Date: Wed, 21 Dec 1994 19:48:45 -0800 (PST) From: "John S. James" Lines: 1092 AIDS TREATMENT NEWS Issue #213, December 23, 1994 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: Kaposi's Sarcoma (KS): Possible Virus Discovered 1 Kaposi's Sarcoma: DOX-SL Available to Some Patients through New Program 2 Wasting Syndrome: Human Growth Hormone Becoming Available -- Treatment IND 3 ACT UP Fights for Breast Cancer Drug; Funeral Procession Vs. Genentech 3 "AIDS Coffee Klatch" Grassroots Political Organizing 4 The New Congress: Call for Information 4 Activist Groups, Buyers' Clubs, and PWA Coalitions, U.S. and Canada 5 AIDS TREATMENT NEWS Selected Index, through 1994 7 ***** Kaposi's Sarcoma (KS): Possible Virus Discovered by John S. James Researchers at Columbia University have found evidence of a previously unknown herpesvirus in KS lesions of persons with AIDS. This virus has not been found in tissues of persons without AIDS and without KS -- including those with lymphoma and other diseases. It is occasionally present in non-KS tissue from persons with AIDS. This association does not necessarily mean that the virus causes KS -- since it could be a normally-occurring virus which preferentially grows in KS tissue. But if the virus does cause KS, the finding will be very important for developing treatments, for diagnostic tests to tell who is at risk, and for epidemiological studies to prevent the spread of the virus. It is not known whether or not the new virus is sensitive to any existing drugs. Researchers have long believed that KS is not a true cancer -- and that it is probably caused by an infectious agent other than HIV, but is unlikely to become a serious problem except in those who are immune compromised. It is 20 times more likely to be found in gay men with AIDS than in hemophiliacs with AIDS, and may be transmitted (separately from HIV) by unsafe sexual practices. The new research used an advanced biotechnology technique called representational difference analysis (RDA). In RDA, two different tissues are taken from the same patient -- in this case from a KS lesions, vs. tissue without KS. RDA uses gene amplification (PCR) in a special way, in order to find genetic sequences which are uniquely present in the tissue of interest. (Once such a sequence is identified, more conventional techniques can be used to identify it in other tissue samples.) The paper describing the research appeared in SCIENCE, December 16. The NEW YORK TIMES reported that the editors of SCIENCE took five months to examine the data, to be especially careful to make sure the results were valid. There is skepticism about the reasons for the delay. This research was funded by Columbia University's Department of Pathology, and School of Public Health. Comment: Foscarnet, Call for Information At the Second International Congress on Drug Therapy in HIV Infection, last month in Glasgow, Scotland, a physician in the audience reported that several KS patients had improved when treated with foscarnet (Foscavir), an approved drug usually used for treating CMV infection. According to NURSING 94 DRUG HANDBOOK, foscarnet inhibits all known herpesviruses in laboratory tests. Unfortunately foscarnet must be given intravenously, and it can cause serious toxicities. We heard that some KS experts scoffed at these case reports, because the information was not from a controlled trial. They probably did know about the Columbia findings, which were not public at the time of the Glasgow meeting but were discussed privately there. If you know of any case in which a person with KS has used foscarnet, regardless of whether or not there seemed to be any effect on the KS, please contact John S. James at AIDS TREATMENT NEWS, 415/255-0588, or fax to 415/255-4659. References Chang Y, Cesarman E, Pessin MS, Lee F, Culpepper J, Knowles DM, and Moore PS. Identification of herpesvirus-like DNA sequences in AIDS-associated Kaposi's sarcoma. SCIENCE. 