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Newsgroups: sci.med.aids Path: sparky!uunet!usc!news.service.uci.edu!ucivax!ucla-cs!usenet From: Billi Goldberg <bigoldberg@igc.apc.org> Subject: ATN #167 Message-ID: <1993Jan23.135652.3790@cs.ucla.edu> Note: Copyright 1992, Dan R. Greening. Non-commercial reproduction allowed. Sender: usenet@cs.ucla.edu (Mr Usenet) Nntp-Posting-Host: sole.cs.ucla.edu Archive-Number: 14 Organization: unspecified Date: Fri, 22 Jan 93 22:09:02 PST Approved: phil@wubios.wustl.edu (J. Philip Miller) Lines: 843 &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& 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 Issue #167, January 15, 1993 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: Announcements: Oral Ganciclovir Prophylaxis Study Recruiting New York: Hypericin Trial Recruiting, P24 No Longer Necessary San Francisco, Salt Lake City: Acyclovir-Resistant Herpes Simplex Trial Tat Inhibitor Support Group Forming -- Baltimore, Boston, Cleveland, San Diego San Francisco: Conference on Speech, Hearing, and Vision Loss, February 26 San Francisco: "Caring for HIV Naturally" Four-Part Forum AIDS Czar Issue: Report to President, or Report to HHS? Resource List, January 1993: Activist Groups, Buyers' Clubs, and PWA Coalitions ***** ddI vs. AZT: New Results, No Press by Larry Tate For months, AIDS researchers have eagerly awaited the results of a major clinical trial ACTG 116A, comparing AZT with two different doses of ddI in volunteers with little or no previous antiviral treatment. Results were released on December 30 by the National Institute of Allergies and Infectious Diseases (NIAID). This study had been expected to tell which of these FDA-approved drugs was better for "first- line" therapy -- the drug given to people to begin treatment and continued, traditionally, until it becomes less effective. But the study gave a complex answer to this question -- or perhaps answered a different question. There has been little or no press coverage of the NIAID announcement. But ACTG 116A found major differences in survival and in disease progression depending on how the antivirals were used; as a result, this trial will influence thinking among patients, physicians and researchers for some time. For this reason, and because it is difficult for the public to get much information about the trial at this time, AIDS TREATMENT NEWS decided to cover the results in some detail. According to a NIAID statement, "the primary finding of the study was that the relative efficacy of ddI and AZT depends upon the duration of prior AZT therapy. Generally, AZT appeared to be more efficacious than ddI among patients who were AZT-naive at study entry, while ddI appeared more efficacious than AZT among those who were AZT-experienced, particularly those who had 8-16 weeks of prior AZT. This phenomenon was observed both for the primary endpoint of time to new AIDS-defining event or death, and the secondary endpoint of survival." The group with the best results of any in the study was the one that started ddI after 8-16 weeks of AZT use. ACTG 116A clarifies and extends last year's results from ACTG 116B/117, which compared the same ddI doses to AZT in people with prior AZT use of at least 16 weeks (with a median duration of about one year). That study showed a clear advantage for ddI in delaying disease progression, and the current FDA labeling of ddI reflects that finding, recommending ddI after "prolonged" AZT use. However, the earlier study did not show a clear survival advantage for ddI. The Trial ACTG 116A began in 1989 and ended in May 1992; volunteers wereeks. The trial was conducted at 38 sites, mostly centers of the AIDS Clinical Trial Group (ACTG). It included 617 people who either (1) had AIDS or advanced ARC and fewer than 300 T-helper cells, or (2) had asymptomatic HIV infection and fewer than 200 T- helper cells. [Note: the term ARC -- AIDS-related complex -- is now obsolete; ACTG 116A was designed several years ago.] The volunteers were randomly assigned into three arms: ddI 500 mg per day, ddI 750 mg per day, or the standard dose of AZT. (The ddI was given in powder form; 500 mg of the powder equals 400 mg of the better- absorbed tablets, which are now most often used. The ddI doses "were reduced by one third for patients weighing less than 60 kg [132 pounds].") Disease "progression" was defined, as in the earlier study, as either the occurrence of a new AIDS-defining event or death. Among 380 people without prior AZT, 29 percent of those on 500 mg/day of ddI progressed to more serious illness or death; 31 percent progressed at 750 mg/day ddI; but only 18 percent of the AZT arm progressed, a statistically significant advantage