Subject: AIDS Treatment News #188 Date: Dec 03 1993 (1059 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& Copyright 1993 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS #188, December 3, 1993 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: [items are separated by "*****" for this display] New Task Force for AIDS Drug Development New Study: Tat and NF-kB Inhibitors Work MUCH Better Together MAC: Results Emerging from Long-Term Research Kaposi's Sarcoma: Taxol, TNP-470 Trials at National Cancer Institute AIDS Activism -- Future Directions Activist Groups, Buyers' Clubs, and PWA Coalitions, U. S. and Canada ***** New Task Force for AIDS Drug Development by John S. James In a major new effort to overcome the obstacles to effective AIDS drug development, a high-level task force including government agencies, the pharmaceutical industry, other physicians and scientists, and the AIDS community, will recommend and implement ways to avoid past roadblocks and streamline the discovery and testing of new AIDS drugs. This task force, to be composed of decision makers such as heads of agencies and presidents or vice presidents of pharmaceutical companies, will report to Dr. Donna E. Shalala, Secretary of Health and Human Services, who has the authority to implement changes across Federal health agencies when required. The new panel, the National Task Force on AIDS Drug Development, will be chaired by Dr. Philip Lee, Assistant Secretary for Health, and will consist of 15 members. The other 14 have not yet been chosen, and the public can make nominations through the month of December. Participants in the November 30 press conference which announced the Task Force included: Secretary Shalala; Assistant Secretary Lee; Dr. David Kessler, Commissioner, Food and Drug Administration; Dr. Harold Varmus, Director, National Institutes of Health; Dr. P. Roy Vagelos, Chairman and CEO, Merck & Company, Inc. ; Dr. Edward Scolnick, President, Merck Research Laboratories; Dr. Anthony Fauci, Director, Office of AIDS Research, National Institutes of Health; Ms. Kristine Gebbie, National AIDS Policy Coordinator; Mr. Moises Agosto, National Minority AIDS Council; Mr. Derek Hodel, AIDS Action Council; and Mr. Victor Zonana, Deputy Assistant Secretary for Public Affairs, HHS. The Task Force will be administered by the Office of AIDS and Special Health Issues of the U. S. Food and Drug Administration. Dr. Randy Wykoff, the director of that office, told AIDS TREATMENT NEWS how this panel differs from other groups in the past: "One, this Task Force is highly focused, on drug development; it is not a broad mandate on AIDS. Second, it will be the first process of this type that will make recommendations to the HHS Secretary, who has the authority and ability to implement them. Third, this will be the first time that we have this kind of commitment with everyone at the table; industry buys in, we have community support, and all aspects of government are there. The Task Force can make recommendations that will make a difference. "One reason for keeping the Task Force small is to make sure that the people on it are the true decision makers, who know the issue and can implement decisions. None of us want to have another process of simply making recommendations. "This Task Force will direct its efforts in two ways. One is toward any roadblocks that currently exist, either in perception or reality, that if removed would improve the likelihood of bringing good products into clinical trials and ultimately into clinical practice. "The task force will also ask if there are any good creative ideas that should be tried at this point. Without criticizing what has been done in the past, it is legitimate to say that it's almost 1994 and we still do not have highly effective agents. Is there anything different that we should try -- such as new approaches to screening products, new approaches to sharing information, or different approaches to toxicology, or clinical trial design, or regulatory processes? It will be useful to have a high- level body, one that can implement recommendations, look and decide where to go ahead." Shalala, Lee Statements The following sections from the statements of HHS Secretary Shalala, and Assistant Secretary (and Task Force chairman) Lee, provide background on the Task Force and the approach it is expected to take: Dr. Shalala: "The National Task Force on AIDS Drug Development, which I am announcing today, has a clear and critical mission: to identify, and remove, any barriers or obstacles to developing effective treatment. It will make certain that all possible productive avenues are pursued with vigor. "The members of the task force will be drawn from government, the pharmaceutical industry, academia, medicine, and the AIDS-affected communities. "This represents an unprecedented high-level collaboration among leaders in the field.... "But the sad fact today is that not a single New Drug Application for an antiretroviral agent awaits FDA approval. "No matter how much we shorten the pipeline, we cannot achieve our goal unless we start