1994; volume 266, pages 1865-1869. ***** Kaposi's Sarcoma: DOX-SL Available to Some Patients through New Program DOX-SL (TM) (liposomal doxorubicin), an experimental treatment for Kaposi's sarcoma, will now be available through a new trial to persons who have failed systemic combination chemotherapy. DOX-SL is a conventional chemotherapy drug (doxorubicin), but in a new form which causes it to be targeted better to KS lesions. DOX-SL is also being tested as a treatment for some solid-tumor cancers. (For a short background article, see "KS: DOX-SL Submitted for Approval," AIDS TREATMENT NEWS #208, October 7, 1994.) This trial is for patients with AIDS-related Kaposi's sarcoma, who have received systemic combination chemotherapy (with two drugs, not including interferon, given together), and either are intolerant to the combination chemotherapy, or have had disease progression after receiving at least two cycles of it. "Intolerance" is defined as grade IV toxicity, or more than one episode of grade III toxicity on the same regimen; "disease progression" is defined as new visceral sites, or progression of visceral disease, or development of new or increasing KS-associated edema lasting at least one week and interfering with normal activities, or a 25 percent increase in the number of lesions, or a change of 25 percent or more of all previously "flat" lesions to "raised." There are also other entry requirements, including cardiac ejection fraction >50 percent, hemoglobin >9, neutrophil count >1,200, platelet count >75,000, and bilirubin and creatinine both less than twice the upper limit of normal. The new study protocol will also be available to patients who have been participating in DOX-SL protocols 30-10, 30-11, or 30-12, and for whom continuation of DOX-SL is medically indicated. This protocol will be available at sites in the following cities: Atlanta (2 sites), Austin, Berkeley (CA), Boston (2 sites), Chicago (2 sites), Dallas, Detroit, Encino (CA), Houston (3 sites), Los Angeles (3 sites), Miami, New Orleans, New York (5 sites), Philadelphia, Phoenix, Roswell Park (NY), San Diego, San Francisco (4 sites), Seattle, St. Louis, Tampa, and Washington, DC. Also, in a limited number of cases, the drug will be available to patients elsewhere, through their physicians. Liposome Technology, Inc., which is developing DOX-SL, will make the drug available without charge. However, it will not pay for infusion costs or other expenses. For more information about this study, which is called protocol 30-25, physicians will be able to call 800/KAPOSIS. (Note: On December 16, as we go to press, this number has not yet been connected. Also, some of the above sites will start the new protocol in January -- or in a few cases, in February -- because they are waiting for approval from their Institutional Review Board.) ***** Wasting Syndrome: Human Growth Hormone Becoming Available-- Treatment IND On December 20, the FDA approved a program to make human growth hormone available to persons with AIDS-related wasting syndrome, before full marketing approval for this indication; the drug should be available under this program by mid January. Wasting syndrome is a frequent cause of death of persons with AIDS. Human growth hormone has shown considerable promise for treating this condition (see AIDS TREATMENT NEWS #205, August 19, 1994); an application for full approval may be submitted to the FDA in mid 1995. The new program will allow Serono Laboratories, Inc., the company testing the drug for AIDS-related wasting, to charge to recover their cost for providing this expensive drug -- which can cost $150 per day for the initial treatment, though it may later be possible to reduce the dose. Serono has hired a reimbursement agency to help patients get paid by their insurance companies and other third-party payers, and will provide some drug without charge to those unable to pay. The rules require that this program is available only to patients "who have tried a course of approved therapy with Megace and Marinol where the response has been determined to be poor and that continued treatment with those agents has been judged by the attending physicians to be of doubtful promise." There may be efforts to get this restriction removed. Megace and Marinol are both approved treatments for significant unexplained weight loss, but are widely regarded as unsatisfactory. To use Serono's human growth hormone (brand name Serostim (TM)), a physician must first qualify as a site with Serono. Later, less paperwork is required to add each individual patient. Physicians should begin the process by calling the Serostim Information Line, 800/714-AIDS (800/714-2437). Patients also can call this number for information. Note: Human growth hormone has been an approved prescription drug for years in the U.S. for treatment of growth-hormone deficiency in children. But it is tightly