for AZT. ["Statistically significant" means that this big a difference in results would be unlikely to occur by chance alone, if there were really no difference in how well the drugs worked.] Among the 119 people with some prior AZT use but no more than eight weeks, there was a small trend in favor of AZT, but it was not statistically significant. However, among 118 people with 8-16 weeks of prior AZT use, one year progression rates were 11 percent for 500 mg of AZT, 17 percent for 750 mg, but 33 percent with AZT -- a statistically significant advantage for ddI. In contrast to the results of the related study reported last year (ACTG 116B/117), the new survival statistics from ACTG 116A generally reflected progression statistics. For people with no prior AZT, AZT showed a clear advantage in survival; one-year death rates were 10 percent for 500 mg of ddI and nine percent for 750 mg, but only four percent for AZT. For people with up to eight weeks of prior AZT, there was no significant difference in survival rates. But for people with eight to 16 weeks of prior AZT, ddI showed a clear survival advantage (one-year death rates three percent for 500 mg of ddI, and two percent for 750 mg, compared to 11 percent for AZT). [The small differences in survival rates between the two ddI doses are not statistically significant, and could easily have occurred by chance.] The primary side effect of AZT was granulocytopenia (low white cell counts). Primary ddI side effects were pancreatitis and peripheral neuropathy. Two volunteers in the study died of pancreatitis; both were on the 750 mg ddI dose. The rate of pancreatitis at the lower ddI dose was seven percent, compared to four percent among the volunteers originally assigned to AZT, a difference which was not statistically significant. This finding agrees with that of 116B/117, and should reduce the long-standing fear (based on reports from the early ddI expanded-access program) that pancreatitis is a likely result of ddI use. Analysis The results of this study are surprising, and not easy to interpret. They will be much discussed and analyzed in the months to come. When ACTG 116A started, it was expected that people with no prior AZT and people with 16 weeks of prior AZT would turn out to respond about the same. The decisiveness of relatively small differences in prior AZT duration was not foreseen. It seems puzzling that people starting therapy on the standard ddI dose will experience a 29 percent one-year progression rate, while giving people 8 weeks of AZT before starting them on the same ddI dose will reduce that to 11 percent. The study seems to show that this short course of AZT before switching contributes dramatically to the subsequent efficacy of ddI and to the over-all efficacy of therapy (the lowest progression rate on a single drug was 18 percent, in people who received only AZT), but it doesn't show why. There are speculations about intracellular mechanisms, but there is as yet no agreement on what they might be. For people with longer-term AZT use (as in the study reported last year, 116B/117) it might be reasonable to suppose that AZT resistance contributes to the added efficacy of switching to ddI; however, in the short-term use allowed in 116A, it is unlikely that resistance is a significant factor. Perhaps 116A does not really show what it seems to show. According to a NIAID summary, "The trial was not designed to test the hypothesis that switching to ddI after at least 8 weeks of AZT is an appropriate monotherapy strategy for AZT- naive patients with advanced HIV infection. Although the data are consistent with this hypothesis, there are other possible explanations for the treatment differences observed in the group with 8-16 weeks of prior AZT. A particular concern is that this group may not be representative of all patients with 8-16 weeks of prior AZT because many patients who felt they were benefiting from AZT may have elected not to enter ACTG 116A. "But it is thought unlikely that this concern would account for the important differences that were seen. There are other uncertainties which might have affected the results of the study. (1) A number of volunteers dropped out of the trial, possibly biasing it in some way. (2) There was a 20 percent crossover rate, which refers to people who started on one drug but then switched to the other after problems arose. [Under the "intent to treat" analysis used for this trial, they were counted in the final analysis as if they had stayed on the first drug, even though they actually switched. The reason for this seemingly bizarre procedure is that researchers often want to measure the effect of the decision to treat with one drug or the other (which