Date: Fri, 21 Apr 1995 09:06:37 -0700 (PDT) From: "John S. James" AIDS TREATMENT NEWS Issue #221, April 21, 1995 phone 800/TREAT-1-2, OR 415/255-0588 CONTENTS Viral Load Success: Call for Information Thalidomide and HIV: Several Possible Uses Proposal: Small Trials for Screening Antiviral Combinations Nerve Growth Factor: Major Trial Canceled, Revived After Protest Merck Protease Inhibitor: New International Contact Numbers New York City: Anabolics, Wasting Symposium, May 17 International AIDS Candlelight Memorial, Sunday May 21, in 250 Cities in 47 Nations Congress: How to Help ***** Viral Load Success: Call for Information by John S. James AIDS TREATMENT NEWS would like to hear from physicians, other medical professionals, and patients about any cases of striking, unusual, or unexpected reduction in viral load. This request was inspired by a case in which viral load went from 483,000 copies in January 1994 to 26,000 in August 1994; the only treatment changes during that period were starting high-dose acyclovir to treat a herpes outbreak, and starting DNCB and Trental. [This patient, who is an expert on conventional and alternative treatments, suggests that anyone who is HIV positive and has a history of herpes should consider acyclovir. We also suggest getting a baseline viral load test first, to be able to tell if viral load goes down after starting the treatment; acyclovir is a safe drug, but it is expensive.] We wanted to bring this case, and other examples of major improvement after treatment change, to the attention of our readers. Your report should include: * At least two viral load test results, so that a change can be seen. Preferably use the Roche quantitative HIV PCR (for example, the test offered by RBL, Roche Biomedical Laboratories), or the Chiron branched DNA test. * Any CHANGES in treatment between these tests, which might have accounted for the change. * Major treatments which did NOT change during that period -- especially antivirals such as AZT, ddI, ddC, d4T, 3TC, protease inhibitors, or other experimental treatments such as nevirapine. * A name and phone number or address so that we can contact you if we have additional questions. Send your report to: AIDS Treatment News, P.O. Box 411256, San Francisco, CA 94141. Alternatively, you can call John James at 415/255-6259, or send a fax to 415/255-4659. ***** Thalidomide and HIV: Several Possible Uses by Denny Smith The drug thalidomide has lately become the object of wide- ranging research for its proposed value in treating a number of AIDS-related conditions, including aphthous ulcers, wasting, and tuberculosis, as well as for treating HIV infection itself. If its promise holds true, thalidomide will become pharmaceutical medicine's most famous come-back story. The word thalidomide provokes alarm in those who remember it as the notorious cause of birth defects in thousands of European babies born in the 1950s and 60s. It had been widely prescribed as a sedative under the trade name Contergan until its teratogenic effects became apparent. It was never marketed in the U.S., and in fact has been used, often irrelevantly, as a defense of stringent U.S. drug regulations. Most people think that after the thalidomide disaster the drug was shelved forever, but actually it has been studied extensively in auto-immune disease research, and it happens to be very useful for managing a consequence of the medications used to treat Hansen's disease (leprosy). It is now routinely and safely administered to people with Hansen's around the world. The rationale behind the use of this drug in HIV disease is somewhat involved. Rather paradoxically, it appears to work by pacifying part of the immune response, a property which would not at first seem to benefit a disease described as an immune deficiency. However, HIV causes not simply a deficiency, but an "autoaggressive" reaction. In the protracted war against the virus, the immune system begins OVERproducing certain chemical messengers called cytokines which immune cells use to communicate. Cytokines are potent and their pathways are extremely complex, and, depending on the situation, some can serve more than one function. All considered, it is not surprising that the chaos fostered by too many messengers and messages could cause more harm than good. Excessive levels of one cytokine in particular, tumor necrosis factor, or TNF, have been associated with the development of aphthous ulcers, dementia, fevers, fatigue and wasting. Not only does HIV stimulate TNF production, but TNF in turn can enhance HIV replication. A number of agents are reported to inhibit the production of TNF, including pentoxifylline, sulfasalazine, cyclosporine, N-acetyl cysteine, ketotifen, corticosteroids and thalidomide. Currently, the most prominent TNF inhibitor under study is thalidomide, perhaps because it is relatively strong and selective in this regard. Some of the other drugs have effects which are not completely understood or desired. (Some are also in use in HIV treatment for other rationales.) The capacity of thalidomide to inhibit TNF was demonstrated by researchers at The Rockefeller University with funding by Celgene Corporation. Consequently, development rights to this use of thalidomide are owned by Celgene, which calls the drug Synovir. Sol Barer, Ph.D., president of the company, spoke to us at length about the drug's status. Interest in