&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& 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 Issue # 158, September 4, 1992 phone 800/TREAT-1-2, or 415/255-0588 CONTENTS: [items are separated by "*****" for this display] Nutrition at VIII International Conference on AIDS Leads on New Drugs: Published-Only Abstracts from International AIDS Conference, Basic Science Track What Could the White House Do to Fight the AIDS Epidemic? Announcements Political Funeral at White House, October 12 ACT UP White House Demonstration, Noon October 12 The Names Project AIDS Memorial Quilt Washington, D. C., October 9-11, 1992 Hurricane Andrew Relief for People with AIDS Rifabutin for MAC Prevention: FDA Hearing September 24 In Memoriam: Ron Woodroof ***** Nutrition at VIII International Conference on AIDS by Jason Heyman The role of nutrition in AIDS was addressed in only one oral session during the VIII International Conference on AIDS, and it was cancelled until activist pressure succeeded in forcing conference organizers to reinstate it. Approximately thirty papers relating to nutrition were included in the published abstract books. These papers cover a variety of topics including malnutrition, wasting, and current research into vitamin deficiencies and nutritional supplementation in HIV infection. [Reference numbers below refer to the abstract numbers in these volumes.] The oral session, "HIV and Nutrition," moderated by Elinor Levy, M. D., of the Boston University School of Medicine, included presentations by three clinical researchers and by Rainy Cheeks, the director of a community organization, Us Helping Us, in Washington, D. C. Mr. Cheeks has successfully used nutrition and alternative therapies in his own treatment, stressing a common-sense approach to diet as the foundation for all medicine. He discussed the treatment of certain symptoms and infections with nutritional supplementation and dietary change, and challenged researchers to bring their work to a level where it can be applied to the day to day lives of people with HIV and AIDS. Drawing from his own experience, he explained how educating yourself about nutrition is the most fundamental way of taking charge of your own health care. Current research During the oral session, Richard Beach, M. D., from the University of Miami School of Medicine, discussed the state of nutrition in asymptomatic HIV-positive individuals. He found an increased resting energy expenditure (the amount of energy your body uses while in a relaxed state) in asymptomatic people with HIV. This appears consistent with reactions seen in most types of infection, except that it may have a different mechanism of action in the case of HIV infection. These findings were similar to those of a study at St. Luc University Hospital, Brussels [abstract #PuB7569], and research done by another panelist, J. T. Hommes, M. D., of the Academic Medical Center in Amsterdam. The panelists agreed that nutrient supplementation can be an effective prophylaxis against many kinds of infection, and discussed how common nutrient deficiencies are in people with HIV and AIDS. Dr. Beach stated that 20 to 40 percent of the asymptomatic patients he studied had abnormally low plasma levels of riboflavin, vitamins A, B6, C, E, zinc, and copper. Twenty five percent of the patients had a vitamin B12 deficiency [PuB7318] and were found to have low scores when tested for information processing speed, and visual/spatial ability. Upon normalization of B12 levels, performance in these areas normalized. A lack of vitamin B6 was directly correlated to decreased immune system activity. [Related work: PuB7126]. Research into nutritional status as a surrogate marker was carried out at the Graduate Hospital, University of Pennsylvania, Philadelphia [PoB3695, and PuB7113]. These papers show a correlation between nutrient deficiencies and disease progression. Nutrition can also alter the efficacy of other treatments; according to Dr. Beach, "patients who were put on AZT who had low plasma zinc levels did not do nearly as well on the drug as those who had normal plasma levels of zinc...In the original studies of AZT they found that B12 deficiency correlated with an increased incidence of side effects from the drug. So both the efficacy and the tolerance of antiretrovirals can be influenced by nutritional status." He cautioned that there is some question as to the practical use of zinc since some studies have shown that large amounts can suppress the immune system. Low plasma zinc levels are a natural response by the body in the face of infection, and might have a beneficial effect such as slowing viral replication. Dr. Beach's group at the University of Miami School of Medicine proposed that vitamin B6 deficiency is directly related to anxiety and depression in early HIV infection [PoB3711]. They also gave recommendations for nutrient supplementation in early HIV infection [PoB3675], suggesting that HIV-positive individuals consume more than the RDA (the U. S. Food and Drug Administration's Recommended Daily Allowance) of many nutrients, to maintain adequate blood levels. They made interim recommendations