may differ from the treatment that actually is delivered) -- since only the decision is directly under the physician's and patient's control.] (3) For a few months at the beginning of the study the AZT group was receiving the old dose of 1200 mg per day, which could have affected the side-effect rate for that group -- a rate that was higher than the ddI rate and could have caused more people to switch to ddI than to AZT. (4) The differences in survival rates, NIAID cautions, may be affected by the lack of long-term follow-up for more people in the AZT group than in the ddI groups, since some deaths could have been missed. (5) The people in the AZT-naive group tended to start with lower T-helper counts than the people in the AZT- experienced groups, but AZT-experienced people more often had an AIDS diagnosis -- two potential biases, but fortunately in the opposite direction. (6) The study was originally intended to be larger, but recruiting problems caused the 500 mg ddI arm to be closed prematurely, so that comparisons between that arm and the other two have, according to NIAID, "slightly reduced statistical power." It may not be possible to say if or how these and other factors affected the study's outcome. On balance, however, the study results are more likely to be accepted as further confirmation of the broader trend in findings on HIV antiretrovirals, i.e., that no single drug, given for an indefinite period, is likely to be the most effective treatment strategy. The NIAID summary notes, "If a patient does switch from AZT to ddI, it is not known whether returning to AZT or remaining on ddI is more appropriate. Future trials will be required to assess the value of alternating regimens." There have already been various small studies looking at alternating regimens, and the results suggest that future treatment strategies are likely to center not on alternating antiretrovirals but on combining them. A small study presented at last year's International AIDS Conference (and soon to be published) directly compared a group of volunteers alternating AZT and ddI to a group combining them, and found decisive superiority for the combination group. A researcher involved in ACTG 116A says that, by showing the added value of using more than one drug, this study (116A) could be interpreted as providing further support for the idea of combination therapy. And a press statement from Burroughs- Wellcome (maker of AZT) notes, "The data from 116A must be placed in the perspective of the emerging consensus that combination therapy will play an increasingly critical role in the management of HIV disease." [As noted in the last issue of AIDS TREATMENT NEWS, new information on various combination therapies will become known throughout this year and next year.] Still, official recommendations favoring combination therapy will probably not come soon; and NIAID pointedly made no recommendations, on the basis of 116A, about switching from one drug to another after 8 weeks. The clinician and patient, looking at the findings of 116A, may not know what guidance, if any, can be taken from it. In the near future there may be a meeting of treatment experts to arrive at an interpretation of this study's findings. In case a consensus is reached that switching drugs after relatively short periods of first-line therapy is the best treatment strategy, every HIV doctor and most HIV patients would be directly affected. Not only clinical practice but some ongoing clinical trials would need to be rethought. Dr. Laurie Smaldone (a member of the study team) says, "This is a very important study and everyone recognizes it." A spokesperson for Bristol-Myers (maker of ddI) says that, although timetables and details are undecided, the company will seek expanded FDA labeling for ddI based on 116A. The current labeling indicates switching to ddI after "prolonged" AZT use; 8 weeks is far from a "prolonged" period. In sum, a study that had been expected to tell which drug, AZT or ddI, is the better single-drug therapy may, instead, be providing further evidence that treatment with either single drug -- particularly when continued indefinitely without switching drugs -- is probably an idea whose time is passing. ***** CMV Experimental Treatment Overview (Part I) by Giacomo egalovirus (CMV) is a virus which infects much of the general population, and most persons with HIV. CMV rarely causes disease, however, unless the immune system is suppressed -- as in recipients of organ transplants who must take immunosuppressive drugs, or in persons with AIDS. Those with T-helper counts under 50 are at greatest risk of CMV disease, although it can occur at higher T-helper counts. CMV retinitis, an infection of the