restricted to prevent abuse by athletes, and very few people with AIDS have been able to obtain it from either of the companies which have long marketed it in this country. Serono's version of the drug has been approved in 50 countries, but not in the U.S. It appears to have been easier to obtain the Serono drug through the treatment IND route, than to modify the restrictions on the drug already here. AIDS treatment activists have made major contributions to the development and access to growth hormone; without their work, the drug would not have been available to patients for a long time. ACT UP/Golden Gate and Project Inform, and the San Francisco AIDS Foundation have taken the lead, and Mother's Voices, ACT UP/New York, Treatment Action Group (TAG), and AIDS Project Los Angeles have provided critical assistance. ACT UP/Golden Gate has produced a flyer describing the treatment IND program; it will be updated as required. To obtain a free copy, call 415/252-9200, and leave your name and address, slowly, on the voicemail. [Physicians and patients should know that another alternative for treating wasting syndrome, thalidomide, is currently in clinical trials. The ACT UP flyer on human growth hormone also includes information on thalidomide.] ***** ACT UP Fights for Breast Cancer Drug; Funeral Procession Vs. Genentech On December 5, AIDS, breast cancer, and lesbian activists joined forces to protest lack of access to a promising treatment for certain cancers. Because the protest target, Genentech, Inc. of South San Francisco, is housed in a number of widely-separated buildings, too far from each other to easily walk between, the protest took the form of a 15-car funeral procession which drove from San Francisco to Genentech, then went from building to building, with protesters getting out and picketing at each site. About 40 people took part. The treatment is a monoclonal antibody targeted against a receptor called HER/2-neu. Several patients have had very good results with the antibody when all other treatments have failed. However, the treatment only works for tumors which express the receptor excessively -- and finding out which patients could benefit requires a special test. According to Genentech, this test is available to physicians from Roche Biomedical Laboratories and others, independently of Genentech; according to breast-cancer activists, patients must be tested through Genentech in order to qualify for the company's trials and have a chance to receive the drug. The protest concerned Genentech's lack of a compassionate use policy, and also lack of access to the test (to tell if a patient is likely to benefit from the drug). According to breast-cancer activists, a 40-year-old physician died after waiting so long for the test that it was too late to use the drug; according to Genentech, this is inaccurate, but given patient confidentiality, neither Genentech nor her physician can discuss it. Also, activists had been frustrated by difficulties in arranging appropriate meetings with the company. We asked Genentech if it wanted to reply to a draft of this article, and received the following statement: "Genentech empathizes with these patients and has been in discussion with them regarding this issue. No final decision has been made at this time regarding compassionate use. However, Genentech's policy is to try to do the most good for the most patients as quickly as possible. This means timely and effective progress with clinical trials leading to approval. The HER-2 antibody is scheduled to begin in phase III trials in the first half of 1995." Breast Cancer Action, based in San Francisco, has led the fight for access to the treatment. But its board decided not to sponsor this demonstration, which included plans for civil disobedience. Instead the demonstration was sponsored by the Breast Cancer Working Group of ACT UP/Golden Gate. As it turned out, there were no arrests; in fact, the activists praised corporate security as being well informed, low key, and inconspicuous. The protest got good coverage on public radio, but otherwise received little media attention, because of another story in the news. At the same time as the demonstration, a mentally ill man walked into a bank in San Francisco with two fake grenades, and was shot and killed by police. Reporters left the Genentech protest to cover the bank violence, which immediately filled the newspapers and pushed