Subject: AIDS Treatment News #191 Date: Jan 21 1994 (992 lines) &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& J O H N J A M E S writes on A I D S &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& Copyright 1994 by John S. James; permission granted for non-commercial use. AIDS TREATMENT NEWS Issue #191, January 21, 1994 phone 800/TREAT-1-2, or 415/255-0588 Contents: [items are separated by "*****" for this display] International Year of Decision: Interview with Paul Boneberg of Global AIDS Action Network Tenth International Conference on AIDS, Yokohama, August 7-12, 1994: Abstract Submission; Scholarship Information New York City, Philadelphia, Pittsburgh, Sherman Oaks, Stony Brook: Important Protease Trial Recruiting Primary HIV Infection, and the Immune Response Computer Access to Treatment Information ***** International Year of Decision: Interview with Paul Boneberg of Global AIDS Action Network by John S. James 1994 will be a watershed year for international AIDS policy. But U.S. AIDS organizations are unaware of what is happening, so they have had no voice in the decisions. To outline some of the major policy issues of 1994, we interviewed Paul Boneberg of Global AIDS Action Network (GAAN). GAAN is a new effort to help AIDS organizations, in the U.S. and other countries, advocate effectively with the AIDS programs of international agencies, and the international AIDS programs of their own governments. GAAN founder Paul Boneberg also founded the San Francisco- based Mobilization Against AIDS, and was its executive director for nine years; recently he left to start GAAN. He is interviewed by AIDS TREATMENT NEWS publisher John S. James, who recently joined GAAN's founding board. James: Why is 1994 an important year for global AIDS programs? Boneberg: In 1994 some of the most significant policy and program developments on global AIDS issues will be decided. In the U.S., the entire foreign-assistance programs are being restructured. And within the United Nations, all the AIDS programs, both within the World Health Organization and beyond it, are being reorganized. Also, the highest level proposal for political action on AIDS has occurred in the recent French call for a world AIDS summit, to take place in Paris in June. And there are ongoing issues of human rights, and also of the involvement of non-governmental organizations (NGOs) in all these processes. 1994 is the year in which AIDS activists can alter the structure of global AIDS programs, and influence global AIDS policy. James: Nothing has appeared in the U.S. press about the U. N. reforms; the AIDS community and the general public have been in the dark. What have you learned so far? What kinds of outcomes are possible? Boneberg: A consolidated program including the World Health Organization (WHO), UNICEF (United Nations Children's Fund), UNESCO (United Nations Educational, Scientific, and Cultural Organization), and UNDP (the United Nations Development Program), will be created. It will involve all these agencies, but be at a higher level; the director will be appointed by the Secretary General, Boutros Boutros-Ghali. They're doing this to resolve conflicts and competition between those agencies. They're also hoping to get the nations of the world to spend more money on AIDS programs. The United States government has led this reform effort. Hopefully it will succeed in creating an improved program, and will increase U.S. support for that program. James: What is known about France's call for the international summit? Boneberg: The French government, the new conservative Prime Minister of France, has shown remarkable political leadership in calling for the highest level summit on AIDS. He is asking the heads of state of the 14 nations that donate the most to global AIDS programs to meet in Paris in June to discuss the global AIDS pandemic and the world's response to it. This will be the highest level AIDS discussion ever. In the United States, we hope that activists will urge President Clinton to attend; or if not the president, then Vice President Gore or Secretary of State Christopher -- and have the U.S. play a leadership role in getting the nations of the world to expand their commitment to global AIDS programs. This is an extraordinary opportunity for AIDS activists. James: Explain the U.S. restructuring of foreign aid -- and how AIDS will be affected. Boneberg: The United States, in the post Cold War era, is moving to direct its foreign aid away from being country specific (if you ally with us against the Soviet block, we'll give you money) to issue specific. Among the issues are concerns such as democratization (which includes human rights), and population control (which includes health). AIDS is both a health and a development issue. This movement from nations to issues is positive, something that will greatly help people who care about issues, such as AIDS, or health, or human rights, in improving U.S. foreign policy. Unfortunately the initial proposal does not discuss AIDS at all. It barely discusses health, and only in the context of population control. And AIDS programs within the State Department have actually been demoted one level. What we need to do is make sure that AIDS, though not now a paramount issue for U.S. foreign policy, is still considered, and is fully integrated into the overall foreign-policy goals of the United States government. That will be decided in a debate in Congress, and in the nation, this year. By the end of 1994, the draft proposal that is now circulating will have been approved by Congress, and the restructuring