retina of the eye which causes blindness if untreated, occurs in 10 to 20 percent of people with AIDS in the United States. CMV retinitis accounts for about 80 percent or more of CMV disease in persons with AIDS. One eye is usually affected first, and a two or three week intensive "induction" treatment with an anti-CMV drug (ganciclovir or foscarnet, see below) is necessary to save its sight. After the induction phase, patients are put on a lower "maintenance" dose of one of the drugs, to prevent the retinitis from continuing to progress. If the person does not use the maintenance therapy, the retinitis will also affect the other eye within six months in roughly 60 percent of the cases; with maintenance therapy, this is reduced to about 15 percent. CMV can also cause disease in the lungs, colon, adrenals, esophagus, and other organs. Because CMV retinitis can rapidly cause permanent vision loss, persons with T-helper counts less than 200 should have regular eye examinations, and must get medical attention immediately if vision problems develop. (Although retinitis rarely occurs when T-helper counts are above 50, there are other reasons for persons with AIDS to have eye examinations; also, if retinitis occurs, it is important to have already established a relationship with a CMV-knowledgeable ophthalmologist.) While exposure to CMV can be detected by a test for antibodies in the blood, this test does not tell whether or when CMV disease will occur. Two drugs -- ganciclovir and foscarnet -- have been approved by the FDA for treating CMV retinitis by intravenous administration. While known to be effective, both have serious drawbacks, and a number of experimental treatments in various stages of development are being tried. This article will look at new ways to use the standard treatments, as well as experimental CMV treatments which are now being developed. Ganciclovir; Use of G-CSF or GM-CSF Ganciclovir (brand name Cytovene; formerly called DHPG) has been approved for CMV retinitis since 1990 (it is still being tested for CMV colitis). When retinitis is first diagnosed, the patient receives twice daily infusions of ganciclovir for two to three weeks (induction therapy), and is then put on lower daily doses for maintenance. Without the maintenance therapy, the retinitis may recur within a short period of time. (An easier dosage schedule of three infusions every week for maintenance therapy is currently being tested.) Because ganciclovir is toxic to neutrophils (a class of infection- fighting white blood cells), blood tests must be carefully monitored. Ganciclovir-induced neutropenia (lack of enough neutrophils) can be life threatening; fortunately it is usually reversible within a few days of stopping therapy. Since continuing CMV treatment is necessary, the best approach may be to avoid or neutropenia by using either G-CSF (Neupogen) or GM-CSF (Leukine). Both of these are substances produced by the body which stimulate the growth of neutrophils. In one study presented at the Eighth International Conference on AIDS in Amsterdam, patients were randomized into a group which received ganciclovir alone, and another group which received ganciclovir plus GM-CSF. Eighteen percent of the patients receiving the combination developed neutropenia, compared to 45 percent of the patients receiving ganciclovir alone (abstract #MoA 0005). Both G-CSF and GM-CSF are FDA-approved for treating low neutrophil counts in other situations, but they are still being tested for combination therapy with ganciclovir, so there is no official approval yet, even though the drugs are in widespread use for this purpose and it is clear that they can be effective. For now, these drugs must be prescribed off label (meaning that while the FDA has approved the drug, it has not specifically approved that particular use). Unfortunately, there are still many physicians who will not prescribe these drugs off label, even in severe cases of neutropenia. Insurance reimbursement can also be a problem. Ganciclovir Eye Implants Another approach to limiting the toxicity of ganciclovir is a new drug delivery system now being tested at the New England Eye Center of the New England Medical Center, and at the University of Texas Southwestern Medical Center in Dallas. In these trials, a tiny time- release capsule containing ganciclovir is surgically implanted into the eye. Two eye- implant systems are being investigated. One slowly seeps ganciclovir into the eye for 120 days, and the other system seeps ganciclovir for 240 days. According to Jay Duker, M. D., Director of Vitreoretinal Service of the New England Eye Center, "the success rate with both the 4-month implant and 8-month implant is running about 90 