Date: Sun, 18 Sep 1994 14:02:09 -0700 From: "John S. James" Subject: AIDS TREATMENT NEWS #203 /* Written 3:57 PM Jul 22, 1994 by aidsnews in igc:aidstreatment */ /* ---------- "AIDS TREATMENT NEWS #203" ---------- */ AIDS TREATMENT NEWS Issue #203, July 22, 1994 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS Zerit (d4T) Delayed; Parallel Track Extended Yokohama International Conference: Free Interactive Video Teleconference on Aug. 9 and 11, Ten U.S. Cities HIV and Anal Cancer; Anal Pap Smears, Early Treatment, Recommended for High-Risk Men and Women Phenytoin (Dilantin) as Antiretroviral Treatment -- Negative Report? Thymomodulin Warning Immunology Book Recommended Interview, Kristine Gebbie, Outgoing Policy Coordinator Gebbie and Grassroots: Toward a Mass-Movement Organizing Style ***** Zerit (d4T) Delayed; Parallel Track Extended As reported in the previous issue of AIDS TREATMENT NEWS, the newly approved HIV drug d4T (brand name Zerit),was expected to be on pharmacy shelves in July. Due to production problems, commercial availability has been delayed; pharmacies are now expected to receive Zerit about mid August. Because of this delay, the parallel track program is being extended; new patients who are eligible can still enroll in this program to receive the drug without charge. Physicians can call 800/842-6036 to obtain information about enrolling patients. According to Bristol-Myers Squibb, parallel-track enrollment will remain open until the drug is available through pharmacies. Even after enrollment closes, those in the program will still receive the free drug for another month. Fortunately, new patients for whom Zerit is indicated ("adults with advanced HIV infection who are intolerant of approved therapies with proven clinical benefit or who have experienced significant clinical or immunologic deterioration while receiving these therapies or for whom such therapies are contraindicated") are also likely to be eligible for the parallel track, so their treatment need not be affected by the delay in commercial availability. (Persons eligible for the parallel track must have a T-helper count under 300 and have failed both AZT and ddI, either because they could not tolerate those drugs, or because their condition continued to worsen despite treatment with each of them.) Those who want to use the drug "off label" will probably not be eligible for the parallel-track program, and will need to wait for commercial availability. ***** Yokohama International Conference: Free Interactive Video Teleconference on Aug. 9 & 11, Ten U.S. Cities Those unable to attend the X International Conference on AIDS (in Yokohama, Japan, August 7-12) can hear a summary through a live interactive teleconference on Tuesday, August 9, and Thursday, August 11. Each day includes a one and a half hour community update starting at 6:30 p.m. Eastern Time (5:30 Central Time, 3:30 Pacific Time), a half hour refreshment break, and a one and a half hour medical update which starts two hours later (8:30 p.m. Eastern Time, 7:30 Central, 5:30 Pacific). Persons are encouraged to attend both days, as the Tuesday program will present highlights of the first two days of the International Conference, and the Thursday program will focus on days three and four. The teleconference is scheduled for ten cities: Boston (World Trade Center), Chicago (Chicago Marriott Downtown), Dallas (Fairmont Hotel), Los Angeles (Pacific Design Center), Miami (Hyatt Regency Miami at Riverwalk), New York area (2 locations: Manhattan, the Auditorium at Equitable Center; and Nassau County-Melville, the Huntington Hilton), Philadelphia (Warwick Hotel), San Francisco (Nob Hill Masonic Center), and Washington DC (Omni Shoreham Hotel). Medical faculty includes Marcus Conant, M.D., W. David Hardy, M.D., Harold A. Kessler, M.D., Trudy Larson, M.D., Michael Saag, M.D., and Paul Volberding, M.D. The community faculty includes Moises Agosto and Martin Delaney. Both the community and medical presentations are free and open to everyone involved with AIDS; you do not need to be a medical professional to attend the medical portion. This teleconference is supported by a grant from Burroughs- Wellcome Co. Registration will take place half an hour before each meeting; however, participants are encouraged to register in advance by phone to make sure space is available. Call the Yokohama Conference Coordinator, World Health Communications Inc., 800/433-4584 (in New York State, call 800/521-1177), between 9 a.m. and 5 p.m. Eastern Time; they will ask which city and which meeting (medical or community). We suggest attending both meetings on both dates, if possible. ***** HIV and Anal Cancer: Anal Pap Smears, Early Treatment, Recommended for High-Risk Men & Women by Denny Smith For several years San Francisco researcher Joel Palefsky, M.D., and his staff at the University of California have been monitoring an apparent increase in precancerous changes in anal tissue among persons infected with the human papilloma virus (HPV), the virus that causes genital and anal warts. Dr. Palefsky presented data from his work at each of the last International Conferences on AIDS, in Amsterdam and Berlin, and he recently offered an update at an open forum in San Francisco. His observations, bolstered by several similar