Subject: ATN Survey; PWA; ACT NOW; Buyers Clubs Lists Date: Nov 18 1988 (464 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1988 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS issue # 69, November 18, 1988 CONTENTS: [***** appears here at each new item] AIDS Treatment News Treatment Survey: Preliminary Report San Francisco: AIDS Foundation Newsletter On 14 Antivirals San Francisco: Changes at Sentinel Newspaper Washington DC: New HIV-Positive Organization; Acupuncture Talk PWA Coalitions, ACT NOW Chapters, and Buyers Clubs Lists ***** AIDS Treatment News Survey: Preliminary Report by John S. James Last August, AIDS Treatment News sent a survey questionnaire to its subscribers, asking for their overall evaluation of any treatments they had used for AIDS, HIV, or any related condition. We asked subscribers to name up to three treatments that had worked best for them or for others they knew personally. We also asked them to name the three worst treatments from their experi- ence -- meaning those which were either didn't work or seemed harmful. The survey included several questions, and left space for open-ended explanations. Of the 5725 questionnaires sent, 391 were returned by the deadline (October 1, later extended to October 10). This prelim- inary article reports the number of times each treatment was listed as one of the three best, vs. one of the three worst, in all 391 questionnaires. Many of the results were as expected, but others were surprising. Some unorthodox and conventional treatments alike did worse than we had expected. Some of the tabulations below could be misleading; the obvi- ous interpretation may not reflect what is really (continued below) Table: All treatments named more than once in the survey. Best Worst Acidophilus 4 1 Acupressure 2 0 Acupuncture 21 0 Acyclovir 114 10 AL 721 85 46 Aloe vera 8 7 Amitriptyline 1 1 Amphotericin B 3 5 Ampligen 2 4 Antabuse 8 16 Antibiotics 0 5 Aspirin 2 1 Attitudinal healing 3 0 AZT 204 87 Bactrim (Septra) 19 46 BHT 2 4 Chanting 2 0 Chemotherapy 8 4 Chiropractic 2 1 Coenzyme Q 8 4 Cortisone 0 2 D-penicillamine 1 2 Dapsone 5 9 ddC 2 1 De Veras beverage 3 1 Dextran sulfate 61 15 DHEA 2 1 DHPG 13 0 Diet 40 3 DNCB 3 9 Doctor 2 5 Doxycycline 2 0 DTC 8 6 Echinacea 2 3 Erythromycin 0 2 Exercise 13 0 Fansidar 5 16 Fluconazole 3 0 Folic acid 2 1 Fusidic acid 0 2 Garlic 8 1 German enzymes 1 0 Germanium 6 2 Gamma globulin 2 1 Ginseng 2 1 Group 2 0 Herbs 22 6 Homeopathic 5 1 Hospitalization 0 2 HPA 23 0 3 Hydrocortisone 0 2 Hydrogen peroxide 6 6 Interferon alpha 4 7 Interferon beta 1 1 Iscador 2 0 Isoprinosine 5 5 Leucovorin 2 0 Lecithin 2 0 Love 3 0 Massage 2 0 Meditation 7 0 Minerals 3 0 Monolaurin 4 4 Mycelex 10 8 Naltrexone 13 6 Nizoral 11 6 Nystatin 5 6 Ozone 2 1 Pau d'arco 2 1 Penicillin 2 4 Pentamidine (?) 12 2 Pentamidine aerosol 105 1 Pentamidine iv 4 11 Positive attitude 11 0 Prayer 2 0 Prednisone 3 1 Propolis 1 3 Protein powder 2 0 Psychotherapy 5 0 Radiation 6 5 Relaxation 4 0 Rest 4 0 Revici method 2 2 Ribavirin 6 18 Salk polio vaccine 4 3 Selenium 3 0 Shiitake mushrooms 1 3 Sleep 3 0 Spiritual 25 3 Steps program 2 0 Steroids 0 3 Stress reduction 19 1 Sulfa drugs 0 2 Supplements 2 0 Thymus 2 0 Transfer factor 8 3 Trimethoprim 2 4 Trimetrexate 1 1 Typhoid vaccine 2 1 Visualization 16 0 Vitamins 47 12 Work 2 1 Zantac 2 0 Zinc 4 1 TOTALS 1117 489 happening. We will explain some of these potential errors, to warn the reader about the limitations of this survey. It can indicate which treatments seem to be working for people, but must not be taken as gospel. How We Conducted the Survey We had intended to enter all the information from the returned questionnaires into a computer database, then select various groups of survey respondents (such as those who did well with one particular treatment but poorly with another), and com- pare these different groups. But many people gave us several pages of comments, or medical information such as lab reports. Often the information they provided was so diverse that there was no straightforward way to process it by computer. So we compu- terized only the best and worst treatments, miscellaneous ques- tions like medical degree if any and ZIP code, and brief com- ments. We arranged the forms for easy access by sequence number, so that we can select interesting groups by computer, then col- lect and examine the corresponding physical questionnaires, in the hope of finding insights into why certain treatments do or do not work for certain people. Only the 'best' and 'worst' tabulations are available for this preliminary article, however. Treatment Categories and Names The following decisions affected the results reported below: * Treatment combinations. We asked respondents to list com- binations as if they were single treatments. For example, an AZT/acyclovir combination should be listed as one of the best (or worst) treatments, not as two different treatments. But often