Subject: AIDS Treatment News #132 Date: Aug 09 1991 (774 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& Copyright 1991 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS Issue #132, August 9, 1991 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: [items are separated by "*****" for this display] Imuthiol: Confusion Continues Imuthiol Plus Acyclovir: One Physician's Experience ddC Plus AZT: Conversation with Marcus Conant, M. D. MAC: New Drug, Sparfloxacin, Enters Trials Proposed AIDS Definition Change Warning: Hydrogen Peroxide Might Stimulate HIV Growth San Francisco General Named Best AIDS Hospital Announcements: Tat Inhibitor: Trial Seeks Volunteers V International Conference for People with HIV/AIDS, London, September 11-15, 1991 Hemophilia: Annual Meeting of National Foundation, Tampa, October 1991 Lyme Disease: Treatment Newsletter Published, Buyers' Club Forming In Memoriam: Tom O'Connor ***** Imuthiol: Confusion Continues by John S. James As our last issue went to press, we learned that Imuthiol (also called diethyldithiocarbamate, ditiocarb, or DTC) was being withdrawn by its sponsor, Institut Merieux of Lyon, France, after disappointing results from a preliminary analysis of a large clinical trial in France -- results suggesting that study participants did better on placebo than on the drug. No one knows why this study turned out so differently from the previous large, placebo-controlled trials. The French study assigned 1600 volunteers to receive either Imuthiol or placebo. Most of the 1600 were asymptomatic, but a subset of 120 did have AIDS-related symptoms; the results for this subset were similar to those for the study as a whole. Spokesperson Sandy Kaufman of Connaught Laboratories, Inc., in Swiftwater, Pennsylvania -- a company recently acquired by Merieux and now acting as its representative in the United States -- gave us the following breakdown of disease-progression percentages during the two-year trial: Imuthiol Placebo Progression to ARC 24.7% 19.9% Progression to AIDS 16.5% 10.3% Opportunistic infections 10.7% 7.4% It is hard to interpret these numbers without more information; they do, however, give a sense of proportion about the size of the difference this study found between treatment and placebo groups. These figures are preliminary, and will probably change somewhat when the data is analyzed further. These results contrast with those of all previous placebo- controlled trials of Imuthiol. The largest of these earlier studies gave Imuthiol or placebo for six months to 389 symptomatic HIV-positive volunteers at medical centers in the United States.1 There were about twice as many AIDS-defining opportunistic infections in the placebo group as in those using Imuthiol; however, no survival benefit was seen with the drug. Could Imuthiol be helpful during the first six months of treatment, but then do more harm than good later? Possibly -- but one physician, interviewed below, has seen good two-year results with Imuthiol combined with acyclovir. (The French study did not combine the drugs; for this and other reasons, the results are not directly comparable.) Persons now using Imuthiol face what may be a difficult decision of whether to continue the treatment until more is known -- using Antabuse as a substitute, or possibly generic DTC, if Imuthiol becomes unavailable -- or to stop now. A meeting of Imuthiol researchers has been scheduled for September, but we do not know when a final report (or other new information) will become available. For AIDS researchers and the community as a whole, it will be important to learn more about why major Imuthiol trials have produced such different results. One difference between the studies is that the earlier trials lasted six months, whereas the new one lasted two years. Six-month data from the recent French trial would be easy to tabulate, and it would answer critically important questions. If Imuthiol looked good at six months but bad at two years, there would be serious practical consequences for other drugs which might have a similar mechanism of action, since long-term trials would be required to test them. But if the new data from the French trial already looks bad at six months, then something other than the length of the trial must have caused the difference between the new study and the previous trials. Some physicians and patients who have used Imuthiol believe it is too early to give up on the drug until more is known about why the study results have been contradictory. References 1. Hersh EM, Brewton G, Abrams D, and others. Ditiocarb sodium (diethyldithiocarbamate) therapy in patients with symptomatic HIV infection and AIDS. A randomized, double- blind, placebo- controlled, multicenter study. JAMA, March 27, 1991; volume 265, number 12, pages 1538-1544. ***** Imuthiol Plus Acyclovir: One Physician's Experience by John S. James We spoke with Michael Lange, M. D., of St. Luke's-Roosevelt Hospital Center at Columbia University, who has 15 patients who have used Imuthiol, plus six acyclovir tablets per day, for at least