studies, are based on the notion that HPV may provoke the growth of abnormal anal cells, called dysplasia. These can then become tumor cells, or neoplasia. Researchers have also suspected that co-infection with HPV and HIV, not an unusual situation, may further increase the risk of dysplasia. When Dr. Palefsky's staff scanned the cancer registry statistics for the city of San Francisco, they found that indeed, the incidence of reported anal cancer was higher in communities where HIV infection was prevalent. Cancer and infectious disease might ordinarily be considered very separate realms of medicine, but there are precedents for a connection. Long-term infection with hepatitis B, for example, has been associated world-wide with cancer of the liver. And Epstein-Barr virus has been connected to the development of certain lymphomas. Even before Dr. Palefsky's study began, HPV was already thought to foster cervical dysplasia in women. The cells of the anus are very similar to the epithelial cells of the cervix. Moreover, the incidence of anal cancer in the general population of Europe and the U.S. has been on the rise, particularly in women, as well as in men who practice receptive intercourse. The combination of HPV and HIV infections is now strongly connected to cellular changes called cervical intraepithelial neoplasia (CIN) in women, and to anal intraepithelial neoplasia (AIN) in both men and women. One of Dr. Palefsky's AIN studies enrolled over 600 men; more than half of them have HIV, with the others participating as an HIV-negative control group. Of those men with HIV, about a third had CD4 counts below 200. True to his hypothesis, Dr. Palefsky has found that 11% of the HIV-positive participants developed AIN at some point in the study, compared to only 2% of the negative controls. Another study tested 114 women who were considered at risk for HPV infection. HPV was found in 77% of anal swab samples from HIV-positive women, compared to 56% of the HIV-negative controls. Anal cell abnormalities were seen in 14% of the women, mostly in those who also had HIV. That is higher than the incidence of cervical dysplasia in women with both HPV and HIV. The goal of these studies is not simply to watch for the development of anal cancer, but to watch for signs of dysplasia that precede it, in order to intervene with treatment. The researchers do this by performing periodic exams already well-known to women as Pap smears. (Many physicians apparently do not realize that Pap smears can be productive diagnostic techniques on anal tissue as well as cervical tissue.) External anal tissue does not usually reveal dysplasia, so the studies used a technique called anoscopy, with a vinegar preparation that highlights any warts, to collect the specimens. The procedure is not painful. The smears can reveal most instances of AIN. When this tissue is viewed under a microscope, the HPV-infected cells have halos and their nuclei are bloated. If a lesion is seen during the anoscopy, a biopsy is taken. The biopsy can cause some discomfort, but that is easily managed with non-prescription analgesics. The dysplasia are graded according to the appearance of the cells: low-grade dysplasia are simply monitored every six months, while higher-grade dysplasia are referred for treatment. AIN is effectively and easily treated on an out- patient basis with cauterization or excision. Unfortunately, most HIV care providers probably do not now include anal Pap smears in their daily practice. The data from studies such as Dr. Palefsky's may change that. He suggests that the following individuals should be screened annually for AIN: all HIV-infected people with CD4 counts below 500, all women with a history of high-grade CIN, and all men with a history of receptive anal intercourse. Many people with these profiles may not even realize they are infected with HPV, so the monitoring should not be limited to those with a known history of anal warts. An excellent review by Dr. Palefsky addressing AIN epidemiology, diagnosis and treatment can be found in the medical journal AIDS, volume 8, number 3, pages 283-295, 1994. ***** Phenytoin (Dilantin) as Antiretroviral Treatment -- Negative Report? by Bruce Mirken [Note: A serious problem in science is that journals do not like to publish "negative results" -- indications that something does not work. As a result, other researchers do not become aware of information they should have. The following report suggests that the prescription drug phenytoin (Dilantin) is not promising as a potential HIV treatment -- despite early findings in laboratory tests. No one knows for sure, however, since no trial has been done. The potential value of discovering a well-known drug which might be useful in HIV disease suggests that the scientific book should not yet be entirely closed. However, given current knowledge, there seems to be no rationale for people trying Dilantin as an HIV treatment.] This spring AIDS TREATMENT NEWS heard reports that phenytoin (sold by Parke-Davis under the trade name Dilantin), an anti- seizure medicine which has been used for many years to treat epilepsy, had shown anti-HIV activity in test tube studies, but that Parke-Davis had shown no interest in developing it as an AIDS treatment. While these reports have proven essentially