of U.S. foreign- assistance programs will be completed. James: What is being done to address human-rights concerns around the world for people with HIV and AIDS? Boneberg: This is among the most discouraging issues. Although U.S. activists clearly see the connection between human rights and AIDS prevention, that is not universally accepted. In fact, the U.S. State Department Bureau for Human Rights and Humanitarian Affairs did not actively involve itself in HIV or AIDS issues. And in the U. N., the AIDS reforms that are underway have not involved the U. N. Institute for Human Rights, or the Human Rights Commission. We need to say, to the people who are re-creating global AIDS policies and programs, that the human rights of women, the human rights of lesbian and gay people, the human rights of other people, are critical in the prevention of HIV. For example, if women do not have the minimal human rights to be able to demand condom use during intercourse, then the condom campaigns will fail. There must be inclusion of human-rights experts in the planning of AIDS prevention programs. This is a major goal for GAAN -- and I hope for any AIDS activist dealing with policy in 1994. James: How much press have any of these received in the U. S. ? Boneberg: None. There has been minimal press on the Summit. There's been nothing at all on the U. N. programs. There's been minimal press on the foreign aid revision, but nothing AIDS-specific. And nothing on AIDS human rights concerns. James: Can you give us an example of how international policy affects the discovery of new treatments? Boneberg: Some of the most important drugs in history have been discovered in plants. Often they are first found by traditional healers. Sometimes they are discovered through screening programs run by governments or by private companies. Today, with the Biodiversity Treaty, many countries are beginning to insist on receiving an equitable share of the profits from plants and from plant genes discovered in their territory. We have no problem with that. But there are concerns that negotiation delays, political conflicts, or bureaucratic gridlock could seriously delay important drugs. If this happens, everyone involved will lose -- and many could lose their lives. So the AIDS community should pay attention, to make sure that agreements and arrangements work smoothly. James: What are GAAN's plans for 1994? Boneberg: First, we are researching the international AIDS programs, and included in that are meetings with the highest levels of the State Department. We have already met with the heads of AIDS programs in USAID (the U.S. Agency for International Development), in UNICEF, in the Global Program on AIDS, and in the United Nations Development Program. We now want to meet higher level people, both in the U. N. and in the State Department, to make sure that we understand what they are proposing, and that they understand our concerns. In the Clinton administration, we see the people as friendly; we just have to get their attention. Once we have their attention, and they reply to our concerns, such as AIDS and human rights, then we can see if there's disagreement. It may well be that we agree, and there won't be a need for advocacy as such, only a need for education. Our exploring is occurring at a high level, where it has never been done before. No organization in the world has ever met with this level of people in the United States government to try to influence international AIDS programs. Our major priority is to inform U.S. AIDS organizations, so that they can enter the dialog and influence events when necessary. The U.S. AIDS community has great potential leverage with governments throughout the world, because of the U.S. assistance programs. But until we are informed and connected, we have little or no influence. Specific GAAN programs for 1994 include: * Briefings at the Tenth International Conference on AIDS, Yokohama, August 7-12; * Briefings and support to national delegations wishing to visit their nation's mission to the United Nations, in conjunction with the Stonewall 25 International March on the United Nations to Affirm the Human Rights of Lesbian and Gay People, New York, June 26; * Organizing the International AIDS Candlelight Memorials worldwide, in May (Mobilization Against AIDS will continue organizing the Candlelight Memorials within the U.S.); and * Leading the reactivation of the Policy Task Force of ICASO, the International Coalition of AIDS Service Organizations. (GAAN is already the U.S. representative of ICASO.) AIDS is a global problem, in a world which is becoming more interconnected at an accelerating pace. To pursue U.S. domestic policy blindly, without at least an awareness of international events and issues, is dangerous. The global forum is increasingly important; if we default, we leave it to others with their agendas. To collectively ignore international programs and agencies is to abandon our future. Join the Global Network * Organizational support. GAAN will only work if it is supported by many AIDS organizations, both in the U.S. and in other countries. Organization dues are low -- for example, $100 per year for groups with annual budgets from $100,000 to $500,000. Dues are waived for organizations with annual budgets under $100,000. In return, organizations receive briefing papers and reports, in-person briefings, and a newsletter -- and the chance to be involved and represented in global AIDS policy, at far less cost than in-house staff would require. * Specialist volunteers. GAAN needs specialists in global issues; in the