thalidomide has blossomed in the past year, given its multiple possibilities and the expanding research into TNF. The drug is under study in a number of HIV-related clinical trials in Europe and North America, and in some countries it is also available on a compassionate-use basis. In the U.S., a few HIV buyers' clubs are planning to carry thalidomide, a choice which may turn confrontational with the Food and Drug Administration. Celgene is currently developing several new TNF inhibitors which are chemically analogous to thalidomide but which might be safer or more effective. Thalidomide also inhibits angiogenesis, the development of new blood vessels. This property which unfortunately inhibited the normal growth of fetal limbs has garnered it research interest in diseases characterized by uncontrolled angiogenesis, such as cancer and Kaposi's sarcoma. Dr. Barer noted that TNF stimulates the growth of new blood vessels, so that the inhibition of TNF may still be the operative mechanism in angiogenesis research. Current Trials Many people with HIV are bothered by recurring, painful oral ulcers that are frustratingly difficult to treat. The ulcers are apparently not caused by an opportunistic agent, like herpes, and so they are generically described as aphthous, meaning simply that they occur on a mucous membrane. A biopsy can determine if an ulcer is not indeed herpes, which would make a difference in the choice of treatment. The common treatment for aphthous ulcers has been to suppress, broadly, the immune response, which includes TNF production. This is easily accomplished with corticosteroids like prednisone. A topical oral elixir of prednisone may work well enough for some people. But many others need a stronger, systemic formulation, and since long-term use of these steroids has serious side effects, it is not a tenable permanent solution. A better solution, theoretically, would be to inhibit TNF production more specifically, such as with thalidomide, and leave other immune responses alone. There are at least 38 sites around the country testing thalidomide for HIV-related ulcers. Wasting is an even more serious problem for many people. It has been well documented as a cause of death even in the absence of opportunistic illnesses. The origins of wasting are complex and variable, and include loss of appetite, poor intestinal absorption, low testosterone production and high TNF production. Wasting now has quite a few possible treatments, including endocrine modifiers like human growth hormone, testosterone, nandrolone or oxandrolone, and appetite/nutritional enhancers like megestrol acetate, marijuana or dronabinol, and total parenteral nutrition (TPN). None of these, however, work by decreasing TNF levels. Based on some promising earlier research, there are now six trial sites around the country testing thalidomide in people with wasting syndrome. Thalidomide has developed a somewhat contradictory relationship to the diagnosis and treatment of tuberculosis and MAC. It is being studied as a adjunctive treatment to the standard therapies because it relieves some of the symptoms associated with TB. But for the same reason it may mask an undiagnosed TB or MAC infection and thus delay timely treatment. Consequently, physicians who have patients using thalidomide, whether through a trial or not, should monitor them for mycobacterial infections and consider prophylaxis for those at risk. Finally, thalidomide may be useful for treating primary HIV infection, and is in trials for that purpose at five sites. It is unclear, however, if the drug has any activity on HIV beyond inhibiting TNF. Dr. Barer feels that it might make a very good complement to a combination antiretroviral regimen. He also is optimistic that second or third generation TNF inhibitors will surpass thalidomide's efficacy and diminish some of the toxicity. Persons interested in any of these studies should call 800/TRIALS-A for more specific contact information. One of the possible side effects of thalidomide, and a potentially irreversible one, is peripheral neuropathy. Individuals with a history of neuropathy may be disqualified from thalidomide trials. Importantly, persons who for reasons other than neuropathy do not meet the entry criteria of the oral ulcer trials may qualify for a little-known compassionate-use program, managed somewhat guardedly by the FDA. For information about that program, physicians only should call Brenda Atkins or Matthew Tarosky at 301-443-9553. In some instances the drug has been released for vaginal or anal ulcers as well. Other Access Several investigators told us that the thalidomide trials have been slow to recruit, in spite of the apparent community interest in this treatment. One problem was articulated by Kathleen Mulligan, Ph.D., who is a co-investigator for the wasting trials at San Francisco General Hospital. Dr. Mulligan has encountered disbelief from many people, including physicians, that the drug thalidomide would ever be offered to anyone for anything. She hopes that as accurate information becomes more available, thalidomide's catastrophic history, and its real promise, will be understood in a broader context. Another reason for the slow recruitment may be a very old problem: both the wasting and ulcer protocols involve a placebo arm, a contingency which many people in ill health find very unattractive. As has been the case before, the