&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& Copyright 1992 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS #157, August 21, 1992 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: [items are separated by "*****" for this display] Research Funding Lobbying: Date Change Medical Funding, Military Spending, and Coalitions: Interview, Center for Economic Conversion Upcoming Senate Vote on "Budget Wall" Alternative and Traditional Medicines -- Report from the VIII International Conference AIDS Research: What's Needed? Announcements: Political Funerals: Activist Organization Formed AIDS Fraud Information Sought NIH Study Seeks HIV-Negative Persons with Immune Deficiency National AIDS Update Conference, San Francisco October 6-9 ***** Research Funding Lobbying: Date Change Our last issue reported that AIDS research, prevention, and care funding was gravely cut in the U. S. House of Representatives. Research did especially badly, with the House proposing even less funding for medical research -- AIDS and other diseases as well -- than President Bush had requested. We mentioned a lobbying effort in September to bring researchers and people affected by HIV to Washington to explain the opportunities for research progress which are now available and which could be lost, so that some of the funds could be restored by the Senate. Since we went to press the date of the Washington trip has been moved up to September 8 and 9. The reason is that the Senate funding bill could be "marked up" as early as September 10; dates after might be too late to have the most impact. The AIDS Action Council is coordinating the overall lobbying days; other organizations, including ACT UP chapters, American Foundation for AIDS Research (AmFAR), Human Rights Campaign Fund, Mothers' Voices, National Organizations Responding to AIDS, National Association of State and Territorial AIDS Directors, Project Inform, San Francisco AIDS Foundation, Treatment Action Group (TAG), United for AIDS Action, and 18th Street Services are participating. Persons interested especially in the AIDS research focus of this effort should contact Anne Donnelly or John Bouffard at Project Inform, 415/558-8669. The AIDS care focus is being coordinated by the Sheridan Group, a professional lobbying organization. They can be reached at 202/462-7288. Those who cannot go to Washington can also help, and should contact either Project Inform, or the AIDS Action Council (202/986-1300). It is especially important for those who have first-hand knowledge of AIDS research, or other AIDS programs, to educate key senators and their aides on these issues. ***** Medical Funding, Military Spending, and Coalitions: Interview, Center for Economic Conversion by John S. James As background for Federal lobbying efforts on funding for AIDS research, prevention, and care, we called the Center for Economic Conversion, a Mountain View, California organization which for 17 years has analyzed the economics of converting companies and local economies from military to civilian work. This information is important because too much of the thinking in Congress and among AIDS organizations has been on terms set by our opponents: that money to fight one disease must be taken away from other diseases. This mind-set prevents the development of coalitions and results in less life-saving medical research overall, diverting the money instead to politically well- connected projects that may offer little benefit to the American people. Recently Congress has been sold on the idea that voters believe that military spending equals jobs -- as shown by the recent vote to build two nuclear submarines at two billion dollars each, after both the Pentagon and President Bush said that they did not want these ships, which are specialized for fighting high-tech submarines of the former Soviet Union. (By comparison, the money spent for each one of these submarines is more than the total annual Federal spending for cancer research; it is more than double the total for AIDS research.) The purpose of this project is to preserve 20,000 jobs in Groton, Connecticut; representatives from elsewhere also voted to spend the money, because they needed to trade votes to preserve similar wasteful projects in their districts. This kind of national mismanagement happens because of five-year legislation, sometimes called the "budget wall," which usually prevents Congress from using the money saved from military projects for any purpose other than deficit reduction. Deficit reduction seldom makes sense in a recession; therefore, irresistible pressures are created to continue to spend enormous amounts of money for projects which no longer serve any national purpose. The Center for Economic Conversion has learned that military spending, which is highly capital intensive, is the least efficient way to create jobs; the same amount of money spent for infrastructure, civilian research, human services, or other national investments would create many more jobs, sometimes more than twice as many. CEC's information is a resource for letting the public know that irrational spending not only delays vital progress such as developing new treatments for AIDS and cancer, but also costs jobs compared to the same spending for civilian purposes, and generates massive inefficiency and waste which threaten our nation's future. AIDS TREATMENT NEWS interviewed