Subject: AIDS Treatment News #102 Date: May 12 1990 (1043 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& copyright 1990 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS Issue # 102, May 4, 1990 CONTENTS: [items are separated by "*****" for this display] San Francisco AIDS Conference and Related Events: Issues and Update Proposal: Computerized International Publication of AIDS Research Results Hemophilia and HIV: A Double Challenge Announcements: ddI users group; MAI drug now available for injection; Seattle Treatment Exchange Program; Annual AIDS Candelight Memorial date change SAN FRANCISCO AIDS CONFERENCE, RELATED EVENTS: ISSUES AND UPDATE by John S. James The Sixth International Conference on AIDS, the largest scientific meeting on AIDS in 1990, will take place June 20-24 in San Francisco, at the Moscone Convention Center and at the Marriott Hotel one block away. A number of related events -- some officially connected to the International Conference and some not -- are also scheduled in or near that time. And two related international meetings originally planned for San Francisco -- of the International Red Cross and of AIDS-related non-governmental organizations -- have been rescheduled and moved elsewhere, because U. S. travel restrictions make it difficult and potentially dangerous for HIV-positive participants to enter the United States. This article provides an overview and calendar of the Sixth International Conference, the international boycott by dozens of organizations because of the travel restrictions, and the many related conferences, educational meetings, marches and demonstrations, art events, video coverage plans, and other activities planned to coincide with the Conference. We also address the unmet needs for international communication on AIDS, needs requiring improvements in the annual International Conference in the future, and we propose a computerized system for peer-reviewed publication of scientific and medical findings. The Travel Ban and the Boycott The law barring HIV-positive persons from entering the United States was passed by Congress in 1987. In April 1989 the ban gained international attention when Dutch AIDS educator Hans Verhoef was jailed in Minnesota, while attempting to change planes to attend an AIDS conference in San Francisco. (Months before that incident, however, Canadians had been prevented from entering the United States to seek medical treatment for AIDS. At least one earlier incident made front-page, headline news in Canada but was unknown in the United States as it was not reported in any news media here.) In May 1989 the U. S. Immigration and Naturalization Service (INS) instituted a 30-day waiver to allow HIV-positive persons to enter the United States for certain purposes, including to attend conferences, obtain medical treatment, or visit family members. The waiver process was burdensome, however; a San Francisco law firm published a 62-page guide on how to apply. And there was no protection for confidentiality, as a code known to border agents throughout the world would be stamped in the visitor's passport, leading to risk of discrimination by other countries. In September 1989 the UK Hemophilia Society wrote to all member organizations of the World Federation of Hemophilia that it could not participate in the August 1990 biannual hemophilia conference in Washington, D. C. because of the entry ban. A separate boycott of the Sixth International Conference on AIDS includes 79 organizations, as of May 4. The list is too long to reproduce here, but just the 'A' section of the alphabetical list gives a sense of the organizations involved: Action AIDS (UK), Action Health 2000 (Britain), AHRTAG (UK), AIDES Solidarite Plus (France), AIDS Action Council of New South Wales, AIDS Interfaith Network, AIDS Linean (Denmark), APARTS Solidarity Plus (France), Australian Federation of AIDS Organizations (AFAO), and Austrian AIDS Help. Other boycotting organizations include the International League of Red Cross and Red Crescent Societies, the British Medical Association, and the European Parliament. Due mainly to the boycott and to pressure from the organizers of the Six International Conference, the U. S. Government twice made changes in the waiver procedure. First, it allowed the visa to be stamped on a separate piece of paper instead of the passport (only if applicants request that), a system modeled on that used by Israel for travelers who do not want to be barred from entering Arab countries. Later, the White House announced that instead of the 30-day HIV waiver, visitors could request a special 10-day waiver which would not require them to state that they are HIV-positive. These 10-day waivers are available only for the AIDS and hemophilia conferences, and for any future conferences which may be specifically approved as "in the public interest" by the U. S. Department of Health and Human Services. No "record of ineligibility" will be created by use of the 10-day waiver, and the U. S. State Department assured the Sixth International Conference that use of a ten-day visa will not affect later entry into the United States. (Either the 10-day or 30-day visa is required from HIV-positive visitors even if they would not otherwise need any visa.) The National Association of People With AIDS has maintained a list of boycotting organizations, and no group to its knowledge has withdrawn from the boycott because of the new 10-day visa option or other administrative changes. A bill was introduced in Congress to give the U. S. Centers for Disease Control (CDC) the authority to repeal the travel ban -- an authority it has for all diseases except HIV, which alone was added to the list by Congress -- but the White House refused to support the bill, so it is not expected to pass in time for the Sixth International Conference. Lawyers disagree on whether the White House has the authority