to 93%. What that means is that in the patients who immediately respond to treatment, we have not had anyone reactivate with CMV retinitis as long as there's medication left in the implant. We have had a certain percentage, maybe ten percent, who have not responded at all to the implant. So there are some patients who will not respond, but in the ones that do seem to respond very well." One of the reasons for the success of this drug delivery system is that it allows for a constant rate of release of ganciclovir into the eye, while the amount of intravenous ganciclovir peaks after slightly more than an hour, but then leaves the eye without high levels until the next dose. Phase III trials of this drug-delivery system will begin in the first few months of 1993 at the New England Eye Center, and at nine other sites across the country. There will probably be three protocols in these phase III trials. One will be for newly diagnosed individuals with CMV retinitis and will compare the 4- month implant, the 8-month implant, and intravenous ganciclovir. The second protocol will be for individuals failing intravenous therapy (foscarnet or ganciclovir) and will compare the options of continuing on intravenous drug alone, or continuing intravenous therapy with an implant. A third trial would be for compassionate use of the drug delivery system. Kevin Frost, a treatment activist with ACT UP/New York and TAG (Treatment Action Group) who has worked on the development of these protocols for almost a year, said that he "firmly believes we will have a compassionate use protocol." One problem with a drug delivery system that must be surgically implanted is that a surgeon trained in the technique must do the procedure, so the compassionate use protocol will probably be limited to the 10 sites across the U. S. where the phase III trial will take place. Another problem is insurance or Medicaid reimbursement for the cost of the surgery. According to Kevin Frost, "when you start talking about this in terms of cost effectiveness and Medicaid looks at it in terms of cost-effectiveness, there's absolutely no question that it's cheaper to use the drug delivery system [compared to the alternative of daily intravenous infusions]. As a matter of fact, the Medicaid agencies in New York and Texas have already agreed to pay for the procedure. My hope is that the national Medicaid program will agree to pay for it within the next couple of months -- we will be going to work on this very issue when the protocol is approved by the FDA. "The phase III trial will probably take 6 to 9 months to enroll patients and, because the implant lasts 8 months, it will take another 8 months before the trial closes. Then the data will have to be presented to the FDA for drug approval. Hopefully, the company that produces this device will make it available by compassionate use to those individuals who have CMV retinitis that is progressing, but do not meet the eligibility criteria of the trial. The main risks with the eye implant are those associated with surgery: hemorrhaging and infection. The incision line is small and not visible without a close inspection of the eye. There is also a danger of retinal detachment, but cases of detachment in the study appear to be due to the disease process and not the drug-delivery system. Another risk in administering ganciclovir this way is that CMV infection is often systemic (in other organs in the body, not only in the eye), and other parts of the body would not benefit from the eye implants. It is also possible to inject ganciclovir directly into the eye, although this method does not maintain a constant high level within the eye like the implants described above. Oral Ganciclovir An oral version of ganciclovir, which would be much more convenient than the intravenous drug and less expensive to administer, is currently being investigated as a treatment for CMV retinitis at 22 sites across the U. S. Oral ganciclovir has a bioavailability of six to ten percent (meaning that only that fraction is absorbed when the drug is taken orally). In this trial patients are randomized to either 1000 mg three times a day or 500 mg six times a day of oral ganciclovir. The efficacy of these regimens is being compared to that of a third arm in which the patients receive IV ganciclovir at a dose of 5 mg/kilogram of body weight every day. Clinical trials of oral ganciclovir as a CMV prophylaxis for HIV- infected individuals with low T-helper cell counts are now beginning (see notice in "Announcements" section, below). According to Jay Lalezari, M. D., co-director of HIV research at Mt. Zion Hospital in San Francisco, "CMV is the last major opportunistic infection for which we have