other news aside. But Genentech learned that the issue will not go away; clearly its luck in avoiding feared publicity may not hold next time. The HER/2-neu antibody, incidentally, has no role in AIDS treatment. The fact that many AIDS activists would fight for access to a drug which they cannot use personally reflects the close working relationship between AIDS and breast-cancer activists in San Francisco -- and points the way to the coalition work which will be increasingly important in the future. ***** "AIDS Coffee Klatch" Grassroots Political Organizing by John S. James December 20: The new Congress convenes in January, and most of its members have little background or involvement with AIDS. What happens to AIDS research, care, prevention, and human rights depends on whether members of Congress hear from VOTERS IN THEIR DISTRICTS that AIDS is important to them. But so far the AIDS community has done poorly in grassroots organizing -- in helping the millions of people who care about AIDS to make their voices heard, by Congress, by city, state, and other officials, and in the media. Most Congressional offices almost never hear from their voters on AIDS. This must improve -- quickly. We need communication groups -- relaxed, friendly, non- competitive, personally rewarding -- that also send dozens of letters and calls from every meeting. "Action alerts" from national organizations must be made easier for non-specialists to use. Organizations should test their alerts through informal focus groups -- asking people to actually write or call, and report where the obstacles are, while the organizer watches and listens without giving assistance. The "AIDS Coffee Klatch" -- now being started by this writer and others -- is a model for combining political defense with social groups. The following explanation is from the voicemail we set up this week for outreach. Feel free to use this material (including the name AIDS Coffee Klatch) for your own efforts to support AIDS funding and human rights. Note that this kind of organizing costs almost no money; funding is not required. Voicemail Text: Hello, welcome to AIDS Coffee Klatch. We are developing small, personal social groups which also write and call Congress, local officials, media, and others, to support AIDS funding and the human rights of people with AIDS and HIV. After the November elections, our community needs this kind of strength more than ever before. To bypass this introduction and go directly to our action alerts and schedule of San Francisco meetings, press '1' on your telephone. To leave us a message, press '2'. The central goal of AIDS Coffee Klatch is to create a kind of organizing which is MASS MOVEMENT READY -- graceful and workable enough to become part of everyday life, so it can spread to many thousands of people, not just to political specialists. A successful model could contribute decisively to a more livable future, a more livable world. We base this work on four principles. These groups must: (1) Combine POLITICAL work with PERSONAL AND SOCIAL needs. The same groups that send dozens of letters and calls from every meeting will also be relaxed, low-key social gatherings, places to meet people and develop friendships, to be aware of each other and ready to help in adversity. (2) Be easy-going, low stress, non-competitive, without pressure to do more or guilt for not doing it. People write letters or make calls as individuals, when it feels right, not otherwise. There is no need to fight over policy, since the group does not take positions on issues. Instead, individuals support the issues they feel comfortable with -- and pass when they don't. Anyone can bring their own AIDS issues to the group. (3) Work with high-quality action alerts -- and insist that AIDS policy organizations deliver high quality. Action alerts must speak to everyone, not just Washington insiders. They must reflect solid research, strategic thinking, a sense of timing, and widespread community consensus. They must accurately portray the thinking of both sides, including our opponents -- and show why our position benefits the public as a whole, as well as people with AIDS. And action alerts must be clear, explicit, and complete about whom you can write or call, how to do it, and what points are most important to communicate. (4) Work in coalition -- with other organizations, other causes and interests, and other communities. For