to allow the CDC to remove the ban without an act of Congress. The Sixth International Conference has written a five-page letter to all Conference participants registered from outside the United States, to explain the current visa situation and requirements for HIV-positive persons planning to attend. For example, for the 30-day waiver applicants must show evidence that they can pay for emergency medical treatment if needed in the United States (so that there can be no cost to the government), while for the 10-day waiver applicants should be prepared to present proof of their intent to attend the Conference. Application for the 30-day waiver should be made at least 30 days in advance, whereas the 10-day waiver should be applied for two to four weeks before beginning travel. Obviously we cannot safely summarize the letter; persons who need a copy should contact the Sixth International Conference at 415/550-0880. The Conference has also organized a panel of volunteer attorneys to assist anyone seeking to attend who is detained at the border because of HIV status. The toll-free number for this legal referral panel is 1-800-933-0120, 24 hours a day, at the time of the Conference. Callers are advised that many pay phones do not receive incoming calls; they must leave a number at which it will be possible for someone to call them back. Comment: Entry Restrictions and the Boycott AIDS TREATMENT NEWS is often asked if we are boycotting the Conference. As press, we must cover the news -- the Conference, and the boycott, too. We completely respect both positions, to attend or to boycott; people and organizations differ in how they can best serve in the common effort against AIDS. The boycott is not like a strike, intended to shut the Conference down; no one wants to do that. The boycott's main purpose, beyond bringing pressure to change U. S. policy, is to make the statement that the entry restrictions are unacceptable, and here it has succeeded. The worldwide revulsion against a policy based solely on bigotry and not at all on public health, a policy which damages international action against the epidemic for no benefit to anyone, has been critically important in preventing a stampede of retaliatory border restrictions which would have increased discrimination against persons with HIV and greatly impeded international action against the epidemic. Note that of the two largest ACT UP groups in the world, one is attending the Conference (ACT UP/New York) and one is boycotting (ACT UP/San Francisco). Of the two largest AIDS service organizations in San Francisco, one is attending (San Francisco AIDS Foundation), and one is boycotting (Shanti). The American Red Cross will attend the Conference, although it has strongly opposed the HIV entry restrictions; the International League of Red Cross and Red Crescent Societies is boycotting. In either choice, one has good company. The question is not who is right, but how each can help in the overall effort. Scientific Program Published: Half of Abstracts Rejected In a major departure from the earlier conferences in Montreal, Stockholm, and elsewhere, organizers of the San Francisco conference rejected half of the 4,900 abstracts submitted -- about ten times as many as were rejected at Montreal -- "to assure the highest quality presentation at the Conference." The Conference announced the rejection of over 2,000 submitted abstracts in a news release dated April 25. Because the rules allowed each person to be the presenting author of only a single abstract, it is clear that the work of over 2,000 different people was rejected (see "Comment" section, below). The rejected abstracts will not be made public, and most are expected to be permanently lost. The accepted abstracts were divided into three basic categories: oral presentation, poster presentation, and publication-only. The most valued papers were usually given one of several kinds of oral presentations: a 20-minute slot in one of two concurrent plenary sessions from 8:00 to 10:30AM; a place in a poster- discussion panel during the poster-viewing session from 10:30 to 1:00 PM; or a 15- or 20- minute slot in one of eight concurrent oral sessions from 1:00 to 3:00 PM, or from 3:30 to 5:30 PM. Each day the two concurrent morning plenary sessions focus on "State of the Art" and "Science to Policy." All the other presentations (oral or poster) are divided into four tracks: Basic Science (track A), Clinical Science and Trials (track B), Epidemiology and Prevention (track C), and Social Science and Policy (track D). Some of the accepted abstracts not selected for an oral presentation will be shown as posters; hundreds of posters will be displayed each day. Authors are asked to be at their posters at certain times, so that anyone interested can meet them to discuss their work. All abstracts considered for the Conference had to arrive by January 22, and their authors cannot change them before they are published in the book given to everyone attending; the published abstracts are therefore five months old when participants receive them. But the posters themselves can include whatever their authors want, so they can be changed right up to the day of presentation; information often appears on posters which is not available anywhere else. For the oral sessions, tapes can be purchased from the Conference; but to quickly gather new information from the posters, some people bring cameras, or tape recorders which they dictate into. Many abstracts were accepted as "publication only," meaning that they only appear in the abstract book, but are not scheduled for oral or poster presentation. Unfortunately the abstract books themselves will not be available in advance of the Conference. As with the previous international AIDS conferences, a major practical problem will be lack of time to read or scan the abstracts and select which posters to seek out. It is