culture, language, or governance of specific nations; in multinational agencies, such as the World Bank (or persons who have served in any nation's foreign service); or in relevant international technologies, such as the Internet. * Seed money. GAAN needs help from individuals to get through the first two years, until organizational memberships and foundation grants are in place to provide ongoing support. Individual memberships are available, as is recognition on GAAN materials, including the letterhead; on the other hand, you can contribute anonymously if you want. GAAN's total budget for 1994 is $82,500. This money is not yet in hand, meaning that GAAN can happen only with your support. Paul Boneberg and Donna Rae Palmer (who is coordinating the International AIDS Candlelight Memorials) are donating their work at this time, but staff support, as well as increased funding for printing, postage, etc., will be essential for the organization to fulfill its potential. To contribute, send a check to GAAN, attn: Donna Rae Palmer, P. O. Box 376, Lagunitas, California, 94938. If your contribution must be tax deductible, you can restrict the funds to the International Candlelight Memorials; in that case, write the check to the GAAN Candlelight Fund, and it will go through GAAN's fiscal sponsor for the Candlelight. GAAN is a nonprofit organization governed by a board of directors. The founding board includes Reggie Williams, executive director, National Task Force on AIDS Prevention; Laurie McBride, executive director, LIFE AIDS Lobby; Dr. Joyce Hunter, president, National Lesbian and Gay Health Foundation; and Dr. Tom Lloyd, co-chair, Mobilization Against AIDS. For more information, write to GAAN, or call Paul Boneberg at 415/488-1453, or send email to Internet address globalaids@aol.com. ***** Tenth International Conference on AIDS, Yokohama, August 7-12: Abstract Submission; Scholarship Information Researchers submitting abstracts to the Tenth International Conference on AIDS should note that they need to be delivered (not faxed) to Japan, and arrive no later than February 28, 1994. Because of the international date line, February 28 in Japan is February 27 in the U.S. For instructions on submitting abstracts, and the official forms required, persons in the U.S. can obtain the Second Announcement and Call for Abstracts from Gil-Kenes Travel, Congress Department, 800/223-3855, fax 215/568-0696. Gil-Kenes Travel is the official agent for the Conference in the U.S. Note that persons submitting abstracts to the Conference must also register at that time. A travel and hotel package is available through Gil-Kenes Travel, at the numbers above. Alternatively, hotel accommodations can be arranged through Japan Travel Bureau, Inc., International Travel Division, Convention Center (Ref. CD100757- 002), phone 81-3-3276-7885, fax 3276-7806 or 3271-4134. For more information, see the Second Announcement; and see the Tenth International Conference brochure from Gil-Kenes Travel. At least two scholarship programs have been announced: (1) "The Organizing Committee has devised scholarship programs to facilitate the participation of persons from: NGOs, developing countries, those with HIV/AIDS. For details and a scholarship application form, please write to the Secretariat specifying your needs." The address is: Secretariat for the Tenth International Conference on AIDS-International Conference on STD, c/o Congress Corporation, Namiki Bldg., 5-3 Kamiyama-cho, Shibuya-ku, Tokyo 150, Japan. Phone 81-3-3466-5812, fax 3466- 5929. (2) Information about a separate U.S. sponsorship program for persons with HIV can be obtained from: Christina Lewis, National Association of People with AIDS, 1413 K St., NW, 8th floor, Washington, DC 20005, 202/898-0414, fax 202/898-0435. The conference registration fee goes up after March 31. Press registration is free. For more information, see the Second Announcement. After the Yokohama meeting, the International Conference will change from annual to every two years, so there will be no conference in 1995. Comment We expect this conference to be much like previous ones, only more expensive. It will be worth attending if possible, but not essential. AIDS TREATMENT NEWS is going, but we can only send one person this year. We believe that the important progress in future international collaboration and information dissemination will be through computer communication technology -- which is more effective and far less expensive than sending people to meetings. Computers will never replace meetings entirely, but will make those which do occur be more productive. [Note: See article below on AIDS information already available through computer bulletin board systems.] ****** New York City, Philadelphia, Pittsburgh, Sherman Oaks, Stony Brook: Important Protease Trial Recruiting A trial of the Merck protease inhibitor, code-named L- 735,524 (L-524), is being conducted in the five cities above. Volunteers must be asymptomatic, with a T-helper count under 500, and must be p24 positive (at least 25 pg/ml). They will be randomly assigned to one of three treatment arms: low dose L- 524, high dose L-524, or AZT. The trial will last for 24 weeks. "If L-735,524 is found to be well-tolerated and shows biologic activity, participants who complete the study may have the opportunity to continue in an extension to the study." Sixty volunteers are being sought. For more information, contact the site near you: * Bellevue Hospital Clinical Research Unit, New York University, 212/263-6565, clinic coordinator Mary Ann Kiernan, R. N. * University