two years; most did not use AZT. These 15 started with T- helper counts between 100 and 275. While the number of patients is small and the results are based on clinical experience and not a controlled trial, Dr. Lange believes that the outcome with these patients is clearly better than would have been expected with other treatments, and that it is important for this information to be known. Dr. Lange's experience with Imuthiol began in 1987, when one of his patients went to France and enrolled in a trial there. Because the protocol called for blood tests every two months and the patient did not want to return to France every time, Dr. Lange agreed to perform the tests according to the study protocol; he also added other blood work, including acid- labile alpha interferon, a research test which indicates poor prognosis when the substance is found in the blood. Subsequently, other patients enrolled in the French study and made the same arrangements to be tested in New York. Dr. Lange does not favor AZT, and the patients who come to him are usually self-selected for not wanting to use it. He does use AZT in two situations, however. If the patient is already taking AZT, Dr. Lange continues it because of the possibility of a rebound effect if antivirals are stopped. Also, if acid-labile interferon is found in the blood, Dr. Lange prescribes AZT because his experience has shown that Imuthiol plus acyclovir by itself is not enough -- and because the acid-labile interferon tends to disappear after AZT treatment. Most of the 15 patients are using few other treatments except for pneumocystis prophylaxis -- preferably Bactrim, or aerosol pentamidine for those who cannot tolerate Bactrim. Results At the June 1991 Seventh International Conference on AIDS in Florence, Dr. Lange presented a poster on predictors (other than T-helper count) of prolonged survival (abstract #W. A. 1224) The published abstract, based on experience with 20 patients, does not mention Imuthiol; its main conclusion is that the presence of acid-labile alpha interferon was correlated with unfavorable prognosis, with death after an average of about 30 months, whereas those with the same T- helper counts who did not have interferon remained essentially asymptomatic during the average of 33 months that they had been followed. After the abstract had been submitted in January, Dr. Lange noticed that eight of the ten patients who remained largely asymptomatic for 18 months were using Imuthiol -- while none of the ten patients who died had used the drug, or at most they had used it for no more than two to three months. This observation was only suggestive, because the patients included were selected subjectively, but it led Dr. Lange to look more closely at those who had been taking Imuthiol for an extended time. The experience with all his Imuthiol patients suggested that those who had not developed acid-labile alpha interferon in the blood when they started treatment with Imuthiol plus acyclovir -- and who did not have this blood marker at the time the second test was run (two months after start of treatment) -- seemed to remain stable, essentially asymptomatic and without major decline in T-helper counts, for the two years or more that they have been observed. All 15 who met these criteria did remain stable. Also, none of them developed high levels of p24 antigen; in the few who had any detectable amount, it was below 50. This small cohort of patients, who started with T-helper counts of 100-275, would not have been expected to have done nearly as well without the Imuthiol and acyclovir. Dr. Lange emphasizes that it takes a long time to see the benefits of Imuthiol, because when it is started at T-helper counts of about 150, the hope is for stabilization rather than dramatic improvement. For this reason he was reluctant to speak publicly about his results until he had two years of data. And because a double-blind study was running in France, he decided to wait for its results, hoping they would confirm his observations. The disappointing preliminary results from that trial -- which first became known last week -- has left the status of Imuthiol confused; no one knows why they are different from Dr. Lange's observations, and different from previous controlled trials of the drug, which showed benefit. Dr. Lange has not seen the protocol of the European trial, and at this time he is unwilling to advise his patients to stop using Imuthiol. He also emphasizes that his regimen included the acyclovir, so it is not directly comparable with the trial, which used Imuthiol alone. Why Add Acyclovir? Dr. Lange added acyclovir to the regimen because of a series of discoveries by clinicians, many of them accidental. First, physicians performing bone-marrow transplants (not AIDS related) had tried high-dose acyclovir as prophylaxis against herpes simplex infections, which can be fatal in these patients. The physicians not only found less herpes, but also, quite unexpectedly, less CMV pneumonitis, a major cause of death in these patients. At least two studies have been