The HIV Research Catalyst Forum: Treatment, Prevention, Advocacy is modeled after the North American Treatment Action Forum (NATAF), a community research advocacy conference founded in 1995 and held annually until 2005. Following are reports from the 1995 and 2001 NATAF.
This article is from TheBody.com
NMAC: 1995 National AIDS Treatment Advocates Forum Hailed a Success
The 1995 National AIDS Treatment Advocates Forum (NATAF), which took place in Los Angeles on October 15 through 18, has been hailed as a success. NATAF drew almost 200 participants ranging from treatment advocates and educators to case managers, pharmaceutical and government representatives, medical professionals and people with AIDS.
"NATAF has been a phenomenal success," said Moisis Agosto, Director of Research and Treatment Advocacy at the National Minority AIDS Council. "What I think is particularly important is that we were able to attract participants from all over the United States, which gave us a clear view of the different issues affecting each of those communities."
The forum was designed to foster dialogue about current HIV/AIDS treatment issues and to develop advocacy strategies around those issues. Topics of discussion included Development of Antiviral Drugs, Development of Opportunistic Infections Drugs, Research Policy and Legislation, Malignancies, Clinical Research and Basic Science. Rated particularly high among participants were the Treatment Education and Immune Based Therapies sessions as well as the innovative Integrating Women's Issues Into Treatment Activism.
NATAF faculty included top treatment and research advocates such as GMHC's David Barr and Derek Hodel, AmFAR's Jane Silver, Mark Harrington and Gregg Gonsalves of TAG, Anne Donnelly of Project Inform and WORLD's Rebecca Denison. In addition, Dr. Mark Feinberg of the Office of AIDS Research, Susan Krown of Sloan Kettering Cancer Center and Merck's Emilio Emini were just a few of the other faculty members to share their expertise.
"This was just the first step in the process of cultivating dialogue among treatment advocates and with the medical establishment, government and pharmaceutical industry," explained David Barre, coordinator of the forum. "We anticipate that the 1996 forum will be even more successful."
During the closing plenary of the forum, facilitators for each of the sessions gave brief reports back about the specific strategies developed for the various treatment issues that were addressed. A detailed final report of those strategies is currently being developed and will be available after January 1, 1996 to forum participants and other interested individuals and organizations.
"We hope that the strategies developed at NATAF will serve as guidelines for treatment advocates across the country to assist in our national efforts and develop local advocacy strategies of their own," added Agosto.
NATAF was sponsored by the National Minority AIDS Council. Co-sponsoring organizations included AIDS Project Los Angeles, Gay Men's Health Crisis, National Association of People With AIDS and the Treatment Action Group. Supporting organizations included AIDS Action Baltimore, AIDS Action Council, American Foundation for AIDS Research, DIFFA/Houston, Mobilization Against AIDS, National Education Association and Project Inform.
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TAGline January/February 2002
Mobilizing the Troops: Newly International North American Activist Alliance Gathers in Vancouver
"Gathering Strength to Fight"
By Mark Baker
For the first time ever, NATAF (newly renamed from the National AIDS Treatment Activists Forum to the North American AIDS Treatment Action Forum) took place outside of the U.S., in the beautiful Canadian city of Vancouver, British Columbia. Over 450 delegates from around the U.S. and Canada joined others from Eastern Europe, Poland, Russia, Cuba, Puerto Rico, Mexico and Costa Rica in what was the first truly international NATAF. Mark Baker, editor of Provincetown Positive, was there to chronicle blow by blow the events of the three-day get-together. "Once again," Baker writes, "those gathered consisted of people living with HIV and their advocates -- all from a multitude of diverse backgrounds, cultures and races. There were men and women; straights, gays, lesbians and people with histories of intravenous drug use; Caucasians, African-Americans, Latino/as and Asians. But for all our diversity, we had two unifying factors in common -- HIV disease and our desire to become better treatment advocates and activists." A pared-down version of his 2001 NATAF report follows.
As HIV/AIDS treatment issues were becoming more and more important in the early 1990s, a few dedicated treatment activists realized the need to create a place in which fellow treatment activists could share treatment information and further develop treatment and research advocacy. As they discussed how to do this, it became increasingly obvious that a mechanism needed to be developed to transfer the knowledge of experienced treatment advocates to members of all communities infected and affected by the AIDS epidemic. The goal was clear: create a mechanism to help educate people about treatment issues who could then take home what they learned to further educate their communities about increasing access to care and treatment. As this basis for NATAF solidified, it also became clear that the complex issues of public policy, funding and HIV prevention also had to be included due to their effects on treatment and research priorities. Out of all this, the first NATAF was born in 1995.
December 2nd was the first day of NATAF 2001. It began with a pre-conference orientation that gathered all of us together to learn how to gain the most from the next three days of plenaries and workshops. At the front of the room was a handmade timeline that began with the year 1980 and ended with 2001 entitled, "The History of HIV/AIDS." Of particular interest to me was the note at the start of the timeline indicating that 1959 was the year in which a man died in the Congo from an unidentified illness. An analysis of a saved blood sample later found him to be the first confirmed case of HIV infection -- in 1959. The timeline was a graphic illustration of the events, both good and bad, that have shaped the North American HIV/AIDS epidemic. It was an apt reminder that we who call ourselves "advocates" help make history. Whether it's history in HIV/AIDS policy, treatment research and development, and/or in an individual's access to care and treatment, it's been the HIV/AIDS advocates at the center of historical landmarks.