filling that pipeline with promising compounds. That is the purpose of the new panel." Dr. Lee: "To continually evaluate strategies and tactics and to build consensus, collaboration is required. Full participation is needed between government agencies, industry, the medical community, academia, and individuals who are HIV-infected, as well as those affected by the epidemic. Too often in the past, needed links have been missing or relationships have been adversarial, resulting in unnecessary duplication of efforts or potential drugs not being developed and evaluated as rapidly as they might, or utilized most effectively. "While working to remove the barriers, the Task Force will not scrap innovative and creative approaches used in the past. The Task Force will build on them. It will build on the innovations that have taken place at NIH. It will build on the regulatory initiatives implemented by the FDA. It will build on community-based efforts to improve the quality and direction of clinical research. And it will build on efforts to bring together people working to find effective treatments of AIDS and HIV-related disease. "From the start, the Task Force will seek input from numerous groups including the Institute of Medicine, the Future Directions of AIDS Research Project, and the many Federal Advisory Committees that have done ground-breaking work in AIDS drug development. Open collaboration and communication are essential to move forward. "The first meeting of the Task Force will be held this winter -- or at the latest -- in early spring. Over the next thirty days, nominations will be sought from the public as to who should serve. Public nominations will help create a task force that is composed of people with both competence and compassion and the diversity that is reflective of the epidemic. "The Task Force represents a very important step forward and I hope it may be a model for other issues. For the first time in the fight against HIV-related disease, the United States will have a systematic over-arching effort to coordinate drug development to treat HIV infection and HIV- related diseases. The Task Force will serve as an example of how government and private leadership can be used to focus national resources on national problems. By working in partnership -- the pharmaceutical industry, the not-for- profit sector, private citizens, and the government, can and will get results." Comment No one can be sure what will come from this effort -- or what any medical research might produce. While it is impossible to guarantee results, we can and must bring the right people, resources, procedures, and commitments to the job. The creation of this Task Force shows that, finally, there is the national commitment to the kind of coordinated program that can get results. Address for Nominations To nominate persons for the Task Force, write to: Dr. Randy Wykoff, Office of AIDS and Special Health Issues, U. S. Food and Drug Administration, Room 12-A40, 5600 Fishers Lane, Rockville, MD 20857. Nominations must be received in December. The Public Health Service will compile them and make recommendations to Secretary Shalala. A formal notice is being published in the FEDERAL REGISTER, December 2. ***** New Study: Tat and NF-kB Inhibitors Work MUCH Better Together by John S. James In a potentially important laboratory study published December 1, a research team at Dana-Farber Cancer Institute and Harvard Medical School found that two different drugs (the Tat inhibitor recently abandoned by Hoffmann-La Roche [Ro 24-7429], and pentoxifylline, a prescription drug) worked much better together in a laboratory test than would have been expected from how well they worked separately -- so much better that the concentration of both drugs could be reduced almost ten times to still produce the same effect as the larger concentration of each substance alone. The mechanism of action of both of these drugs involves a part of the HIV virus known as the LTR (long terminal repeat). When the LTR is activated, it causes the virus to reproduce. But there are at least two different, independent pathways to activate the LTR. One is stimulated by the Tat protein, which is produced in HIV-infected cells but never in normal cells. Another is stimulated by NF-kB (NF-kappa B), a substance which is normal and necessary in the body. When both stimuli are present, they can cause a "superactivation" of HIV -- as much as 60 times the effect of each one alone. [The laboratory test reported did not test the drugs on live HIV, but instead used a genetically engineered cell developed to easily screen for substances which inhibit the LTR.] The new study suggests that the combination of both drugs might be an effective treatment, even if each one alone is not sufficient. Ro 24-7429 was abandoned after a report at the International Conference on AIDS (June 1993, in Berlin) that it did not show an antiviral effect in patients -- even though blood levels should have been enough to produce that effect. But there have been a number of questions about whether it was abandoned too early. There