of Pennsylvania, Infectious Diseases Section, Department of Medicine, 215/662-6932, clinic coordinators Heidi Lehman, R. N., or Susan Hansen-Flaschen, R. N. * Pitt Treatment Evaluation Unit, University of Pittsburgh, 412/647-8125, clinic coordinator Nancy Mantz, R. N. * Pacific Oaks Medical Group, Department of Research and Scientific Investigation, 818/906-6279, clinic coordinator Jackie Bennette, R. N. * AIDS Treatment and Evaluation Unit, University Hospital, State University of New York at Stony Brook, 516/444-1658, clinic coordinator Ruth Ann Burk, R. N. Comment Protease inhibitors, a new kind of anti-HIV drug, have generated more interest among researchers than any other kind of potential HIV treatment. A number of companies are developing protease inhibitors, which are expected to begin large-scale clinical trials in 1994. L-524 is one of the leading drugs of this class. ***** Primary HIV Infection, and the Immune Response by Dave Gilden [Note: This is the second and final part of our coverage of the First National Conference on Human Retroviruses and Related Infections. The first part appeared in issue #190.] With about 40 thousand new HIV infections per year in the United States, the domestic AIDS epidemic is hardly over. Yet until now little attention has been devoted to finding those who are newly infected, or to finding prompt treatment regimens that might attenuate the course of their disease. Part of the difficulty is detecting HIV infection at its earliest point, since people usually have only mild or vague flu-like symptoms when they first contract the virus. (This initial period of symptomatic HIV infection is known as "acute" or "primary" infection. The chronic period of infection occurs after the original symptoms disappear and the slowly progressing disease process takes over.) Primary HIV infection is hard to diagnose because the standard HIV blood test does not detect the virus directly. Instead, this test only checks for antibodies produced by the body in response to HIV. It is worthless for uncovering new infections, since antibodies to HIV appear some weeks or months after transmission takes place. The First National Conference on Human Retroviruses and Related Infections, last month in Washington, D. C., brought together some of the researchers who are studying primary infection. The result was a broad discussion of some of the great unanswered questions concerning what increasingly appears to be a critical time in the development of AIDS. George Shaw, M. D., of the University of Alabama, indicated the nature of the problem: In a 1989 survey of 2300 emergency room visitors at Baltimore's Johns Hopkins Hospital, 180 patients were HIV-positive by the standard HIV antibody test. But there were six patients with unsuspected HIV who tested negative on the antibody test but positive on a direct test for HIV -- the test that looks for HIV core (or "p24") proteins in a person's blood. Dr. Shaw estimated that Johns Hopkins, a hospital with a great deal of AIDS consciousness due to its location, may see 70 to 115 patients a year with undetected primary HIV. Dr. Shaw has followed six patients at his home hospital in Birmingham, Alabama who came in with serious acute HIV infections. They were very ill for two weeks, exhibiting a wide array of symptoms, from rashes and swollen lymph glands to liver and neural dysfunctions. In every case the symptoms cleared up spontaneously within two weeks, and the six started producing antibodies to HIV a month later. Their histories diverged after that; one has maintained a normal T-helper cell count for the past three years while two others saw their T-helper cell counts drop precipitously to the levels associated with AIDS in the year after contracting HIV. (Note that those who are sick enough during primary infection to seek medical attention may not at all be representative of others who never come to the attention of researchers because their primary infection is mild or even asymptomatic. This is another problem in studying primary HIV disease.) The range in response may be due to the type of virus each person received during transmission. Jaap Goudsmit, M. D., at the University of Amsterdam noted, though, that his group had found that less than five percent of acute HIV infections involved especially virulent viral strains (the so-called "syncytium-inducing" or SI types). An assessment by Goudsmit's group of 42 people who contracted a non-SI type of HIV could find no further predictor of progression. Shortly after acute infection, neither HIV blood levels, viral genetic characteristics, nor T-helper cell count, separated those who developed AIDS in the next four years from those who were still AIDS-free after six years. But in the three years after acute infection, HIV levels seemed to go down in slow progresssors, while remaining stable in faster progressors, suggesting that the long-term quality of immune defenses is the crucial factor in the speed of AIDS onset. David Ho, M. D., of the Aaron Diamond AIDS Research Center in New York, confirmed that highly virulent SI viral varieties hardly ever seem to get transmitted. His lab analyzed the virus found in 20 men with new HIV infections, all contracted sexually. When trying to culture this virus, researchers noticed that it grows much better in the monocyte-macrophage type of cell (an immune system sentinel cell that traps foreign microbes) than in T-helper cells. On the other hand, the virulent virus which is often found in advanced HIV infection grows better in T-helper cells. The virus in newly infected people also