HIV treatment community will soon pave its own road, as the drug becomes available through the Thalidomide Underground Compassionate Use Program, offered by the PWA Health Group in New York and the Healing Alternatives Foundation in San Francisco, the largest HIV buyers' clubs in the country. The clubs had planned to carry it earlier, but were approached by the FDA last November and encouraged not to do so, because of the seriousness of thalidomide's potential side effects, and presumably the attendant emotional and political charge that surrounds the drug as well. Both Sally Cooper, Director of the PWA Health Group, and Matthew Sharp, Director of Healing Alternatives, had strong rebuttals to the FDA concern. They say that the clinical trials of thalidomide cannot enroll everyone who needs the drug, and that many people do not wish to and should not have to endure the risk of a placebo in this situation. (And the small compassionate use program is only for ulcers, not for persons with wasting syndrome.) They also point out that a number of seriously teratogenic drugs are already approved for marketing by the FDA, including megace, and including an acne drug used by teenagers. [Comment: ANYONE TAKING THALIDOMIDE MUST UNDERSTAND THE GRAVITY OF ITS DANGER TO DEVELOPING FETUSES AND ABSOLUTELY AVOID STARTING A PREGNANCY. Given that, why would thalidomide be withheld from responsible people, including women, who desperately need it and who do not qualify for or choose to participate in clinical trials? People facing serious health concerns deserve to make their own informed treatment decisions. Also, the trials have not been uniformly open to women. Celgene has agreed to change that, with the stipulation that pre-menopausal women agree to pregnancy testing and reliable contraception.] In this context, the buyers' clubs are proceeding with what they consider the only ethical course. They will test the product they carry to ensure its quality, and will offer thorough counseling about the use and cautions of the drug. Moreover, they will require a prescription for its release, and a consent form that must be signed by the patient and their physician. The PWA Health Group can be reached at 212-255-0520, and Healing Alternatives at 415-626-4053. The wasting trials are still new, so data is not available. But for aphthous ulcers, a number of researchers and people who have themselves used the drug have told us that it has been very effective. Since the thalidomide causes drowsiness, it is best taken before sleep. Unfortunately, some people have experienced a serious allergic reaction to the drug, especially in the higher dose range (300 to 400 mg daily). The reaction may appear several days after starting the drug, and involves a rash, high fevers and extreme flu-like discomfort; it sometimes warrants permanent discontinuation of the drug. However, the problem may be avoided or controlled by starting at 100 mg a day and increasing the dose if needed (but not to exceed a daily dose of 400 mg). Dr. Gilla Kaplan, a key thalidomide researcher at Rockefeller University, told us that HIV-infected people who are also being treated for tuberculosis seem curiously to be spared the allergy to thalidomide. And clinicians at the Hansen's Disease Center in Louisiana say that the reaction has not been a problem for patients there. In fact, thalidomide is used in Hansen's precisely to CONTROL an inflammatory process, erythema nodosum leprosum (ENL), which can be a sequela--not a true drug reaction--during the treatment of the disease. (Hansen's disease, like MAC and tuberculosis, is caused by a mycobacterium, and not coincidentally, ENL is thought to result from high TNF levels.) At any rate, the saga of thalidomide's reincarnation will continue as more clinical research is completed, as patients and physicians gain more experience with empirical use, and particularly as the HIV community pushes for reasonable access to valuable treatments. ***** Proposal: Small Trials for Screening Antiviral Combinations [Note: In our last issue, AIDS TREATMENT NEWS published a proposed monitoring program for getting reliable data from the very first use of a new treatment. The proposal below is an alternative approach to getting data early. It was developed by Bill Bahlman, an activist with the Treatment and Data Committee of ACT UP/New York, who is working with members of the Inter-Company Collaboration for AIDS Drug Development in the hope of getting the ICC to sponsor such trials.] Rationale: With the hundreds and soon to be thousands of possible antiretroviral drug combinations, it is imperative that we develop a process of rapid screening in vivo [in people]. Past experience in drug studies, emerging technologies, and new understanding of HIV pathogenesis make it possible. We cannot afford to wait the many years it would take to study only a small portion of the potentially life- extending and life-saving combinations. We also need to design studies to mirror what risks people with AIDS are taking on their own. We need to provide some safety and monitoring information for these people as well as to provide a controlled setting for those who would rather do this sort of experimenting in a clinical setting. These are individual studies testing only one open label combination at a time. New open label combination screening studies should be started at a minimum of