More Information Call our voicemail at 415/241-1568. ***** The New Congress: Call for Information National AIDS organizations are hurrying to find out about the new members of Congress. Have they had any involvement with AIDS, or with other health issues? Are they likely to be friendly, hostile, or indifferent? What issues of any sort are most important to them? If you have such information about your representatives or other members of Congress, especially the new members, you can help by calling some or all of the organizations listed below. The best way to make sure the information gets to those who need it would be to fax it to all of them. AIDS Action Council (AAC): Call 202/986-1300, ext. 47, or fax to 202/986-1345. Human Rights Campaign Fund (HRCF): Call Winnie Stachelberg, 202/628-4160, or fax to 202/347-5323. Mobilization Against AIDS (MAA ): Call Ben Carlson, 415/863- 4676, or fax to 415/863-4740. National Association of People with AIDS (NAPWA): Contact Lisa Ragain, 202/898-0414, ext. 11, or fax to 202/898-0435. National Minority AIDS Council (NMAC): Call 202/544-1076, or fax to 202/544-0378. Project Inform's Treatment Action Network (TAN): Call Tom Wonsiewicz, Anne Donnelly, or David Lewis at 415/558-8669, or fax to 415/558-0684. The Sheridan Group: Call Tom Sheridan, 202/462-7288, or fax to 202/483-1964. THE WASHINGTON BLADE (gay newspaper), Call 202/797-7000, or fax to 202/797-7040 (fax or mail preferred). And if you know of other national groups that are actively working with Congress on AIDS issues, call us, AIDS Treatment News, 800/TREAT-1-2. (There are also important local and regional groups, but too many for our short list.) ***** Activist Groups, Buyers' Clubs, and PWA Coalitions, U.S. and Canada Updated December 1994 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 called these numbers and listed only those we could verify; some 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. In the future, we may focus on grassroots-organizing groups which help people write or call their political representatives, other officials, and media.] For information about new ACT UP affiliates, call the ACT UP Network, 215/731-1844. For new PWA coalitions, call 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 call AIDS Treatment News at 800/TREAT-1-2. Remember that there are well over ten thousand AIDS organizations in the U.S. alone; only a few can be included in this specialized list. To find out about services and organizations in your area, call the National AIDS Hotline, 800/342-AIDS, 24 hours a day; for the same information in Spanish, call 800/344-SIDA, 8 a.m. to 2 p.m. Eastern time, 7 days a week. 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 Community AIDS Council 602/265-2437 B,C Phoenix Phoenix Body Positive 602/264-7414 C Tucson La Frontera Center 602/741-2351 C Tucson PACT for Life 602/770-1710 A,B,C CALIFORNIA Long Beach Being Alive Long Beach 310/434-9022 C Los Angeles ACT UP/Los Angeles 213/669-7301 A Los Angeles Being Alive 213/667-3262 C Oakland ACT UP/East Bay 510/568-1680 A Orange County ACT UP/Orange County 714/253-0185 A Orange County Being Alive Orange County 714/362-5483 C Redondo Beach Being Alive South Bay 310/544-2702 C Sacramento ACT UP/Sacramento 916/944-1479 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 415/292-4055 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 Santa Barbara CFIDS Buyers' Club 800/366-6056 B Van Nuys Being Alive 818/908-3840 C Ventura The Unity Pride Coalition 805/650-9546 A West Hollywood Being Alive 310/358-2281 C COLORADO Denver PWA Coalition Colorado 303/837-8214 B, C CONNECTICUT Bethel AIDS Project Greater Danbury 203/778-2437 C New Haven ACT UP/New Haven 203/732-2229 A DISTRICT OF COLUMBIA Washington ACT UP/Washington 202/328-7965 A Washington Carl Vogel Center 202/289-4898 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 ACT UP/Ft. Lauderdale 305/764-7670 A Fort Lauderdale Health Link 305/565-8284 B, C Fort Lauderdale PWA Coalition Broward 305/565-9119 C Fort Lauderdale Wholesale Health 305/764-1587 B Havana ACT UP/North Florida 904/539-0968 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 Miami PWA Coalition 305/573-6010 C Orlando LUCHA 407/933-4482 A, B, C Palm Beach PWA Coalition 407/655-3322 C Sarasota AIDS Manasota 813/954-6011 B,C Tampa DACCO 813/223-4648 C Tampa PWA Coalition Tampa Bay 813/238-2887 C 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 