are rumors which we plan to investigate further -- one, for example, that some people in the trial never took the drug, but gave it to friends who were more seriously ill but who could not get into the trial themselves. If you have any information about human use of Ro 24-7429 -- especially anyone taking it either with pentoxifylline, or with antioxidants such as NAC or vitamin E -- please contact AIDS TREATMENT NEWS, 415/255-0588. References Biswas DK, Ahlers CM, Dezube BJ, and Pardee AB. Cooperative inhibition of NF-kB and Tat-induced superactivation of human immunodeficiency virus type 1 long terminal repeat. PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES, USA. December 1, 1993; volume 90, pages 11044-11048. ***** MAC: Results Emerging from Long-Term Research by Denny Smith New drugs and drug combinations are providing some serious ammunition for treating an infection that was once counted among the most elusive of opportunistic diseases, Mycobacterium avium complex (MAC). MAC is an umbrella description of a number of strains of mycobacteria that many people with low CD4 cell counts can expect to be troubled with. It causes symptoms typical of many AIDS- related infections, such as fevers, fatigue and wasting. Current Prophylaxis, Treatment Like Pneumocystis carinii, MAC organisms are almost impossible to avoid in the environment, and everyone is assumed to have been exposed to them. But it may be possible to prevent latent, asymptomatic infections from progressing to active, disseminated disease. This is called MAC prophylaxis, and earlier this year, the Food and Drug Administration approved the drug rifabutin for exactly that purpose. A number of older drugs which were tried in the past to treat active MAC gave tepid results. These drugs included amikacin, ciprofloxacin, clofazimine, ethambutol and rifampin. Unfortunately, as in the treatment of tuberculosis, one or more of the strains of mycobacteria often develop resistance when these drugs have been used alone. Consequently, a solid consensus in the researcher/physician community holds that active MAC cannot be effectively treated with a single agent, that a combination of drugs is necessary. The same might become true for prophylaxis. Two relatively new antibiotics, clarithromycin and a related drug, azithromycin, are widely used for treating MAC, and might also be useful in prevention. They happen to be approved for various non-AIDS related conditions, so they are already available. Clarithromycin is expected soon to be approved by the FDA specifically to treat active MAC. In the September issue of PAAC NOTES (a monthly news journal of the Physicians Association for AIDS Care, in Chicago), Richard E. Chaisson, M. D., offered an overview of current MAC prophylaxis and treatment. Interested persons can order that issue by calling PAAC at 312/222-1326. Dr. Chaisson's recommendation for prophylaxis involves the use of rifabutin, 300 mg daily, with clarithromycin or azithromycin on hand as an alternative. For treatment, Dr. Chaisson combines clarithromycin (500 to 1000 mg twice daily) or azithromycin (500 to 1000 once daily), with two of the five older drugs mentioned above. This approach is very close to that used by several other physicians we recently spoke with, including Michael Gottlieb, M. D., Medical Director of the Immune Suppressed Unit at Sherman Oaks Community Hospital in Southern California. Dr. Gottlieb initially offers his patients with active MAC clarithromycin, but it so frequently causes gastrointestinal upsets that he often switches to azithromycin, 500 mg once or twice a day. To this he adds ethambutol, 400 mg twice a day, ciprofloxacin, 500 mg twice a day, and clofazimine 100 mg once a day. Since taking these drugs all together can cause nausea, even without the clarithromycin, Dr. Gottlieb recommends staggering them throughout the day. And if these oral drugs do not resolve at least the fevers associated with MAC, he gives amikacin, which is administered intravenously. Amikacin is an aminoglycoside, a class of drugs that can cause irreversible ototoxicity (damage to the organs of hearing and balance) or kidney toxicity. Dr. Gottlieb explains this to patients, and makes sure that "peak and trough" levels of the drug are monitored to minimize this danger. Experimental Approaches There are a number of new drugs under study in laboratory or clinical trials (or both) for the treatment of MAC; many of them were discussed at the annual Interscience Conference on Antimicrobial Agents and Chemotherapy (ICAAC) held last month in New Orleans. (Because MAC is related to the organisms that cause tuberculosis and leprosy, researchers often approach test tube experiments on the three infections with the same drugs. People with HIV must be concerned about tuberculosis as well as MAC, and so will benefit from mycobacterial research in general.) For interested researchers and activists, we list those drugs below, followed by the numbers of the relevant abstracts. In addition to azithromycin (abstract numbers 284, 1351) and clarithromycin (abstracts 76, 286, 287, 