one per month. Study size: 30 patients. Inclusion/exclusion criteria: CD4 count range, to be determined. There may be two parallel studies, one for volunteers who are antiretroviral naive and have a CD4 count over 300, the other for those who are antiretroviral experienced and have a count under 300. Also, a minimal viral burden copy number -- possibly over 15,000 copies of HIV RNA per milliliter of plasma -- will be required. Study drugs: Each study will test three, four, or more drugs in combination. Any number of approved and/or unapproved drugs can be used in combination together. Length of study: As short as 6 weeks, no longer than 10 weeks (to be determined). Endpoints: Viral burden, CD4 and CD8 numbers, CD4 and CD8 percentages. Drug safety and toxicity. Later research: Drug combinations providing a great viral suppression and a great improvement in lymphocyte count and percentage (to be determined) would rapidly be put into a controlled phase III study with other such combinations. These improvements in markers would also have to be seen in a high percentage (75 to 90 percent, to be determined) of patients. Volunteers should be given continued access to the study regimen, open label, regardless of the study results. During this continued access, they should be allowed to add any other antiretroviral drug of their choosing, with appropriate monitoring provided. The volunteers should not be excluded from other drug combination screening studies. Comment The most controversial aspect of the above design is that it proposes an uncontrolled trial, since there is no randomly assigned control group to compare the test regimen against. The ICC first planned to do its studies as uncontrolled trials, but under pressure from some advocacy groups and from the FDA, the ICC changed its design to a series of randomized controlled studies. The change resulted in great delay, and the resulting trials are beginning to recruit only now (see announcement in AIDS TREATMENT NEWS #219, March 24, 1995). The importance of having a randomized assignment to a comparison group will not be known until the results are in; only then will it be possible to see how much this comparison adds to what we learn from the study. Meanwhile, we strongly believe that non-randomized trials, such as the design proposed above, do have a role, for several reasons. Randomization adds greatly to the delay and difficulty in setting up a trial and in recruiting volunteers; it is much easier to get people to volunteer when they know exactly what treatment they will get, than when they are told that a computer will assign them to one of several different regimens. Often there is no obvious treatment to use as a control, and so one is chosen arbitrarily; in the ongoing ICC study, for example, the control groups are those which consist only of FDA-approved drugs, although it is unclear why this comparison has any particular importance. Also, the trials being discussed are screening studies, not definitive, pivotal trials; combinations which look good in these early studies will be entered into later trials which of course will be randomized and controlled. Unless very minimal improvements are being sought -- which is not the case here -- randomization will not be required to show which combinations are good enough to be looked at again in a more formal study. One addition we would make to the above proposal is to specify followup visits going out for a least a year after start of treatment, and perhaps indefinitely, with the volunteers allowed to take or not take the study drugs as they wish. The proposed six to ten week treatment period is more than enough to show antiviral activity of a treatment regimen. But we also need to know how long that activity lasts, and what the long-term side effects may be. Persons with comments on this exploratory trial design can contact Bill Bahlman, phone or fax 212/929-4952; please do not call before 11 a.m. Eastern time. Or write to him at 332 Bleecker St., Suite G-6, New York, NY 10014. ***** Nerve Growth Factor: Major Trial Canceled, Revived After Protest by John S. James HIV-associated sensory neuropathy (peripheral neuropathy), a condition resulting from degeneration of nerves caused by HIV infection or by some treatments for HIV, results in pain and disability in up to 30 percent of people with advanced HIV infection; it is the most common neurological complication in AIDS. Several treatments for this condition are now being tested; all but one, however, provide at most symptomatic relief. Recombinant human nerve growth factor is the only treatment now to be tested which might be able to reverse the nerve damage caused by HIV; animal studies have shown that it also completely prevents the nerve damage caused by toxic effects of certain cancer chemotherapy drugs. A major government-sponsored study of nerve growth factor for treating HIV-related neuropathy has been in development for three years by the AIDS Clinical Trials Group of the U.S. National Institute of Allergy and Infectious Diseases, and by the U.S. National Institute of Neurological Disorders and Stroke. This study will randomly assign 180 volunteers at half a dozen U.S. university medical centers to receive low- dose nerve growth factor (0.1 microgram per kilogram twice per week), high-dose nerve growth factor (0.3 microgram per kilogram on the same schedule), or placebo. The