true, it is not at all clear from existing data how much -- if any -- value phenytoin might have as a treatment for HIV infection. In a study published in 1990 in Virology(1) Hans-Anton Lehr, M.D., Ph.D. and colleagues (building on work begun in 1986 and published in two lesser-known German journals while Lehr was an intern in Hamburg) compared lymphocytes from phenytoin-treated non-epileptic patients with comparable cells from healthy, untreated subjects. They found that the drug affects the fluidity of the plasma membrane of CD4 cells in a way that should reduce the ability of viruses such as HIV to bind to them. Additionally, when lab cell lines were incubated with phenytoin at concentrations equivalent to those reached in anticonvulsive therapy, the drug almost completely blocked HIV from infecting cells. In an interview with AIDS TREATMENT NEWS, Dr. Lehr also described apparent improvement in one AIDS patient he had treated with phenytoin during roughly the same time period as his lab experiments (the patient was treated for approximately two months, then left the area, stopped the treatment and subsequently died). Because phenytoin is a "very well-known and well- characterized drug with a very well-known spectrum of side effects," Lehr says he was anxious to see it tested in clinical trials on HIV/AIDS patients, but little was done. Researchers they approached, he asserts, were more interested in other drugs such as the then-emerging nucleoside analogs. "We approached Parke-Davis several times," he continues, "but the response we got was that they were basically not interested" -- possibly fearing that association with AIDS would hurt their ability to market the drug for approved uses. What little data exists beyond Dr. Lehr's work is less encouraging. A small uncontrolled German study, involving 18 symptomatic HIV patients (and whose dosing and methodology Lehr criticizes), showed little apparent effect from phenytoin therapy.(2) Further test tube work done by Dr. Miles Cloyd and associates at the University of Texas Medical Branch in Galveston, also published in Virology,(3) yielded mixed results. In laboratory cell lines phenytoin both blocked new infection of cells and reduced HIV expression (as measured by p24 antigen levels) in chronically infected cells. Used in combination with low-dose AZT, the drug was more effective than either used alone. But Cloyd's team was unable to get similar results using normal lymphocytes taken from HIV-negative donors (instead of cell lines grown in the laboratory). Here phenytoin showed little or no effect. Further unpublished research, Dr. Cloyd says, produced the same result, with or without AZT. "I did a lot more lymphocyte studies, he told AIDS TREATMENT NEWS, "and saw usually no effect at all and occasionally a very minor, marginal effect." Feeling that the normal lymphocyte studies represented a closer approximation of real-world conditions than the cell-lines, the disappointing results caused Cloyd to lose interest in phenytoin. Lehr argues that the extensive processing required to separate out and culture the lymphocytes used in such research can "induce an enormous artifact in these cells," possibly altering their functioning. He doubts that any test tube study can give us much more useful information, and still would like to see a well-designed clinical trial that might give a clear answer. Parke-Davis spokesperson Sandy Horner says that the company has never done any HIV-related research with phenytoin, but insists the company has not had an aversion to such work. "If we thought there were something there we would definitely be willing to look into it," she says. Comment Unfortunately, this situation seems to tell us more about the scattershot process of examining potential AIDS treatments than it does about whether or not phenytoin has any value against HIV. A definitive study has not been done, and may never occur. That there has been no coherent followup with a drug long in use, which has a well-established safety and toxicity profile, and which showed at least a glimmer of anti-HIV activity, is disconcerting. It might be interesting to undertake a systematic review of HIV patients who have been treated with phenytoin for epilepsy or related disorders. If such a review showed any indication of benefit, a clinical study might then be undertaken. In any case, the case of phenytoin seems to underscore the need for an effective system for quickly moving drugs that show promise in the lab into small, efficient, well-run trials to examine their clinical usefulness. References 1. Lehr HA, and others. Decreased binding of HIV-1 and vasoactive intestinal peptide following plasma membrane fluidization of CD4+ cells by phenytoin. VIROLOGY. 1990; volume 179, pages 609-617. 2. Kern W, and others. Treatment of symptomatic HIV infection with oral diphenylhydantoin. AIDS-FORSCHUNG (AIFO). 1988; volume 6, page 334. 3. Cloyd MW, and others. Inhibition of human immunodeficiency virus (HIV-1) infection by diphenylhydantoin (Dilantin) implicates role of cellular calcium in virus life cycle. VIROLOGY. 