288, 658, 1344, 1349), we noted roxithromycin, (abstract 1343), gangamicin (abstract 77), isepamicin (abstracts 76, 1351), sparfloxacin (abstracts 1344, 1351), ofloxacin (abstracts 79, 1343), levofoxacin (abstract 1498), trifluoperazine (abstract 1345), several code-named agents -- BAYy3118 (abstracts 75, 76), CI-960 (abstract 79), DU6859a (abstracts 79, 80), VUF 8514 and VUF 8842 (abstract 74), and KRM 1648 (abstracts 69, 70) -- and liposomal preparations of two older drugs, capreomycin (abstract 285) and gentamicin (also known as TLC G65, abstract 1078). Many abstracts also discussed the use of older MAC drugs, largely for the purpose of comparing their effectiveness to the newer agents. There are too many of those citations to be listed here, with one interesting exception. Dapsone, a drug long used to treat leprosy, and more recently to prevent pneumocystis, was twice discussed as a possible prophylaxis against MAC. In a mouse study, dapsone was added to clarithromycin (abstract 287) with beneficial effects on the reduction of bacteremia. And in a study of pneumocystis prophylaxis, dapsone combined with pyrimethamine (abstract 1080) seemed to reduce the overall incidence of mycobacterial infections, compared to the patients receiving aerosolized pentamidine. Only an expert can distinguish the truly promising agents under study from those that are just mildly interesting, and so we asked infectious disease researcher Luiz Bermudez, M. D., to share his impressions of the new possibilities. Dr. Bermudez is a senior scientist at the Kuzell Institute in San Francisco, and he coauthored several reports presented at ICAAC. Dr. Bermudez surmised that sparfloxacin is probably not potent enough to treat active MAC, but it may prove adequate as prophylaxis, when a weaker drug would ostensibly suffice. Sparfloxacin is now in phase I clinical trials. He also said that ofloxacin and levofloxacin are not very convincing in MAC studies, but might be more useful for tuberculosis. [The TB research at ICAAC was also interesting, and warrants a separate review. But we want to point out an especially intriguing report describing the "promising" activity of paromomycin (by injection) against multi-drug resistant Mycobacterium tuberculosis in laboratory mice. The report (abstract 290) is relatively surprising, considering that paromomycin (trade name Humatin) is a very common, well- established drug long used to treat intestinal parasites. Paromomycin made a similar splash over three years ago at the Sixth International Conference on AIDS, where doctors from Houston reported good results using it to treat cryptosporidiosis, an opportunistic infection that had defied a number of newer, more exotic treatments (see AIDS TREATMENT NEWS #111, September 21, 1990).] Most of the research presented at ICAAC was done in the test tube or with animals, and so is not immediately useful to physicians and patients. Furthermore, much of the research relevant to MAC was presented by scientists from France, Japan and Italy, and some of the agents they studied may not be easily accessible to U. S. researchers or clinicians. Of those new potential anti-MAC agents under study in the U. S., Dr. Bermudez felt, in fact, that only two appear to be really worth pursuing as therapies for active MAC -- liposomal gentamicin, which is an aminoglycoside like amikacin, and KRM 1648, a rifamycin like rifabutin. His lab is working with the latter drug in animal studies, and liposomal gentamicin is now in phase I and II clinical trials. The liposomal gentamicin must be administered intravenously, which has disadvantages, except in two aspects. For one, the effectiveness of oral MAC drugs is often hampered by the poor gastrointestinal absorption common in persons with this illness. Additionally, the nature of liposomes may allow one dose to last for a week or more, minimizing the inconvenience of IV administration. [Note: Liposomes are microscopic spheres of fat, designed to target the drug they contain to where it is needed in the body.] Interestingly, Dr. Bermudez said that a liposomal formulation of amikacin is probably even stronger than gentamicin, but has not yet entered clinical trials for treating MAC. We contacted the developer of liposomal amikacin, Vestar Inc., in San Dimas, California, to determine the progress of this promising treatment. Michael Ross, Executive Vice President of Medical Regulatory Affairs, told us that a phase I dose-ranging study of liposomal amikacin (Mikasome), conducted in Brussels, showed the formulation to be safely tolerated in volunteers who had HIV but were not experiencing symptomatic MAC. He said Vestar is now planning phase II (efficacy) trials of Mikasome for the treatment of various bacterial infections, probably including MAC, and probably to be conducted in the U. S. Mr. Ross also thinks it could be a good candidate to test against tuberculosis. He pointed out that small changes in the lipid structure can make a very large difference in biological activity. As mentioned above, one of the problems with the standard versions of aminoglycosides