Marie Jones, who is a legislative specialist for the CEC and author of its new report, Converting the Cold War Economy: Sixty Four Companies Embrace the Future. Ms. Jones has a masters degree in city and regional planning; incidentally she has also worked in AIDS laboratory research, at the University of California in San Francisco. Below are excerpts from the interview, together with an overview of other information and assistance available from CEC. Marie Jones: "The current defense budget is $287,000,000,000 per year; real spending has gone up fifty percent since 1980 when Ronald Reagan was elected, a rate of growth in peacetime which is unparalleled in our history. This amounts to a cost of $1,200 per person per year for the country (including infants, elderly persons, and the disabled, not only workers) that we spend on defense. Fifty percent of our national debt of $4,000,000,000,000 is due to the increase in defense spending which happened in the eighties and continues in the nineties. "Now that the Soviet Union has fallen apart and the changes in Eastern Europe have happened, we need to ask whether we can afford to keep spending this kind of money or not. Some people argue that we need to keep spending money on defense to maintain jobs in a time of recession. There are three reasons this argument is false. "The first is that money for defense comes from somewhere. When we borrow to spend on defense, we take the money out of the private sector, or out of other public programs. Otherwise, private businesses could borrow that money and create jobs, or the federal government could further develop our domestic programs and hire teachers, nurses, and bridge builders rather than weapons workers. "Second, defense spending creates fewer jobs than any other kind of spending. For every billion dollars we spend on defense, we could get about twice as many jobs if we spent the money in the civilian sector. The defense industry creates fewer jobs because it has great overhead costs; it is one of the most profitable industries in the country. Defense contractors are guaranteed high profits by the Pentagon. And defense workers are highly skilled (40 percent are engineers, who earn high salaries), so we can employ relatively fewer people for the same dollars than in the civilian sector. "The third major reason is that the end of the cold war means that we don't need this large a defense budget. "We need to start thinking about security in a different way. Before, the money, technology, weapons and people in the armed forces were our national security. Now we have serious domestic problems: poverty, health problems like AIDS and cancer which are seriously underfunded, a housing shortage, crumbling infrastructure, and unemployment. For example, the three water tunnels that supply New York City are 30 years old; not even one can be turned off, and no one knows when any of them will fail. That's just one of the glaring examples. Unless the defense budget is reduced, we will not have the financial wherewithal to tackle these problems. "If the defense budget is cut, what would you do with the money? Right now a "budget wall" basically requires that any cuts in defense spending go to deficit reduction. This prevents coalition building between people interested in healthcare, low- income housing, small business development, job retraining for defense workers, the environment and new technologies for pollution control, etc. Without a broad coalition to cut the defense budget, all we have are peace groups, left over from the Vietnam War, trying to make this change happen. We need to build this multi-issue coalition to tackle the big interests that back grossly excessive defense spending. Unfortunately the budget wall eliminates our ability to reuse defense monies for social and domestic programs. Last year there was a close vote to keep the budget wall intact, so look at your representative's record; be conscious of it. (Another vote on ending the budget wall is planned for this year; see article below.) If we do remove that budget wall, we have a good chance of getting some of these dollars for the defense department rechanneled for the domestic needs of the country. "The budget wall contorts rational decisions to cut defense into political hot potatoes. Consider the case of the Seawolf submarine (mentioned above). Congress voted to continue production of two submarines for a total cost of four billion dollars over two years, to maintain 20,000 jobs in Groton, Connecticut. Unfortunately after these two subs are built we will be in even a worse position than we are now. We will have two more unneeded nuclear submarines to fight Soviet nuclear submarines; we will be four billion dollars more in debt as a country; and we will still have 20,000 workers that will need to be re-employed. The "budget wall" ensured this outcome because Congress could not take money from defense spending and use it to retrain the workers or give them opportunities to go back to school to get a better job. Unless workers' security is provided for, it will be politically impossible to redirect defense spending. (To illustrate how much money is involved, if the two billion dollar cost of just one submarine were divided among the 20,000 workers, they would have $100,000 each -- more than enough to provide generous retraining, relocation, or other benefits.) "There