is very homogeneous. Dr. Ho and his collaborators have identified the genetic sequences of the viral strains in five of the recipients, as well as the people they received HIV from. Each recipient's HIV varied little in its genetic makeup, whereas the HIV in each donor (all asymptomatic men) exhibited a large degree of genetic diversity. A great deal of mutation clearly takes place after infection, as HIV adapts to its new host. The virus present during the acute infection seems to be a minor variant present in small numbers in the donor. The variant can be found in the cells (probably monocytes or other immune cells) present in the donor's semen and to a lesser extent in the seminal fluid (and sometimes not at all). It cannot be detected in the cells or plasma of the blood. (This suggests that the forms of HIV which are readily transmitted are not highly pathogenic (disease causing) by themselves. But HIV mutates very rapidly, forming many different variants, some of which are highly pathogenic.) Dr. Ho noted that these findings have serious implications for vaccine research, which has concentrated on laboratory strains of HIV grown in T-helper cells. This is a variety with properties considerably different from the type of HIV that seems most transmissible. In future vaccine investigations, "we need to target transmitted virus, not those highly adapted to T-cell lines," Dr. Ho said. When HIV first enters the body, it can cause abrupt illness because there is no immune response that specifically targets the virus. Even before antibody production begins, though, most of the HIV present in the bloodstream has disappeared. Richard Koup, one of Dr. Ho's colleagues at the Aaron Diamond Center, described his group's analysis of how immune defenses against HIV unfolded after transmission in five patients. (In only two of these are samples available from the period before antibody production began.) Dr. Koup's observations indicated that cytotoxic T- lymphocytes (CTLs), designed to hunt out and kill HIV-infected cells, are the first HIV-specific immune response. They stem the initial burst of HIV replication. It can take a year to develop anti-HIV antibodies that can effectively block the virus from infecting new cells. The one person in the group who had a sustained, dramatic fall in T-helper cell count also had a delay in the emergence of anti-HIV CTLs. This conclusion has considerable implications for vaccine development. It was supported by a number of other presentations at the conference. There has been some recent work, however, that indicates that the CTL and antibody responses interfere with one another. The first gradually fails as the second increases. This is the so-called switch from the Th1 to Th2 immune mode. The Aaron Diamond group found that the CTL (killer cell) response peaks and then goes down, but it holds for years. There is considerable overlap between the two modes. One of the conventional observations about post-acute conditions in HIV infection is that viral levels in the blood are reduced almost to zero. Newer, more sensitive tests, such as those involving polymerase chain reaction (PCR), confirm that viral levels do go down by a hundred or a thousand times after the acute infection ends. This is a greater reduction than any currently available treatment can accomplish, but there is still much HIV in the bloodstream. Dr. Shaw wondered why HIV is usually difficult or impossible to culture from the blood of infected individuals during this stage. Meanwhile, the continuing work with lymph nodes, at the National Institutes of Health and elsewhere, further documents that during the symptomless post-acute period, HIV concentrates in these centers of immune activity. The lymph-node data suggest that use of a drug like AZT, which helps prevent the infection of new cells, might be most useful during acute infection. At that point, few cells harbor HIV; perhaps this number could be kept low, with the lymph nodes greatly protected. Anthony Fauci, M. D., the director of the National Institute of Allergy and Infectious Diseases, raised this possibility in a recent article.(1) Dr. Fauci also warned of the risk of developing AZT-resistant HIV strains (which will then be hard to treat later on) and of the drug's toxic side effects (which may perturb immune system function). But a questioner at the Retrovirus Conference wondered whether using AZT at the first possible moment might lead to a faster decline. Panelists replied that no data was available on the risk of accelerating disease progression. The questioner's concern may have stemmed from a letter from a research group in Australia which is testing AZT to treat primary HIV infection.(2) The letter described their experience treating seven gay men with acute HIV infection. The seven received a total of one gram of zidovudine a day for an average of 56 days, and were compared with records of 15 untreated men used as historical controls. After two months the treated group had half the cytotoxic lymphocyte and total lymphocyte counts of the untreated group. T-helper counts were about the same for both groups. The authors theorized that reducing HIV replication with AZT may dampen the immune response, especially against the normally more virulent, "syncytium-inducing" strains. The authors noted that AZT might also directly suppress CTL (cytotoxic T lymphocyte) replication. The long-term effects, if any, of the reduced lymphocyte counts remain to be seen; the letter only reported the blood work, not symptoms or clinical condition of the volunteers. The Australian group