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As Scale Up to Rx for 3M by 2005 Proceeds, Activist Groups Worldwide Begin to Lay Groundwork

Educating Patients, Providers

At the Barcelona AIDS conference this summer, TAG co-sponsored the first meeting of a new global coalition focusing on treatment preparedness. As the global health and economics bodies of the World Bank, the World Health Organization and the United Nations pursue the scale-up for HIV/AIDS treatment and care in developing countries, the importance of community involvement in treatment preparedness is viewed as an essential requirement for the program’s success. From the very first AIDS organization in Belarus to more seasoned activist groups in Uganda, India and Mexico, participants in the global strategy session exchanged news of challenges and successes from their respective communities. Mark Harrington prepared this bulleted summary of the meeting for TAGline.

A group of over 30 AIDS treatment advocates and community representatives gathered in Barcelona, Spain, on the evening of Wednesday, 10 July 2002, to discuss the need to educate communities about HIV/AIDS treatment and to mobilize communities around demands for greater treatment access. Participants were invited based on their history of, experience with, and interest in conducting HIV/AIDS treatment preparedness work on the international, regional, national, and local levels. Countries represented included Belarus, Chile, Mexico, India, Russia, Thailand, Uganda, the United Kingdom, and the United States. Additional invited representatives from countries including Brazil, Burundi, Morocco, South Africa, and elsewhere indicated interest in participating but were not able to attend, either because of competing obligations at the XIV International AIDS Conference or for logistical reasons.

Gregg Gonsalves of Gay Men’s Health Crisis (New York City) and Mark Harrington of the Treatment Action Group (New York City) introduced the meeting and stated that they had had preliminary discussions with UNAIDS, WHO, and the World Bank, about the importance of community involvement in treatment preparedness as part of the scale-up of HIV/AIDS care being proposed for developing countries. Participants then introduced themselves and briefly discussed what they and their organizations were doing.

Treatment Preparedness Activities in Developing Countries

  • Venkatesan Chakrapani of SAATHI (India) described their work mapping and coordinating HIV/AIDS organizations in India. They are working with Indian Network of HIV-Positive People to bring out a paper on care and support in India.
  • Maew Chinvarasopak, Tom Trumanka, Mit, and Paisan Tan-ud (Thailand) discussed the Thai PWA coalitions and their goals of 1) ensuring good government policy, 2) empowering people living with HIV/AIDS, and 3) expanding access to antiretroviral therapy.
  • Roman Dudnik and Marina Nikitina of AFEW (Russia) described the Russian Network of HIV-Positive People, the East/West Foundation, and their prison project. Care and support for people living with HIV advocacy is just beginning there.
  • Milly Katana of the Health Rights Action Group (Uganda) discussed their efforts around advocacy to end stigma and discrimination, mobilize communities around prevention of mother-to-child transmission (MTCT), and MTCT-Plus treatment programs. She proposed that a 6-7 person task force take the international treatment preparedness proposal forward, including reasonable representation of people from the South.
  • Stanislas Kazihin (Penza, Russia) described the work of Russian NGOs on harm reduction, HIV in prisons, and support for people with HIV.
  • Abraham Kurian of the Indian Network of HIV-Positive People (India) discussed the group’s focus on community mobilization, developing stronger networks at the state level, and increasing interest in treatment advocacy.
  • Anuar Luna of the Mexican Network of PWAs (Mexico City, Mexico) described the treatment education and quality-of-life workshops they do, which focus on issues such as how to make treatment decisions, understanding lab testing, establishing support groups on treatment, etc.
  • Rodrigo Pascal of Vivo Positivo (Chile) discussed the group’s work advocating for civil rights, legal protection against discrimination in education and health care, PWA support groups, and prevention and treatment education — including adherence counseling and community mobilization for care.
  • Sasha Tzekmanovich of the Humanitarian Action/MDM organization (St. Petersburg, Russia) discussed the group’s activities which focus on harm reduction for drug users, ensuring a blood supply free of HIV and HCV, trying to organize counseling and self-help groups, and stated that health professionals are often unwilling to treat drug users. As the epidemic is still new in Russia, the number of those needing antiretrovirals is not as high as the number of HIV-positive people.
  • Ilia Viazmikin (Belarus) discussed Positive Stream, the first AIDS NGO in Belarus, which is organizing self-help groups for people living with HIV and working on harm reduction.