treatment will last for 18 weeks, with a 28-day followup period after treatment is complete; during this time the volunteers will complete daily pain assessments, and in addition have neurological measurements to monitor large and small nerve fiber dysfunction. During the study, pain will be managed by symptomatic treatments. Volunteers will be stratified by history of ddI, ddC, or d4T use, so that effect of the treatment on HIV-associated and treatment-associated neuropathy can be assessed separately. But in January 1995, Genentech, Inc. of South San Francisco, which holds a patent for this use of recombinant human nerve growth factor, informed the government researchers that it would not provide the drug for the study. Although drug supply is not an issue, and almost all of the financial cost of the study was to be paid by the ACTG, Genentech decided "to focus our personnel, manufacturing, and financial resources on those projects which we feel have the highest likelihood for yielding the most rapid determination of efficacy and safety for each biologic agent currently in development." Genentech planned only to continue a separate trial of nerve growth factor, as a treatment for diabetic neuropathy -- which would constitute a much larger market for the product than HIV neuropathy would, although at least some experts think that the treatment is at least as likely to work for HIV neuropathy as for diabetic neuropathy. And even if the diabetes trial was successful, cancellation of the HIV study would have delayed the availability of the drug for HIV patients for about two years. After major protests by experts and community organizations alike in early 1995 -- including a national media campaign and a "fax zap" every day of the week of March 27 to top Genentech officials, coordinated by ACT UP/Golden Gate -- Genentech reinstated its earlier agreement to provide drug for the ACTG study; this trial, known as ACTG 291, is now expected to go forward. Activists are still concerned about other Genentech issues, including the recent denial of gamma interferon to the U.S. National Institutes of Health for ACTG 289, a trial of persons co-infected with HIV and tuberculosis. In the past, the company has not had any policy on compassionate use or any form of pre-approval "expanded access" to experimental drugs; but recent negotiations on this issue with breast cancer activists -- concerned about women who need the experimental drug HER/2-neu -- have gone well, and the company is now developing such a policy. Comment These events show the power of community action which combines two essential elements. First, there was a very strong case, totally supported by the research and medical as well as patient communities, and with no visible opposition anywhere. And second, there was a clear willingness and ability to quickly make the case into a high-profile public issue. A month ago this writer was skeptical that this dispute could be won; we did not see that the AIDS community had any leverage over Genentech. But the leverage was that no company wants this kind of case raised against it. ***** Merck Protease Inhibitor: New International Contact Numbers The last issue of AIDS TREATMENT NEWS gave contact numbers for information about volunteering for trials of MK-639, the experimental protease inhibitor developed by Merck and Co. Since we went to press, the numbers for Canada, Spain, and Switzerland have changed. All other numbers are the same. In Canada, call Dr. Dr. Alain Prat, 514/428-2639. In Spain, call Dr. Jorge Gonzalez Esteban, 34-1-742-6012. In Switzerland, call Dr. Martin Fenner, 41-1-828-7111. The other contacts are: in France, Dr. Marc Bratzlavsky, 33- 1-47-54-89-90; in Germany, Dr. Gunter Janhofer, 49-89-45-61- 1104; in the U.S., call the Merck Protease Inhibitor Information Line, 800/379-1332, between 8 a.m. and 7 p.m. Eastern time Monday through Friday. ***** New York City: Anabolics, Wasting Symposium, May 17 A three-hour symposium, "The Role of Anabolic Steroids, Human Growth Hormones, Appetite Stimulants & Nutrition Supplements in HIV Wasting Syndrome and Hypogonadism" will take place Wednesday, May 17, 6 p.m. to 9 p.m. The location is the New York University Law School, Tishman Auditorium, 1st floor, 40 Washington Square (Southwest corner), West 4th Street and Mc Dougel. Experts scheduled to speak include Dr. Walter Jekot, Dr. Charles Kochakian, Dr. Donald Kotler, Dr. Tadd Lazarus, Dr. Judith Rabkin, and Dr. Morris Schambelan. ***** International AIDS Candlelight Memorial, Sunday May 21, in 250 Cities in 47 Nations The International AIDS Candlelight Memorial, the world's largest community-based AIDS event, will take place Sunday May 21 in 250 cities in 47 nations. In San Francisco, a candlelight procession begins at 8:00 p.m. at the intersection of Market and Castro. In other areas, you can locate the local sponsor of the memorial by calling Mobilization Against AIDS, 415/863-4676. ***** Congress: How to Help by John S. James The news from Congress this year could have been much worse. Fortunately, the partisanship and ideology is partly balanced because many conservative members have personally known people with AIDS, and are willing to support research and care. The strong Ryan White reauthorization effort shows that bipartisanship on AIDS is possible. But the problems have not gone away -- and are expected to get worse during the