1989; volume 173, pages 581-590. ***** Thymomodulin Warning by John S. James As this issue went to press, a reader in Germany called to tell us that the German Ministry of Health had warned people not to use calf thymus or other organ extracts (widely used in Europe in cancer treatment), because of a theoretical risk of contamination with BSE (bovine spongiform encephalopathy, also called "mad cow disease"), which has killed over 100,000 cattle in England. The warning was broadcast in a television report in late June or early July. Thymomodulin, covered in our last issue, is a calf thymus extract. The warning does not apply to synthetic thymic hormones, such as TP-5 or thymosin alpha 1, which are not made from animal thymus glands. BSE has been a major issue in Europe, where there has been much controversy over the safety of eating British beef. The cattle are believed to have acquired the infection through meat from sheep which was used in their feed. That feed has been banned for several years, so it had been assumed that meat and organs from calves were safe. But in February 1994, British agricultural officials confirmed that a calf born in 1989, a year after the feed ban, had the disease, raising safety questions again. Apparently no person is known to have been infected with BSE. But laboratory animals have been infected, and some experts suspect that BSE may be the same as Creutzfeldt-Jakob disease, a rare but fatal condition in humans. A proposed German ban on the import of British beef has led to a diplomatic dispute between the countries. The U.S. public is largely unfamiliar with this issue because the press has mostly ignored it, carrying only about two percent of the number of articles published in the British press. Comment It is hard to judge how serious this risk (if any) may be. The controversy has been around for years, and manufacturers have adopted precautions, such as only using animals from areas free of BSE. Persons considering using thymus extracts should be aware of the warning. ***** Immunology Book Recommended Persons looking for a good introduction to immunology, written for medical students, should consider Immunology, Second Edition, by Janis Kuby, which appeared in medical and technical bookstores last week. We recommend this book for three reasons: * It is well respected in mainstream medicine, with the earlier edition being widely used in medical schools. * The second edition is new, which is important because the field changes rapidly. * This book is well written and considerably easier to understand than other immunology books we have seen. (The reader will need to have some medical background, however.) The AIDS chapter, which is 36 pages, is not especially detailed, and does not cover treatments, except for vaccine development. AIDS treatment changes so fast that textbooks are not a current source of information. The chapter looks at AIDS from the viewpoint of immunology; much of the material in other chapters is also relevant to AIDS. The book's central purpose is to provide a background in immunology -- which will help readers understand technical discussions of AIDS in journal articles, at conferences, etc. Immunology, Second Edition, has 660 pages. It is published by W.H. Freeman and Company, New York. The price is $49.95. ***** Interview, Kristine Gebbie, Outgoing Policy Coordinator [On July 19 AIDS TREATMENT NEWS interviewed National AIDS Policy Coordinator Kristine M. Gebbie, who announced her resignation on July 8, effective August 2. See also our commentary and call for action, below; it was written before we conducted this interview.] ATN: How can our readers participate in the ongoing efforts to improve the national response to the epidemic? Gebbie: It is very important for anyone struggling with this disease, either living with the virus and struggling for their own health, or a family member, or a caregiver, to appreciate that the first thing is to care for yourself, you can't let concern about broader issues detract too much from the appropriate time spent on your own self worth -- such as exercise, or rest, or doctors' appointments. But what is going on at the state level and the national level has a huge impact, and I appreciate the energy that so many people have put into following the process by which we move this epidemic. Stay tuned in to the process, but through more than one source; this is a complex issue, any one source is looking at it through a specific lens, so it is useful to read more than one newsletter, or join more than one organization, so you get a couple of different views. And stay in touch with those organizations, whether through writing letters to the editors of their newsletters, or writing letters to their board of directors. Often a handful of people get to the meetings and are the ones who speak. There are many other people who are interested but whose word does not get heard; corresponding with your organizations is a way to be heard even if you cannot get to meetings. That's particularly true for national groups, based somewhere like Washington D.C., supposedly representing the whole country; they need to hear from individuals living with or worrying about this disease, out around the country, on a regular basis. Last year, as I traveled around the country, many people said they hoped I was not just listening to people in D.C., who may not speak for them. I tried to listen to groups from all over, and present some of that balanced concern in