Date: 09 Sep 1999 19:28:11 From: aidsnews.org@igc.org Subject: AIDS Treatment News #326 AIDS TREATMENT NEWS Issue #326, September 3, 1999 phone 800-TREAT-1-2, or 415-255-0588 CONTENTS: Lipodystrophy: Free Teleconference Sept. 15, Tape and Transcript Available Later Opportunistic Infections: New Treatment Guidelines Published August 20 HIV & AIDS Treatment Registry Database: Public Registry Now Online Treatment Advocacy Program Trains 200: Interview with Matt Sharp Activists Block Gore's Office to Protest Terms of Africa Deal Brazil May Stop HIV Drug Access; Problems Also Reported from Argentina Seattle Demonstration Preparations for Global Trade Meeting ***** Lipodystrophy: Free Teleconference Sept. 15, Tape and Transcript Available Later Experts will discuss the latest information about fat redistribution and related metabolic changes on a free teleconference on September 15; participants can ask questions during the call. Later you can obtain a taped replay or an edited transcript of the call. The panelists are Donald Kotler, M.D., Professor of Medicine, Columbia University College of Physicians and Surgeons; Andrew Carr, M.D., Staff Specialist, HIV Medicine and Immunology, St. Vincent's Hospital, Sydney, Australia, and Roger Anderson, M.D., President, Anderson Clinical Research. The panel will be moderated by Ronald Baker, Ph.D., Editor- in-Chief, HIVandHepatitis.com. "The cause(s) of lipodystrophy among people with HIV infection is unknown, and there is robust debate among scientific experts and HIV clinicians about the potential role of anti-HIV therapy in the syndrome. Ongoing studies are attempting to determine which components of multi-drug combination therapy may be associated with the individual symptoms of lipodystrophy. Researchers are also studying the relationship between body fat redistribution and increased age and the duration of anti-HIV therapy, irrespective of specific drug treatments." [from the announcement of the teleconference] Details The teleconference, lasting about one hour, will start at 5 p.m. Pacific time, 6 p.m. Mountain, 7 p.m. Central, 8 p.m. Eastern time. To join the call (and be able to ask questions), you must register in advance (first name only); call 800-880-5121 Monday through Friday 9 a.m. to 5 p.m. Eastern time to register and receive the toll-free number and other instructions for dialing into the call. Later, you can hear a tape of the teleconference by calling toll-free 888-207-2647, passcode 1144; this tape will be ready starting about 24 hours after the call. Also, an edited transcript will be available about 14 days later, at http://www.HIVTreatmentLive.com . This teleconference is produced by HIVandHepatitis.com, and supported by unrestricted educational grants from Agouron Pharmaceuticals, Inc. and Serono Laboratories. ***** Opportunistic Infections: New Treatment Guidelines Published August 20 The 1999 USPHS/IDSA GUIDELINES FOR THE PREVENTION OF OPPORTUNISTIC INFECTIONS IN PERSONS INFECTED WITH HUMAN IMMUNODEFICIENCY VIRUS was published August 20 in the MMWR (MORBIDITY AND MORTALITY WEEKLY REPORT) of the U.S. Centers for Disease Control and Prevention (CDC). Copies are available at the AIDS Treatment Information Service, http: www.hivatis.org . These guidelines were last updated in 1977. The new revision includes recommendations on prophylaxis of opportunistic infections in the era of modern antiretroviral treatment. Two new infections, herpesvirus type 8 and hepatitis C, are also addressed; 19 diseases are now covered. There is an appendix on avoiding exposure to opportunistic infections. These guidelines were prepared by a panel of over 60 experts, who met March 4 and 5, 1999. Tables include primary prevention, prevention of recurrence, effect of food on the drugs used, major drug interactions, adverse drug effects, doses, drug prices (wholesale acquisition cost, annual per-patient), and recommendations for children (including immunization schedules for HIV- infected children). In addition to the Web site (http://www.hivatis.org), single copies can be obtained from the AIDS Treatment Information Service, 800-448-0440 or 301-217-0023. Also, pamphlets for patients are available at http://ww.cdc.gov/hiv . ***** HIV & AIDS Treatment Registry Database: Public Registry Now Online by John S. James A World Wide Web database allows persons with HIV to record their medical information anonymously. "The database provides a way for people to enter information about their regimens and side effects anonymously, and search for other profiles similar and/or different from their own. This first public, online database to collect HIV treatments information was launched on June 15, 1999 through the cooperative efforts of many PWAs, webmasters, and AIDS activists. "Anyone is allowed to search through the information. By comparing one's treatment profile with others taking similar medications or complementary treatments, people can learn about new options, keep a record of their own history, or share the results of their own experiences." As of August 24, 140 people have entered their medical information into this database. The system is also useful for its lists of antiretroviral, nutritional, complementary, and other treatments in widespread use. These lists, which include suggestions from many people, are part of the data-entry forms, separate from the medical data. For more information, contact John La Bella, jlabella@jri.org or 617-536-8561. How to Use It * To search profiles already in the database, go to http://www.infoweb.org/trd/search.html . You will see a number of options, such as 'Search using the whole form' or 'Search for a particular language or codename'. These choices are just a convenience to take you to the right part of the form, where you can enter what you are looking for (for example, names antiretroviral drug). We suggest always choosing 'Search using the whole form', at least at first; scroll down through the form, so that you are aware of the different questions it contains. * To enter your own profile, go to http://www.infoweb.org/trd/submit.html . Fill out only what applies to you; everything