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 Test Positive Aware Network 312/404-8726 C Peoria Friend's of PWA's 309/671-2144 C INDIANA Indianapolis The Damien Center 317/632-0123 C IOWA Davenport AIDS Project Quad Cities 319/324-8638 C Waterloo Cedar AIDS Support System 319/292-2437 C KENTUCKY Louisville KIPWAC 800/676-5490 C LOUISIANA Baton Rouge ACT UP/Capitol 504/343-3375 A New Orleans PWA Coalition 504/524-3488 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 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 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 313/831-4400 C Grand Rapids AIDS Resource Center 616/459-9177 C MINNESOTA Minneapolis The Aliveness Project 612/822-7946 C MISSISSIPPI Jackson HIV/PWA Project 601/924-3333 C MISSOURI Kansas City ACT UP/Kansas City 816/292-2811 A St. Louis ACT UP/St. Louis 314/771-4844 A St. Louis Positive Voices 314/771-6641 C NEW JERSEY Audubon AIDS Coalition S. N. J. 609/573-7900 C NEW MEXICO Albuquerque NMAPLA 505/266-0342 C Santa Fe Northern NM AIDS Center 505/820-2437 A, C NEW YORK Albany ACT UP/Albany 518/861-6337 A Albany Damien Center 518/449-7119 C Albany Student Coalition Against AIDS 518/432-9279 A,C Buffalo AIDS Alliance of Western NY 716/852-6778 C Buffalo ACT UP/Western New York 716/882-3958 A Great Neck ACT UP/Long Island 516/829-0810 A Ithaca ACT UP/Ithaca 607/272-2833 A Long Island PWA Coalition 516/225-5700 C New York City ACT UP/New York 212/564-2437 A New York City DAAIR 212/725-6994 B New York City New York AIDS Coalition 212/629-3075 C New York City PWA Coalition of New York 212/647-1415 C New York City PWA Health Group 212/255-0520 B New York City Treatment Action Group (TAG) 212/260-0300 A Rochester ACT UP/Rochester 716/328-5337 A Utica ACT UP/Utica 315/853-6418 A NORTH CAROLINA Research Triangle Park ACT UP/Triangle 919/990-1197 A OHIO Cincinnati ACT UP/Cincinnati 513/861-6171 A Cleveland ACT UP/Cleveland 216-621-2233 A Columbus Ohio AIDS Coalition (Statewide) 614/445-8277 C OREGON Milwaukie CCARE 503/653-8738 A,C Portland Metro HIV Advocacy Council 503/284-6807 A,C Portland Positive People (Statewide) 503/223-6339 x-172 A,C PENNSYLVANIA Philadelphia ACT UP/Philadelphia 215/731-1844 A Philadelphia We The People 215/545-6868 C Pittsburgh Cry Out!/ACT UP 412/683-9741 A SOUTH DAKOTA Sioux Falls ACT UP/South Dakota 605/332-3966 A TENNESSEE Memphis Friends for Life HIV Res. 901/272-0855 C Nashville Nashville Cares 615/385-1510 C TEXAS Austin AIDS Services of Austin 512/451-2273 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 Renton ACT UP/South King County 206/226-3812 C Seattle ACT UP/Seattle 206/292-8766 C Seattle Seattle PCA 206/233-8048 B Seattle People of Color Against AIDS Netw. 206/322-7061 C WEST VIRGINIA Morgantown Mountain State AIDS Network 304/292-9000 C WISCONSIN Madison Madison AIDS Support Network 608/238-6276 C Milwaukee ACT UP/Milwaukee 414/769-8708 A WYOMING Casper Wyoming AIDS Project 307/237-7833 C CANADA Halifax Nova Scotia PWA Coalition 902/429-7922 C London London (Ontario) PWA Foundation 519/434-1601 Montreal ACT UP/Montreal 514/527-2423 A Montreal CPAVIH 514/282-6673 A,C Ottawa Canadian AIDS Society 613/230-3580 C Ottawa area Canadian Nutrition Club 613/284-0076 B Toronto Toronto PWA Foundation 416/506-1400 C Vancouver Pacific AIDS Resource Center 604/681-2822 A,C Victoria PWA Society 604/383-7494 C ***** AIDS TREATMENT NEWS Selected Index Through December 23, 1994, Issue #213 3TC (lamivudine) 140,173,212 3TC+AZT 212 566C80 (atovaquone)(Mepron) 133,139,160,164 accelerated approval 206 access vs. answers debate 205,207 acemannan 157,182 ACT UP 146,147,165,212,213 activism 130,147,151,164 188,212 acupuncture 130,157 acyclovir (Zovirax) 143,165,168,190,198,210 ADAP (see CA AIDS Drug Assistance Program) AEGIS (computer) 191,212 African Traditional Medicine 166 AGM-1470 135,141,162. 