what I did on my job. The organizations often suggest that we write to our members of Congress, and we dutifully sit down and write, and that's very good, because we are keeping our representatives informed; I would not want to detract from that. But we also need to write back to the organization, telling them I did write to Congress on this issue, but here's another issue that I'm concerned about, or, here's a different viewpoint. ATN: How can we improve the Federal response that obviously needs much improvement, when the turf is already spoken for? NIH has its way of doing things, CDC has its way, FDA has its way, etc. Gebbie: They're all being pulled into new ways, and we have to be persistent in that process. I worked previously with Admiral Jim Watkins, who worked on AIDS and then was secretary of energy. He talked as an admiral about how long it takes to turn a battleship around; you don't do it on a dime. You have to look a long way ahead when you're going to want to turn it. We're trying to turn around a whole Federal bureaucracy, and it just won't happen on a dime. I couldn't make it happen, and I doubt my successor will make it happen instantly; but we've planted the seeds for that. The Drug Development Task Force, for example, which just had its second two-day meeting this week, has outlined a number of things that are underway or need to get started. We need to be persistent in supporting them in making those changes. There's a thorough review of prevention and planning across the HHS (U.S. Department of Health and Human Services) on how to support prevention activities better, in conjunction with the community planning for prevention. We've got to follow that process as they go through that change. For your readers, the place to start [for prevention work] is with their state AIDS prevention planning process. Every state has had to name a committee to do prevention planning for that state. San Francisco, Los Angeles, and the other high-epidemic cities also have local planning committees. People need to tune into this process, ask to be on the mailing list of the state planning committee, and be critical; if they think it's not working well, let the CDC know, so that they can work on it. Another area that will benefit if more of your readers become active is around Ryan White. There's an active coalition working across all four titles of that program to work towards reauthorization. Becoming interested in any of the groups lobbying on Ryan White would be very helpful. Supporting the changes across the Federal government means backing the groups that are asking hard questions that are also working on them. For example, through AIDS Action Council and the AIDS Housing Coalition we now have some meetings started with Secretary of Housing and Urban Development Henry Cisneros. It's going to take a while for that to sink down through HUD, but we're starting at the top, where we should start, and are going to push that. So your readers who are particularly interested in housing should be in touch with the AIDS Housing Coalition. [To reach the AIDS Housing Coalition, call Tim Palmer at 617/432-0885, or MaryAlice Mowry at 608/238-6276.] ATN: How should the AIDS coordinator's job be defined? Gebbie: It almost doesn't matter how it is defined, as long as it is defined. I walked into a very undefined job; and by pushing my elbows out and poking around, and giving it a try, we found out where the confusion is and where some of the conflicting expectations are. So for the next person, be clear. For example, many in the advocacy community really expected this job to do a lot more advocacy in Congress than what I ended up doing. If that's an expectation, and if the president agrees with that expectation, then write it down. If the president disagrees with that expectation, then be clear about that, so that the advocacy community isn't saying, "Why aren't you doing it?" It's that kind of clarification that's needed. Other staff officers at the White House also need to know what that expectation is and be prepared to collaborate. That's one of the areas I have talked with Leon Panetta about, as he is moving into his new responsibilities of Chief of Staff. He has an opportunity to redefine some of those things and move it along, and I'm hopeful that he will be an active partner with my successor in making it work. ATN: What do you see as the role of a national plan? Gebbie: I felt when I arrived here that it was more important to start doing things than to sit down and write for a long time. So I operated off of some of the documents that already existed. But many people do need to be able to look somewhere and say, that's what we agreed on, what we're trying to do, let's get on with it. My concern is that we don't spend so much time making it fancy, that it dies under the weight of its own process. My first try (at drafting a national plan) didn't work well, got a lot of criticism; but from that we've learned what some of the soft spots and potentially good approaches are, and I'm leaving a lot of notes for my successor on how to move that along more quickly. ATN: From 2500 miles away from Washington, one thing I see is that the AIDS community has not operated as a mass movement, has not been able to get thousands of letters and phone