there was no clear dividing line between what was and what was not considered a combination. For example, AZT and aerosol pentamidine might be listed together by one respondent, even though they have separate purposes, and listed separately by others. Another problem is that there are so many different possible combinations of drugs that it is difficult to categorize them meaningfully. Because of this confusion around treatment combinations, we decided to break combinations apart, and count each drug or treatment individually in the tabulations below -- noting the important combinations here in the text. Fortunately for the analysis of this survey, only two combi- nation occurred often enough to greatly affect the results: * AZT and acyclovir was listed 28 times as one of the best treatments, and only twice as one of the worst. * Persons using food supplements often listed the entire treatment regimen as a combination. We could not analyze this information for this preliminary article, so usually we grouped them as 'vitamins' or 'herbs' in the tabulation. * Combining related treatments in the tabulations. For this preliminary report, we grouped all 'herbs' together, also all 'vitamins', and all 'spiritual' approaches. Later we will try to report more detail, but this information is difficult to categor- ize, as each person's combination is often unique. We did notice that astragalus was named in 6 of the 22 vita- min group, vitamin C appeared 15 times in 'best' and 5 in survey forms for more detail. Other herbs and vitamins were much less prominent in the computerized information we have examined, and we could not get meaningful numbers, at least without scrutiniz- ing the survey forms. * Aloe vera (8 'best', 7 'worst'); * Ampligen (2 'best', 4 'worst'; the clinical trial also showed lack of result); * Antabuse (8 'best', 16 'worst', probably reflecting side effects); * BHT (2 'best', 4 'worst', too few responses to give a reliable picture, although these numbers suggest that the treatment is not widely used); * DNCB (3 'best', 9 'worst', probably due to side effects, but showing disappointingly few reports of good results); * Hydrogen peroxide (6 'best', 6 'worst', hardly the much- touted miracle cure); * Propolis (1 'best', 3 'worst', too few to tell anything for sure, but much worse than from the anecdotal reports we had heard); * Ribavirin (6 'best', 18 'worst'); * Shiitake mushrooms (1 'best', 3 'worst'; this result may change when we analyze the herbs more completely). Other treatments which look good or at least passable in this survey, in addition to the attitudinal and spiritual approaches mentioned above, include: * Diet (40 'best', 3 'worst'; clearly a major success); * Exercise (13 'best', zero 'worst'; * Stress reduction (19 'best', 1 'worst'); * Garlic (8 'best', 1 'worst') * Coenzyme Q (8 'best', 4 'worst', probably reflecting the fact that it only helps those who have a deficiency); * Germanium (6 'best', 2 'worst', although this result should be taken cautiously, because the drug can make people feel speedy and might improve its 'best' rating for that reason alone); * Homeopathic treatments (5 'best', 1 'worst'); * Naltrexone (13 'best', 6 'worst', and low-cost and harmless); * Rest and relaxation (each 4 'best', zero 'worst'); * Transfer factor (8 'best', 3 'worst', but expensive, given by injection, and not widely available); * Zinc (4 'best', 1 'worst'); and * Selenium (3 'best', 0 'worst', but beware of overdose). Herbs and vitamins also look good. But as mentioned above, this preliminary report did not count them completely. ***** San Francisco: AIDS Foundation Newsletter on 14 Antivirals Last week the San Francisco AIDS Foundation published issue #2 of BETA (Bulletin of Experimental Treatments for AIDS). This issue reviews 14 different antivirals, and also includes an update on AZT, the focus of the first issue of BETA (#1). BETA is exceptional because it combines openness to treat- ment options, extensive and careful research and references, and a presentation easy for non-medical people to understand. The antivirals covered in issue # 2 are: AZT, Dextran sul- fate, Iscador, AL 721, Ribavirin, Carrisyn, BHT, and (available only to people in clinical trials) CD4, CD4-pseudomonas exo- toxin, Foscarnet, ddC, Alpha interferon, Beta interferon, and Gamma interferon. The San Francisco AIDS Foundation distributes BETA free within San Francisco. It will also send free copies (of issue #2 only) to persons elsewhere; later, it plans to accept subscrip- tions, free from within San Francisco and paid from elsewhere. To get a free copy of BETA #2, call the San Francisco AIDS Foundation switchboard at 415/863-AIDS. In Northern California outside of San Francisco, you can also call toll-free, 800/FOR- AIDS. ***** San Francisco: Changes at Sentinel Newspaper For over two and a half years part of the material published in AIDS Treatment News has also appeared biweekly