for vitamins A, B2, B6, B12, C, and E, and for zinc. (Selenium deficiencies have also been found in HIV infection [PuB7336].) Three papers were submitted on vitamin A, including research from St. Vincent's Hospital in New York which showed that people with AIDS commonly have a vitamin A deficiency [PoB3698]. Researchers from the National University of Rwanda discovered a relationship between low maternal vitamin A levels and fetal death [PoC4221]. The immunostimulatory effects of beta-carotene (a vitamin A precursor, which is safer to use than vitamin A itself) were studied at Yale University School of Medicine in New Haven [PoB3458]. In this study, half the patients had an increase in T-helper cells while taking 120 mg. of beta-carotene per day. Upon discontinuation of therapy patients returned to previous T- helper levels. Joan Priestley, M. D., a physician from Los Angeles, presented a poster abstract on an observational study of a nutrient replacement therapy she uses with her patients [PoB3710]. She reported that nutrient supplementation helped patients maintain stable body weight, enhanced quality of life, and even extended survival time. [Other related abstracts: nutritional markers PoB3708; body composition PoB3840, PoB3693, PuB7175; community projects and risk factors: PoB3705, PuC8119, PoD5285, PoD5252]. Malnutrition and AIDS "It is well known that the function of the immune system is influenced by the nutritional status," stated Dr. Hommes. Malnutrition has been shown to weaken the body's ability to fight infection, "resulting in increased susceptibility to infectious diseases with increased morbidity and mortality." Similar findings were presented in a poster abstract from the Clinique des Maladies Infectieuses, Grenoble, France [PoB3701]. Donald Kotler, M. D., from the Task Force on Nutrition Support in AIDS, St. Luke's-Roosevelt Hospital, New York, spoke during the oral session about the lack of research on the impact of malnutrition on AIDS pathogenesis. Malnutrition in people with HIV can be caused by a variety of things, including insufficient food intake and metabolic and absorption abnormalities. Studies have demonstrated that appetite stimulation and enteral feeding (through a tube) can lead to increased body weight. The correct application of these treatments is not clearly understood. Dr. Kotler has also researched physical conditioning (exercise), which he has found to improve quality of life, and which may be the least expensive way of making up for the adverse effects of weight loss [PuB7395 and PoB3401]. A number of papers addressed the use of nutritional interventions: counseling and prescribed diets [PoB3676], growth hormone therapy [PoB3835], parenteral nutrition [PoB3694, PuB7265], nutritional formulas [PoB3696], prevalence of nutritional interventions [PoB3699], and appetite stimulation using Dronabinol (marijuana extract) and Megace (megestrol acetate) [PoB3687, PuB7442, PuB7505, PuB7531]. Developing Countries Dr. Beach estimated that one billion people, one quarter of the world's population, are malnourished. "Most of the new cases of HIV infection are occurring in the third world, and they are occurring in areas exactly where that malnutrition is particularly endemic...So, even if we have an HIV vaccine somewhere down the road we are going to have to pay attention to the nutritional status of the people who are getting that vaccine." In Africa, AIDS was originally referred to as "slim disease" because wasting is one of the most common symptoms of HIV infection in developing countries. "The triad of diarrhea, fever and weight loss are the three principal symptoms you see everywhere in the third world," and they are directly related to the malnutrition of those who become HIV-infected. People who are malnourished are more susceptible to infection by HIV, so the cycle of poverty and disease continues unabated. Note: Other nutrition abstracts address: gastrointestinal function [PoB3839, PoB3690, PuB7106], and diarrhea [PoB3333, PoB3340, PoB3348, PoB3725, PuB7155]. ***** Leads on New Drugs: Published-Only Abstracts from International AIDS Conference, Basic Science Track by John S. James Almost five thousand abstracts were submitted to the VIII International Conference on AIDS/ III World STD Conference (held in Amsterdam, July 19-24, 1992). The ones considered most important by the teams which put the program together were scheduled for presentation in the oral sessions (often with eight to ten different sessions running simultaneously), or as poster presentations, with researchers given numbered board spaces on which they could post whatever information they wanted, and scheduled times to try to be there to talk with anyone who wanted to meet them. But due to time and space limitations, there were about a thousand submitted abstracts which were judged worthy of publication but could not be scheduled for presentation in Amsterdam. These were published in a separate volume of the three-volume set of conference abstract books, which was given to everyone who attended. Each year these published-only abstracts from the international conference include