suggested that it might be better to use immune modulators, "such as IL-2 or the interferons," instead of AZT for treating primary HIV infection -- to promote the CTL response. The NIH has an on-going trial to test AZT for primary infection, but that trial is moving very slowly because of the difficulty of finding appropriate participants. At present, only about ten people are enrolled, of the 80 positions which are open. This trial is being conducted in nine cities: Baltimore, Chicago, Dallas, Fort Lauderdale, Houston, Los Angeles, New York City, Palo Alto, and Providence. For information about enrolling patients who may have primary HIV infection, physicians should call the AIDS Clinical Trials Information Service, 800/TRIALS-A. References 1. Fauci AS. Multifactorial nature of human immunodeficiency virus disease: Implications for theory. SCIENCE. November 12, 1993; volume 262, pages 1011-1018. 2. Tindall B, Carr A, Goldstein D, Penny R, and Cooper DA. AIDS. January 1993; volume 7, number 1, pages 127-128. ***** Computer Access to Treatment Information by Tadd Tobias AIDS information by computer is available 24 hours a day, from any location with a telephone -- often for no cost except for a local or long-distance call. More AIDS information is available this way than in any library -- and often it's more recent information, since there is no printing or mailing delay. Also, some computer systems include powerful searching facilities to help users locate what they want. Other advantages of computer communication are that there is no phone tag, time zones don't matter, and copies can be retransmitted easily and with no loss of quality. These systems also offer privacy, and the convenience of not needing to leave your home or office. The main disadvantage is the difficulty of getting started. The computer industry has consistently done poorly in making its equipment and software easy to use. Those who are not already familiar with computers, and are not technically inclined, should find someone to help them begin. What about cost? Most people do not buy a computer just for information access, but use one which is already available at home, at work, or through friends or organizations. If the computer does not already have a "modem" -- the device that connects it to a telephone line -- one can be purchased for about $100. Aside from the equipment cost, there may also be charges for using the remote computer. This article, however, focuses mainly on free systems. One disadvantage and advantage together is that, in many cases, anyone can distribute information through these channels because they are not tightly controlled like professional peer- reviewed journals or carefully edited newsletters. The full spectrum of opinions and ideas is present. Sometimes many messages will come from a few people with an axe to grind. Alternative and mainstream ideas may be mixed together, as well as professional and lay opinions. This medium encourages information exchange and lively debate; but users should realize that accuracy and reliability will vary. About This Article Our focus here is on computer bulletin board systems (BBS) which specialize in AIDS information, and which do not charge for access. This article does not cover research databases, which usually have much more comprehensive and better organized information, but are expensive and generally used by professionals. (Such research systems are very important, however, and we may review this subject later.) This article does not focus on electronic mail, although we mention it in passing. For more information about electronic mail, see AIDS TREATMENT NEWS #172, April 2, 1993. The list below is not comprehensive because of the large number of BBS systems. We selected a few to give our readers a place to begin, and a sense of the variety available. Technical notes: (1) If you need to deal with communication settings in your software, all the systems below use no parity, 8 data bits, and 1 stop bit. (2) Although we do not cover electronic mail, we do include an Internet address for some of the systems listed below, for the convenience of anyone who may want to communicate with the system operators in this way. Otherwise, you can ignore the Internet address. Selected Bulletin Board Systems (BBS) * HIV/AIDS Information BBS. Modem phone, 714/248-2836. Internet address: mary.elizabeth@aegis.hivnet.org This comprehensive information collection is current and easily accessible; simply stated, this is one of the best. HIV/AIDS Information BBS also serves as the central hub of the AEGIS (AIDS Education General Information System) network which links AIDS-related bulletin boards and networks in many U.S. and Canadian cities, and in Africa, Asia, Australia, and Europe. For a complete list of the other AEGIS systems, plus some other AIDS bulletin boards (one of which may be reachable by a local call in your city, saving long-distance charges), select "ENA/AEGIS Affiliate BBS Directory," under the system's main menu. Most other systems will not have all of the information available on HIV/AIDS Information BBS. [Note: When the listing stops at the end of a page, type the Enter or Return key for an additional page -- or type Q to quit this directory and return to the main menu.] As with many bulletin board systems, HIV/AIDS Information BBS consists of two basic parts: a message area and a file area. The message area allows you to read and write messages, either to public, subject-specific conferences, or privately to other AEGIS users through electronic mail. The AEGIS public conferences