has been potentially serious side effects following long-term use. But when drugs are encapsulated in liposomes, the active agents can be transported to the interior of targeted cells, rather than simply drenching the entire body; many side effects that once limited the practicality of a drug can be a lesser problem. Obviously, liposomes could be a very dynamic technology for improving AIDS therapies. Vestar, for example, is also studying liposomal formulations of amphotericin and daunorubicin. Of the drugs now available for treating active MAC, Dr. Bermudez would use clarithromycin or azithromycin combined with ethambutol, and perhaps clofazimine if a third drug is warranted. He sees less value in the use of ciprofloxacin or rifampin. Dr. Bermudez also noted that GM-CSF (granulocyte-macrophage colony stimulating factor, a growth factor that increases the number and function of these cells), may become a useful adjunct to current MAC treatment. GM-CSF, combined with azithromycin, is being studied in clinical trials for this purpose. It is already FDA- approved to treat people recovering from bone-marrow transplants. In sum, physicians have a number of drugs available to them for the treatment and the prophylaxis of MAC, with several more in clinical trials. Dr. Gottlieb suggests that physicians and their patients be flexible with MAC therapy: certain combinations may work for some individuals and not for others. There may not yet be a "standard of care" for MAC as concrete as that for PCP or CMV disease, but neither is there cause for the pessimism that once made MAC one of the "untreatable" infections. ***** Kaposi's Sarcoma: Taxol, TNP-470 Trials at National Cancer Institute Two separate trials of novel KS treatments are now recruiting at the U. S. National Cancer Institute, in Bethesda, Maryland. One is testing Taxol, which is best known as a treatment for ovarian cancer. Another is testing TNP-470, one of a new class of drugs which works by inhibiting blood vessel growth, when such growth is not wanted. (KS is caused by abnormal growth of blood vessel.) For background on TNP-470 (previously called AGM-1470), see AIDS TREATMENT NEWS #135, September 20, 1991. On November 15, AIDS TREATMENT NEWS received an electronic mail message from the researchers about the current studies: "Please see below for description of the trials. Of note, we have had a number of good responses to Taxol with fairly mild toxicity (slight fatigue, brief myelosuppression, and hair loss). Also, our trial of the novel angiogenesis inhibitor TNP-470 has caused *no* clear toxicity to date, and the one patient on the highest dose level may be responding to this drug. "We are intrigued by these early results and would like to enroll these studies as rapidly as possible. However, patients have been scarce, especially for the TNP-470 trial (which is quite time-consuming, with its every-other-day administration schedule)." All treatment costs are paid by the National Cancer Institute. On the first visit, for screening, volunteers must cover their own travel expenses; later, they will be paid for travel home, or $45 per day when they stay in the Bethesda area. Volunteers often rent rooms from families near the National Institutes of Health campus, which is less expensive than staying in a hotel. Taxol "Paclitaxel (Taxol) is a drug derived from the Pacific yew tree that has been found to be effective against ovarian carcinoma. We are presently testing the activity of paclitaxel in a Phase II study in patients with Kaposi's sarcoma. Paclitaxel will be administered as a three hour infusion every 21 days in an outpatient setting. Activity and response will be determined. In addition, the toxicity profile in HIV-positive patients will be identified. Patients must be on a stable regimen of single dose or combination antiretroviral therapy for one month before entry. Patients also must have received no more than one prior regimen of cytotoxic chemotherapy (for the purpose of this protocol, vincristine and vinblastine are considered as a single regimen) and are required to be off chemotherapy, radiation, intralesional therapy and interferon for one month before starting taxol. Patients with pulmonary KS causing substantial symptoms (e.g. dyspnea with minimal exercise) or with other acute, life-threatening KS will be ineligible for this study. For more information, please contact Jill Lietzau at 301-496-8959, or Wayne Saville, M. D., at 301-402-3630." TNP-470 "TNP-470 is a an analog of the fungal product fumagillin that has been shown to be a potent inhibitor of angiogenesis. It is different from most traditional anti- cancer drugs in that it has caused little or no bone-marrow toxicity or immunosuppression in test animals. The major toxicity in animals (seen when it was given as a bolus) has been bleeding. We are recruiting patients for a Phase I trial with this agent in patients with Kaposi's sarcoma. Patients will receive TNP-470 every other day for 6 weeks. If the drug is well tolerated, patients will have the option to receive it for up to an additional 12 weeks. Because