important information, but are largely ignored. The reports are important, even though they did not make the cut as oral talks or as posters, because with something as rapidly changing and poorly understood as AIDS, no one, including the reviewers who selected the abstracts, can know what will prove valuable in the future; the most innovative leads, being unfamiliar, can end up in the published-only book. (We also noticed a number of high-tech research reports from Moscow in that volume. They may have missed a higher rating because reviewers had difficulty in evaluating them, since in the past there has been limited communication between AIDS researchers in the former Soviet Union and elsewhere, due in part to deliberate U. S. policy.) Another reason why the published-only abstracts are largely ignored is that they are not tied to anything happening at the international meeting, while thousands of other abstracts are; conference attenders naturally read the latter first, to make sure they do not miss an important talk or other event. Therefore the scheduled presentations get most of the attention, and the total amount of information is so overwhelming that few have time get to the published-only papers. This article summarizes some of the published-only abstracts in "Track A: Basic Science," one of the four tracks of the conference. We focus here on leads for new drugs or unfamiliar drugs, but could not finish even this category, and will have to continue this article in a future issue of AIDS TREATMENT NEWS. We also plan to look at the other tracks in future articles - especially "Track B: Clinical Science and Care." Note that all these abstracts were due March 2, 1992, so they do not include results after February. Since Track A, which we are covering here, focused on laboratory research, the potential drugs mentioned are seldom treatments which are ready to use now; rather they are possibilities for the future. Although they do not have immediate use, physicians, scientists, and activists may find it helpful to know about them. * "Ketotifen Inhibits the Production and Secretion of TNF- Alpha in PBMC Cultures of HIV-Infected Patients," Maria Ballmaier and others, Medical School Hannover, Germany, abstract # PuA6009. This paper found anti-HIV activity of ketotifen (an anti-asthma medicine used in Europe) at a concentration which could be achieved in patients. The mechanism of action is by reducing levels of TNF (tumor necrosis factor), which is similar to the action of the prescription drug pentoxifylline (see AIDS TREATMENT NEWS #156, pages 4-5), and possibly NAC. * "Anti-HIV-1 Activity of CD4 Synthetic Oligopeptides," P. M. Cereda and others, University of Pavia, Italy, abstract # PuA6031. Two peptides which corresponded to a critical region of the CD4 molecule were found to inhibit HIV in laboratory tests. The abstract did not say how much inhibition was found. The principle here would be similar to that of soluble CD4, which in its original form failed to work as a drug in human tests. * "The Experimental Investigation on Traditional Chinese Medicine for Anti-AIDS," Guan ChongFen and others, Institute of Basic theory of TCM, Beijing [abstract # PuA6068]. This abstract reported two separate studies. In one, "some Chinese herbs which were selected from effective clinical treatment in some African countries" were tested for antiviral activity against SIV (simian immunodeficiency virus, which causes an AIDS-like disease in some monkeys and which is very close to HIV-2) in laboratory tests. They did find a "significant" antiviral effect. The herbs were not identified. The other study, in immune-suppressed mice, found that different herbs behaved as immunomodulators. They were identified only as "some prescriptions and herbs of effective clinical treatment, such as 802, 806, 809, 8911." * "Effects of Immunomodulator SB-73 on Intra-Ocular Graft Tooth Germ Development," Sebastiao Hetem and others, School of Dentistry of Aracatuba, Brazil [abstract # PuA6072]. SB-73 is a potential AIDS treatment being developed in Brazil; a test in patients was reported at the international conference in Florence in June 1991 [Nunes and others, abstract # WA1238]. This study, a toxicity test in animals, found no problem with high doses. (Another abstract on effects of SB- 73 on tooth germ development was published in the same book, # PuA6159.) * "Group Specific, Neutralizing, Syncytia Inhibiting, Cytotoxic Human Monoclonal Antibodies Against HIV-1 for Passiveimmunotherapy," Hermann W. D. Katinger and others, Institute of Applied Microbiology, Vienna, Austria [abstract # PuA6084]. Passive immunotherapy against HIV today is usually done by transfusing plasma from persons who are making good anti-HIV antibodies and remaining clinically well, to others who are not making antibodies effectively and are more seriously ill. A refinement of this method is the drug called HIVIG, in which the antibodies are extracted and purified from the blood of donors. In both cases, the antibodies were made by people. It is widely agreed that the future of passive immunotherapy will depend on antibodies created by special cells engineered