no prophylaxis, so one is urgently needed. Our studies of oral ganciclovir have shown it to be relatively safe and well tolerated, and to have demonstrated activity in reducing titers of CMV infection in people." Note: The second and final part of this article will cover foscarnet, combination ganciclovir/foscarnet therapy, IVIG, CMVIg, MS-109, HPMPC, BW 256, etoposide, and hypericin. ***** Announcements ** Oral Ganciclovir CMV Prophylaxis Study Recruiting A major national study is testing an oral form of the anti- CMV drug ganciclovir to see if it can prevent CMV disease in patients who do not have it already. This trial is for persons with AIDS and with T- helper counts under 100 -- or persons without AIDS and T-helper counts under 50. There are various other entry criteria. This study is sponsored by Syntex Inc. of Palo Alto, California. Trial sites are in Atlanta, Berkeley (CA), Boston, Chicago, Dallas, Honolulu, Houston, Los Angeles (2 sites), New York (3 sites), Philadelphia, Pittsburgh, San Diego, San Francisco (3 sites), and Washington, D. C. For more information about this trial, or to find the phone number of a site in one of the above cities, call the AIDS Clinical Trials Information Service, 800/TRIALS-A, or see the new edition of the AIDS/HIV Treatment Directory (published by AmFAR, the American Foundation for AIDS Research), which is expected to be distributed near the end of January. As we go to press, this trial is not yet in the TRIALS-A database, but that office can give contact phone numbers for the sites from a draft copy of the AmFAR directory. Note: Do not confuse this prophylaxis trial with a separate trial of oral ganciclovirf vs. IV ganciclovir for maintenance therapy for persons who have already developed CMV disease. This trial, at 22 sites throughout the U. S., is about half enrolled, and is recruiting volunteers. For more information about it, call 800/TRIALS-A. ** New York: Hypericin Trial Recruiting, P24 No Longer Needed The ongoing trial of the antiviral hypericin at New York University has been changed to compare oral vs. intravenous doses of the drug; previously it only tested intravenous administration. Volunteers no longer need to be p24 positive -- an inclusion criterion which had been a problem in New York, since the p24 antigen test is not approved for medical practice under New York's rules, and therefore many patients in that state do not know whether they are p24 positive or not. For more information about this trial, call New York University at 212/263-6565. Or call the AIDS Clinical Trials Information Service, 800/TRIALS-A. Note: Hypericin remains an important experimental treatment; in laboratory tests, it has activity against HIV, CMV, and certain other viruses. Results of the current trial have suggested that it may need to be administered at least daily, probably in oral form, to maintain antiviral blood levels, since intravenous administration causes high peak concentrations which may cause dose-limiting side effects, while leaving blood levels too low for antiviral activity at other times. The current trial, using low doses to determine how well the drug is absorbed when given orally, will provide data needed to design a later trial to test whether oral dosing can be effective. ** San Francisco, Salt Lake City: Acyclovir-Resistant Herpes Treatment Trial Persons with AIDS and one or more lesions of acyclovir- resistant herpes may be eligible for a trial of SP-303T, a drug being developed by Shaman Pharmaceuticals, Inc., in San Carlos, California, a company which develops drugs from rainforest plants. SP-303T is derived from a plant long used for treating herpes in South America; it has been found to be active against acyclovir-resistant herpes in laboratory tests. The drug is applied topically; the first volunteers were treated in January 1993. For more information about this study, call Julie Calo at San Francisco General Hospital, 415/476-9296 ext. 84607; or call Carol Bujwit at the University of Utah School of Medicine, 801/581-4878. ** Tat Inhibitor Support Group Forming -- Baltimore, Boston, Cleveland, San Diego A support group for persons in the current tat inhibitor trial (now taking place in the four cities above) is being formed. Persons in this trial can call Giacomo Palazzolo in Boston at 617/524-7780, between 9:00 a.m. and 5:00 p.m. Eastern time. Please note that this is Giacomo's home phone and not a hotline or general information number. He cannot handle a great many calls, but wants to provide a communication forum for persons who are taking the drug. The current tat trial is now fully enrolled, and not open to new patients. ** San Francisco: Conference on Speech, Hearing, and Vision