the drug is given by vein every other day, patients must be from the DC area or must stay in the Maryland/D. C. area for the entire treatment. The toxicity, pharmacokinetics and activity of TNP-470 will be studied. Different patients will receive increasing doses of TNP-470 until the maximum tolerated dose is identified. Patients must be on a stable dose of single-agent or combination antiretroviral therapy for one month before starting TNP, and are required to be off chemotherapy, radiation, intralesional therapy and interferon for three weeks before starting the trial. For more information, please contact Kathy Wyvill or Jill Lietzau at 301-496-8959 or James Pluda, M. D., at (301) 496-1196." ***** AIDS Activism -- Future Directions by John S. James Where is AIDS treatment activism heading for the future? We see several themes. (1) If mainstream research continues steps toward improvement, the slow shift from confrontation toward other kinds of advocacy will continue. The key to getting things done is the professional consensus of physicians, researchers, and officials; advocacy can influence this consensus when our positions have important merit. (2) Demonstrations have had less role since the passing of the hostile national administrations which had ruled since the beginning of the epidemic. The main problem now is with Congress, where demonstration is seldom the remedy of choice. (3) When a demonstration is needed -- for example, against a rogue pharmaceutical or healthcare company, or public official, who flies in the face of enlightened professional consensus -- what we may really need is a comprehensive MEDIA CAMPAIGN, with demonstration as one tactic among many. (4) We must do MUCH better in organizing people to communicate with their elected representatives and other public officials when necessary. The Next Step: New Affinity Groups? The vision that most interests us, for either gay or AIDS organizing, is a network of greatly enriched affinity groups. Activists have long used affinity groups for coordinating actions at demonstrations and dealing with arrests. Similar support groups form around individuals with AIDS, to care for them as their health declines. From these experiences can grow a kind of group which provides the personal support which a good family or church can give, while also supporting more effective political organizing, especially communicating with public officials, than we have had in the past. Organized affinity groups could offer security in time of trouble, assistance in keeping one's life together and dealing with the world, professional or job contacts and opportunities, ways to meet people, and cultural and educational advantages, as well as medical and service referrals, and mutual support for the otherwise solitary work of political letters and calls. Affinity groups are more personal than other organizations, while at the same time providing channels for national communication. They work best when they have a shared cause, one that goes beyond the individual and beyond the members' mutual benefit. The groups should be self selecting and governing, and may be quite different from each other; some, for example, may be religious, some mainly cultural, some mostly political, some international, and some using computer networks to connect people who seldom or never meet physically. Some may focus on a specialized task, such as coalition building with a specific constituency, or countering misinformation in the media. While the size of the groups will vary, they may work best with fewer than 12 or 13 people -- which is generally considered the largest size that can function without a bureaucracy. Leaving a few potential "slots" empty may facilitate external links with other groups. [This model works for Concerned Women for America, described in the FIGHT THE RIGHT ACTION KIT of the National Gay and Lesbian Task Force as "a multi-issue organization with tremendous grassroots organizing skills and an innovative '535' program they use with great effectiveness to influence Congress." According to an article by Steven Gardiner, Research Director, Coalition for Human Dignity, also reproduced in the NGLTF kit, CWA may have "the most effective multi-issue, grassroots lobbying organization in existence... group; seven such groups form a chain; and seven chains form a local chapter of CWA which is run under the direction of a chapter leader.... Chapters are under the direction of a regional director who reports to the national CWA headquarters." The "535 program (435 Representatives and 100 Senators) instructs all CWA members to drop an avalanche of letters and phone calls to legislators and public officials at both their Capitol Hill and home offices"; the chapters remain autonomous on local issues. Where there is no chapter, individuals who inquire are directed to a regional coordinator for assistance in forming one.] The AIDS community may choose a less hierarchical model, with national or regional organizations making action and policy suggestions, and focusing on providing the leadership necessary