from human cells in the laboratory, allowing mass production of the antibodies and avoiding the need for human donors. Abstract PuA 6084 reported the development of 32 different cells which secrete anti-HIV antibodies; these were produced by finding cells which produced effective antibodies, then transforming those cells so that they could grow indefinitely. Three of the 32 cells were selected for human testing of the antibodies they produce. (Note: We find it surprising that this abstract was not given a poster. This example illustrates the fact that there is no known rational way to select among five thousand abstracts in hundreds of different fields. We believe that this problem will only be solved by distributing the submitted abstracts in computer form, in such a way that they can be viewed through a user-changeable filter based on the evaluations of the referees. We suggested such a system and gave some details in AIDS TREATMENT NEWS #102, May 4, 1990.) * "Retrogen Increases the Anti-HIV Activity of AZT, ddI, and ddC," by Erik De Clercq and others, Rega Institute, Leuven, Belgium, and Paul Ki, Retrogen Medical, Inc., Creston, Iowa [abstract # PuA6087]. Retrogen is "a double-stranded RNA conjugated with polysaccharide"; according to the abstract, it has been found to be not toxic to humans and to increase T-helper and white blood counts. In this study, it was tested in laboratory cells, using an animal virus (marine sarcoma virus), not HIV. A concentration of retrogen which gave 30 percent protection was able to reduce the effective concentration of AZT, ddI, and ddC to about a quarter of the concentration otherwise required. Retrogen was also tested against HIV and HIV-2, and the effective concentrations were found to be less than two micrograms per ml. * "Booby Trapped Cells: A New Approach for Gene Therapy of HIV Infection," D Klatzmann, Hpital de la Piti-Salptrire, Paris [PuA6088]. Since the blood cells infected by HIV are all derived from stem cells in the bone marrow, it might be possible to genetically engineer some of these cells so that they could not be infected with HIV, allowing the patient's blood to be repopulated with new cells which are immune to the infection; this concept is called gene therapy. Most gene therapy approaches so far have tried adding genes which in some way make the cell resist infection. Dr. Klatzmann suggests a different approach -- making cells which will quickly be killed if they are infected, by adding a gene which makes a toxin which will kill the cell, but which does so only under control of HIV regulatory sequences. His group did make such cells, and they completely stopped the spread of HIV in laboratory cultures. (This work was described in more detail in M. Caruso and D. Klatzmann, Selective Killing of CD4+ Cells Harboring a Human Immunodeficiency Virus- Inducible Suicide Gene Prevents Viral Spread in an Infected Cell Population, PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES, USA, January 1, 1992, volume 89, pages 182-186.) * "Effect of Natural and Synthetic Lignins on HIV Infection and on Myeloperoxidase Activity," Takao Kunisada and others, Showa University, Tokyo, Nagoya city University, and Universit t Mainz, Germany [PuA6092]. This is a technical study relevant to previously-reported work with "a natural lignin from pine cone, and synthetic lignins from caffeic acid, ferulic acid, and p- coumaric acid," which were described as potent antiviral agents in laboratory tests in certain cells. * "Antiviral Action of Polyadenylic-Polyuridylic Acid Against HIV in Cell Cultures; Synergistic Effect with AZT," Anne Laurent-Crawford and others, Institut Pasteur and Laboratoires Beaufour, Paris [PuA6095]. This drug, commonly called poly(A)poly(U), has been used in long-term cancer treatment with no toxicity observed, according to the abstract. Poly(A)poly(U) showed anti-HIV activity, and also made AZT work more effectively, in laboratory tests. The drug also stimulates natural killer cells and other components of the immune system. Like AZT, etc., it has no effect on chronically infected cells; it seems to work by preventing viral entry, so it would not help with cells that are already infected. For More Information For those who did not go to the conference and want to look further into some of the work mentioned here, the best way is to borrow the abstract volumes, or get copies of the abstracts of interest, from someone who went to the conference. Perhaps you can locate a set through a local AIDS organization or a specialized library. A few copies may still be available for purchase, but they cost $150 for the set -- for fifteen hundred pages of technical material reduced in size to tiny, hard-to-read type. (If photocopies are made, it is helpful if they can be enlarged, especially if they will then be sent by fax.) This conference, for the first time, asked researchers to include their phone and fax numbers at the bottom of each abstract, so it is possible to contact them for more information. We find that fax works better than calling when there is a large time-zone change and/or a language barrier (since it is easier to find