published showing successful CMV prophylaxis with acyclovir in non-HIV immunosuppressed patients. Then Craig Metroka, M. D., of St. Luke's-Roosevelt Hospital, tried high-dose acyclovir (4 tablets five times a day) for prevention of CMV, in patients with a median T-helper count of 64. Only two of the 120 who received the treatment developed invasive CMV, whereas five of the 14 who refused treatment did. None of the treated patients developed herpes simplex or herpes zoster, and hairy leukoplakia cleared in all 16 who presented with it. Of five whose doses were reduced by half, three developed invasive CMV. This result was published with the abstracts of the Sixth International Conference on AIDS, San Francisco, June 1990 (abstract #2111). Dr. Lange heard of Dr. Metroka's work long before publication and started his patients on acyclovir in May 1989. His patients were at less risk of CMV, however, and he was reluctant to put them on so high a high dose indefinitely, so he selected a smaller dose. Other information which contributed to the rationale for using acyclovir included laboratory findings suggesting that herpetic viruses might stimulate growth of HIV. ***** ddC Plus AZT: Conversation with Marcus Conant, M. D. by John S. James In November 1990 both Project Inform and AIDS TREATMENT NEWS reported that remarkably good results had been found in a Federally-supported clinical trial of combination treatment with two antiretrovirals, ddC and AZT. The study, ACTG 106, was conducted in Miami, by principal investigators Margaret Fischl, M. D., and Douglas Richman, M. D. ; see AIDS TREATMENT NEWS #115, November 23, 1990. [Note: Do not confuse ddC with DTC.] The same results were officially released in June 1991 at the time of the Seventh International Conference on AIDS in Florence, Italy. There has been much behind-the-scenes controversy about this trial. It has been criticized for having too few volunteers, or for having no suitable control group. Also, volunteers were not randomized into the different groups, and critics say that therefore the trial could only give dosage and safety information, and no efficacy conclusions should be drawn. Our own view is that these criticisms are only technical, in that they do not affect the main result of the study. The bottom line is that in the relevant treatment groups, T-helper counts increased by well over 100, even though they started with a median of 70 before treatment; a year later, T-helper counts were still above baseline; and there were no opportunistic infections after the first few weeks (before the treatment had time to take effect) of the year-long study. No other available treatment can produce such good results, and no criticism of the study has even begun to explain them away. The ACTG 106 results became widely known in the medical community well before its formal release in Florence, and by that time, thousands of people were using the combination treatment, usually obtaining "underground" ddC from buyers' clubs. (Thousands more were using ddC through an expanded access program of Hoffmann-La Roche Inc., but the rules of this program do not allow combining the drug with AZT.) One limitation of ACTG 106 -- that its volunteers had never been on antiretroviral therapy before -- is a practical concern. The reason is that most people try standard therapy (AZT) first, before trying the experimental combination. Therefore, when they start using the combination, they are adding ddC to ongoing treatment with AZT -- a usage which ACTG 106 did not test. Since there is no data yet from clinical trials on this use of the ddC plus AZT combination, we asked Marcus Conant, M. D., a San Francisco physician who has one of the largest AIDS practices in the United States and who has many patients who are combining ddC and AZT, for his impressions of how well the combination is working. JJ: With ACTG 106, we have good results for people who have not been treated with antiretrovirals before. From your experience, what can you say about how well ddC is working when added to AZT? MC: Based on what we're seeing clinically, the patients clearly tolerate the combination. And based on what we see in the clinic, there's every reason to expect that the controlled studies will show that the combination is efficacious. But we need to keep the clinical experience in perspective. Many patients are combining the drugs because of their perception that AZT is not working. Then you need to ask why they believe it is not working. Typically they say that they have been on AZT for a year and a half and are seeing their T- helper cells drop. But we know that with AZT, T-helper cells often continue to decline, even though the patient is being helped, in decreased symptoms and slower progression of disease. It's important to realize that AZT may continue to work even in the face of a drop in T-helper counts. A Harvard statistical group analyzed extensive data on T-helper counts and disease progression, and concluded that only about a third to a half of the benefit of AZT was mediated through