else can be left blank. * To add to or change your profile, go to http://www.infoweb.org/trd/resubmit.html . Note: This database is also available at other sites. To search the database, you can use: http://www.aidsinfonyc.org/trd/search.html or http://www.multicultural-aids.org/trd/search.html or http://www.aegis.com/hivinfoweb/trd/search.html . The search results should be the same no matter which Web site you use. You can also submit or update your record at these three other sites. Just change 'search' in the Web addresses above to 'submit' or 'resubmit', respectively. ***** Treatment Advocacy Program Trains 200: Interview with Matt Sharp by John S. James A three-day program on treatment advocacy, started last year in San Francisco, has trained 200 people so far, with 80% of them passing a test to be certified as treatment advocates. Because this program can be a model for other areas, AIDS TREATMENT NEWS interviewed Matt Sharp, a well-known treatment activist who is the coordinator and one of the teachers of the new course. The Treatment Education Certification Program (TECP) is designed for case managers, treatment advocates, peer advocates, substance abuse counselors, mental health counselors, and outreach workers. AIDS TREATMENT NEWS: Why was the TECP established? Matt Sharp: This program was created by the Ryan White Planning Council (the local group which determines how the Federal Ryan White CARE Act money is spent in the community and how these programs are implemented by the Department of Public Health). Since the beginning of the epidemic, there have been volunteer peer advocates, or buddies, who help people who are ill with practical chores. There have also been volunteer treatment advocates who help their friends navigate the medical system and get the care they need. More recently the People With AIDS Caucus of San Francisco's Ryan White Planning Council has decided that, because of the complicated, confusing HIV treatment scenario, some of these people should come into the service agencies, be trained, and be paid. The treatment advocate helps clients and patients understand the complexities of HIV treatment, and helps guide them in working with their doctor. The grassroots idea of advocating for people with HIV in their treatment has now become institutionalized--which is a good thing, although there are also problems with bureaucratization. Two agencies working together received the contract for this program. They are Project Inform, and my agency, the Asian & Pacific Islander Wellness Center. ATN: Who designed the curriculum? Sharp: The course was designed by Judy Leahy of Project Inform. I was hired later, and helped edit the curriculum, when the classes were about to begin. We teach the classes together. Our program is peer led and run, which breaks down barriers that can come with training led by doctors or professors. People are less afraid to interact and ask questions. ATN: What are the major elements of the course? Sharp: We start with a discussion of health care and peoples' experiences with the medical system. We cover HIV pathogenesis, standard of care, antiretroviral strategies, side effects and drug interactions, opportunistic infections, research, clinical trials, adherence issues, access to care, benefits, referral and resource information, and strategies for working with multiply diagnosed and underserved clients. Participants receive a treatment education manual. ATN: Is there any followup? Sharp: Participants can always ask us questions. In addition, they are invited to monthly Provider Work Groups--three-hour meetings on cutting-edge issues. Topics have included hepatitis C, post-exposure prophylaxis, nutrition and drug therapy, and transgender issues including hormones and HIV antiretroviral treatment. Upcoming topics include domestic violence, cultural competency for HIV service providers, and immune-based therapies. Participants are also invited to attend the Project Inform Town Meetings, 3-hour updates on the latest treatment news. These often follow major treatment conferences, when there is the most news to report. Also, the 20% who fail the certification test are offered one-on-one tutoring and three chances to take the test again. All who have chosen to do this have ultimately passed. ATN: Are these people employed first, or do the use the certification to help get a job? Sharp: Almost everybody is already in their job when they take this training. Many are highly skilled; they may have social-work degrees, or are psychotherapists. Others have few job skills and are new at their positions, and may be people with HIV themselves. We had some complaints from employers, who were reluctant to release employees for the three-day training, which is required by their Ryan White contracts. We negotiated with them and addressed some of their concerns in the second year of the training program. ATN: What other HIV treatment training programs are happening elsewhere? Sharp: There are some, but our program is unique in that it is peer-led and offers a certification test, and is directed toward this population. HRSA (the Health Resources and Services Administration) recently issued an RFP for similar training [this RFP closed September 3]. The Asian & Pacific Islander Wellness Program and Project Inform have applied together for a grant; if we get it we will expand a similar training to the northwest quadrant of the United States, (depending on what other programs are funded) including Alaska and Hawaii, and as far east as Montana. This program is funded by the appropriation obtained by the Congressional Black Caucus, so it will have more of a minority emphasis. A total of $3.3 million can be awarded, to five to ten programs. ATN: If other agencies are interested in setting up a similar program in their area, how can they get more information? Sharp: They can call me at 415-292-3420 ext. 337, or Judy Leahy at 415-558-8669 ext. 213. ***** Activists Block Gore's Office to Protest Terms of Africa Deal by John S. James On August 23 five activists from AIDS Drugs for Africa were arrested after they chained themselves to the