to make the whole movement a success. What seems to count is the close personal association, which most political organizations, modeled loosely on business meetings, do not readily provide. We believe that the affinity group, in one form or another, will be a key ingredient of effective activism in the future. ***** Activist Groups, Buyers' Clubs, and PWA Coalitions, U. S. and Canada Updated December 1993 The following is a directory of AIDS activist groups, buyers' clubs, and PWA coalitions. It includes local and regional contacts for individuals who want to get involved with AIDS activism or for those seeking experimental treatments or community support services. We have only listed phone numbers we could verify; some of these are home telephones, not offices. Within states, the listings are alphabetical. [Note: Since 1990 AIDS TREATMENT NEWS has published a list of ACT UP chapters, PWA coalitions, and buyers' clubs. For a view of activism in changing times, see "AIDS Activism -- Future Directions," in this issue.] For information about new ACT UP affiliates, contact the ACT UP Network, 414/483-0376. To obtain information regarding new PWA coalitions, contact the National Association of People Living With AIDS (NAPWA), 202/898-0414. If you know of organizations which you think should be included in next year's directory, please contact AIDS TREATMENT NEWS at 800/TREAT-1-2. The classifications are: "A" -- political activist and direct action groups; "B" -- buyers' clubs for alternative or experimental treatments; "C" -- coalitions and community networks organized by and for people living with AIDS. ALABAMA Birmingham Birmingham AIDS Outreach 205/322-4197 C Huntsville AIDS Action Coalition 205/533-2437 C ARIZONA Phoenix The Arizona Human Rights Fund 602/530-1660 A Phoenix Phoenix Body Positive 602/264-7414 C Tucson La Frontera Center/Positively Native 602/741-2351 C Tucson PWA Coalition Tucson 602/770-1710 B,C ARKANSAS Little Rock The AIDS Outreach of Arkansas 501/377-1525 C CALIFORNIA Fresno ACT UP/Fresno 209/843-2748 A Lompoc ACT UP/Lompoc 805/736-5136 A Long Beach Being Alive Long Beach 310/495-3422 C Los Angeles ACT UP/Los Angeles 213/669-7301 A Los Angeles Being Alive 213/667-3262 C Oakland ACT UP/East Bay 510/836-4401 A Orange County ACT UP/Orange County 714/253-0185 A Orange County Being Alive Orange County 714/362-5483 C Palm Desert Alternative Supplements Club 619/568-1725 B Redondo Beach Being Alive South Bay 310/544-2702 C San Diego ACT UP/San Diego 619/280-2961 A San Diego Being Alive San Diego 619/291-1400 C San Francisco ACT UP/Golden Gate 415/252-9200 A San Francisco ACT UP/San Francisco 415/621-0291 A San Francisco Healing Alternatives 415/626-2316 B San Mateo San Mateo County AIDS Program 415/573-2385 C Santa Barbara ACT UP/Santa Barbara 805/569-3299 A Van Nuys Being Alive 818/908-3840 C Ventura The Unity Pride Coalition 805/650-9546 A West Hollywood Being Alive 310/854-1327 C COLORADO Denver PWA Coalition Colorado 303/837-8214 B, C CONNECTICUT Bethel AIDS Project Greater Danbury 203/778-2437 C Hartford ACT UP/Connecticut 203/224-7428 A New Haven ACT UP/New Haven 203/732-2229 A DISTRICT OF COLUMBIA Washington Carl Vogel Center 202/289-4898 B Washington DC Buyers' Club (DCBC) 202/232-5494 B Washington Lifelink 202/547-7813 C FLORIDA Clearwater AIDS Coalition Pinellas 813/449-2437 C Dade County PWA Coalition 305/573-6010 C Daytona Beach Outreach Inc. 904/672-6069 C Fort Lauderdale PWA Health Link 800/456-4792 B, C Jacksonville PWA Coalition 904/398-9292 C Melbourn Beach ACT UP/Space Coast 407/784-5868 A Miami ACT UP/Miami 305/787-1131 A Miami Body Positive 305/576-1111 C Miami Cure AIDS Now 305/375-0400 C Miami PWA Coalition 305/573-6010 C Orlando Trans-AIDS Support Services 407/352-2352 A, B, C Palm Beach PWA Coalition 407/697-8033 C Pompano Beach PWA Coalition Broward Cty. 305/565-9119 C Sarasota AIDS Manasota 813/954-6011 B,C Tampa ACT UP/Tampa Bay 813/882-5359 A Tampa DACCO 813/223-4648 C Tampa PWA Coalition Tampa Bay 813/238-2887 C West Palm Beach ACT UP/West Palm Beach 407/433-9222 A GEORGIA Atlanta ACT UP/Atlanta 404/874-6782 A Atlanta AIDS Survival Project 404/874-7926 C Atlanta Atlanta Buyers' Club 404/874-4845 B Macon The Rainbow Center 912/750-8080 C HAWAII Honolulu ACT UP/Hawaii 808/524-7438 A Honolulu PWA Coalition 808/948-4792 C ILLINOIS Chicago ACT UP/Chicago 312/509-6802 A Chicago Chicago Women's AIDS Project 312/271-2070 C Chicago Options for AIDS Treatments 312/509-5127 B Chicago Test Positive Aware Network 312/404-8726 C INDIANA Indianapolis ACT UP/Indianapolis 317/635-2712 A Indianapolis The Damien Center 317/632-0123 C IOWA Davenport Quad Cities AIDS Coalition 319/324-8638 C Waterloo Cedar AIDS Support System 319/292-2437 C KANSAS Kansas City ACT UP/Kansas City 816/753-5930 A LOUISIANA Baton Rouge ACT UP/Capitol 504/343-3375 A New Orleans ACT UP/New Orleans 504/546-3631 A New Orleans PWA Coalition 504/944-3663 C MAINE Portland ACT UP/Portland Maine 207/828-0566 A Portland PWA Coalition 207/773-8500 C MARYLAND Baltimore ACT UP/Baltimore 410/837-5203 A Baltimore AIDS Action Baltimore 410/837-2437 