someone who can read a language than to have a speaker available whenever a call might come in). ***** What Could the White House Do to Fight the Epidemic? By Nancy Solomon Michelle Roland, a medical student at the University of California in Davis and an AIDS activist, was the only one who noticed. While reviewing research proposals for clinical trials for a pre-cancerous cervical condition in HIV-positive women, she discovered two similar studies under review by two separate committees of the AIDS Clinical Trials Group (ACTG) at the National Institutes of Health. Not only are the studies an inefficient use of resources in the federal research program on AIDS, but the duplication means that each study would compete for enrollment, causing both studies to have low participation and fail to prove anything, Roland says. She has been raising this issue for almost a year, but has not found enough willingness from the different committees of the ACTG to coordinate research. "That's a microcosm example of the problem -- but the problem is much, much larger," Roland says. "If there isn't sufficient coordination within the ACTG itself, we can't expect coordination at any other level...I get calls from clinical scientists at the NIH who ask me what the basic scientists are doing down the hall." She has tried to force the issue in one area of research, Kaposi's sarcoma, and has walked into brick walls. "I've just tried to get Sam Broder of the National Cancer Institute and Tony Fauci of the National Institute for Allergy and Infectious Diseases to sit down in the same room together and tackle the tremendous challenge of planning and coordinating research," she says. Roland's criticism is backed by many researchers and leaders in the fight against AIDS who say that research is undermined by competition, the building of fiefdoms, and lack of coordination and an overall strategy. Furthermore, AIDS prevention strategies are ineffective because government health leaders refuse to talk directly about sexual transmission of HIV. And funding for direct services and health care continues to be slashed at both a federal and local level. Responsibility for this quagmire, they say, lies at the door of the White House where first President Reagan and then President Bush showed no interest in stopping the AIDS epidemic. People with AIDS and those fighting the epidemic agree that the Republican administrations over the 11 years of the epidemic have failed to properly address AIDS. With the possibility of a change at the White House come January, AIDS TREATMENT NEWS recently asked community leaders, researchers and activists what exactly they would want from a president who cares about AIDS. Proposed Infectious Disease Emergency Act of 1993 Terry Beswick of the Human Rights Campaign Fund, the largest lobbying group representing the needs of gays, lesbians and people with AIDS, has written a plan for a White House response to the epidemic. He is calling for an Infectious Disease Emergency Act of 1993 that would dismantle the present bureaucracy and replace it with a coordinated system. That system would have clear lines of authority and communication from the president, and a national management plan that would establish a definitive division of labor among all federal agencies involved in AIDS work, eliminate duplication and inefficiency, and ensure that necessary work is undertaken. His plan, and the suggestions of many others, require that AIDS be de-politicized to the extent that efforts to stop the spread of HIV, care for the ill, and conduct research be driven by principles of public health and science. Beswick is circulating a 19-page draft of the plan for input from people with AIDS, activists and community leaders. So far, he has received support. (He can be reached at the Human Rights Campaign Fund, 202/628-4160. AIDS Czar "We can't conceive of the power of the president because we've never had it," says Paul Boneberg, director of Mobilization Against AIDS in San Francisco. "A new president could get the funding, he could double the NIH budget. It changes to what level of a champion do you have versus what level of an opponent." Boneberg is among the many who are calling for an "AIDS czar" -- a cabinet-level coordinator of the federal response to AIDS who would have the ear of the president. The White House must also commit to adequate funding for research and health care and to legislative reforms that could change the Centers for Disease Control restrictions on HIV education, the immigration ban on people with HIV, and procedures of the Food and Drug Administration. Replacing Political Appointees He also advocates replacing some of the existing AIDS bureaucracy. "Everyone agrees that there are many people there principally for their political views, not for their medical expertise," Boneberg says. Leading his list are the top three men in the federal health administration: Secretary of Health and Human Services Louis Sullivan, his undersecretary and right-hand man, James Mason, and the director of the Centers for Disease Control, William Roper. All three are Republican political appointees, and Mason