fiscal 1996 budget and appropriations process. We still hear reluctance to support research for a "behavioral" disease. We still hear comparisons of funding per death on AIDS vs. other medical research -- not distinguishing between infectious and non-infectious diseases, and presented as an excuse to cut AIDS funding, not as a case for increasing medical research elsewhere. The House has eliminated HOPWA AIDS housing funding even for the current year (although this could be reversed in the Senate) -- despite the facts that the program has worked exceptionally well, that 60 percent of people with AIDS will need government-supported housing at some stage in their illness, and that supportive housing costs $40 to $100 per day while a hospital bed, often the alternative, costs over $1000. And we face increasing moves toward mandatory HIV testing, with no provisions for counseling or for care, as a cheap way to appear to be doing something. Citizens' input, through letters, calls, and visits to their representatives, is more urgent now than ever before. But AIDS organizations have done better "inside the Beltway" than in supporting the citizens' activism. That is why there is no mass movement yet to support AIDS politically, why only a tiny fraction of affected people are involved, and why there is no single or consistent source for connecting with local organizations, getting the necessary background information, and receiving action alerts as issues become current. And some organizations produce excellent information, but have no distribution to individual membership or mailing lists, meaning that there may be no way for you to receive what they produce, either for free or otherwise. The following are a few national and regional organizations which may be helpful. Many have been left out, as there is no coherent national list, and no such thing as a complete list of AIDS political organizations. National Organizations: AIDS Focus National Association of People with AIDS (NAPWA). This major membership organization offers a number of services -- some to members and nonmembers alike: * THE ACTIVE VOICE, a free quarterly newsletter, primarily focuses on legislative issues. It includes some action alerts when they are not time-critical. * The Positive Action Network (PAN), especially for persons with a fax machine, allows individuals to be kept informed of major issues. * NAPWA is now updating a pamphlet on how to contact Congress; it will be sent to all members when ready, probably early this summer. * Information and referral can connect you with local NAPWA chapters, and with other organizations. NAPWA offers other services, including NAPWA-FAX, a fax-on- demand system, with information on a variety of HIV/AIDS topics. To use it, call 202/789-2222 from the headset of your fax machine. NAPWA also publishes Medical Alert, a free bimonthly newsletter with information on mainstream and alternative treatments. NAPWA is the coordinator of AIDSWATCH '95, a grassroots effort to bring individuals from each U.S. congressional district to Washington D.C. to advocate for greater AIDS awareness and funding for care, research, prevention, and housing. This year's event will be May 21 - May 23. Membership in NAPWA starts at $25 per year. For more information, call 202/898-0414, or write to NAPWA, 1413 K St. NW, 7th floor, Washington, D.C. 20005. AIDS Action Council. This major AIDS policy and advocacy organization does not have individual memberships or a mailing list of individuals. Instead, its members are about one thousand AIDS service organizations across the U.S. Some of these member organizations redistribute AIDS Action Council materials, either verbatim or otherwise, to their own advocacy networks. Others should be encouraged to do so, as AIDS Action Council produces perhaps the most extensive information anywhere on AIDS and Congress. This material includes the WEEKLY WASHINGTON UPDATE, an online newsletter distributed on the HandsNet HIV/AIDS Forum computer system -- which unfortunately reaches only about 75 AIDS organizations because of its cost. AIDS Action Council does not itself distribute this information more widely on the Internet, but it is possible for others to do so. One individual with access to the HandsNet computer system could easily provide an important national service simply by uploading this information to the major AIDS computer networks; no one is doing so now. AIDS Action Council also produces the most extensive action alerts available on national issues as they reach legislative decision points. These action alerts are usually addressed to AIDS service organizations; ideally, some of them would be slightly rewritten for citizen activists. For example, those writing to Congress as experts (or as those with relevant personal experience) may want to write to all the members of a key committee which will be making decisions on the issue; while those addressing Federal issues as citizens without special knowledge would usually be encouraged to contact only their own representatives -- their Congressperson and two Senators -- always the most important members to call or write. For more information about most AIDS Action Council materials and programs, it is probably best to work with a local AIDS service organization which is a member of AAC. The AIDS Action Council also operates the National AIDS Response Network (NARN), which