The opening plenary that night was called, "From Where I Stand." It began with an address from a Native North American chief whose indigenous people once numbered 10,000 in this territory, yet today number a mere 360. He spoke eloquently about the parallels faced by Native Americans and people living with HIV, noting that hopelessness in our communities is caused and perpetuated by the media images which stereotype gays, PWAs, and IDUs. The fight is made easier when we come together, at places like NATAF, to work collectively to defeat the ignorance of the broader community. He ended with a moving song, traditional for his people, in tribute to all those that have died from this disease.
Anuar Luna of Mexico gave the first keynote speech. He stressed that the "official numbers" of people living with HIV or AIDS in Mexico -- 50,000 -- is not an accurate picture of the estimated 150,000 people in actual need of access to HIV care and treatment. The epidemic in Mexico is centered among gay men ages 15-44, but women are increasingly affected. Only roughly 75% of these -- usually the ones that work -- have access to treatment, but the quality of the care varies greatly. Sometimes anti-HIV drugs are available, sometimes they are not; sometimes PWAs have access to lab tests for viral load, most do not; and genotypic and phenotypic tests are still a rarity. AIDS services organizations provide limited services, mostly peer education and support. There are a limited number of "drug banks" -- places that gather unused supplies of anti-HIV drugs and redistribute them to those in need. Only recently have Mexican AIDS activists started to meet with the political decision-makers to advocate for more money -- $48.5 million -- needed for HIV/AIDS treatment for Mexican PWAs, as well as more human resources and technical assistance to combat the disease.
Phill Wilson of the U.S., a 21-year AIDS survivor and a gay man of color, spoke next listing the possible repercussions of the 9/11 terrorist attacks on democratic freedoms that could affect policies governing healthcare issues such as HIV/AIDS.
Louise Binder of Canada completed the opening plenary. The leading Canadian AIDS activist decided early on that treatment information would save her life. She believes that the 1996 World AIDS Conference held in Vancouver -- heralded as "The Cure Conference" -- was actually the birth of AIDS complacency in North America. Combination therapy -- including the fabled protease inhibitors -- was credited with creating the Lazarus effect whereby PWAs who were formally on their deathbeds had tremendous initial response to HAART and rebounded to seemingly much healthier lives. Even though this effect is complicated by the toxic side effects of the drugs, most of the world breathed a collective sigh of relief, believing that the epidemic was over.
But because today's HIV treatments are a reprieve and not a cure, the need for both activism and advocacy still exists. We still need new clinical trials, new drugs, expanded access to treatments (both in North America and globally), and advocacy for improvements in the social ills that feed epidemics like HIV and AIDS -- poverty, homelessness, and illiteracy. The question is -- will the younger generation now being infected rise to activism to demand the cure that still eludes us? We all need to unite to create a truly global community of activists and advocates to defeat this global epidemic.
Monday, December 3rd began with a breakfast plenary entitled, "The Making of an Epidemic: The Implications of Public Policy." Martin Schechter of the University of British Columbia started with a presentation of statistics. As of 2001, 40 million people worldwide are infected with HIV -- half of which are women. In 2001 alone, there were 3 million deaths worldwide from AIDS and 5 million new infections. That translates to 14,000 new infections every day -- 95% of which are in developing countries, like South Africa where 1 in 3 people are infected. Against this dismal backdrop, there are new regions of the planet that hold great concern for the continued spread of HIV/AIDS. These "hot spots" include China, India, Indonesia and the states of the former Soviet Union where, globally, the epidemic is now growing the fastest.
The afternoon workshop session IV called, "Antiretroviral Strategies: Activist Intervention and When to Start, STIs, Salvage Therapy, Long-Term Effectiveness, Adverse Events and Beyond" had the longest title of any workshop offered at NATAF. Mark Harrington of TAG joined Bob Huff of GMHC and Ben Cheng of Project Inform in San Francisco to present. Mark began with an overview of the evolution of the U.S. HIV treatment guidelines that were issued starting in 1997. He noted the troubling controversy that centered on the Guideline's recommendation for all people with <500 CD4 cells to begin triple-drug HIV therapy. This was recommended even though all the studies done to date at the time proved HAART's effectiveness only in people with counts <200 CD4 cells. The recommendation was based on the overwhelming belief in Dr. Ho's "Hit Early, Hit Hard" treatment theory, the possibility of HIV eradication and the goal of preventing irreversible damage to the immune system.
Due to the ensuing, almost immediate, widespread application of the new 500 CD4-based "standard-of-care" treatment guidelines, to this day the question of "When to start anti-HIV therapy?" has not been answered. Unfortunately, that key question is unlikely to be answered. Of course, today science has proven that damage to the immune system caused by HIV infection is partially reversible -- CD4 cell counts can and do rebound from low nadir levels. And these new T cells produced in the thymus do their jobs quite well.