A, B Baltimore PWA Coalition 410/625-1677 C MASSACHUSETTS Boston ACT UP/Boston 617/492-2887 A Boston Boston Living Center 617/236-1012 C Boston Committee of Ten Thousand 617/344-9634 C Boston Multi-Cultural AIDS Coalition 617/442-1622 C Boston Positive Directions 617/262-3456 C Boston PWA Coalition Boston 617/266-6422 B, C Hyannis Cape Cod AIDS Council 508/778-5111 C Provincetown ACT UP/Provincetown 508/487-3049 A Provincetown Provincetown Positive 508/487-3998 C MICHIGAN Detroit ACT UP/Detroit 313/872-2427 A Detroit Friends Alliance 313/836-2800 C Grand Rapids Grand Rapids AIDS Res. Cntr 616/459-9177 C MINNESOTA Minneapolis ACT UP/Minnesota 612/374-9349 A Minneapolis The Aliveness Project 612/822-7946 C MISSISSIPPI Jackson PWA/HIV Project 601/373-8610 C MISSOURI St. Louis ACT UP/St. Louis 314/727-6792 A St. Louis Positive Voices 314/361-6918 C NEW JERSEY Collingswood AIDS Coalition S. N. J. 609/854-7578 C Fort Lee PWA Coalition N. J. 201/944-6670 C Highland Park ACT UP/New Jersey 609/771-6680 A NEW MEXICO Albuquerque NMAPLA 505/266-0342 C Santa Fe Rosina AIDS Center 505/982-5995 A, C Santa Fe TREAT 505/983-3633 A NEW YORK Albany Damien Center 518/449-7119 C Buffalo AIDS Alliance of Western NY 716/852-6778 C Ithaca ACT UP/Ithaca 607/227-0212 A Long Island PWA Coalition 516/225-5700 C New York City ACT UP/New York 212/5642437 A New York City DAAIR 212/725-6994 B New York City PWA Coalition/NY 212/629-3075 C New York City PWA Health Group 212/255-0520 B New York City Treatment Action Group (TAG) 212/260-0300 New York City Treatment Alternatives Project msg 255-0520 Rochester ACT UP/Rochester 716/328-5337 Utica ACT UP/Utica 315/853-6418 A NORTH CAROLINA Research Triangle ACT UP/Research Triang. 919/990-1197 A OHIO Cincinnati GLMA/ACT UP 513/861-6171 A Cleveland ACT UP/Cleveland 216-621-2233 C OKLAHOMA Oklahoma City ACT UP/Oklahoma City 405/447-4209 A Oklahoma City Other Options 405/728-3222 C OREGON Portland ACT UP/Columbia 503/240-0377 A Portland Oregon Minority AIDS Coalition 503/293-5870 C PENNSYLVANIA Philadelphia ACT UP/Philadelphia 215/925-7121 A Philadelphia We The People 215/545-6868 C Pittsburgh Cry Out!/ACT UP 412/683-9741 A PUERTO RICO Rio Piedras Coalition of Positive People 809/753-9443 C Santurce ACT UP de Puerto Rico 809/752-5123 A SOUTH DAKOTA Sioux Falls ACT UP/South Dakota 605/332-3966 A TENNESSEE Nashville Nashville Cares 615/385-1510 C TEXAS Austin ACT UP/Austin 512/477-2437 A Austin AIDS Services of Austin 512/451-2273 C Dallas ACT UP/Dallas 214/504-8720 A Dallas AIDS Resource Center 214/521-5124 C Dallas AIDS Services of Dallas 214/941-0523 C Dallas DBC Alternatives 214/528-4460 B Galveston AIDS Coalition of Coastal Texas 409/763-2437 C Houston ACT UP/Houston 713/433-2924 A Houston PWA Coalition 713/522-5428 C UTAH Salt Lake City PWA Coalition Utah 801/484-2205 C VERMONT Brattleboro Vermont PWA Coalition 802/222-5123 C WASHINGTON Seattle ACT UP/Seattle 206/726-1678 A Seattle People of Color Against AIDS Netw. 206/322-7061 C WEST VIRGINIA Morgantown Mountain State AIDS Network 304/292-9000 C WISCONSIN Madison ACT UP/Madison 608/251-7985 A Milwaukee ACT UP/Milwaukee 414/769-8708 A Milwaukee PLWA Coalition of Wisconsin 414/273-7592 C WYOMING Casper Wyoming AIDS Project 307/237-7833 C CANADA Halifax Nova Scotia PWA Coalition 902/429-7922 C Montreal CPAVIH 514/282-6673 C Ottawa Canadian AIDS Society 613/230-3580 C Toronto ACT UP/Montreal 514/527-2423 A Toronto Toronto PWA Foundation 416/506-1400 C Vancouver The BC PWA Society 604/893-2250 C ***** AIDS TREATMENT NEWS Published twice monthly Subscription and Editorial Office: P. O. Box 411256 San Francisco, CA 94141 800/TREAT-1-2 toll-free U. S. and Canada 415/255-0588 regular office number fax: 415/255-4659 Internet: aidsnews.igc.apc.org Editor and Publisher: John S. James Medical Reporters: Jason Heyman John S. James Nancy Solomon Reader Services and Business: David Keith Thom Fontaine Tadd Tobias Rae Trewartha Statement of Purpose: AIDS Treatment News reports on experimental and standard treatments, especially those available now. We interview physicians, scientists, other health professionals, and persons with AIDS or HIV; we also collect information from meetings and conferences, medical journals, and computer databases. 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. Subscription Information: Call 800/TREAT-1-2 Businesses, Institutions, Professionals: $230/year. Nonprofit organizations: $115/year. Individuals: $100/year, or $60 for six months. Special discount for persons with financial difficulties: $45/year, or $24 for six months. If you cannot afford a subscription, please write or call. Outside North, Central, or South America, add air mail postage: $20/year, $10 for six months. Back issues available. Fax subscriptions, bulk rates, and multiple subscriptions are available; contact our office for details. Please send U. S. funds: personal check or bank draft, international postal money order, or travelers checks. VISA, Mastercard, and purchase orders also accepted. ISSN # 1052-4207 Copyright 1993 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display