faxes selected action alerts to individuals who can re-transmit them to their own networks. For more information about NARN, call Matt Patrick at AIDS Action Council, 202/986-1300 ext. 12. Treatment Action Network. The Treatment Action Network, operated by Project Inform, consists of about 900 individuals and organizations nationwide which organize grassroots support on research and treatment issues. Membership is available free of charge. For more information, call Project Inform at 415/558-8669. Mobilization Against AIDS. San Francisco based Mobilization Against AIDS does direct lobbying on national AIDS issues, focusing on prevention reform, appropriations, and the threat of block grants; also, it organizes the annual AIDS Candlelight Memorial. It publishes a syndicated AIDSWatch column, distributed by computer in alternative versions of different length for publication in gay and AIDS periodicals. For more information, including where to find AIDSwatch in your city, call Mobilization Against AIDS, 415/863-4676. Center for Women Policy Studies. The Center for Women Policy Studies distributes action alerts on all women and AIDS issues, and works to reduce barriers to appropriate medical care. One current focus is the Ackerman Bill (Newborn Infant HIV Notification Act, HR 1289), which would effectively institute mandatory testing of pregnant women. For more information, call the Center for Women Policy Studies, 202/872-1770. National Minority AIDS Council (NMAC). NMAC provides technical assistance to several hundred minority AIDS organizations. For more information, call the membership department at NMAC, 202/544-1076. Committee of Ten Thousand (COTT). This group is supporting legislation on hemophilia and AIDS, especially the Ricky Ray Hemophilia Relief Fund Act (HR 1023), which would lay the groundwork for compensation of persons who contracted HIV through blood products -- and the Blood Products Advisory Committee Act (HR 1021), which would require that at least one third of the voting members of the FDA's Blood Products Advisory Committee be persons who have received blood products, or who represent consumer organizations with expertise in blood products. For more information, call COTT at 617/739-COTT. Mothers' Voices. This new organization, primarily of mothers of persons with AIDS, works to raise awareness of the epidemic and change attitudes and public policies. It publishes a quarterly newsletter, STRAIGHT FROM THE HEART, and is now circulating Mothers Day cards which are signed by family members and friends and delivered to legislators. For more information, call Mothers' Voices at 212/730-2777. National Organizations: Gay Focus but AIDS Activity Log Cabin Republicans. Those with a Republican viewpoint may want to contact this gay Republican group, which is also active in AIDS issues; currently its number one legislative priority is reauthorization of the Ryan White CARE Act. It has a team of lobbyists who follow Congressional issues, and it has the best contacts with Republican members of congress of any AIDS organization -- which is especially important now since Republicans control both houses of Congress. It can send callers any material it has, or refer them to local Republican organizations, including Log Cabin chapters in 32 states. For more information, call David Greer, Director of Public Affairs, 202/347-5306, or write to Log Cabin Republicans, 1101 14th St. NW, Suite 1040, Washington, D.C. 20005. Human Rights Campaign Fund. The Human Rights Campaign Fund, the largest gay rights organization with a mailing list of 325,000, also works on AIDS issues. It offers a number of membership and advocacy programs including FAN (Federal Advocacy Network), which recruits and trains members to mobilize grassroots support and attend local meetings with members of Congress -- and Speak Out, in which members authorize HRCF to send immediate messages to members of Congress on selected issues. It does not separate its AIDS and gay work, in that a person cannot sign up specifically for only one. For membership information or to join the Human Rights Campaign Fund, call 800/777-HRCF. For other information, call 202/628-4160. Some State, Regional Organizations The national organizations seldom follow statewide legislative issues. The following state and regional organizations can help you follow state (and also sometimes federal) AIDS issues, and make your voice heard at critical times. This partial list includes ten states and territories with the most AIDS cases, and some other states when we happened to have the information. If your state is not listed here, you may be able to find an appropriate referral through a local AIDS service organization; ask them who does "legislative advocacy" for your state. Or you could ask the National AIDS Hotline, 800/342-AIDS. Or ask Mobilization Against AIDS (listed above under national organizations) to refer you to a local coordinator of the AIDS Candlelight Memorial -- who will probably know an organization doing advocacy work for your state. California. Northern California: The Bay Area HIV Advocacy Network, operated by the San Francisco AIDS Foundation, is now recruiting individuals and organizations in all counties in Northern California. It offers action alerts, informational mailings, a fax/phone tree, and HIV POLICY WATCH, a monthly policy bulletin. It organizes meetings with