are other connections we could make. For example, you probably did not know that the U. S. defense industry is the number one polluter in the world. Many defense plants and bases have very bad toxic problems, many are Superfund sites that need to be cleaned up, at billions of dollars a year in public expense. "In the presidential race, Clinton is talking about conversion, about cutting the defense budget a little more than Bush wants to do. Bush is talking about a 25 percent reduction over five years; Clinton is talking about 30 to 35 percent. He's walking a fine line, because the issue of jobs has paralyzed the call for cutting defense. "We need to rethink our national security in terms of what this country is and what it can do. Two of the most nationally secure countries in today's world are Japan and Germany, because they have strong economies. They don't have a big defense budget; at the end of World War II they were forbidden to build a big military. That helped them, because they have been able to put that money into developing industry in their countries, to make sure they are competitive in the international market and that their workers are well trained and well paid." For More Information The Center for Economic Conversion publishes the quarterly newsletter Positive Alternatives, and a number of research reports. It provides organizing assistance, speakers, and workshops -- and technical assistance to workers, managers, and public officials confronting military cutbacks. (For example, it is now working with the City of San Jose to apply to the Office of Economic Adjustment of the Department of Defense for funding to help the city plan for economic conversion. Santa Clara County, the "silicon valley" area where both CEC and San Jose are located, is the largest per capita recipient of defense spending in the U. S.) For more information, contact the Center for Economic Conversion, 222 View St., Suite C, Mountain View, CA 94041, 415/968-8798. ***** Upcoming Senate Vote on "Budget Wall" In September, Senator Tom Harkin (Democrat, Iowa) plans to introduce an amendment to the Fiscal 1993 Labor, HHS and Education Appropriations bill to transfer $3.7 billion from unobligated Department of Defense accounts to a number of underfunded health, education, and human-services programs. This will include $100 million to the Ryan White programs for AIDS care, and $450 million for biomedical research (not broken down for specific diseases). The bill includes an increase for tuberculosis. Because this amendment would break the budget agreement which prevents defense funds from being used for domestic programs, 60 votes will be required in the Senate, instead of the 51 usually required. This amendment faces an uphill battle, since President Bush is expected to veto it if it passes; then a two-thirds vote in both houses of Congress would be required. Also, because of the deficit and because of the way the issue of domestic vs. military spending has been framed, there is reluctance in Congress to override the budget agreement. But whether or not this particular proposal becomes law, it is important as part of the ongoing effort to build a broad-based coalition including children's, education, medical research, and public health activists in a united effort. ***** Alternative and Traditional Medicines -- Report from VIII International Conference By Jason Heyman For the first time in the eight-year history of the International Conference on AIDS, alternative and traditional indigenous medicines had a prominent place. Four oral sessions, numerous poster presentations, published abstracts and a three- evening minicourse (designed in part by AIDS TREATMENT NEWS) addressed this topic. The minicourse offered a glimpse of what an international dialogue on alternative and traditional medicines could look like. Representatives from countries heavily affected by HIV discussed their work with traditional indigenous treatments, and western-trained researchers discussed the preliminary data that exists on some "alternative" treatments. Most information in this area appeared in poster presentations or published abstracts. These reports were not selected by the review committees for oral sessions, but instead for poster presentation in the conference hall and/or publication in the three-volume set of abstracts given to all conference attenders. [Reference numbers below refer to the abstract numbers in these volumes.] One notable paper was a poster presentation by Raxit Jariwalla, of the Linus Pauling Institute, on a laboratory study of vitamin C (ascorbate) combined with NAC (N- acetylcysteine) [poster #PoB3697]. NAC is a naturally occurring amino acid that has become a popular treatment available through buyers' clubs. (For background on NAC see AIDS TREATMENT NEWS #152, June 5, 1992.) Jariwalla's laboratory study found that adding NAC to vitamin C created a synergistic effect that caused an eight-fold increase in anti-HIV activity. The laboratory study alone cannot show whether the combination treatment will be useful, so it should be followed up with a clinical trial. Because both of these agents are already widely used, it is important to know as much about them as possible, including how they work together. Another promising laboratory study conducted at the Chulalongkorn University Hospital in Bangkok examined an extract of the "lacquered