Loss, February 26 "HIV-Related Speech, Hearing, and Vision Loss: A Conference for Health Care Providers, Caregivers, and People with HIV," will be held February 26 from 8:30 a.m. to 3:30 p.m. at the University of California, Laurel Heights Auditorium, 3333 California Street, San Francisco. Persons are asked to register by February 12. Fees (including lunch) are $40 physician, $25 other professionals, $15 persons with HIV and all others, but no one will be turned away for lack of funds. This conference is sponsored by several AIDS, vision, and hearing organizations. For more information, call Kathy Abrahamson at 415/431-1481. ** San Francisco: "Caring for HIV Naturally" Forum The Traditional, Holistic, and Alternative Treatment Committee of ACT UP/San Francisco is sponsoring a four-part forum on alternative treatments, on four Saturdays between January 30 and March 13. The first session, "Nutrition and Exercise," includes four speakers: holistic physician Jon Kaiser, M.D., on diet and food supplements; Parris Kidd, Ph.D., author of Living with the AIDS Virus -- A Strategy for Long-Term Survival, on anti- oxidants and the treatment of HIV; David Merriweather, assistant to Jonathan Wright, M.D. (who received widespread publicity after an FDA raid on Dr. Wright's clinic in Kent, Washington) on issues of digestion and assimilation; and Tom Riccobuono, on exercise for people with HIV. This session will take place Saturday, January 30, 1 p.m. to 5 p.m., in the Davies Medical Center, Castro Street and Duboce Avenue, in the Gazebo room. Later sessions are: Body-Mind-Spirituality, Feb. 13; Cross- Cultural Therapies, February 27; and Long-Term Survivors, March 13. For more information, or to check locations of later sessions, call ACT UP/San Francisco's information hotline at 415/621-0291. ** AIDS Czar Issue: Report to President or Report to HHS? ACT UP/New York has begun a letter writing campaign after hearing reports that the Donna Shalala, the new Secretary of Health and Human Services (HHS) wants the new "AIDS czar" promised by Clinton to report to her, instead of directly to the President. ACT UP believes that the decision may be made soon. No "AIDS czar" has been appointed yet. There has been widespread consensus that such a position sould report directly to the President -- one reason being that AIDS issues involve many departments, not only HHS. "The rationale for the position requires the immediate attention and direct access to the President, with special powers to coordinate, across all governmental agencies and branches, the federal government's response to AIDS. It also requires the full commitment of the President to use his office as a from ACT UP/New York letter to President-Elect Clinton). As this issue went to press, United for AIDS Action also joined the effort to have an AIDS coordinator in the White House. For more information on this issue and on how you can help, call ACT UP/New York, 212/564-AIDS, or Eric Sawyer, 212/864- 5672. ***** Resource List, January 1993: ACT UP Affiliates, Buyers' Clubs, and PWA Coalitions Updated by Tadd Tobias The following is a directory of AIDS activist groups, buyers' c 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 which we could verify; some of these are home telephones, not offices. For information about new ACT UP affiliates, contact the ACT UP Network, 414/483-0376. For information about 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 our next directory, please contact this writer at 415/255-0836. The classifications are: "A" -- local 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 205/322-4197C AIDS Action Coalition 205/533-2437 C ARIZONA Phoenix ACT UP/Phoenix 602/433-4966 A Phoenix Phoenix Body Positive 602/264-7414 C Tucson La Frontera Center/Positively Native 602/770-7418 C Tucson PWA Coalition Tucson 602/770-1710 BC ARKANSAS Little Rock Arkansas AIDS Brigade 501/372-7473 A CALIFORNIA Fresno ACT UP/Fresno 209/843-2748 A Lompoc ACT 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 310/667-3262 C Oakland ACT UP/East Bay 510/836-4401 A Orange Cty ACT UP/Orange County 714/253-0185 A Palm Desert Alternative Supplem. 