legislators, and public policy roundtables. For more information, call Ryan Clary at BAHAN, 415/864-5855 x 3032 Southern California: AIDS Project Los Angeles maintains three grassroots networks, focusing on action alerts by mail, urgent alerts by fax, and training for in-person lobbying. For more information, call APLA, 213/993-1680. Three other organizations in Southern California also provide information to their constituents and friends on pending local, state, and federal AIDS policy issues, and coordinate action alerts: AIDS Healthcare Foundation, Los Angeles -- contact Csar Portillo, 213/462-2273. AIDS Service Center, Pasadena -- contact Connie Norman or Paul Daniels, 818/796-5633. Being Alive: People with HIV/AIDS Action Coalition of Los Angeles -- contact Gary Costa or Robert dal Porto, 213/667- 3262. California statewide: Rural AIDS Project. Contact Donna Yutzy, 916/444-0424. Florida. HEALTHLINK Inc. has mailing, phone, and fax lists. Contact Marie Wansiki, executive director, 305/565-8284. Georgia. AIDS Survival Project, 404/874-7926, has a monthly newsletter and a fax network. Illinois. The AIDS Foundation of Chicago has a fax alert network for Illinois, for both state and federal issues. Contact Michelle Mascaro, 312/922-2322. Kentucky. Call David Mont, AIDS Volunteers, 606/254-2865. AIDS Volunteers is a clearinghouse for information from the AIDS Action Council, the Fairness Coalition, and the Title II coalition. Maryland. Contact AIDS Legislative Committee, Liza Solomon, President, P.O. Box 1322, Baltimore, MD 21203. The AIDS Legislative Committee hires a lobbyist on Maryland issues, and distributes action alerts. Massachusetts. Mass Action, a volunteer organization of about 600 people, operates a phone tree to generate calls to legislators on AIDS/HIV issues. Also, the Massachusetts AIDS Policy Task Force organizes testimony to the legislature and meetings with representatives. Both projects focus on state issues, but now are responding to Federal issues also. For more information about these programs, call Chris Marrion at the AIDS Action Committee, 617/450-1213; for other information about the AIDS Action Committee, call 617/437- 6200. New Jersey. AIDS Resource Foundation for Children, 201/483- 4250. New Mexico. The New Mexico Association of People Living with AIDS, 505/266-0342, has a newsletter and a fax list. New York. (1) The Gay Men's Health Crisis runs New York Citizens AIDS Network, which consists of three response networks: the Letter Brigade, the Quick Response Corps (for emergency response to faxed alerts), and the Frontline Action Force, which conducts monthly trainings by the public policy department to prepare people for lobbying, testifying, etc. For more information, call the Public Policy Information Line, 212/337-3338. This organizations focuses on New York City, but also covers state issues. (2) The New York AIDS Coalition distributes action alerts, helps people contact legislators, and has local groups, focusing on New York State issues. For information, contact Joey Presley, 212/629-3075. Pennsylvania. Call PCASO, Pennsylvania Coalition of AIDS Service Organizations, 717/238-2437. Individuals in Pennsylvania can sign up to be on a fax or mailing list for action alerts. Puerto Rico. Contact Comision de Derechos Civiles, Apt. 2338, Hatorey, Puerto Rico 00919, 809/764-8686. Or contact Sabana Litigation and Education Project, which does civil rights education and litigation, 809/759-8832, or 809/751-7485. Texas. Call Texas AIDS Network, 512-447-8887, or email to tan@global.org, or write to P.O. Box 2395, Austin, TX 78768. TAN sends action alerts to its members; for non-members, it has an Advocates Council, but not all districts are covered yet. Current Lobbying Events AIDSWATCH 95. This annual national event brings hundreds of people to Washington to visit their representatives in Congress. This year it will take place Sunday May 21 through Tuesday May 23. Training will be provided; persons are encouraged to call for ideas on how to travel to and stay in Washington on a limited budget. AIDSWATCH '95 is sponsored by 25 different AIDS organizations, and coordinated by the National Association of People with AIDS, 202/898-0414. Mother's Day card campaign. For more information, contact Mother's Voices, 212/730-2777. Signed cards, available from Mother's Voices, should if possible be mailed to that organization by April 28; they will be sorted and delivered to members of Congress by Mother's Day. California AIDS Budget Lobby Day. Hundreds of people are expected in Sacramento for the 5th annual California AIDS Budget Lobby Day, Monday May 8 from 10 a.m. to 4 p.m. at the California State Capitol. Interested persons should pre- register; for more information, call 213/993-1592. AIDS Budget Lobby Day is organized by AIDS Project Los Angeles, California Association of AIDS Agencies, LIFE AIDS Lobby, Planned Parenthood Affiliates of California, and the San Francisco AIDS Foundation. For Background on Congress Many current books and reference materials on Congress and politics are published by Congressional Quarterly. To obtain a catalog, call 800/638-1710 or 202/822-1475. ***** 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 Reader Services and Business: Richard Copeland Thom Fontaine Tadd Tobias 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 1995 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.