advisable to pick up registration material early, to leave more time to examine abstracts before the meetings start. Titles of oral sessions, and of categories of posters (but not of the individual poster presentations themselves) are available in an advance program released to the press. We plan to summarize highlights in coming issues. But press cannot examine the accepted abstracts or their titles until the Conference begins -- or the rejected abstracts ever. What Was Rejected? Since the Conference will not say what abstracts were rejected, we can only report what we have heard from informal networking. As we go to press we have heard of five papers rejected: * The hypericin observational study by the Community Research Alliance (also reported in AIDS TREATMENT NEWS February 2, 1990). This study followed 33 volunteers from baseline through four months' use of an herbal extract containing hypericin, one of the most important potential new antivirals, under a protocol providing the same blood tests and other data gathering used in most clinical trials. There was no control group. This research, organized by people with AIDS, reported human efficacy results at least a year ahead of those of any academic, government, or industry study of this treatment. * A report on the effect of publication delays on AIDS research. The author investigates new treatments for a major AIDS research organization. * Experience with providing research-nurse support to help physicians conduct AIDS treatment research in their practices. The author, a research nurse, does just that. * An improved antibody test which shows unexpected fluctuations in antibody levels during the course of HIV disease, with possible clinical implications. This report was initially rejected; the author asked for reconsideration, and the abstract was finally accepted for publication only (no poster or oral presentation). * Our own abstract on AIDS TREATMENT NEWS and the unmet communication needs in the epidemic. The Sixth International Conference organized international panels of hundreds of reviewers to rate the 4,900 abstracts submitted. But we have heard from two people involved later in the decision-making process that the work of the reviewers was often disregarded, with final decisions depending on politics and on who was known to those making the decisions. It is harder to judge abstracts than to judge longer reports, because so little information is available. Reviewers are forced to base decisions on the credibility of the authors, to the disadvantage of authors not known to them. The rejected abstracts are expected to be lost permanently. The Conference cannot publish them later or give them to anyone else to do so, because it only has permission from the authors to provide them to the Conference delegates. Members of a community task force set up by the Conference can view the rejected abstracts and write to selected authors to request permission to publish their work elsewhere, but there is little chance that this system will prove workable. Comment: Rejected Abstracts We question whether anyone knows enough about AIDS today to justify taking half of the work submitted to the major scientific conference of 1990 and making it unavailable to the public. No one can be sure about what will be important later. The above examples of rejected work are not reassuring. What could still be done would be to allow those attending the Conference to purchase the rejected abstracts -- or at least to place an order there for later delivery. This plan would not exceed the authority of the Conference organizers to make submitted abstracts available to participants. It would be administratively possible, since the only action needed in the hectic final weeks before the June meeting would be to insert an order blank into the packets of materials to be given out. And there would be no additional expense, as costs would be paid by the purchasers. But this or any other resolution to the vanishing-abstracts problem will require public pressure, as there is a conflict between the interests of the Conference organization and the interests of the public. The public interest is best served by having the over 2,000 abstracts somehow available. But keeping the rejected papers secret avoids possible criticism of the organization, by obliterating over 2,000 specific cases in which its decision might be questioned. If the Conference organizers will not make the concealed abstracts available, then efforts will continue to contact as many of their authors as possible and offer to publish their work in a separate volume (suggested title: AIDS Apocrypha). In addition, those rejected abstracts which can be found could help to provide the nucleus of an international AIDS computer conference which could provide instant, peer-reviewed publication of scientific, medical, and other AIDS developments every day of the year, throughout the world. (See "Proposal: Computerized International Publication of AIDS Research Results," below.) Satellite Meetings and Conferences The following events are satellite meetings of the Sixth International Conference on AIDS. In almost all cases, however, they were organized independently, and the Sixth International Conference is not a co-sponsor. Organizations boycotting the Sixth International Conference do plan to participate in some of these. For more information about any of these meetings, call the contact person listed. * Community Outreach Sessions of the Sixth International Conference on AIDS, June 20-23. Contact Mr. Mike Shriver, 18th Street Services, San Francisco, 415/861-4898. (For more information, see "Community Outreach Sessions," below.) * AIDS and Ethics: The First International Conference, June 24- 27. Contact Conference Coordinator, Bioethics Consultation Group, Berkeley, CA, 415/486-0626. * 2nd Annual AMA HIV Conference: Counseling, Testing, and Early