Ben Cheng ended the workshop by addressing the new drugs in the HIV treatment pipeline. Besides new drugs in the existing NRTI, NNRTI and protease inhibitor classes, Ben mentioned the latest development of integrase inhibitors and entry inhibitors -- the most widely known one of which is T-20. Some of the new drugs in development may be too toxic to be taken orally, but may be successfully developed as topical microbicides. On the whole, though, Ben believes that the drug pipeline is not healthy, mainly due to the fact that big pharmaceutical companies are swallowing up smaller, more HIV-specific drug companies and not necessarily increasing the size of their HIV research and development capabilities.
Kicking off another workshop which focused on effective advocacy with U.S. government agencies, AmFAR's Jane Silver gave a brief overview of the National Institutes of Health (NIH) and the Office of AIDS Research (OAR). She noted that the NIH is currently spending $2.4 billion annually on AIDS research. That accounts for 85% of the world's publicly funded AIDS research effort. Silver recommended three improvements for federal AIDS research: First is a cross-government-agency, coordinated HIV research strategy with its own dedicated budget; second is a process to influence the direction of HIV research within the NIH; and third is a watchdog capability overseeing NIH's HIV research and budget. Finally, Silver argued for the further development of coalitions with advocates for other diseases in order to reach the goals that still elude us.
Gregg Gonsalves spoke further on where the present system fails us. First, there is little work being done to find new targets for HIV therapy, noting that there are fourteen proteins in the viral RNA of HIV, yet we have only targeted two of them with approved drugs at present. He strongly urged advocates to push for the study of new targets. Second, there is still not enough long-term follow-up research on the HIV drugs we now prescribe. Third, and perhaps most importantly, there remains a disconnect between HIV research and HIV drug development. Whereas the NIH funds basic HIV research and clinical trials, the pharmaceutical industry still controls drug development.
Gregg noted that there are models appearing that attempt to bridge this disconnect. IAVI (the International AIDS Vaccine Initiative) is the most visible, being a public/private partnership that first identifies promising vaccine candidates from research and then provides initial support for the vaccine development. Finally, Gregg noted that we still need a system in place through the NIH to do Phase IV long-term follow-up studies in randomized clinical trials.
In the closing plenary entitled, "Infections and Inequalities: International Issues and HIV," Dr. Julio Montaner of Vancouver's St. Paul's Hospital noted the disconnect in many countries between areas that have the greatest number of cases of HIV infection yet the fewest antiretroviral drugs available compared to the areas with the smallest number of infections yet most drugs available. He cited the 2001 article by Hogg and colleagues in JAMA that found that it proved viable to start HAART at CD4 counts >200 regardless of viral loads. The article indicates that CD4 counts appeared to be a better predictor of disease progression than viral load and suggested that a count of 200 CD4 cells be the new trigger level to start HAART.
Montaner reminded those gathered that after the 1996 World AIDS Conference in Vancouver, the prevailing theory in therapy was summed up by Dr. David Ho's infectious soundbyte, "Hit early, hit hard." Now in 2001, the theory is once you start HAART at CD4 counts >200 then "hit hard." He lamented that had he known back in 1996 what he knows today, 65% of HIV-infected individuals in British Columbia could have waited to start triple therapy. This would have represented a huge savings in drug expenditures, physician and lab costs, and sacrifices in quality of life.
He qualified this observation by noting that this new information is based on only 2-3 years worth of data. Therefore, there is still no definitive answer on the optimal time to start treatment. He concluded stressing that while viral load may not be as important as the CD4 count in determining when to start therapy, it is still important once treatment is started: to monitor response to treatment, viral breakthrough, the emergence of resistance and the likelihood of disease progression.
He then turned to the global front, citing the present day catastrophe of 40 million people HIV-infected worldwide and fewer than one million with access to treatment. He cited the new "hot spots" of HIV infection around the world, noting that if nothing is done soon, these places will experience an increase in HIV infection on par with that which Africa has seen in the fifteen years from 1984-99. As a result of this huge increase in poverty and a decrease in productivity, there will be financial and social ruin on a scale never before seen.
Montaner closed by noting that the idea of "human security" is increasingly based on the infrastructure needed to support people leading healthy lives. The provision of anti-HIV drugs alone will not solve the problems that face us globally. We need to promote the development of social systems that people need to be healthy, which will have a positive impact not only on AIDS, but on TB, malaria and malnutrition as well. The WHO has placed the dollar figure needed to stem the tide of HIV/AIDS by 2005 at $9.2 billion a year -- the same amount that the U.S. spends annually on cosmetics and the Europeans spend on ice cream! The obvious conclusion: we either pay now or pay later, but later the bill will be much, much higher.
1995 Los Angeles, CA
1996 Washington, DC
1997 San Diego, CA
1998 Philadelphia, PA
1999 Miami Beach, FL
2000 Dallas, TX
2001 Vancouver, British Columbia
2002 New Orleans, LA
2003 Phoenix, AZ
2004 St. Louis, MO
The final NATAF convened in 2005 in Oaxaca, Mexico.