and Roper have connections to conservative Senator Orin Hatch, R- Utah. Mason bared his philosophy on AIDS in the March 1992 issue of Medicine & Health, where he was quoted as saying "there are certain areas which, when the goals of science collide with moral and ethical judgement, science has to take a time out." Mason's spokesman is quoted in the same article as saying "When you're fighting a fire, you control it from the outside and let the center burn. The same holds true for medicine." Mason was promoted from his post as head of the Centers of Disease Control during the 1980s, when the federal agency failed to stop the spread of HIV. A senior AIDS researcher, who spoke with unusual candor about the federal research program under the condition of anonymity, agrees with Boneberg's assessment. "The White House should appoint a Secretary of Health who is knowledgeable in science, not just a guy who has a medical degree," he says. "There's no central coordination at the NIH. God knows there's no coordination at the Centers for Disease Control. We don't have a national program," the AIDS researcher says. "If you go out through the states you'll see there's no consistency about AIDS prevention. In North Carolina, students get prevention from English teachers. Most of them can't say the word penis without blushing. To talk about condoms drives them nuts. This ultimately comes back to the CDC and that ultimately comes back to James Mason...He's going to make absolutely sure that nobody talks dirty during the Bush Administration." The AIDS bureaucracy grew without any overall plan, strategy or structure, he says, and its history is marred by opportunism, competition and careerism. "The whole process has been slowed down by opportunists." Leadership Is Paramount Derek Hodel, who started the PWA Health Group, a New York City buyers club, and now works with the AIDS Action Council in Washington, says the question of leadership is paramount to untangling the mess that has become the government's research program on AIDS. "There is precious little in authority that guides research across the institutes," he says. "A cabinet- level post would send a signal that this is a serious issue." He likened the need for coordination, strategy and commitment to the way the White House runs the military. "The air force, army and navy all work in collaboration," Hodel says. "We need a triple track message: research, prevention and care." That triple track was also discussed by Dr. Mervyn Silverman, president of the American Foundation for AIDS Research, who suggested an AIDS czar to coordinate a national plan to fight the epidemic. That person should have the expertise necessary to direct the research program as well as a public health program willing to use explicit language to prevent the further spread of HIV. "It will come from an administration that is compassionate and understanding." In a report released in July, the Treatment Activist Group, a splinter group of ACT UP/New York, calls for a doubling of the NIH budget, a line-item in the federal budget for AIDS research, and the authority of the Office of AIDS Research to reallocate funds across institute lines. In a foreword to the report, Larry Kramer sums up TAG's conclusions. "The AIDS plague is utterly and completely devoid of leadership," Kramer writes. "At the NIH, no one is at the center, nothing is coordinated, no one is asking the life-saving (and money-saving) questions: what is missing from our efforts, what is being duplicated, why are we being forced into competition with our own fellow institutes right here on our own campus, when budgets are shrinking and shrinking?" Comment This article attempts to further the necessary debate about what we would want from a White House that is not hostile to people with AIDS. We felt that our readership could benefit from this kind of discussion rather than a comparison between the policies of George Bush versus Bill Clinton. We hope this article will encourage thinking about what we need from government. Asking only for more money will signal that we are not doing our jobs: The federal response to the AIDS epidemic must change in many significant ways in addition to an increase in funding. We are more optimistic than at any time since the emergence of HIV that a new administration in the White House will address AIDS. The question is, will we be ready to harness the power of the presidency to end this epidemic? ***** Announcements ** Political Funeral at White House, October 12 ACT UP/New York is coordinating a political funeral at or near the White House on Columbus Day, Monday, October 12 (the day after the October 9-11 display near the White House of The Names Project AIDS Memorial Quilt). This funeral was organized after David Robinson, of ACT UP/Golden Gate in San Francisco, decided to bring his lover's ashes to the White House on that day. Persons from across the U. S. are invited if they (1) have ashes they want to bring, (2) do not have ashes but want to march (there will be a procession); or (3) want to send ashes but cannot come themselves. The group also hopes to encourage similar actions at