Care, June 18-19, 1990. Contact Dr. John Henning, Office of HIV/AIDS, American Medical Association, 312/645-4566. * Community-Based Clinical Trial Network (CBCTN) Meeting, June 19. Contact Mr. Ron Goldberg, American Foundation for AIDS Research, 212/719-0033. * Collaborative Clinical Studies on AIDS and HIV Infection, June 19. Contact Dr. John Mills, San Francisco General Hospital, 415/821-8666. * AIDS/HIV Nursing: Learning from the Past...Envisioning the Future, June 19. Contact Ms. Angie Lewis, RN, MS, University of California San Francisco School of Nursing, 415/476-4455. * AIDS '90: The Social Work Response -- The Second International Conference on Social Work and AIDS, June 16-19. Contact Dr. Vincent Lynch, Boston College Graduate School of Social Work, 617/552-4095. * Gay Men of Color AIDS Institute, June 25. This one-day workshop of panel discussions is designed for AIDS/HIV treatment or prevention service providers to gay and bisexual men of color. Contact Reggie Williams, National Task Force on AIDS Prevention, 415/255-8378. * First International Invitational Conference on AIDS and Homeless Youth: An Agenda for the Future (invitation only), June 25. Professionals attending the Sixth International Conference who work with street youth outside of North America should forward a letter of interest and resume to: Ms. G. Cajetan Luna, Conference Chairman, Mount Zion Hospital and Medical Center, 1600 Divisadero St., San Francisco, CA 94120, USA, phone 415/885-7533. * International AIDS Society General Meeting, June 23. Contact Dr. Friedrich Deinhardt, Max V Pettenkofer Institute, Munich, phone 89 5160 5200-5202; fax, 89 5380584. * Neurological and Neuropsychological Complications of HIV Infection, June 16-19. Contact Dr. Joseph Berger, University of Miami Medical School, 305/547-6732. * Oral AIDS Research: Clinical and Laboratory Skill (invitation only), June 18-19. Contact Ms. Carol Neuman, School of Dentistry, University of California San Francisco, 415/476- 2169. * Current Therapies and Future Strategies in the Management of HIV-Related CMV Infections, June 19 (sponsored by Syntex Laboratories, Inc.) . Contact Ms. Edna Faulk, Pro Health Communications, San Francisco, 415/788-2464. * The Challenge of Combination Antiviral Therapy, June 20 (sponsored by Roche Laboratories). Contact Ms. Deborah Rachlin, Triclinica Communications, New York, 212/698-4084. * Fluconazole: Management of Fungal Infections in People with HIV Disease, June 22 (sponsored by Roerig, a division of Pfizer Pharmaceuticals). Contact Ms. Ellen Kash, World Health Communications, New York, 212/679-6200. * Display of the AIDS Memorial Quilt, June 21-24. Contact the NAMES Project, San Francisco, 415/863-5511. * A Celebration of Life Worship Service and Networking Fellowship Reception, June 21. Contact Mr. Bob Elkins, 415/861- 5690. * Gospel Artists Against AIDS, June 23-24. Contact Rev. Yvette Flunder, An Ark of Love, Oakland, California, 415/482- 1288. * Exhibit on AIDS at the Exploratorium, June-August 1990. Contact Deborah D. Raphael, AIDS Project Coordinator. For Exploratorium information, call 415/561-0360. * Searching Online for AIDS Information, June 20, 1990. Contact Ms. Ginny DuPont, U. S. National Library of Medicine, 301/496- 6193. * Interactive Global Teleconference -- San Francisco, June 1990. Contact Mr. Johan Almquist, Interactive Events Ltd., Sweden, fax: 46-171-70545. Community Outreach Sessions: Speakers Include Montagnier, Fauci, Mann, Osborne These evening and Saturday meetings, free and open to all, are sponsored by the Sixth International Conference on AIDS. Speakers will give five to ten minute presentations, then be questioned by a panel of experts and by the audience. Sessions will be held at the Herbst Theater, 401 Van Ness Avenue. The sessions and scheduled speakers are: * "The Global Impact of AIDS," Wednesday (June 20), 7-10 PM. Speakers include Jonathan Mann, Rafael Pagan, Ishmael Bangura, Amy Pascual, and Ferenc Sebastien. * "Barriers to Outreach," Thursday 7-10 PM. Speakers include June Osborne, Mary Goulart, Virginia Schubert, Moher Downing, Beatriz Pestana, and Reggie Williams. * "Treatment, Research, and Clinical Trials," Friday 7-10 PM. Speakers include Anthony Fauci, Luc Montagnier, Ellen Cooper, and Mindy Fullilove. * "The Political Stuff of HIV Disease," Saturday 2-5 PM. Speakers include Paul Boneberg, Jean McGuire, Martin Delaney, William Roper, and Larry Kramer. For more information about this program, call Mike Shriver, 18th Street Services, San Francisco, 415/861-4898. Alternative Conference on Natural Therapies Seeks Abstracts Rejected by Sixth International Just two blocks from the Sixth International Conference on AIDS, and on the same days (June 20-24), will be a natural- therapies meeting with no official relationship to the International Conference. The Second Annual Advanced Immune Discoveries Symposium (AIDS 90), organized by Laurence Badgley, M. D. and sponsored by the Foundation for Research of Natural Therapies (FRONT), will be held at Le Meridien Hotel, 50 Third Street, San Francisco. Papers rejected by the Sixth International Conference can still be considered for AIDS 90. The International Conference has not released information about the over two thousand abstracts it rejected, but we suspect that work on "natural" therapies (i.e., other than high-tech approaches which interest the major commercial organizations which support academic research) were likely to have been rejected. For more information about the natural-therapies conference, call the Foundation for Research of Natural Therapies, Foster City, CA, 415/349-0718 (fax 415/349-1257). Meetings Moved Due to U. S. Travel Restrictions Two meetings which had been planned for San Francisco have been rescheduled due to U. S. restrictions on HIV-positive delegates: * The Second International Conference of AIDS-Related Community and Non-Governmental