available are AIDS.DATA, AIDS.DIALOGUE, AIDS.DRUGS, AIDS.NEWS, AIDS.SPIRITUAL, AIDS.TRIALS, and AIDS.WOMEN. Users can post relevant information, ask questions, or simply read what others have written. In addition to these AEGIS conferences, the system makes available: HIVNet (which is a European sister organization to AEGIS, with conferences in French, German, and Dutch); FidoNet conferences AIDS/ARC, AIDS-HIV, ACTUP, and THE WHITE HOUSE; as well as the Internet Newsgroups sci.med.aids and bionet.molbio.hiv. (Some of these conferences are read-only for users of HIV/AIDS Information BBS.) The second component is the files area. Known on this system as Online Library Services, it has over 80,000 files available for reading immediately or for downloading (transmitting to your computer for use later), with hundreds of new files added each month. These files include information on current AIDS-related treatment, research, epidemiology/surveillance, education/prevention, etc., available from the U.S. Public Health Service, National Institutes of Health, National Institute of Allergies and Infectious Diseases, Food and Drug Administration, Centers for Disease Control, National AIDS Information Clearinghouse, and National Library of Medicine. Several newsletters are available, including AIDS TREATMENT NEWS, Being Alive, Critical Path AIDS Project, STEP Perspective from Seattle Treatment Education Project, and Treatment Issues from Gay Men's Health Crisis. Information is also available from major newspapers and wire services. Other resources include conference proceedings, research abstracts, an AIDS bibliography for books in print, a glossary of AIDS-related terminology, an introductory course in AIDS, and a listing of AIDS support organizations. This is only a brief overview of the some of materials available. To make the information more accessible, a keyword search is provided. Users can search most of the databases using up to ten keywords, which can be combined using the operators 'and', 'or', and 'not'. After the search, the results are presented and the user is given the choice of viewing the text immediately, or downloading the files for reading later. We encourage people to connect with this system to explore it for themselves. Callers have immediate free access to the bulletin board, though each caller is limited to 40 minutes per call, 6 calls daily because the demand is high. Callers who wish to remain anonymous may log on as "aids info," but then they can only read information; it is necessary to register to get permission to write to the conferences. Once connected, we strongly recommend reading the notice for first-time callers, available from the main menu. It provides some important information regarding the use of this system. If you have difficulty or questions, you may contact the system operator, Mary Elizabeth, by voice telephone at 714/248- 5843 (9 am to 4 pm Pacific time). She is willing to provide whatever assistance may be necessary. * AIDS Info BBS. Modem phone, 415/626-1246. Once the system answers, reply with one or two carriage returns. Further instructions will be provided. This is another excellent resource for gathering AIDS treatment information. Despite similar names, it is separate from the one above. The AIDS Info BBS is a free bulletin board system specializing strictly in AIDS information. Started in San Francisco in July 1985 by Ben Gardiner, this free bulletin board has provided the community quality AIDS information since its inception. Like the above system, this BBS also offers users anonymous access to an extensive online AIDS Library. AIDS Info BBS also has the unique advantage of eight years of operation; for those interested in the history of the epidemic, it has archives created by community response to events now past. Its other resources include several publications (including AIDS TREATMENT NEWS), statistics and epidemiology reports from the U.S. Centers for Disease Control, an open forum for posting, requesting, or discussing information, and electronic mail for use within the system. Users should note, however, that this system utilizes a command language that is unique and somewhat outdated. Although the system remains useful and fully functional, it is not the more modern communication technology used by some other systems. * Critical Path AIDS Project BBS. Modem phone, 215/463-7160. At LOGIN prompt, type 'bbs'. Internet address: kiyoshi@cpp.pha.pa.us. This free system is an excellent resource for AIDS treatment, research, and policy information. Users may log on with a pseudonym, or they may register with a real name (which is required for users who wish to use electronic mail facilities). Resources available include AIDS treatment periodicals, full-text ACTG (AIDS Clinical Trials Group) research protocols, International AIDS Conference abstracts, resource directories, public benefits information, and numerous discussion areas including one for ACT UP. This bulletin board system utilizes Magpie software which is unlike most other BBS. For the beginner, it may be difficult to use, so it is recommended that new users take full advantage of the online tutorial and user's manual. For assistance with the BBS, or to access other services offered by Critical Path AIDS Project, call 215/545-2212 (24-hours a day). * HNS HIV-NET. (Home Nutrition Services, Inc.) Modem phone, 800/788-4118. Funded by a home health care corporation, this system's primary focus is to provide doctors and allied health care professionals treating HIV disease an opportunity to network and exchange information. Other