other times and places, for example at campaign appearances of President Bush. Although this political funeral is separate from The Names Project events of the previous days (see below), it has been endorsed by Names Project founder Cleve Jones. The procession is tentatively set for 2:00 p. m., although arrangements are still being worked out. For more information, persons should call Eric Sawyer at ACT UP/New York, 212/564-AIDS, or at home, 212/864-5672, or write to: ACT UP/New York Columbus Day Project, 135 W 29th St., New York, NY 10003. Or call David Robinson, 415/252-7401. Note: This is not a project of Stumpf/Kane (see "Political Funerals: Activist Organization Formed," AIDS TREATMENT NEWS #157, August 21, 1992), although the groups are working together. Stumpf/Kane has focused so far on the New York area, while the October 12 event was initiated from San Francisco and will have a national focus. ** ACT UP White House Demonstration Noon October 12 ACT UP/DC is planning a Columbus Day demonstration at the White House two hours before the political funeral; the two events are separate. Organizers hope that the earlier demonstration, called Hands Around the White House, will have at least 4,000 people, enough to link hands around the entire White House. For more information, call ACT UP/DC at 202/328- AIDS, or come to the White House on October 12 at noon. Cleve Jones, founder of the Names Project, which is organizing the display of the AIDS Memorial Quilt in Washington on October 9-11, has endorsed Hands Around the White House and plans to attend. ** The Names Project AIDS Memorial Quilt Washington, D. C., October 9-11, 1992 On October 9-11 the Names Project AIDS Memorial Quilt will be displayed on the Washington Monument grounds. This major display and the associated events, ceremonies, and conferences could draw 300,000 people. Cleve Jones of The NAMES Project noted, "the display is several weeks before critical U. S. elections, when the spotlight is on the President and members of Congress. This mobilization ...will ensure that AIDS is remembered as part and parcel of American and international agendas." The Quilt, the size of ten football fields, contains 20,000 panels -- representing 13 percent of U. S. AIDS deaths and two percent of AIDS deaths worldwide. Panels from 17 NAMES Project initiatives from around the world will be included in the display. For more information about the October 9-11 events, call The Names Project, 415/863-5511. ** Hurricane Andrew Relief for People with AIDS The PWA Coalition of Dade County, Florida urgently needs contributions of money, medications, and nutritional supplements to help meet the special needs of people with AIDS, which the mainstream disaster relief is not able to handle. Homes and physicians' offices have been destroyed, and many hospitals are closed or full. Contributions can be sent to PWA Coalition -- Dade County, c/o Berne Teeple, 175 N. E. 36th St., Miami, Florida 33137. For information, phone 305/573-6010. ** Rifabutin for MAC Prevention: FDA Hearing September 24 The Antiviral Drug Products Advisory Committee (a panel of outside experts to advise the U. S. Food and Drug Administration) is scheduled to meet September 24, 8 a.m. to 1 p. m. at the Marriott Hotel, 620 Terry Parkway, in Gaithersburg, Maryland. At a previous meeting, the committee did not vote to recommend approval, despite two well-controlled trials which showed that the drug prevented about 50 percent of the cases of MAC in patients with T-helper cells under 200. Few AIDS activists knew about the earlier meeting; some are now concerned since this is the only drug proven to prevent MAC. While another drug, clarithromycin, has greatly improved the treatment of this disease, resistance to it develops in some cases. Rifabutin is currently accessible under an expanded- access program, but approval would make it more generally available (and might also facilitate research in combination use with clarithromycin and other drugs for MAC treatment). The drug might also be useful in treatment of tuberculosis. For more information about AIDS community concerns with this drug, call Lynda Dee, 410/332-1170. ** In Memoriam: Ron Woodroof Ron Woodroof, founder of the Dallas Buyers' Club, died on August 15, 1992. He had been diagnosed as HIV-positive, with a T-helper count of nine, in 1986; physicians gave him six weeks to live. In 1987 Woodroof was a leader in a class-action suit to obtain AZT for persons with AIDS who were treated at Parkland Hospital in Dallas. Later he became knows as the "cowboy smuggler," opening the Dallas Buyers' Club in 1988; the organization eventually assisted 3,000 persons with AIDS or HIV to obtain non-approved drugs such as peptide T. His group was perhaps the most radical of the buyers' clubs. Jim Campbell, a former executive director, has started a new buyers' club, DBC Alternatives, also in Dallas, to continue Woodroof's work. A memorial service is planned for September 12 at 5:00 p. m., at the AIDS Memorial Tree in Lee Park, in Dallas. ***** 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. 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