calls to Congress on AIDS issues, while our opponents have. That may be why Clinton was politically unable to provide the support that your office should have had. How do you see this? Gebbie: The question of the president's support for my office is tied up with expectations, and all the things that demand a president's time, which are hard for some of us to understand when we have just one issue to worry about. But I do agree that the lack of cohesion in the HIV community, and the sometimes lack of coordination on urgent issues, means that a very organized conservative group can almost always get more letters in more quickly than we collectively can. That does have an influence on Congress. I've spent a lot of time answering letters from some very organized folks upset about things I've said, or things that have gone out in the community, and it's very clear that those who do not want to talk about HIV infection, and those that do not want to talk about sexuality in an open way, are prepared to launch instant campaigns at the drop of the hat, and to coordinate with each other across the country very effectively. That does not seem to happen as much from those who support an active approach to this epidemic. ATN: Anything you would like to add? Gebbie: One of the impressive parts of this epidemic has been the number of newsletters and publications such as AIDS TREATMENT NEWS which have tried to get information out to people; that's been a positive force. We do need to learn to check our sources, and make sure that what is disseminated is well documented, so that we add positively to our cumulative knowledge, rather than sending people chasing off after will- o'-the-wisps. That's one of my reasons for the point about trying to subscribe to more than one source, so that you can do your own cross-checking a bit. ***** Gebbie and Grassroots: Toward a Mass-Movement Organizing Style Commentary by John S. James On July 8, National AIDS Policy Coordinator Kristine Gebbie announced her resignation, effective August 2. She has faced growing criticism during the last several months, and influential AIDS organizations have called for her to be replaced. Clearly the major problems in the Federal response to AIDS, the major lost opportunities, are much more fundamental than issues of Gebbie's performance. The White House failed to give her office the support it needed, and this failure reflects deeper problems in the nation as a whole. These problems will not be corrected by Gebbie's departure and replacement. We believe that they can be fixed, however -- and that you, the reader, wherever you are, can start now to fix them. The Clinton shift on AIDS -- from the campaign promise of an "AIDS czar" to the long-delayed reality of an office deliberately made too weak to deal seriously with the problem -- reflects the fact that we in the AIDS movement have not been strong enough to defend ourselves and defend Clinton against pervasive attacks by the right-wing hate industry in this country. The basic reason we have not been strong enough is that the AIDS community has not organized itself as a mass movement, while the hate industry has. For better or for worse, we have entered a world where a mass-movement style may be essential for survival. This article includes a first draft of a checklist to evaluate whether an organization is operating in a way which is consistent with it becoming part of a mass movement. We do not know of any AIDS organization today which does so. An illustration of the basic problem was the major defeat of the AIDS community early in the Clinton administration, when Congress voted to overrule the unanimous recommendation of public-health experts, and bar travelers and potential immigrants with HIV from entering the United States without a waiver. Since applying for the waiver is impractical and possibly hazardous (as doing so might subject one to discrimination in one's own country or in third countries), potential visitors are better off if no one knows their HIV status. By setting a worldwide example of discrimination against people with HIV, Congress created an incentive for everyone in the world not to get tested for the virus, not to deal with the health system to get treatment for themselves and to learn how to avoid spreading the virus to others. (The ostensible motivation of Congress was to save money by excluding HIV-positive immigrants who might use publicly supported health care; the real purpose which drove the issue was to embarrass and damage President Clinton, who had agreed to remove the entry ban.) The next big defeat as a result of not having a mass-movement style was on the issue of excluding gays from the military. While this was not an AIDS issue, it is related, in that the national attitudes which are preventing an effective Federal response to AIDS are often rooted in hatred and discrimination against gays. While polls consistently showed that the public was about evenly divided on this issue, or in favor of nondiscrimination, letters and calls to Congress sometimes ran more than a hundred to one in favor of exclusion. Since Clinton could not win in Congress, he had to evade the issue with an unworkable compromise. What Clinton and the White House staff learned from these experiences is that the AIDS and