mushroom," Ganoderma lucidum [PuB7521]. The preliminary study showed that this product altered the response of lymphocytes taken from HIV-positive patients and offers evidence supporting further studies. (Note: Nutrition will be covered separately in future articles.) ***** Clinical Trials and Observational Studies One small observational study by Qingcai Zhang of the Sino Medical Institute of New York on the use of extract of bitter melon, Momordica charantia, showed a marked increase in T- helper cells [PuB7597]. The patient who had the largest increase went from 480 T-helper cells to 1370 after treatment for three years. The patient with the smallest increase went from 336 T-helpers cells to 446 over a period of eleven months. The data was only collected from six patients and the study was not controlled or blinded, so it is hard to draw conclusions about this treatment. As the use of bitter melon grows in the community we will be watching closely to find out more about its efficacy and usefulness. (Note: For a report on how to obtain and use bitter melon send a self-addressed envelope to the AIDS Intervention Team of APLG, 300 West Sunset Blvd., Los Angeles, California 90012. Persons outside North America should include two postal reply coupons, if possible, with their request for this report.) Another plant extract, Acemannan, from the aloe vera plant, was discussed in a published abstract. A related product was popular a few years ago, but according to the Healing Alternatives Foundation, a buyers' club in San Francisco, it has fallen out of favor. This preliminary clinical study tested Acemannan in combination with AZT and found it to be safe [PuB7488]. Unfortunately, the trial did not determine efficacy, but the average decline of T-helper cells in patients after 24 weeks of therapy was almost 40 percent, which does not look promising. Three abstracts discussed the use of traditional African medicine in Tanzania. E. Lugakingira, a traditional African doctor, teamed up with L. Barongo, a western trained doctor, to study a traditional herbal remedy at the Traditional Medicines Unit in Nansio, Tanzania [PoB3396]. They conducted a preliminary uncontrolled clinical trial of 156 patients, and 80 percent showed clinical improvement. They say further research must be done to analyze the active agents in the compound they were using. Similar research was conducted by David Scheinman and others from the Tanga AIDS Working Group in Tanga, Tanzania [PoB3400]. He has been studying the clinical effects of herbal remedies prepared by two traditional African healers. (Note: We plan a longer article on this project in a future AIDS TREATMENT NEWS.) Another cooperative research program was reported from Dar es Salaam, Tanzania, where 158 patients were treated with traditional Chinese medicine [PoB3448]. The treatment used in this study was not specified, but traditional Chinese medicine usually employs a variety of herbs in specific combinations and usually includes acupuncture treatments. Approximately half of the patients reportedly had a decrease in symptoms such as fatigue, diarrhea, and wasting. The Community Research Initiative of New England, in Boston, conducted an observational clinical study on the use of acupuncture for the treatment of peripheral neuropathy not due to drug toxicity [PuB7554]. The trial showed that patients generally had a positive benefit or no change; important findings considering that the standard of care for peripheral neuropathy is often ineffective. In another paper on acupuncture, presenting anecdotal research findings, Magnolia Goh from the Gay Men's Health Crisis in New York describes decreased symptoms, decreased rate of opportunistic infections, and weight gain in most of her patients [PoB3393]. The same author published an abstract on a Chinese herbal tea remedy [PoB3441]. The importance of exercise and body movement therapy such as yoga, dance and relaxation techniques was described in two papers. Adelheid Rehse from the Pella VIDDA Group in Rio de Janeiro, Brazil [PuB7464] suggested that these forms of therapy helped improve patients' confidence in their bodies. A controlled, randomized clinical trial of exercise was conducted by Celia Schlenzig at the University of Heidelberg, Heidelberg, Germany [PoB3401]. Patients in the exercise group had more stable T-helper cells and slower disease progression then patients in the control group. Prevalence of Alternative Therapies There were numerous papers reviewing the usage of alternative treatments in different communities around the world [for example, PuB7491, PuB7517, PoB3402, PoB3398, PoB3395, and oral presentation ThB1508] in addition to those reviewed below. The use of alternative medicines by women was specifically addressed by Imani Harrington of San Francisco with the help of a survey created by the Center for Natural and Traditional Medicines in Washington D. C. [PuB7233]. The researchers reported that all of the 50 HIV-positive women they interviewed were engaging in some form of alternative or self-care activity, with women using many alternative treatments for women-specific health problems that are not adequately addressed by western allopathic medicine. The factors that determine the choice of traditional medicine versus western allopathic medicine by HIV-positive African women were studied by Rachel King from the Projet San Francisco in