188,195 AIDS Clinical Trials Information 210 AIDS Drug Interaction Guide 208 AIDS Hotlines 196 AIDS Patents 210 AIDS/HIV Forum (computer) 212 AIDSLINE 192 allergies 181 alpha APA 159,171 alpha interferon 154,155,179,185 alternative & traditional treatments 153,157,158,166 alternative treatment library 184,186,209 alternative treatment, NIH grant 209 anabolic steroids 166,187 anal cancer 184,203 angiogenesis inhibitors 117,122,135,141,195 angiomatosis 129 antioxidant 152 antisense 141,185,187 Antiviral Agents Bulletin 199 antivirals 158,164,200 aphthous ulcers 133,179 apoptosis 181 aspirin 109,118,183 ateviridine 183 ATIS 210 azithromycin (Zithromax) 132,133,136,139,152 AZT (zidovudine, Retrovir) 194,196,207,211,212 AZT/Perinatal Transmission 194,207 AZT/when to switch 196 Bactrim (co-trimoxazole, TMP-SMX) 147,152,161 basic science 199 Bastyr University 209 BBS (see computer bulletin boards) bDNA 211 benefits 74,76,105,144 beta carotene 134,158 beta-lapachone 174 BHAP 183 Biaxin (see clarithromycin) 190 bitter melon 155,157 blue-green algae (sulfolipids) 87,99 breast cancer 145,213 Bucast (Castanospermine Analog) 193 buyer's clubs 167,176,188,195,213 buyer's clubs, FDA policy 195 CA AIDS Drug Assistance Program 192,193,195,210 CAIN 191 camptothecin 197 cancer 122,126,135,139,162,174 capsaicin (Axsain, Zostrix) 121 castanospermine 193 CD8 expansion 151 cell transfer 207 cervical cancer 184 children/infants 130,174,210 Chinese medicine 61,68,71,75,93,107,126,153,158 clindamycin 79,104,108,111,129 clinical trials 116,141,144,149,154 CMV 167,168,171,179,189,190 CMV Ig 168 codon 215 196 coenzyme Q-10 (ubiquinone) 26,119,124 cofactors 83,108,119,124 combination therapies 190,194,201,211,212 community-based research 65,66,83,85,105,143 compound Q (trichosanthin) 82,88,99,104,119,155 computer bulletin boards (BBS) 191 computerized information 114,116,124,154,165,191,212 Concorde Study 173,177 Congress 211 conocurvone 182 convergent combination therapy 170 cosalene 183 CPT-11 (irinotecan) 197 cryptosporidiosis 124,129,133,139,206 curcumin 174,176,177,198 d4T (stavudine) 166,185,198,200,201,202,203 daunorubicin, liposomal (DaunoXome) 117,122,174 ddC (HIVID) 150,154,155,166,167 ddC/AZT 115,132,145,150,154,167,201 ddI 141,149,150,160,166,167,185 ddI/ d4T 185 ddI/AZT 167,168 delavirdine (BHAP) 183 dementia 97,101,156,171 depression 184 dermatology 197 desensitization 147,161,180 DHEA (EL 10) 48,49,84,140,150 diarrhea 133,141 diclazuril (Clinicox) 80,95,107,111 Dilantin 203 DNCB 14,116,157,182 doctor/patient relations 100,111 DOX-SL 184,195,208, 213 doxorubicin (Adriamycin) 73,122,174 drug interaction guide 208 e-mail 172 elections 211 eosinophilic folliculitis (EF) 161,197 EPO (erythropoietin) 82,150 ethics 208 ethyloxime 25 181 etoposide (VP-16) 73,122,149,168 exercise therapy 157 expanded access 212 fatigue 184 FDA 180,195,205,206,207,208 FDA,accelerated approval 206 FDA,import policy 195 Federal Biotech. Transfer Dir. 199 fetal tissue research 164 FIAU 129,133 flu shots 138,185,187 foscarnet (Foscavir) 129,133,136,138,168 free AIDS databases (online) 192 funding research 201 funding/lobbying 151,156,157,173,174,190 G-CSF (Neupogen) 122,167 ganciclovir (DHPG,Cytovene) 167,168 ganciclovir eye implants 167 garlic/cryptosporidiosis 206 gastrointestinal manifestations/HIV 133 Gebbie, Christine-interview 203 GEM-91 185 gene therapy 158,190,199,207 Genentech 213 Glaxo 212 Global AIDS Action Network(GAAN) 187,191,201 glutathione 88,92,93,119,121,152,157,187 glycyrrhizin 17,103,115,181 GM-CSF 87,93,94,105,108,110,122,167 gp120 (vaccine) 130,149,174 gp160 (vaccine) 130,152,174,183,185 grassroots organizing 203,208,213 HandsNet (computer) 212 health care politics 132,135,136,137,179,192,203 hearing 171 HemaCare 209 hemophilia 89,102,103,132,137 heparin,substitutes 100,122,146,201 high-tech unexpected (strategy) 190 HIV RNA 190,194,204,206,209,210,211 HIVIG (HIV hyperimmune globulin) 153,154,158 HPMPC 76,96,149,190 HPV (see human papilloma virus) human growth hormone 187,205,209,213 human papilloma virus (HPV) 146,203 Human Retroviruses Conference review 190 Humatin (paromomycin) 107,111,129 hydroxyurea 178,211 hypericin 125,138,141,146,155,167,168 hyperimmune milk (colostrum) 49,95,107 IL-2 122,186 immigration politics 128,129,134,150,170,177,208 immune globulin (IVIG) 152,154,168 immune restoration 151,169,200 Immune-based therapy 190 immunology book 203 import policy 195 insect bites 197 insurance 74,76,120,136,173,192,193 interactions (drug) 208 interferons 122,132,151 interleukins (IL-2,etc.) 119,122,151,186 international edition, 155,159,173 international organizing 201 international travel 128,152 Internet 212 irinotecan 197 Isis 2922 187 Isis 5320 194 isoprinosine 106 itchy skin 197 itraconazole (Sporanox) 80,96,161 IVIG 148,153,154,168 Kaposi's sarcoma (KS) 174,184,185,188,195,196,197,208,213 Kaposi's Sarcoma report 204 ketotifen 158 L- carnitine 183 L524 184,191,194,201 L735,524 (see L524) lamivudine (see3TC) latent HIV infection 206 Legal