users eligible for access include those involved in the care of persons living with AIDS/HIV (including office managers, social workers, nurses, pharmacists, and community service organizations). Access is free -- but limited to those who are eligible. Interested individuals must log on, answer registration questions, and then call back in 24 to 48 hours to see if they have been accepted. * AIDSNET BBS. Modem phone, 607/777-2158. Operated by the Decker School of Nursing, State University of New York at Binghamton, this system is designed to aid in the delivery of healthcare to persons living with HIV/AIDS in rural, upstate New York. It provides nursing consultation, case management, social support, health education, and AIDS treatment information. Although this service is targeted to serve clients in New York State with the intent to improve their home healthcare, it may be used by anyone. The system is free. * Black Bag BBS. Modem phone, 302/994-3772. This is a medical information network operated by Edward Del Grosso, M. D. It deals with a wide range of medical issues, not only HIV/AIDS. The message area reflects the diversity of the materials found on this system with virtually every medical discipline having a forum for the discussion of topics of concern. This includes information about AIDS, as well as several disability-oriented discussions. A collection of medical software (public domain and shareware) is available for downloading. This system includes an interactive text-based database of diseases, medical procedures, medications, symptoms, and treatments. Also available is the Black Bag Medical BBS List, of over 240 bulletin board systems all over the world which primarily address one of the following areas: medicine, science, alcohol and drug dependency, disabilities, or psychology. The numbers are verified every three months. Other Resources * sci.med.aids (a Newsgroup available on the Internet). This is the foremost resource for AIDS information on the Internet. The moderators who run this Newsgroup state that it reaches 20,000 active subscribers, in all fifty states and in 100 countries. Readers should note that one can only read sci.med.aids through HIV/AIDS Information BBS (as explained above) and some other systems. In order to write messages to sci.med.aids, one must be able to send electronic mail to an Internet address. Many resources are available through sci.med.aids. The users of the Internet and sci.med.aids tend to be associated with universities, research groups, and other professional organizations. Research abstracts, treatment newsletters, press releases, clinical trials announcements, and news summaries can all be found in this Newsgroup. The organizers of this resource act as moderators, screening material before it is posted. People who access sci.med.aids will find it to be a lively forum for debate and information sharing among those working with AIDS-related issues. * CAIN (Computerized AIDS Information Network). Available on the Delphi network; Delphi username: lacain. For more information, call 213/993-7415. Internet address: lacain@delphi.com. This system is operated by the Los Angeles Gay and Lesbian Community Services Center with support from the State of California Office of AIDS. Online communication and AIDS information services are available, including bibliographic, research, resource/referral, treatment, epidemiology, and education/prevention materials. Primarily serving California AIDS agencies, the resources reflect regional issues, although national statistics and information are also available. The network is designed to allow members to contribute information to the various databases. In addition to California agencies, the general public and persons with AIDS may also find the system useful. To use CAIN, one must subscribe to the Delphi Network (a large, commercial "information utility") and pay a minimum monthly fee. As a result, anonymous access in not available. But one advantage is that Delphi (along with many other systems, including America Online, CompuServe, PeaceNet, etc.) has a "gateway" for sending and receiving electronic mail through the Internet. This means, for example, that subscribers can submit material to sci.med.aids, as described above. BBS systems, which allow free and often anonymous access, seldom provide their users with access to the Internet. To subscribe to CAIN, use your computer to call 800/365- 4636, and press once or twice. At the PASSWORD prompt, enter "GLCSC" (without quotes). The system will then provide further instructions. For voice assistance, call 800/695-4005. ***** AIDS TREATMENT NEWS Published twice monthly Subscription and Editorial Office: P. O. Box 411256 San Francisco, CA 94141 800/TREAT-1-2 toll-free U.S. and Canada 415/255-0588 regular office number fax: 415/255-4659 Internet: aidsnews.igc.apc.org Editor and Publisher: John S. James Reader Services and Business: David Keith Thom Fontaine Tadd Tobias Rae Trewartha Statement of Purpose: AIDS TREATMENT NEWS reports on experimental and standard treatments, especially those available now. We interview physicians, scientists, other health professionals, and persons with AIDS or HIV; we also collect information from meetings and conferences, medical journals, and computer databases. Long-term survivors have usually tried many different treatments, and found combinations which work for them. 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 1994 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. &&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&&& End of display