Kugali, Rwanda [PoB3394]. She found that the majority of the women are using both forms of health care. The women look to traditional medicine for treating symptoms such as weight loss, weakness, nausea, and dermatitis (including herpes zoster). Western medicine was sought for exploratory medical tests and for illnesses that were perceived to be internal. David Baker and Richard Copeland of San Francisco identified the most popular alternative treatments being employed by HIV- positive gay men and commented on the importance of looking to people with HIV and AIDS for leads in the development of new treatments. Some of the treatments they identified as being popular were vitamin C, NAC, DNCB (dinitrochlorobenzene), Compound Q, Chinese herbs, and Iscador (mistletoe extract) [PoB3391]. A self-help manual for prisoners with HIV or AIDS was presented by Stephen Korsia of the AIDS Project Los Angeles [PoB3378]. He discussed treatments they can do for themselves in prison including such things as self-massage, acupressure, nutritional supplementation, and visualization/meditation. Comment Politically, this year marked a change in the course of the conference toward greater attention to alternative or traditional treatments, in addition to mainstream pharmaceutical industry drugs. As time passes and the limitations of western medicine become more defined, it is increasingly important for there to be cooperation among different medical traditions. In general, this year's conference seemed to be more inclusive of ideas and people that have been left out in the past, and we can only hope that this is a trend that will increase in coming years. At a meeting in Amsterdam with activists, Peter Piot, the incoming president of the International AIDS Society (which is the formal sponsor of the International Conference), agreed on the fundamental importance of alternative treatments. He stated that he believes that 90 percent of people with HIV or AIDS in Europe are using some form of alternative treatment. Dr. Piot met with the organizers of the 1993 conference in Berlin and persuaded them to include alternative and traditional medicines in the scientific tracks that already exist. What they have not yet agreed to is the creation of an abstract review board specific to these treatments, to insure fairness in the abstract approval process by delegating the job to experts in this field. (Note: AIDS TREATMENT NEWS usually includes degrees -- e.g. "M. D. " -- the first time names are used in an article. We will not do so in covering the International Conference because degrees are not included in the conference documentation, and it would be difficult or impossible to contact all the authors in time for publication.) ***** AIDS Research: What's Needed? Excerpts from Talk by Martin Delaney On August 11, Martin Delaney of Project Inform spoke to several hundred scientists at the annual meeting of the Laboratory of Tumor Cell Biology of the National Cancer Institute. What most impressed us was his ability to say diplomatically that major changes in the research program are needed in order to produce the practical results that the public is demanding. For this reason, his talk may be helpful to other AIDS activists. It is also important because it addresses the critical issue of how medical research could become more productive of the kinds of advances which would save lives and improve the quality of life -- and in addition maintain the necessary political and Congressional support for research funding, support which has become increasingly shaky as Congress questions whether the money it has spent for medical research has paid off in results. Martin Delaney: "Some of you may remember that I came before you last year at this dinner to raise the question of, 'So what?' I urged you then to think through and plan the practical outcome of each and every experiment you conduct. I saw a lot of discomfort and squirming in the audience that night along with many puzzled faces which wondered whether I understood that research needs to be creative and open-ended, that science can't be ordered or directed like some business project. My point was to raise the question of balance and to remind you that we were in the middle of an epidemic, not a course in graduate school. Tonight, I suspect I will invoke a bit more squirming and discomfort, not because I'm here to say you're doing a bad job, but because I want to raise the possibility that there may be ways to do a better job if you try. "In this last year, and especially at Amsterdam and in the last few days of this conference, an enormous number of new leads, insights, and opportunities have been uncovered. A wealth of new scientific ground has been covered since last year, but I somehow fear that we are no closer to achieving the goal of a cure for AIDS. The question which disturbs me is, 'Who is connecting the dots?' Who's reading the whole book, and not just their own chapters? Who's taking responsibility for the big picture and making sure that all these new leads and insights will be followed up? Who is taking steps to avoid duplication of efforts in the sea of research? ...I wonder also whose responsibility it will be, after we leave here this week, to make sure that all the key questions raised here will be pursued and answered in a logical, step-by-step fashion...Who, indeed, is in charge around