Organizations has been tentatively rescheduled to September 24-27, in Paris. For information about this meeting, call Chris Castle, National Minority AIDS Council, 202/544-1076. * A San Francisco meeting of the League of Red Cross and Red Crescent Societies has been cancelled. In addition, a workshop by the American Red Cross to train Hispanic AIDS educators will not be held in San Francisco and may be held later in Mexico. ACT UP Events Each ACT UP (AIDS Coalition to Unleash Power) is an autonomous organization. In addition, a national organization ACT NOW (AIDS Coalition to Network, Organize, and Win) helps to coordinate the local ACT UP groups. The ACT NOW calendar of events is still being put together. Workshops and/or demonstrations are being planned for every day, from June 17 to June 24. Other projects include publishing a handbook for the week, organizing a media center near the Conference site, social and entertainment events, encouraging artists to come to San Francisco with a focus on "instant art" of posters, murals, etc., setting up computer and other links with the newly-formed ACT UP/Amsterdam at the Paradisio Cultural Center, and marching as an ACT UP contingent in the Lesbian and Gay Freedom Day Parade. It is not possible to publish a definitive schedule now, because plans are changing too rapidly. For more information about ACT UP events, contact ACT NOW, phone 415/861-7505 (fax 415/863-4740). Lesbian and Gay Freedom Day Parade The annual Lesbian and Gay Freedom Day Parade and Celebration takes place on Sunday, June 24, the day the AIDS Conference closes. Over two hundred thousand people are expected. The parade leaves at 11:00 AM from Market and Speer Streets (less than a mile from the Conference site), and travels up Market to the Civic Center, for a rally from noon to 6 PM. There will be four stages for speakers and entertainment, plus a disco tent, and 300 vendor booths. For more information, call the Parade Committee at 415/864- 3733. Other Arts Events Many arts events related to AIDS are occurring in San Francisco at the time of the Conference. Shows and/or lectures are being sponsored by or will occur at San Francisco Camerawork, San Francisco Art Institute, Ansel Adams Center, Eye Gallery, and Magic Theater. AIDS films will be included in the San Francisco International Lesbian and Gay Film Festival, from June 15 to June 24. Two major shows -- Witness: Against Our Vanishing, and AIDS Timeline -- will not display on the Conference site because of the boycott; other locations are being sought. Many other arts activities are also being organized. If you know of any event which should be listed in the calendar of cultural events related to AIDS, send a notice to Ken Maley, Media Consultants, Box 330171, San Francisco, CA 94133. Television Broadcast Plans The Sixth International Conference will broadcast a one-hour program each evening (repeated at 8 PM, 9 PM, 10 PM, and 11 PM), reviewing presentations made during the day, providing expert analysis, and including updates on Conference activities. The program will be shown in most Conference hotels, and will also be made available worldwide by satellite. In a separate effort, the Chicago-based Physicians Association for AIDS Care (PAAC) will broadcast a total of 25 hours of programming from the Conference on June 21, 22, and 23. Besides over four hours of programming each day on Conference news, interviews, and speeches, there will be 12 hours on current treatment options for AIDS-related diseases, and on social, financial, and ethical issues raised by the epidemic. The PAAC telecast will be available to any institution with satellite reception capabilities, including cable stations and persons with home satellite dishes. For more information, write to: PAAC, 101 W. Grand Ave., Suite 200, Chicago, IL 60610. Let Us Know The above lists are not complete. If you hear about other events related to the Conference, please contact us at AIDS TREATMENT NEWS, P. O. Box 411256, San Francisco, CA 94141, 415/861- 2432. ***** PROPOSAL: COMPUTERIZED INTERNATIONAL PUBLICATION OF AIDS RESEARCH RESULTS by John S. James Despite the annual international conferences on AIDS, serious obstacles impede the rapid dissemination of research information. For example, the abstracts published at each Conference are due in January but not available to the public until five months later. Each Conference casts a shadow ahead during this five-month period; as the June meeting approaches, researchers become less and less willing to talk about their results. (Part of the problem here is the language on the abstract submission forms. Technically it does not require authors to avoid publishing their work during the five-month interval before the Conference, but the language does suggest such a requirement, and most researchers have interpreted it that way.) And aside from the Conference, the mechanics of journal publication usually delay information sharing for months, often for over a year. Two years ago, organizers of the international AIDS conference in Stockholm had a "computer conference" system running at the meeting. Intended to provide international communication and publication for AIDS researchers, this system ran on a computer in Sweden but could be accessed internationally. However, we found that it was difficult for persons without academic affiliation to reach the Swedish system from a home computer in the United States. It may be less difficult today. (Note the International Global Teleconference now being organized in Sweden; it is listed above at the end of "Satellite Meetings and Conferences.") How can we combine the need for selecting, editing, and peer review with the desire for an open system which avoids censorship by old-boy networks and narrow viewpoints? Here computerization can provide a unique advantage. Almost any abstract submitted could go onto the system; but