entrance of the Old Executive Office Building a block from the White House, the site of Vice President Al Gore's office. They were protesting the terms of a still-undisclosed deal between the U.S. and South Africa over the use of generic copies of patented drugs--which are often a tenth the price charged by the patent holder, usually a multinational pharmaceutical company. According to earlier leaked information, the deal was going to be that the United States would stop pressuring South Africa economically if South Africa would sign a statement that it would use the low-cost drugs in accordance with international treaties (South Africa has always said that it would do so). But then, after heavy lobbying by the pharmaceutical industry, a deputy to U.S. Trade Representative Charlene Barshefsky testified before Congress that the Administration would only agree to allow generic production and importation of drugs for AIDS--leaving treatments for cancer, drug-resistant tuberculosis, and other diseases unaffordable. And the activists believe that even this concession will be granted only to South Africa. Vice President Gore, who has strong ties to the pharmaceutical industry, is the U.S. official in charge of the U.S/South Africa negotiation, which is currently in its final stages. The high prices have put treatments for AIDS and other diseases entirely out of reach of the large majority of people in developing countries. In South Africa under apartheid, only the elite got modern medical care; high drug prices have now become a critical issue because the post- apartheid government wants access for all of its citizens. The pharmaceutical industry cares little about sales in developing countries, which are minuscule, but cares very much that precedents set there could be used elsewhere to reduce its intellectual-property rights in profitable markets. Coincidentally, THE NEW YORK TIMES published an excellent editorial on this subject the same day the arrests occurred ("Drugs for AIDS in Africa," August 23, 1999). For more on this issue, see the Web site of the Health GAP Coalition, http://www.healthgap.org . [Note: This article went to press on August 25, so it does not include later developments.] ***** Brazil May Stop HIV Drug Access; Problems Also Reported from Argentina Due to Brazil's financial crisis, persons currently receiving antiretroviral therapy through the public health system are expected to be cut off starting in October; expensive treatments for other diseases, including hemophilia, tuberculosis, diabetes, and malaria, are also threatened. Because of the cost of the drugs, the government would need $110 million to continue the program. For more information, contact Jorge Beloqui, beloqui@ime.usp.br . Dr. Beloqui added that AIDS deaths in Brazil dropped 38.7% from 1996 to 1998, and that Brazil produces some of the drugs locally, including AZT, ddI, and d4T. He also referred people to two PWA organizations in Brazil, giv@mandic.com.br (the group he works with) and forumongs@globonet.com.br (a forum of over 50 NGOs in the state of Sao Paulo). Also, we have been told that the Provincial Government of Buenos Aires, Argentina, has stopped giving antiviral medications as of August 5th. For more information, contact Homer Hobi in San Francisco, hobi@humanist.org or 415-285- 0606. Note: These ominous developments are putting more pressure on drug-recycling programs, which collect unused medications for donation to doctors and clinics which otherwise could not afford them. If you know of AIDS drugs that could be used, contact either AID for AIDS, 212-337-8043 or aid4aids@aol.com, or Homer Hobi at the email or phone number above, or call Jeannie Gibbs or Mitch Abrahams at Global African AIDS Relief Initiative, 212-875-9293 (a new program largely organized at the recent PWA conference in Warsaw). But clearly drug recycling will not solve the global access problem. We need a consensus that poor countries, or countries in a financial crisis, be allowed to obtain proprietary drugs at or near cost as an alternative to not having them at all. ***** Seattle Demonstration Preparations for Global Trade Meeting Thousands of organizers, demonstrators, and other activists are expected to come to Seattle for the meeting of the world's trade ministers, November 29 - December 3 (which coincidentally includes World AIDS Day, December 1). This meeting will begin the process of setting new international trade rules which will have enormous impact for years to come. For example, pharmaceutical industry lobbyists may try to eliminate the treaty rules that now allow developing countries to import or manufacture generic copies of drugs patented elsewhere, in order to meet a public-health emergency. One resource group to help grassroots voices be heard is The Ruckus Society, in Berkeley, California, http://www.ruckus.org . The Ruckus Society, which "provides training in the skills of non-violent civil disobedience to help environmental and human rights organizations achieve their goals," is holding an action camp called Globalize THIS!, September 16 to 22 in Arlington, Washington (near Seattle); training includes strategies, press work, banner making, climbing (to place the banners), and other skills. The organization's 16th action camp "will be bringing together over a hundred of the most spirited and prominent human rights, environmental, social justice and trade activists from around the world to learn the strategies and tactics they'll need to speak truth to power when the World Trade Organization Ministerial Summit meets in Seattle just two months later... The Camp promises to be an unprecedented opportunity to build a movement toward real global community and fair trade." The Web site also includes manuals on press relations and other skills for getting one's message out. For more information, see http://www.ruckus.org or email han@ruckus.org , or call 510-848-9565. ***** 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 email: aidsnews@aidsnews.org useful links: http://www.aidsnews.org Editor and Publisher: John S. 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