T- helper increases. The rest of the clinical benefit of AZT was there, but was not shown by T-helper improvement. While I believe it is appropriate to combine ddC and AZT, it is also important for patients to understand that AZT may still be playing an important role in their wellness, regardless of the fact that T-helper counts fall. Even with a combination of the two, there may still be a T-helper drop, and we should not conclude too rapidly that the treatment is not working. JJ: What could you say about the dose? MC: Patients sometimes think that if they are combining two drugs, they can reduce the dose of both. But at least so far, that does not appear to be a wise decision. AZT and ddC have different toxicities, so you may be able to take the full dose of both -- 500 to 600 mg per day of AZT, plus 0.75 mg of ddC three times a day, without the side effects being that much greater than with one of the drugs alone -- and obtain the combined benefit of both these antivirals. Clearly a combination study will have to be done to confirm that what we have seen is in fact happening and is not enthusiasm. We've all seen time and again that people have taken even highly toxic drugs that in retrospect had no efficacy, yet they felt better, their energy levels were better, and they were reporting a lessening of symptoms. There's a tremendous placebo effect, and the controlled studies need to be done. We all need to realize that these controlled studies are getting more and more difficult to run -- because as these drugs become available, often through the underground, patients are not always candid about whether they are following the protocol or not. Then when the data is analyzed, serious mistakes may be made. JJ: Why couldn't the trials be run differently, so that volunteers would be encouraged to follow the protocol, but would not be kicked out if they told the researchers that they were not following it? That would encourage more honesty. You're not likely to have most of the volunteers taking underground drugs; if such use is reported, the study is much better off than if it's not. MC: That's exactly right. Incidentally, we just did that with the TP5 study that we are running. All the patients are on AZT, and half are also on TP5 while the other half are on placebo. After Florence (the Seventh International Conference on AIDS in June) I called the company and told them that if we don't note down the ones that are also taking ddC we will not have accurate data, and if we throw them out, no one will tell us. After two weeks we got permission to not throw people out and just note who is taking ddC. Suddenly about ten percent of the patients in the study said they had been taking ddC. While we have two drugs that work in the same way (inhibiting reverse transcriptase) which fortunately do not have the additive toxicities, what we really need are drugs that work by different mechanisms, different places in the viral life cycle -- for example, blocking reverse transcriptase and also blocking glycosylation, stopping with the virus when it leaves the cell. That combination might have even greater efficacy. ***** MAC: New Drug, Sparfloxacin, Enters Trials by Denny Smith A new member of the quinolone family of antibiotics is about to be tested against Mycobacterium avium complex (MAC, also called MAI) at twelve clinical trial sites around the U. S. The new possibility, called sparfloxacin, has been found to be more active against MAC than the older quinolones, including ciprofloxacin, in test-tube studies. Sparfloxacin was developed by Dainippon Pharmaceutical Company in Japan, where it has been tested extensively to treat gynecologic, skin, respiratory, and urinary tract infections. We spoke to a principal investigator of the MAC study, Lowell Young, M. D., of the Kuzell Institute in San Francisco, which will coordinate the laboratory results of all the various trial sites. Dr. Young told us that this study is designed to determine the safety of the drug, although he is eager to watch for suggestions of effectiveness. The major side effects connected to sparfloxacin are skin sensitivity to sunlight or ultraviolet light, which was reported in French and Japanese patients on the drug, and digestive system problems in some Japanese patients. As of press time, only five of the study's sites were ready to enroll participants: * Denver, Colorado -- 303/893-7051 * Irvine, California -- 714/753-0670 * Orange, California -- 714/856-5454 * Portland, Oregon -- 503/494-7735 * San Francisco -- 415/561-1734. We hope to publish the locations of the other sites for the sparfloxacin trial when they are ready to start; persons who miss this information and are interested in knowing the entry criteria and location of the other sites may call the U. S. commercial developer, Parke-Davis, in Ann Arbor, MI, at 800/521-3084, extension 7297. MAC has been considered an unlikely infection to respond well to monotherapy (treatment with a single agent), and a number of antibiotics have been tried against MAC in various combinations and with various