gay communities would not or could not support them effectively if they took the lead on AIDS or gay issues. Therefore, Clinton had to avoid AIDS and focus on areas where he had more chance of success -- especially the economy, health-care reform, and crime. This is why the National AIDS Policy Coordinator office was crippled from the beginning -- to make sure it could not independently bring AIDS into the forefront of national attention. Therefore it could not address the root of the problem, the national attitudes which have made effective institutional response impossible. The first candidates offered the position rejected it; finally Gebbie accepted, at the height of public cynicism over the gays-in-the-military issue. Only a miracle worker could have succeeded under those circumstances. What Can Be Done? A fundamental problem blocking a serious national response to AIDS is that the AIDS community cannot generate tens of thousands of phone calls, letters, and visits to Congress and other public officials, and thousands of letters to the editors of newspapers, calls to radio talk shows, etc. Therefore, the AIDS community can only advance where those who can generate such volume are not interested. Without a mass movement, AIDS activists tend to succeed only where there is no mass-movement opposition -- on issues such as access to treatments approved abroad, and structural research reform. We do poorly on issues like the travel ban, medical marijuana, condom education programs, and needle exchange. For years there have been projects to organize letterwriting to Congress, etc., on AIDS issues. Usually these efforts have not worked very well. The basic problem, we believe, is that the national leadership on AIDS is not oriented toward mass- movement work -- and even is threatened by it. (This leadership excels, instead, at inside-the-Beltway work -- for which we should all be grateful, although that is not enough by itself.) Since AIDS needs a mass movement and does not have one, and does not currently have leadership with talent in this area, we have been drifting for the last several years. But we can make the essential changes now, without waiting for the right leadership to come along. We can begin by developing a mass- movement style within the work we are doing already -- by practicing ways of operating which are consistent with being a mass movement. Then we can link up with each other and with other movements, building the necessary leadership along the way. We believe that to be eligible to become a mass movement, an organization must: * Combine political work with peoples' social and other needs. Most people will not get involved in purely political activity. Until organizers integrate political communication with other human needs, AIDS politics will remain a movement of activists who can get media attention but are not a major political force. Here is one potential example of what we mean by integrating the political and the social. In San Francisco and some other cities, there is so much need for ways to meet people that small industries are developing around it. But many do not like to go to parties or events set up for mixing with strangers, but would rather start by working together with others who share a commitment. There could be a great response to a political organization which, also, is explicitly and skillfully social. Peoples' social needs vary greatly, so there is no one formula for addressing them. For example, some areas (such as big cities in California) tend to be footloose and singles oriented, while others are largely made up of couples and traditional families. Many different kinds of social/political organizations will be required. One problem with most meetings is that those who attend usually do not meet anybody. They may file into an auditorium and then file out when the program is over; or smaller meetings may be so packed with the formal program that when they finish, people have to hurry and leave. When a meeting needs to be too large for individual contact -- for example, to hear a background briefing by a leading expert -- it could break out into smaller groups based on interest and affinity. In any case, we suspect that a successful mass movement will be based on thousands of small, personal groups which meet regularly, more than on large meetings. * Be easy for new people to find and try out. Ideally, each major national organization should have a number to call to find a local branch in one's area -- or, if there is no local yet, to talk to a regional coordinator who can provide assistance in starting one. There should be no uncertainty or hesitation at all in telling a new person how to get involved. And organizers must make sure that all the advice that goes out to potential new people is workable -- that those who use it are likely to be satisfied with the result, to find what they are looking for. * Make every meeting productive, right from the beginning. A big deterrent to new people getting involved in political action is that they have to sit through boring, pointless meetings, where infighting is processed and egos displayed, in order to make contact with the organization. (The alternative is to start by sending a check to Washington or New York and becoming a member-by-mail -- another