here? I'm deeply afraid, however, that the answer to this question is, 'Everyone and no one.' "From where I have stood for the last several years, not as your enemy but often as your critic, it doesn't look like there is any kind of a battle plan directing this effort. And if we truly want to believe that we are engaged in a war against AIDS, there most certainly ought to be. As a complete outsider and a military strategist, Dr. Luttwak [Edward N. Luttwak, Center for Strategic & International Studies, who spoke to the meeting before Delaney] came here and in a few moments recognized that we really aren't fighting a war against AIDS. He knows what a war looks like. And this isn't one, however much we try to pretend it is. A war begins with a plan, an orchestration of resources and a prioritization of long and short term objectives. Dr. Luttwak suggests you might need more first hand intelligence -- information from the front, or clinical battle lines. I say that won't make much sense until there's a headquarters and a command structure to report it to. And a chain of command through which the orders could flow, orchestrating the achievement of objectives.... "I'm not suggesting that someone should take over and begin telling all of you what to do. But I am saying that currently, you simply don't have a plan, you don't have objectives. In a way, it's fair to say you don't even have a clue. And that's simply no way to achieve a goal, let alone win a war. As I said last year, it's not a dictatorship we need, but a different balance. We needn't proceed from no plan -- the current scenario -- to total regimentation. We can, however, seek a greater sense of direction, some form of planning and prioritization and managed interaction, than we have now... Another point is how much the different sciences have to learn from each other and how much could be gained if you learned to communicate with each other. How much better would things be if you learned a language less arcane than the one you chose, one which allowed you to get your own messages out more clearly and which would allow you to hear so much more from the front lines of clinical observation ...We are waiting for you to cure a disease, not write another paper in Science.... You must understand the goals before you: to minimize suffering and pain, to keep people alive with a reasonable quality of life, to cure a disease -- and in the process, make a giant leap against all human diseases. It has been striking at this conference to see the universality of your work. Even though you may work in the name of AIDS or cancer, you are working and learning to direct the forces of life itself. What enormous payoffs for humanity lie at the end of this rainbow? And won't we get there sooner if we remain focused on clear, sharp goals rather than wading in the endless circular pools of academic pursuit? "Now I must acknowledge that as much as we appreciate the things you have already accomplished, the failure to accomplish more is palpable in the country today. We see it in the funding cuts imposed on you by Congress, a situation in which our liberal Democratic Congress this month voted to cut AIDS research spending below the paltry levels proposed by our right wing Republican President. Surely, something is wrong with this picture. We see it in the growing fight for resources between groups fighting different diseases. These are symptoms of the discontent and impatience bubbling to the surface. Those of you squirming out there may think I just don't understand your situation, but I suspect I understand the obstacles you face far more so than the public at large, and more so than the Congress which writes your paychecks. And however little patience you hear in my voice, far less is felt by the people who are dying of this disease and don't understand why things can't move any faster. Perhaps it is not fair of us to expect miracles from you, but neither should we settle for anything less than your very best effort. And you cannot possibly be at your best when you work without a plan, without an overall design or sense of direction, and no command structure or organization. I would rightly be thrown out of my job at a small foundation for acting in this manner -- yet somehow you've come to accept it in your world, with all the weighty problems you hope to solve. You cannot possibly be at your best when each of you doesn't know what the others are doing and why, or when your views are blinded by how you feel about each other, rather than the quality of the insights presented. "I ask not that you work harder, but smarter. I call upon you to initiate new levels of collaboration and engage in some big picture thinking. I ask that you begin to work together by designing a plan, one that maximizes the enormous gifts each of you has to offer while orchestrating the players together in a symphony of science. As human beings, you need not and should not settle for less from yourselves. I urge you to begin this planning process yourselves, because if you don't the day is coming when it will be imposed upon you by outsiders who may not understand your needs or concerns. But I'm equally convinced that with a plan, a good plan of your own making, you will find real synergy in your efforts and show the world what a war on AIDS really looks like." ***** Announcements ** Political Funerals: Activist