responses. In this trial participants will be given four weeks of sparfloxacin alone, and then four weeks in combination with ethambutol. The protocol for the study mentions that in test-tube studies this combination was synergistically active against nine of ten different strains of MAC, and the addition of rifampin to the ethambutol and sparfloxacin provided activity against all ten strains. The last significant development in MAC research involved two promising new macrolide antibiotics -- clarithromycin and azithromycin (see AIDS TREATMENT NEWS #113, October 19, 1990). We asked about the potential value of combining sparfloxacin with one of these, and were told that in mouse studies, a combination of azithromycin and sparfloxacin obtained positive preliminary results -- but not as convincing, in the doses tested, as a combination of azithromycin, clofazimine, and amikacin. These last two drugs are already widely used to treat MAC in humans. Amikacin, however, is not recommended for extended maintenance therapy, which of course is necessary with AIDS-related MAC. So better combinations are still needed. When safe doses of sparfloxacin are established, the next logical step would be human studies combining the drug with one of the macrolides or other MAC drugs. Meanwhile, azithromycin is just now successfully completing its own safety trials as a single agent against MAC, and the manufacturer, Pfizer, is scheduled to begin efficacy studies soon. Outside of clinical trials, Pfizer has made the drug available to treat toxoplasmosis through a compassionate use program. Interested physicians may call 203/441-5701. Similarly, for treating MAC, clarithromycin is available now from Abbott Laboratories through an open trial program (see AIDS TREATMENT NEWS #129). Interested physicians or patients may call 800/688- 9118. Clarithromycin is also available through buyers' clubs in New York (212/532-0280) and Los Angeles (213/748-1295). We have not heard of buyers' club access for sparfloxacin or azithromycin. ***** Proposed AIDS Definition Change by Laura Thomas The Centers for Disease Control (CDC) is proposing to revise the surveillance definition of AIDS in adults and adolescents to include anyone who is HIV positive and has 200 or fewer T- helper cells (also known as CD4 cells). This will increase the number of people with HIV who are eligible for free health care and other benefits. The change comes in response to great pressure on the CDC from all sides, ranging from ACT UP to the American Medical Association. However, the activists who organized the campaign to change the definition of AIDS feel that this revision does not address their primary concerns, and that more pressure is still needed to make the definition reflect the reality of the epidemic. The CDC has said that barring any unforeseen circumstances, the new definition would go into effect January 1, 1992. The definition was last revised in 1987. The proposed definition will have a huge impact on the face of AIDS in the U. S. Obviously, changing the definition is not going to make anyone sicker or healthier, but it will greatly increase the numbers of people with an official AIDS diagnosis. On the positive side, more people will be able to qualify for disability, housing, medical care, and other benefits that can depend on an AIDS diagnosis, and more people may seek medical care. We have heard several reactions from people who would be affected by the proposed revision. One woman with HIV wondered aloud just how sick she would have to get to have her T-cells hit 200 so that she could receive the benefits that depend on an AIDS diagnosis. On the other hand, for some people the emotional impact of waking up on January 1 with a diagnosis they had successfully avoided for years will be rough. Activists who have been pushing the CDC for over two years to revise the AIDS definition are disappointed by the proposed change. The definition as it stands now does not include any of the AIDS-related opportunistic infections that are specific to women, such as vaginal candidiasis, cervical cancer, and chronic pelvic inflammatory disease, nor a host of other disabling HIV- related conditions that are common in injection drug users (IDUs) and people of color, including women. Because the definition of AIDS has reflected the historical experience in gay men, many women have died of AIDS without ever having an official diagnosis, sometimes without being eligible for the benefits they need. The proposed change would help some of these people, but it does not address other issues raised by activists, nor would it require the CDC to acknowledge that AIDS is different for women or to keep statistics on the opportunistic infections that are specific to women and IDUs. Another problem is the uncertainty of T-cell tests. They are not designed as screening tests, and so are not as carefully calibrated as the HIV antibody test, for example. T-cell counts on the same person can vary from lab to lab, not to mention from hour to hour. While it does give a general indication