also, expert referees, usually known to the system's users, would mark those abstracts which they considered interesting. These reviewers would usually be leading physicians and scientists, but they could also include representatives of grassroots organizations like ACT UP. Referees could make new recommendations, or cancel their previous ones, at any time. System users could choose the referees whose judgment they trusted, and then have the computer ignore all abstracts not recommended by any of them. (Users could also choose to ignore the referees entirely and look at any abstracts.) How would the referees have time to look at all the abstracts, when thousands would eventually be submitted? They would not need to. Instead, the authors of new abstracts would be responsible for bringing them to the attention of those referees whose approval they wanted. Improvements could be negotiated, as is done with conventional peer-reviewed journals today. Authors could publish a rough draft immediately, then revise it later to obtain referee endorsements. This "instant peer review" provides the benefit of traditional refereed journals, while completely eliminating the publication delay which is their major disadvantage. It provides selectivity without censorship, by allowing readers to choose exactly whose selectivity they want. Many medical and scientific journals which otherwise demand an exclusive from their authors will now allow publication of abstracts at scientific conferences, without ruling the work ineligible for formal publication. (Otherwise scientists would be reluctant to submit work to the International Conference on AIDS, for example.) This precedent should allow researchers to publish an abstract on a "computer conference," too. For this system to work, it needs software which is easy to use. We frequently use online research databases, and we have found that two commands -- FIND and PRINT -- would be enough for all but advanced users. For example, a typical search might be FIND AZT AND DDC which would immediately print the titles of all abstracts which contained both those words, starting with the most recent. Beside each title would be a sequence number. Then PRINT (followed by sequence numbers) would print the full abstracts corresponding to the sequence numbers selected -- or PRINT by itself, with no sequence numbers, would print them all. Anyone could learn this software in minutes. Yet these two commands would be powerful enough to provide convenient access to databases containing tens of thousands of abstracts. Such a system would provide instant publication and communication, at all times and in all countries. The instant peer review with customized selection of referees by the reader, which we described above, would allow the same system to serve researchers, practicing physicians, AIDS activists, educators, legal experts, and others, giving each group its own view of the data, while allowing anyone to experiment with other views if they want. It would be like a permanent International Conference which anyone could attend at any time, without leaving their home or office. Many components of such a system already exist; there is no need to re-invent them. The purpose of this article is to give one picture of how a useful computer publication system could work. If you can help with computer publication and communication, write to us at AIDS TREATMENT NEWS, attn: computer conference. ***** HEMOPHILIA AND HIV: A DOUBLE CHALLENGE by Denny Smith Before the current policies for screening HIV in blood supplies were instituted, many people were exposed to the virus through intravenous transfusions of blood or blood products. People with hemophilia routinely need certain blood-clotting components, and so for several years, primarily 1978 through 1985, many were inadvertently put at extremely high risk for acquiring HIV through the public blood supply. Hemophiliacs now represent one percent of all people with AIDS in the U. S., but that equals four percent of people with hemophilia. Another 50 percent, about 10,000 people, are asymptomatic but HIV seropositive. Hemophilia is a blood disorder involving deficiencies in one of two types of the body's coagulation proteins, factor VIII or factor IX. Deficiencies in factor VIII are more common and more serious. While both can be inherited, at least one third of all instances are new genetic mutations. Women who carry the hemophilia genes do not manifest the deficiency, but transmit hemophilia to approximately half of their male children and carrier genes to half of their female children. Men with hemophilia cannot transmit the deficiency to sons, but do transmit carrier status to all their daughters. No matter which individuals in an affected family may carry genes for hemophilia, all members will eventually cope in varying degrees with the disorder. And the enormous prevalence of HIV infection in a community already coping with chronic health concerns has had severe medical and emotional consequences. Physicians Who Have Learned To Balance Both Physicians who follow hemophiliac patients have historically nurtured a close relationship with them. Over a period of years the patient and doctor may meet many times, from controlling a hemorrhage crisis in the emergency room to working out a pain- relief program which avoids anti-coagulants. Obviously, these physicians were destined to become familiar with HIV diagnoses and therapies. We spoke to Brad Lewis, M. D., who cares for hemophiliac and HIV+ patients at Alta Bates Hospital in Berkeley. He described to us ways in which health concerns related to hemophilia can be affected or unaffected by HIV infection. In at least one way, people with hemophilia were better prepared than most to cope with a health crisis -- frequent hospitalizations and intermittent illness were familiar experiences. But for the same reasons, HIV at least doubles