Rights...HIV+ HCW's 192 letrazuril 133 life insurance 193 liposomal doxorubicin 184 lipsomal daunorubicin 168 living benefits 193 lobbying,Washington,D.C. 197 long-term survival 175,178 LTR inhibitors 174,190,192,195,196 lymph nodes 172,182,206 MAI/MAC 149,152,158,188 marijuana 131,133,139,141,148,156,190,204,206 Marinol 131,133,141,148 maternal transmission / HIV 194,207,209 MediCal 204 medical research funding 163 Megace (megestrol acetate) 76,77,133,150,183 melittin 181 Mepron 123,133,139,164 microsporidiosis 129,133,139 molluscum contagiosum 133 MSL-109 168 mycoplasma 95,108,124,129 N-of-one trials 153 NAC 88,152,157,184,197 nanoparticles 181 National Library of Medicine 192 National Task Force (drug dev'p) 188,193,196,210 nausea 131,139,141 Neupogen (G-CSF) 122 neurological disorders 171 neuropathy 121,130,156 NeuTrexin 190 nevirapine 170,211 NF-kB (NF-kappa B) 187,188 nutrition 141,152,158,163,181,204,205,208 octreotide (Sandostatin) 58,95,127,141 off-label insurance coverage 192 Office of AIDS Research (OAR) 193 on-line computer systems 154,165,191,212 p24 antibody 100,119,194 p24 antigen 100,119,194 pain medication 154 Paris AIDS Summit 210 passive immunotherapy 148,149,151,158,165,209 Patent Trademark Office (PTO) 210 patents 199,208 pathogenesis 147,156,206 patient / doctor relations 100,111 patient drug assistance programs 186,192,195 PCR 62,144,186 pediatric drugs 210 pentoxifylline (Trental) 133,145,156,158,185 Peptide T 84,119,126,178,201 perinatal transmission 207 pharmacies 64,86 phenytoin 203 photodermatitis 197 physician interviews 171,175,176,179,184,186,189,192,200 PMEA 156 PML 79,88,100,115,129,153,156,201 Pneumocystis carinii (PCP) 129,139,147,180 political funerals 157,160 political organizing 211,213 poppers 160,187 prednisone 150 pregnancy 90,112,153,154,194,207 prescription drug assistance 186,192,195 Primary HIV infection 191 prisons 106,125,126,130,149,151,161 Project Inform 213 prophylaxis/prevention 114,119,123,129,158,161 propolis 37 proposition 187 208 protease inhibitors 190,191,193,194,198,199,201,209,210 psychological health 161 PWA Coalitions 213 recombinant human growth hormone 187,205,209,213 recombinant platelet factor 4 (rPF4) 185,195 reimbursement 192 research policy 190,191,199,200,201,203,205,206,207,208,211 research strategy (see alsoHIV RNA) 190,210 resistance 211 resources,lists 143,144,145,167,170,208 rheumatoid arthritis 193 ribavirin 141 ribozymes 171 rifabutin (Ansamycin) 53,79,109,129,149,158,160 rimantadine 187 RNA (see HIV RNA) Ro 24-7429 (tat inhibitor) 141,142,153,166,196 Ro 31-8959 193 Ryan White Funding 212 Saag,Michael-interview 201 Salk vaccine (HIV) 98,130 Sandostatin (octreotide) 58,95,127,141 saquinavir 201 scabies 98,197 sci.med.aids (computer) 191 SEARCH Alliance 198 Septra (co-trimoxazole,TMP-SMX) 114,123,129,147,152,161 shiitake 19 Sjogren Syndrome 181 skin disorders / HIV 197 Social Security guidelines 144 SP-PG 135,141,195 sparfloxacin 129,132,152 speech 171 SPIRAT grants 207 staphylococcal skin infections 197 steroids 114,115,133,150,166,187 strategy of hope 211 sulfa desensitization (Septra) 161,180 sulfadiazine 79,93,104,108,129,168 sulfolipids (blue-green algae) 87,99 sunlight 58,124,161 surrogate markers 119,144,204,209 survival, long term 178 systemic diseases 197 tat inhibitors 142,153,166,167,174,187,188,193,196,197,210 technology transfer 199 tecogalan (SP-PG) 195 thalidomide 179 THF (thymic humoral factor) 151,168 thymomodulin 202,203 thymopentin (TP5) 123,149,168,202 thymosin alpha 1 194 Title II 210 TNP-470 162,188,195 topotecan 174,178,197 TPN feedings 133,204,208 travel 152 treatment hotlines 196,210 treatment information sources 162 treatment outlook,1994 190 Trental (pentoxifylline) 133,145,156,158,185 trimetrexate and leucovorin 49,52,108,190 tuberculosis 106,161 tumor necrosis factor,antibody 193 turmeric (curcumin) 174,176,177 ultraviolet light 161 United Nations 191 vaccines 130,149,151,152,164,174,185 Vagelos,Roy-interview 198 viatication 173,193 viral load 209,211 vitamin A 134,158,185 vitamin B 134,152,158 vitamin B-12 158,171 vitamin C 111,152,157,158 Vpr ( viral protein ) 212 wasting/weight loss 166,187,205,213 women 111,112,115,118,130,153,154,194,207 yohimbine 158,159,166 Zerit (d4t) 198,200,201,203 zinc 134,158 Zovirax (acyclovir) 108,115,132,133,143,165 ***** 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. 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