of the status of one's immune system, it may be problematic as an AIDS- defining indicator. We also know very little about how T-cell counts are related to progression of disease in women. Judith Cohen of Project AWARE in San Francisco said that there is a suspicion that T-cell counts vary more widely in women, possibly due to menstrual cycle fluctuations, but that no one knows what "normal" T-cells are like in women. Many women will qualify under this definition, but it could turn out that women will still be dying without an official diagnosis. Dr. George Lemp in the San Francisco AIDS Office estimated that the numbers of living people with AIDS in San Francisco could more than double under this revision. Some areas of the country will see an even greater increase. Federal funding that is dependent on AIDS case loads, such as the Ryan White/CARE bill, will have to be reallocated, and unless federal funds are boosted, dollars will have to be spread over a larger area, resulting in service cuts that could leave cities unable to keep up with the increased demand. The change will certainly help many people, but it will do little to address the underlying problems that led to the call for a revised definition. ***** Warning: Hydrogen Peroxide Might Stimulate HIV Growth by John S. James Researchers at Stanford University have told AIDS TREATMENT NEWS that hydrogen peroxide has been found to stimulate growth of HIV in laboratory tests. Apparently it does this by affecting the complex systems of chemical messengers which control cell (and viral) growth. A second laboratory has confirmed much of the initial findings. About three years ago there was considerable "underground" interest, in San Francisco at least, in hydrogen peroxide as an AIDS treatment; people would drink a dilute solution, or bathe in it. AIDS TREATMENT NEWS did not cover this proposed treatment, except for brief mentions in issues #49 and #69. Almost everyone we found who was interested in hydrogen peroxide was selling various preparations of it, and therefore we could not tell how much of the enthusiasm expressed came from personal experience and how much came from financial interest. The new laboratory information about potential dangers has not yet been published. Also, there is no data on whether hydrogen peroxide has the same effects in the body. Despite the incomplete information, we decided to publish this warning as soon as possible so that anyone drinking hydrogen peroxide as an AIDS or HIV treatment could be advised to stop. ***** San Francisco General Named Best AIDS Hospital by John S. James In a survey of leading physicians in 15 different specialities, published in the August 5 issue of U. S. News and World Report, AIDS specialists listed San Francisco General as the best hospital in the nation for AIDS treatment, giving it more than twice as many mentions as the next leading contender. Other hospitals listed as among the best for AIDS were University of California San Francisco Medical Center, Johns Hopkins Hospital, UCLA Medical Center, Massachusetts General Hospital, Memorial Sloan-Kettering Cancer Center, and New York Hospital- Cornell Medical Center. The article quoted Paul Volberding, M. D., head of the AIDS program at San Francisco General, as saying that "We're happy to see patients from outside the area to review their records. We usually find the care they're getting is very good." Patients interested in such a review would need to obtain their records from their current physician(s), and make an appointment at San Francisco General Hospital by calling the AIDS clinic at 415/476-0828. Comment San Francisco General has been a leader in AIDS care and AIDS policy since the beginning of the epidemic, and its top rating is well deserved. But patients should realize that because of its status as a public institution, San Francisco General must use mainstream treatments, plus any experimental treatments it is testing. It is not free to send patients to buyers' clubs or other "alternative" treatment sources, and therefore is not likely to consider these options even when leading private-practice physicians might do so. ***** Announcements ** Tat Inhibitor: Trial Seeks Volunteers The only human trial of an important new class of anti-HIV drugs has begun and is now recruiting volunteers at Johns Hopkins University in Baltimore. This study, designed primarily to establish safe and potentially effective oral dose levels, will require a single eleven-day stay in the hospital; there are no followup visits. Volunteers will be paid for participation. Volunteers must be 18 or older and have mild HIV-related symptoms. The study is sponsored by Hoffmann-La Roche, and conducted by the Division of Clinical Pharmacology at Johns Hopkins. For background information on the drug, called RO 24-7429, see AIDS TREATMENT NEWS #127 (May 17, 1991) and #128 (June 7, 1991). For more information about entering this trial, call Lynda Nerhood at 301/955-7703, or Lional Lewis, M. D., at 301/955- 3100. ** V International Conference for People with