the emotional and economic stress on their lives. In terms of the physiological interaction of hemophilia and HIV, Dr. Lewis shared these observations: * For reasons not fully understood, people with hemophilia and HIV are rarely troubled by Kaposi's sarcoma or active CMV infections. * The hemorrhaging allowed by the clotting deficiency frequently causes serious joint pain. AZT appears to exacerbate this pain. * HIV infection is often associated with decreased numbers of platelets, another of the body's clotting agents. This situation, called idiopathic thrombocytopenic purpura (ITP), is distinct from the mechanisms which cause hemophilia, but each can make bleeding caused by the other harder to manage. * Hemophiliacs experience higher rates of liver-related problems, such as chronic hepatitis, resulting from repeated infusions of pooled blood products. Some of the drugs currently used in the treatment of HIV and AIDS are also taxing on liver functions, increasing the danger of toxicity for anyone already coping with liver dysfunction. However, Dr. Lewis notes that while liver enzymes are usually elevated in people with hemophilia, they are also usually stable and not necessarily indicative of progressive liver disease. He noted that monitoring a patient's levels of immune globulin may help predict if their liver abnormalities are stable or deteriorating. (Chronic hepatitis is a serious problem for many hemophiliacs, and often for HIV+ gay men and I. V. drug users as well. Interferon has been studied as a treatment for hepatitis, and for HIV as well. Another substance called glycyrrhizin, currently used in Japan to treat liver disease, is being studied as a possible complementary therapy for a number of conditions involving hepatic dysfunction. AIDS TREATMENT NEWS is now collecting information on glycyrrhizin, which we discussed over three years ago in issue #17, November 7, 1986; the treatment is attracting attention because of new research in Japan.) To improve treatment development for the HIV+ hemophiliac population, Dr. Lewis suggested a few changes in the manner that clinical trials are designed. For one, entry criteria, particularly liver function parameters, could be relaxed for candidates with hemophilia. Additionally, the locations of HIV clinical trials should be expanded to established hemophilia treatment centers, in order to reach potential participants where they already receive healthcare, rather than expecting them to travel hundreds of miles to the nearest ACTG (AIDS Clinical Trail Group) site. Dr. Lewis added that HIV and hemophilia each require specialized care, meaning that patients coping with both need access to medical care which is also familiar with both. Interview: Skip Harris AIDS TREATMENT NEWS interviewed Skip Harris, a Bay Area activist in the HIV community, and president of the local chapter of the Hemophilia Society from 1983 to 1985. He is familiar with each community's concerns, and with the general crisis in U. S. health care. DS: How do you identify yourself in two different communities, Skip? SH: I'm very public about my condition. When I was young, starting about eight years old, we ran blood drives every other year. I was always helping with the publicity for that -- it was so nice asking people for help with something that didn't involve money! DS: How is the hemophilia community dealing internally with HIV -- is there a single consensus or strategy, or many different approaches? SH: There are a variety of strategies; unfortunately the most pervasive that I've seen is one of denial. It results partially from our training. Around 1970 there was a dramatic development in the treatment of hemophilia, when the use of fresh-frozen plasma gave way to concentrates of the missing clotting factor. The concentrate was much more effective, and the medical community then tried to teach hemophiliacs that they could lead a relatively normal life. Well, HIV came along, and many of us found out we were infected. But most people weren't sick, so they went on living a "normal life". It was common then for doctors involved with HIV to say "don't do anything until you're sick," a sentiment easily and unfortunately echoed by doctors dealing with both HIV and hemophilia. DS: Well, since early intervention has proven to be a more effective response to HIV, has that idea found acceptance among people with hemophilia? SH: Yes, our Northern California chapter of the Hemophilia Society, and I believe the New Jersey chapter as well, are very aggressive about getting such information to their members through publications. I feel very fortunate having moved here by chance before the epidemic, and having access to HIV information developed by the San Francisco gay community. I think it's been a leader in the world. Even though it's smaller, it's been much more together, more politically active and involved than those in larger cities like New York or Los Angeles. DS: Do hemophilia communities around the country look to the Bay Area as a model, like HIV communities do? SH: Yes, and not just in HIV or hemophilia, but in health care generally, California is a leader. I'm fortunate to be part of an aggressive push in the local hemophilia community. For example, we reprinted several pages of text from Project Inform's compound Q study. Otherwise, there was no real source of news regarding Q for our members outside of the Bay Area. I know at least one person with hemophilia who has tried compound Q. DS: In light of that, I wonder if the hemophilia community feels included or excluded in terms of HIV research or funding, or news in general. SH: Well, the hemophilia community amazes me in terms of its diversity. People often think of it as a white, middle class disease. But it's an experience just as varied as the world at large in terms of race, color, creed and economic group. DS: How did people respond to the recent "shortage" of clotting factor and the out-of-sight cost of medical care ... particularly the combined costs of clotting factor and HIV treatments? SH: Clotting factor's price makes HIV treatment look like pocket change. We were very angry when the price went up about 600 percent. People are enraged into numbness. The manufacturers tried to come up with all kinds of "pretty" reasons. But as far as I'm concerned, they just did what any drug pusher does to an unruly client -- cut off their supply for awhile, let 'em squirm. DS: It's a dynamic parallel to the profits wrought by Burroughs Wellcome, and Lyphomed, and all the pharmaceutical giants. It hardly seems to matter who their target patient population is; they just try to wring out as much as they possibly, possibly can. What do you think the breadth of HIV treatment knowledge is among people with hemophilia? SH: Not good. Because of conditioning, the system, the doctors. Many hemophilia physicians weren't prepared to deal with HIV, and yet didn't want to give up control of the patients by referring them out. DS: That's an interesting contrast to the many doctors who refer PWA's elsewhere precisely because they won't work with HIV patients. SH: Yes, they've dumped responsibility on some "HIV specialist." But a number of the hemophilia specialists were actually too proprietary to consult an HIV specialist. DS: Now, ten years into the epidemic, do you think the average physician caring for hemophiliac patients is familiar with AZT dosing, or the use of acyclovir, or the approval of EPO and aerosol pentamidine, etc.? SH: Probably most are familiar with AZT and aerosol pentamidine, not necessarily with acyclovir and EPO. DS: If you could make one or two things go in a different direction for people with hemophilia and HIV, what would you want? SH: I'd want much more education disseminated through all the local chapters of the Hemophilia Society...just last year I spoke to a nurse in Chicago who works with hemophilia and who didn't know what aerosol pentamidine was, probably because Cook County wouldn't pay for it. Secondly, the government needs to fulfill a commitment to make treatment available. This year treatment was finally the recipient of some of the giant fundraising benefits. For a long time I found it very disturbing that AIDS prevention was the only idea addressed by those benefits, never AIDS treatment. The Reagan administration's policy toward AIDS very deliberately was to write off those who were already infected. DS: Right, and that hasn't substantially changed. SH: No -- Bush has talked more about treatment but hasn't put his money where his mouth is. I really think the value of coalitions will grow in the future, coalitions of all the communities affected by HIV. DS: When a couple of us from AIDS TREATMENT NEWS attended the national "AIDS and Minorities" conference last August, we sensed very much a common realization that this is not a Black or Latino or gay or hemophiliac problem. If there is any silver lining to the epidemic, it's that people understand they deserve health care, no matter what. Why should someone have to struggle for either clotting factor or AZT? It's stupid. SH: And what happens with health care will make or break this country. ***** ANNOUNCEMENTS: DDI USERS GROUP ORGANIZED IN BOSTON A ddI users group started in Boston may be a model for other groups elsewhere. The Boston group, which has its third monthly meeting next week, provides support and basic information. It is open to persons using the drug or considering doing so. While set up as a service for patients, it has also helped researchers improve their study designs. For more information about this group, call Ray at the AIDS Action Committee, 617/437-6200, ext. 432. MAI DRUG AVAILABLE NOW IN IV FORM Rifampin, an orally administered drug commonly used to treat MAI and tuberculosis, has recently been given FDA clearance for use in an injectable form. The injectable drug could be valuable for people who have difficulty tolerating the oral formulation, and for people whose gastrointestinal tract does not absorb the drug very well. Rifampin is frequently used in combination with other MAI drugs, and it is marketed under the trade name Rifadin. SEATTLE TREATMENT EXCHANGE PROGRAM The Seattle Treatment Exchange Project (STEP) was organized early last year to provide a forum to disseminate the latest information on treatments for AIDS and HIV. Twice a month STEP sponsors community meetings to share treatment news. A quarterly newsletter and several discussion papers are available, addressing such topics as cryptosporidiosis, Kaposi's sarcoma, CMV, oral manifestations of HIV, recombinant CD4, and cimetidine. For more information, call STEP is 206/329-4857. ANNUAL AIDS CANDLELIGHT MEMORIAL EARLIER THIS YEAR: SUNDAY MAY 20 The annual AIDS Candlelight Memorial, held in over 200 of cities throughout the world, has previously been scheduled near the end of May, on the U. S. Memorial Day weekend. This year it is a week earlier, but many people are not aware of the schedule change and may therefore miss the event. Mark your calendar if you want to go; it's May 20 this year. For more information about the Candlelight Memorial, call Mobilization Against AIDS, San Francisco, 415/863-4676. ***** STATEMENT OF PURPOSE AIDS TREATMENT NEWS reports on experimental and complementary treatments, especially those available now. It collects information from medical journals, and from interviews with scientists, physicians, and other health practitioners, and persons with AIDS or ARC. 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. We also examine the ethical and public-policy issues around AIDS treatment research and treatment access. [Obsolete subscription information has been removed. See the latest issues for up-to-date information. -- sysop] &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display