in the San Francisco Sentinel, a gay newspaper distributed free in San Fran- cisco. Last week a dispute between members of the staff and the newspaper's new owner resulted in the resignation of the entire editorial and production departments, nine persons in all, including the people we had worked with at the paper. This week's Sentinel, in which the survey results published here would ordinarily have appeared, was not published. The Sentinel situation does not affect AIDS Treatment News, which is independent. We do want to continue to appear in a newspaper in San Francisco. We are exploring all the options. ***** Washington DC: New HIV-Positive Organization; Acupuncture Talk A new HIV-positive organization called Options +, sponsored by Lifelink and the Whitman Walker Clinic, has organized a talk by Dr. Wu and associates from the Green Cross Acupuncture Clinic. The talk will be at St. John's Lafayette Square Church, 15th and H St. NW, Washington, D. C., 7: 30 PM on December 15. For more information about Options +, call 301/229-0882. ***** PWA Coalitions, ACT NOW chapters, and Buyers Clubs, Listed by State As our subscribers know, AIDS Treatment News reports biweekly on new promising treatments and related public policy developments. While we don't have the funding to operate a hot- line, we do get many phone and mail queries from people around the country asking for help finding appropriate treatment resources and social support in their communities. In response, we have compiled the following list of PWA (people with ARC/AIDS/HIV) coalitions, alternative treatment buyer's clubs, and local chapters of ACT NOW, a national organi- zation advocating non-violent direct action in the interest of PWA's. To improve this listing, we welcome all corrections of out- dated information, or additions of any new PWA coalition, buyer's club or ACT NOW affiliate. Be sure to include a phone number if possible. These lists are not complete, but include only those we could confirm by press time. We have grouped organizations by state or country, distin- guishing each with a letter code. "A" indicates ACT NOW, "B" is a buyer's club, and "C" is for coalitions for PWA's. When visiting or calling a buyer's club, you may want to keep several questions in mind: What is their average price mark-up? Do they have any of their products tested periodically at a reputable lab for purity and contents? Can they fill mail- orders? Who are their board members, if they are non-profit, or their owners or other principals if not? In order to make treatment information as accessible as pos- sible, AIDS Treatment News will extend a free subscription to any PWA coalition or ACT NOW chapter on request. If you have corrections or additions for this list, please call Denny Smith at 415/255-0588. ALABAMA C) Living with AIDS Coalition, Birmingham. 205/252-2255 ARIZONA C) People Living With AIDS, Phoenix. 602/224-5486 C) PWA Coalition, Tucson. 602/792-3775. CALIFORNIA A) ACT UP, Los Angeles. 213/668-2357 A) ACT UP, San Francisco. 415/563 0724 B) Nutritional Products, Los Angeles. 213/855-0533 B) Alliance 7, San Diego. 619/281-5360 B) Healing Alternatives, San Francisco. 415/626-2316 C) PWA Coalition, San Francisco. 415/553-2560 C) Being Alive, West Hollywood. 213/667-3262 COLORADO B) Health Action Project, Denver. 303/894-8650 C) PWA Coalition, Denver. 303/837-8214 DISTRICT OF COLUMBIA A) National Association of People With AIDS, 202/429-2856 B) Carl Vogel Foundation, 202/547-5651 C) LifeLink, 202/833-3070 FLORIDA A) Cure AIDS NOW, Coconut Grove. 305/856-8378 C) PWA Coalition, Jacksonville. 904/396-2562 C) PWA Coalition, Key West. 305/296-5701 GEORGIA C) NAPWA, Atlanta. 404/874-7926 ILLINOIS B) Test Positive Aware, Chicago. 312/728-1943 C) TPA, Chicago. 312/728-1943 MASSACHUSETTS A) Mass ACT OUT, Cambridge. 617/354-7457 MINNESOTA B) The Aliveness Project, Minneapolis. 612/822-7946 C) The Aliveness Project, Minneapolis. 612/822-7946 NEW JERSEY A) ACT-UP, Orange. 201/836-8645 NEW YORK A) ACT-UP, New York. 212/533-8888 B) PWA Health Group, New York. 212/532-0280 C) Niagara Frontier AIDS Alliance, Buffalo. 716/852-6778 C) PWA Coalition, New York. 212/532-0568 OHIO C) PWA Coalition, Dayton. 513/223-2437 OKLAHOMA B) Nutrico, Tulsa. 800/338-5352 OREGON C) Genesis, Portland. 503/234-5611 PENNSYLVANIA B) Buyer's Club, Philadelphia. 215/545-6868 C) We The People, Philadelphia. 215/545-6868 TEXAS B) Buyer's Club, Dallas. 214/526-5068 C) PWA Coalition, Dallas. 214/941-0523 C) PWA Coalition, Houston. 713/522-5428 C) PWA Coalition, San Antonio. 512/821-6218 TENNESSEE C) People Living With AIDS, Nashville. 615/385-1510 UTAH C) PWA Coalition, Salt Lake. 801/359-5038 WASHINGTON C) People Living With AIDS, Seattle. 206/329-3382 ***** CANADA A) AIDS Action Now!, Toronto. 416/591-8489 C) PWA Coalition, Vancouver. 604/683-3381 ENGLAND B) Vanmount, LTD, London. 299-1409 ***** [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display