who cannot afford it. John's life inspired countless friends to carry on the fight to survive. ***** PWA Coalitions, ACT-UP Affiliates, and Buyers' Clubs: A resource list compiled by Debra Kelly and Denny Smith In November, AIDS TREATMENT NEWS printed a list of organ- izations we thought would be useful to people with ARC, AIDS or HIV. Since then we have received quite a few corrections and additions to the list. We are continuing to focus on three kinds of organization which are important in the HIV treatment move- ment, and which seldom find their way into established resource manuals. Entries on the list which are followed by an "A" are local chapters of ACT NOW, a national organization advocating nonviolent direct action in the interests of PWA's (people with AIDS, ARC or HIV). "B" on the list indicates buyers' clubs, a network of outlets which provides access to alternative treat- ments, often at cost plus overhead. And "C" denotes PWA coali- tions, although some of these phone numbers are for umbrella organizations which agreed to extend their resources until the local coalition had a number of its own. We checked these phone numbers recently. Please let us know of any changes or additions. ALABAMA Birmingham, Living with AIDS Coalition 205/934-3262 C ALASKA Anchorage, PWA Coalition 907/338-0835 C ARIZONA Phoenix, Buyers' Club 602/264-7033 B Phoenix, PWA Coalition 602/224-5486 C Tucson, PWA Coalition 602/322-9808 C CALIFORNIA Los Angeles, ACT UP 213/668-2357 A Los Angeles, Nutritional Products 213/855-0533 B San Diego, ACT UP 619/233-9337 A San Diego, Alliance 7 619/281-5360 B San Francisco, ACT UP 415/563-0724 A San Francisco, Healing Alternatives 415/626-2316 B San Francisco, PWA Coalition 415/553-2560 C West Hollywood, Being Alive 213/667-3262 C COLORADO Denver, ACT UP 303/830-0730 A Denver, Health Action Project 303/894-8650 B Denver, PWA Coalition 303/837-8214 C CONNECTICUT New Milford, PWA Coalition 203/624-0947 C DELAWARE Wilmington, PWA Coalition 302/652-6776 C DISTRICT OF COLUMBIA Carl Vogel Foundation 202/547-5651 B Lifelink 202/833-3070 C NAPWA (National Association of PWA'S) 202/429-2856 C FLORIDA Broward County, PWA Coalition 305/763-5311 C Coconut Grove, Cure AIDS Now 305/856-8378 A Dade County, PWA Coalition 305/576-1111 C Jacksonville, PWA Coalition 904/396-2562 C Key West, PWA Coalition 305/296-5701 C Orlando, Action Now 407/351-6930 A & B Palm Beach, PWA Coalition 407/845-0800 C GEORGIA Atlanta, PWA Coalition 404/874-7926 C ILLINOIS Chicago, ACT UP 312/509-6802 A Chicago, Kapuna Wellness Network 312/536-3000 C Chicago, Test Positive Aware 312/728-1943 B INDIANA Indianapolis, PWA Coalition, Rick Buell 317/637-2720 C Lafayette, PWA Coalition 317/742-2305 C LOUISIANA New Orleans, PWA Coalition 504/944-1959 C MAINE Portland, PWA Coalition 207/774-6877 C MARYLAND Baltimore, PWA Coalition 301/625-1677 or 625-1688 C Hyattsville, PWA Coalition 301/464-6964 C MASSACHUSETTS Boston, ACT UP 617/492-2887 A Boston, PWA Coalition 617/437-6200 C Westfield, PWA Coalition 413/562-8465 C MICHIGAN Ann Arbor, Friends Huron Valley 313/747-9068 C Detroit, Friends PWA Alliance 313/543-8310 C MINNESOTA Minneapolis, The Aliveness Project 612/822-7946 B & C MISSISSIPPI Jackson, PWA Coalition 601/353-7611 C MISSOURI Kansas City, Heartland AIDS Resource Council 816/753-3215 C NEW JERSEY Bergenfield, PWA Coalition 201/387-1805 C Orange, ACT UP 201/836-8645 A NEW YORK Buffalo, Niagara Frontier AIDS Alliance 716/852-6778 C Long Island, PWA Coalition 516/324-2076 C New York City, ACT UP 212/533-8888 A New York City, PWA Health Group 212/532-0280 B New York City, PWA Coalition 212/532-0290 C OHIO Dayton, PWA Coalition 513/223-2437 C OKLAHOMA Oklahoma City, PWA Coalition 405/525-9887 C OREGON Portland, ACT UP 503/224-8809 A Portland, Genesis 503/234-5611 C PENNSYLVANIA Allentown, PWA Coalition 215/433-5444 C Philadelphia, We The People 215/545-6868 B & C RHODE ISLAND Providence, Project AIDS 401/277-6545 C SOUTH CAROLINA Columbia, Healing Circle Support Group 803/771-7300 C TENNESSEE Nashville, People Living With AIDS 615/385-1510 C TEXAS Austin, PWA Coalition 512/472-3792 C Dallas, Buyers' Club 214/526-5068 B Dallas, PWA Coaltion 214/941-0523 C Fort Worth, PWA Coalition 817/332-7966 C Houston, PWA Coalition 713/522-5428 C Port Arthur, PWA Coalition 409/724-2437 C San Antonio, PWA Coalition 512/821-6218 C UTAH Salt Lake City, PWA Coalition of Utah 801/359-5555 C VIRGINIA Richmond, Awakening 804/746-2178 C WASHINGTON Seattle, ACT UP 206/623-5061 A Seattle, People Living With AIDS 206/329-3382 C CANADA Toronto, AIDS Action Now 416/591-8489 A Vancouver, PWA Coalition 604/683-3381 C UNITED KINGDOM London, Vanmount, LTD 299-1409 WEST GERMANY Berlin, Deutsche AIDS-Hilfe 030-8969-060 ***** AIDS TREATMENT NEWS Statement of Purpose AIDS TREATMENT NEWS reports on experimental and complementary treatments, especially those available now. It collects informa- tion from medical journals, and from interviews with scientists physicians, and other health practitioners, and persons with AIDS or ARC. Long-term survivors have usually tried many different treatments, and found combinations which work for them. AIDS TREATMENT NEWS does not recommend particular therapies, but seeks to increase the options available. We will also examine the eth- ical and public-policy issues around AIDS treatment research. ***** [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display