HIV/AIDS, London, September 11-15, 1991 The Fifth International Conference for People with HIV/AIDS will focus on human-rights skills and workshops. It will be held at the Royal College of Art in London, September 11-15, 1991. The official languages of the conference will be English, French, and Spanish. The program aims to emphasize social interaction rather than formal talks. A major focus will be "the empowerment of the individual living with HIV/AIDS and the finding of solutions to the violation of our rights as people living with HIV/AIDS. " "The programme of the conference is designed to help participants to gain a clear understanding of the issues of human rights. We will be able to discuss violations in a confidential and safe setting which will enable us to develop skills in dealing with problems as individuals in our society, and using existing networks toward solving those problems. This will happen within planned workshops, multimedia sessions, and informal discussions. "We would appreciate it if you or your organization would be able to put in writing any detailed information concerning human rights of individuals living with HIV/AIDS in your own country; this will help us in planning the workshops." For more information, you can contact Don DeGagne at the Vancouver Persons with AIDS Society, 604/683-3381, or 604/683- 3367 (fax). Or you can contact the Conference directly in London, phone 44-071-792-0936, or 44-071-229-1258 (fax). ** Hemophilia: Annual Meeting of National Foundation, Tampa, October 1991 The 43rd Annual Meeting of the National Hemophilia Foundation will be held October 8 through 12 in Tampa, Florida, at the Hyatt Regency Hotel. Workshops at the conference will cover a broad range of issues which concern the hemophilia community, including coping with HIV and AIDS, parenting children with HIV, and new developments in HIV therapies and access to them. For information about registration and hotel accommodations, interested persons may call the Foundation at 202/628-1274. Registration discounts are available before September 9. ** Lyme Disease: Treatment Newsletter Published, Buyers' Club Forming People coping with infections of Borrelia burgdorferi (Lyme disease or borreliosis), particularly people who also have HIV, will be interested in a monthly newsletter from New York which reports on the diagnosis and treatment of Lyme disease. The newsletter is edited by Richard Lynch, who told us that many people with HIV, or chronic fatigue syndrome, could be experiencing undiagnosed Lyme symptoms, and vice versa. Unfortunately, the blood test for Lyme antibodies produces a high rate of false negatives. But if infection is found, it is treatable with antibiotics. Richard has also helped organize a buyers' club in New York to help people with Lyme disease obtain experimental treatments from abroad. For information about the newsletter or the buyers' club, interested persons should call 718/273- 3740, or write to Lyme Treatment News, 17 Monroe Ave., Staten Island, NY, 10301. Subscriptions are $25 per year for health care providers, $15 for others. ** In Memoriam: Tom O'Connor Tom O'Connor, a founder of the buyers' club movement and principal author of one of the early, and best, books on AIDS treatments, died of pulmonary Kaposi's sarcoma on July 27. He was 44. When Tom, with co-author Ahmed Gonzalez-Nunez, published Living with AIDS: Reaching Out in 1987, he had had AIDS- related symptoms for seven years and been seriously ill in 1982 and 1983. For his own health, Tom began researching holistic and conventional treatments; he focused on nutritional approaches, partly because these were more accessible than other treatments. This research, systematically collected in well-organized files, became the basis of Living with AIDS. Although the book was published privately (Corwin Publications was named for the street where Tom lived), thousands of copies were sold. While most of the specific information has now been superceded, Living with AIDS provided a model of good judgment in how to go about making treatment decisions. Tom approached the task with few preconceptions, meticulously collected treatment information, and used it to make treatment decisions for himself. Tom was one of the founders of Healing Alternatives Buyers' Club (now Healing Alternatives Foundation) in San Francisco. This group came together primarily to obtain generic AL-721, the "alternative" treatment of most interest at that time. It also began carrying standard vitamins, etc., often at prices 40 percent below those prevailing elsewhere at that time. The nonprofit structure, with a board made up primarily of persons with AIDS or HIV, gave the AIDS community a practical and trusted presence in the business world -- an alternative to other retail outlets which were seldom AIDS-knowledgeable and seldom in business for community service. Despite worsening health, Tom traveled widely during the last several years, and gave public talks in many cities on AIDS treatment options. [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display