Organization Formed The possibility of political funerals has long been discussed among AIDS activists (see AIDS TREATMENT NEWS #147, March 20, 1992), but until recently there has been no service organization to help with the necessary arrangements, which persons who want to have their memorial service in this form are seldom in a position to handle. For several weeks a New York group, Stumpf/Kane, has been researching what is needed; initially it has focused on the New York area. It asked us to run the following announcement so that others who are interested can contact them. "Throughout the AIDS crisis, furious activists with advanced HIV disease have been saying they want their deaths to help further the fight against this country's neglect and incompetence in the face of AIDS. "But until now, the idea of political funerals has remained just that -- an idea. Political funerals aren't part of the American activist tradition, as they are in Ireland, South Africa, and other countries. For years, the desires of activists who want to make a final statement with their bodies have gotten lost in a flurry of bereavement, familial wishes and the plain American terror of death. "We think it's time our premature deaths carry some of the same fury and focus that have marked our lives. We're establishing an organization that can carry out the directives of fellow PWAs who want political funerals. Whether that means a procession down Fifth Avenue, delivery of the coffin to the White House, or whatever. "We're taking this action out of love and rage. The times are only getting more desperate. If you're interested, we'd like to talk to you. "We can be reached through: Stumpf/Kane, P. O. Box 1187, New York, NY 10113." ** AIDS Fraud Information Sought Investigative reporter Bohdan Zachary is researching AIDS fraud for a story for The Advocate. He wants to hear from people with personal experience -- who believe that they or someone they know have been ripped off by a questionable treatment promotion or other AIDS scam. You can contact Mr. Zachary at 415/621-6115, or by fax at 415/552-7723, or by mail at P. O. Box 460910, San Francisco, CA 94146. He expects to be working on this story for the next two to three months. ** NIH Study Seeks HIV-Negative Persons with Immune Deficiency At the time of the International Conference in Amsterdam, there was massive publicity about a few cases of persons who have immune deficiencies but no evidence of HIV. The U. S. National Institute of Allergy and Infectious Diseases (a branch of the National Institutes of Health) is interested in studying persons who are HIV-negative and have T-helper counts under 300, or T- helper percent less than 20, on more than one testing. Those who are accepted for study will have the benefit of extensive free tests, and travel and other costs will be paid. For more information, or to refer someone to this program, a physician should call 800/243-7644 (800-AIDS-NIH). ** National AIDS Update Conference, San Francisco October 6-9 The 5th National HIV Update Conference will be held in San Francisco October 6-9 under the title "Integrating HIV/AIDS: A Shared Responsibility." Each year, the conference brings together health care providers, administrators, social workers, community-based organizations, policy makers, government agencies and people with AIDS to discuss the epidemic -- an "AIDS 101" for healthcare professionals who may not previously have worked with AIDS. The conference is sponsored by a long list of organizations, including the American Medical Association, American Nurses Association, National Hospice Organization, San Francisco Department of Public Health and U. S. Public Health Service. Workshops focus on the role of health care providers, effective models of education, ethical, legal and policy issues, recent advances in research and access to health care. Admission costs $245, or $100 for people with HIV. Continuing education credit is available for physicians, nurses, and social workers. To register, contact KREBS Convention Management Services, 555 DeHaro St., Suite 200, San Francisco, CA 94107-2348, phone: 415-255-1297, fax: 415-255- 8496. ***** 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 415/255-4659 fax Editor and Publisher: John S. James Medical Reporters: Jason Heyman John S. James Nancy Solomon Reader Services, Business, and Marketing: David Keith Thom Fontaine Jason Heyman Nancy Solomon Laura Thomas 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. AIDS Treatment News does not recommend particular therapies, but seeks to increase the options available. Subscription Information: Call 800/TREAT-1-2 Businesses, Institutions, Professionals: $230/year. Nonprofit organizations: $115/year. Individuals: $100/year, or $60 for six months. Special discount for persons with financial difficulties: $45/year, or $24 for six months. If you cannot afford a subscription, please write or call. Outside North, Central, or South America, add air mail postage: $20/year, $10 for six months. Back issues available. Fax subscriptions, bulk rates, and multiple subscriptions are available; contact our office for details. Please send U. S. funds: personal check or bank draft, international postal money order, or travelers checks. VISA, Mastercard, and purchase orders also accepted. ISSN # 1052-4207 Copyright 1992 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&