style which works OK for some, but does not have majority appeal.) Instead, the organizers should be prepared so that people can work together to write letters and practice making phone calls, or make the actual calls, right in the meeting itself, from someone's home or office. Organizers or invited speakers can give a short background talk about an issue when necessary. Business meetings should usually be separate. Only a minority will motivate themselves to write letters alone. Most will feel that they are not informed enough, if they have only read a mailed fundraising appeal or action alert. Working with other people gives a sense of the reality of the issue, in a way that written material does not. Organizers should remember that the hardest part is getting people to write the first letter or make the first call; then, sending two, five, ten, even 20 or more short, personal, but largely identical letters or calls to other appropriate officials is not much more difficult, providing that all the names, addresses, and other such information are properly prepared and presented. Organizers should always be ready to take advantage of this multiplier effect. * Practice permanent mobilization, then build from there in emergencies. A mass movement requires ongoing mobilization and political communication as part of a way of life. Thousands of letters and phone calls need to be going out all the time, instead of trying to build the network from scratch when a major emergency arises. What, then, will people do when there is no urgent AIDS issue up for immediate decision? Part of the answer is that there is always a need for public education -- and for letting public officials know that AIDS does matter to their constituents. Also, there are many AIDS organizations and projects which need ongoing public support. In addition, AIDS organizations can support coalition partners, who may be having their critical issues being decided at times when ours are not. * Build on consensus. Organizing techniques will not do the job without shared goals that make sense to people. In AIDS there is a tradition of each group acting on its own, with little regard for others. (This habit developed for an understandable reason. Due to the lack of effective national mobilization to deal with AIDS, the choice was often between acting alone and doing nothing.) Consensus can be built two ways, top down or bottom up. The former requires a kind of national leadership which the AIDS community does not seem to have at this time. But we can also develop consensus through improved communication, listening, and respect for each other. Of course we will not agree on every issue. But if we have a better understanding of where each other is coming from, then those who propose initiatives will have an incentive to build on consensus when possible, in order to make their own projects stronger. And we will all benefit as a result. Meanwhile, we already have consensus on a number of issues, for example the travel ban, needle exchange, and probably medical marijuana. * Work in Coalition. A mass movement requires coalition. For example, an AIDS letterwriting organization could invite spokespersons for cancer, health-care reform, civil liberties organizations, etc., to present an issue to its weekly or monthly meeting, bringing addresses to write and phone numbers to call. Those who chose to do so would write or call in support, preferably at the meeting itself. An additional benefit of doing this is that the AIDS organization will have something important to offer other groups, becoming a valued coalition partner, able to get wider support on our issues when we need it. * Study mass movements in history, and abroad. Worlds of experience have been left out of U.S. culture, perhaps deliberately. Through persistent study we can find models and guidance -- and examples of mistakes to avoid. *JJ*JJ* This article is only a first draft on how an organization can operate in such a way that it could become part of a mass movement, if there is enough public feeling about the issue -- as there certainly is with AIDS. Others can improve and refine these suggestions. Nothing we have suggested is difficult to do. But we do not know of any AIDS organization which operates this way. Instead, their operating styles usually rule out any possibility of becoming a mass movement, no matter how much the public is ready. We suggest that the AIDS community start evaluating existing organizations on this basis. You can raise these issues in your organizations, so that AIDS political work can be improved. Until we have a mass movement supporting humane and workable AIDS policies, the current problems will continue. ***** 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: David Keith Thom Fontaine Tadd Tobias Rae Trewartha Statement of Purpose: AIDS TREATMENT NEWS reports on experimental and standard treatments, especially those available now. We interview physicians, scientists, other health professionals, and persons with AIDS or HIV; we also collect information from meetings and conferences, medical journals, and computer databases. Long-term survivors have usually tried many different treatments, and found combinations which work for them. 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