Treatment Preparedness Activities in Developed Countries

  • Keith Alcorn of NAM (United Kingdom) said that the former National AIDS Manual (now just “NAM”) has been conducting treatment education programs since 1988. NAM is currently developing a treatment training manual for use in eastern and southern Africa in partnership with the International HIV/AIDS Alliance. They are working with Action AID in Zimbabwe to produce customized treatment training manuals and were to meet there (in Zimbabwe) in August to move the effort forward.
  • David Barr (New York City) founded the treatment education department at Gay Men’s Health Crisis before founding the Forum for Collaborative HIV Research, which worked with the U.S. Department of Health and Human Services on implementing U.S. treatment guidelines. “Some of the recommendations were implemented, some were not,” he reported.
  • Emily Bass of the International AIDS Vaccine Initiative (New York City) discussed how treatment preparedness will be an integral part of the vaccine preparedness efforts IAVI is planning as vaccine studies get under way in China, India, South Africa, Uganda, and elsewhere.
  • Rob Camp of the European AIDS Treatment Group discussed the EATG’s successful series of Southern States and Eastern States treatment education and mobilization workshops. The workshops have been conducted for the past several years in an attempt to increase community involvement and understanding of HIV/AIDS treatment in the countries of the Mediterranean, Central and Eastern Europe.
  • Julie Davids and Asia Russell of ACT UP/Philadelphia and the Health GAP Coalition discussed their work on treatment education at the local level as well as their global work to increase U.S. support for international AIDS treatment, reduce AIDS drug prices, and ensure that multinational corporations cover AIDS treatment for their employees.
  • Jay Dobkin of Columbia Presbyterian Hospital (New York City) helps counsel harm reduction programs in Central and Eastern Europe and the former Soviet Union. “What’s being discussed tonight is absolutely critical: educating patients is equally important as educating providers.”
  • Gregg Gonsalves and Bob Huff of Gay Men’s Health Crisis (New York City) discussed GMHC’s domestic and international treatment education and advocacy activities. Gregg described GMHC’s extensive client-focused treatment education activities in New York City. Bob stated that, “It’s important to understand how research is being done to be sure it’s ethical. It’s important to know how drugs were tested in order to understand what they do.”
  • Mark Harrington and Richard Jefferys of Treatment Action Group (New York City) discussed TAG’s work on research and treatment advocacy with the U.S. National Institutes of Health (NIH) and the pharmaceutical industry, and several projects on which TAG has collaborated with Treatment Action Campaign (TAC) in South Africa, and other North-South partnerships.
  • Kasia Malinowska-Sempruch of the Open Society Institute’s International Harm Reduction Network described the group’s 200 initiatives in place in Central and Eastern Europe, on the need for harm reduction programs to be tightly connected with HIV care, and on the current lack of such connections.
  • Subha Raghavan of Columbia University/Harlem Hospital (New York City) discussed the work that the Indian AIDS CBO SAATHI is doing to bring together different sectors responding to AIDS in India.


Next Steps and Action Items

  • The group decided to have a larger, more structured version of the Barcelona meeting sometime in the winter of 2002-2003.
  • A summary of this meeting will be prepared, translated, and distributed to participants and to other organizations and networks of people working on community mobilization, treatment education, literacy, and preparedness.
  • A working group from among the participants and others will get together to plan the fall workshop.
  • Julie Davids volunteered to develop a list-serve for the group.
  • Emily Bass volunteered to coordinate requests for treatment information.
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