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 Healing Alternatives 415/626-2316 B San Francisco ACT UP/Golden Gate 415/252-9200 A San Francisco ACT UP/San Francisco 415/621-0291 A San Mateo San Mateo Cty AIDS Pgm 415/573-2385 C Santa Barbara ACT UP/Santa Barbara 805/569-3299 A Van Nuys Being Alive 818/908-3840 C Ventura ACT UP/Ventura 805/653-5706 A West Hollywood Being Alive 310/854-1327 C COLORADO Denver ACT UP/Mile High 303/643-1895 A Denver PWA Coalition Colora 303/837-8214 BC CONNECTICUT Bethel AIDS Project Greater Danbury 203/778-2437 C d ACT UP/Connecticut 203/224-7428 A New Haven ACT UP/New Haven 203/732-2229 A DISTRICT OF COLUMBIA ACT UP/DC 202/328-2437 A Carl Vogel Center 202/289-4898 B DC Buyers' Club (DCBC) 202/232-5494 B Lifelink 202/789-4090 C The Positive Woman 202/529-5447 C FLORIDA Clearwater AIDS Coalition Pinellas 813/449-2437 C Dade County PWA Coalit 305/573-6010 C Ft. Lauderdale Health Link 800/447-9242 B Gainseville ACT UP/Gainseville 904/495-3525 A Jacksonville PWA Coalition 904/398-9292 C Miami ACT UP/Miami 305/787-1131 A Miami Body Positive 305/576-1111 C Miami Cure AIDS Now 305/375-0400 C Orlando Trans-AIDS Support Serv. 407/352-2352ABC Palm Beach PWA Coalition 407/697-8033 C Pompano Beach PWA Coalition Broward County 305/565-9119 C Sarasota AIDS Manasota 813/954-6011 C Tampa ACT UP/Tampa Bay 813/882-5359 A Tampa DACCO 813/223-4648 C Tampa PWA Coalition TampaBay 813/238-2887 C West Palm B. ACT UP/West Palm Beach 407/433-9222 A GEORGIA Albany Give For Life Association 912/883-1290 C Atlanta T UP/Atlanta 404/874-6782 A Atlanta NAPWA Atlanta 404/874-7926 C Atlanta Atlanta Buyers' Club 404/874-4845 B 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 Wect 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 WA Coalition 317/636-2134 C Indianapolis Indiana Cares 317/630-9075 C IOWA Davenport Quad Cities AIDS Coalit. 319/324-8638 C KANSAS Kansas City ACT UP/Kansas City 816/753-5930 A Topek Positive Action Coalition 913/223-7769 C LOUISIANA Baton Rouge ACT UP/Capitol 504/343-3375 A New Orleans PWA Coalition 504/944-3663 C New Orleans ACT UP/New Orleans 504/522-5105 A Shreveport ACT UP/Shreveport 318/865-5217 A 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 AID Baltimore 410/837-2437AB Baltimore PWA Coalition 410/625-1677 C MASSACHUSETTS Boston ACT UP/Boston 617/492-2887 A Bostonon 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 PWA Coalition Boston 617/266-6422BC Boston Positive Directions 617/262-3456 C Hyannis Cape Cod AIDS Council 508/778-5111 C North Hampton ACT UP/Western Mass 413/584-4213 A Provincetown ACT UP/Provincetown 508/487-3049 A Provincetown Provincetown Positive 508/487-3998 C MICHIGAN Detroit ACT UP/Detroit 313/872-2427 A Detrt Friends Alliance 313/836-2800 C Grand Rapids PWAC Western Michigan 616/363-7689 C Grand Rapids Grand Rapids AIDS Resource Center 616/459-9177 C MINNESOTA Minneapolis ACT UP/Minnesota 612/374-9349 A Minneapolis The Aliveness Project 612/822-7946 BC MISSISSIPPI Jackson PWA/HIV Project 601/373-8610 C MISSOURI Columbia Mid-Missouri AIDS Proj. 314/875-2437 C Positive Action 603/659-8442 C NEW JERSEY Collingswo S. N.J. 609/854-7578 C Fort Lee PWA Coalition N.J. 201/ ACT UP/New Jersey 609/771-6680 A NEW MEXICO Albuquerque NMAPLA 505/266-0342 C Albuquee ACT UP/Albuquerque 505/268-0378 A Santa Fe National Rural AIDS Network 505/986-8337 C Santa Fe NMAPLA 505/982-5995 C NEW YORK Albany ACT UP/Youth Chapter of SUNY 518/432-9279 A Albany ACT UP/Albany 518/463-8422 A Buffalo AIDS Alliance of Western New York 716/852-6778 C Buffalo ACT UP/Western New York 716/881-1459 A Long Island ACT UP/Long Island 516/336-1258 A Long Island PWA Coalition 516/225-5700 C New York City ACT UP/New York 212/564-2437 A New York City PWA Health Group 212/255-0520 B New York City PWA Coalition New York 212/532-0290 C New York City NY AIDS Coalition 212/675-7750 C Oneonta ACT UP/SUNY Oneonta 607/432-3814 A Utica ACT UP/Utica 315/853-6418 A NORTH CAROLINA Research Triangle ACT UP/Research Triangle 919/990- 1197 A OHIO Cincinnati GLMA/ACT UP 513/861-6171 A Cleveland ACT UP/Cl228-0162 A OKLAHOMA Oklahoma City ACT UP/Oklahoma City 405/447-4209 A Oklahomher Options 405/728-3222 C OREGON Portland ACT UP/Columbia 503/240-0377 A Portlandregon 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 809/753-9443C Santura ACT UP de Puerto Rico 809/752-5123 A RHODE ISLAND Providence Lifeline PWA Coalition 401/421-5344 C SOUTH DAKOTA Sioux Falls ACT UP/South Dakota 605/332-3966 A TENNESSEE Nashville 10 C TEXAS Austin ACT UP/Austin 512/477-2437 A AIDS Services of Austin 512/451-2273 C Dallas ACT UP Dallas AIDS Resource Center 214/521-5124 C Dallas AIDS Services of Dallas 214/941-0523 C Dallas DBC Alternatives 214/528-4460 B 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 802/257-9277 C WASHINGTON Seattle ACe 206/726-1678 A Seattle People of Color Against AIDS Ne VIRGINIA Morgantown Mtn. 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 WYOMING Casper Wyoming AIDS Project 307/237-7833 C ***** AIDS TREATMENT NEWS Published twice monthly Subscription and Editorial Office: P. O. Box 4112141 800/TREAT-1-2 toll-free U. S. and Canada 415/255-0588 regular office number 415/255-4659 fax 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. 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