Community Advocates Spur Effort to Establish New Vaccine Trial Site in Brazil
By Alexandre do Valle Menezes and Ronaldo Mussauer de Lima
From 2-4 May 2002, a group of AIDS community advocates, government policymakers and others involved with HIV/AIDS met in the southern Brazilian town of Santa Cruz do Sul to begin forging plans for launch a vaccine trial site in their region.
It was an unusual role reversal: in the normal course of events, such endeavors generally begin with researchers or funders, with communities coming on board later in the process after plans are underway. The meeting was convened by a well-established AIDS NGO called GAPA/RS (Portuguese acronyms for Support Group for AIDS Prevention in the state of Rio Grande do Sul), an organization that sits on the National AIDS Vaccine Committee of the Ministry of Health (MoH), Brazil’s main advisory body to its AIDS vaccine program.
Although the meeting was the first public step in mobilizing local support, the notion of a trial site in Brazil’s south is not new: initial plans for the country’s vaccine program, launched in the early 1990s, foresaw a site in the region, building on its strong health care and research infrastructure. But, while sites were established in Rio de Janeiro and, more recently, Sao Paulo (both now part of the NIH-sponsored HIV Vaccine Trials Network), plans for the South were never developed.
Their revival was sparked when Brazil’s MoH announced late last year that it planned to boost AIDS vaccine research initiatives around the country. By that time, arguments for a site in the South were even stronger. One was its growing AIDS problem: while the epidemic appears to be subsiding in many parts of Brazil, the three southern states showed a 13% rise in the number of new AIDS cases last year (based on the number of people registering to get treatment in local health clinics). This increase is fueled partly by a substantial IDU epidemic in the region, which is not the case elsewhere in the country. In another new twist, a high proportion of HIV infections in the IDU group come from HIV subtype C rather than subtype B, which accounts for the vast majority of infections in the rest of Brazil.
During the 1990s, the infrastructure to support a southern trial site also grew stronger. Besides the existing universities and research hospitals, there was a build-up of the public health system, including the central state laboratory responsible for all HIV lab analyses as well as comprehensive clinical care for people with AIDS. Another plus is that the South has Brazil’s best harm reduction program, a response to the growing epidemic in a region with the country’s highest social development and income rates. The MoH (through its National AIDS Program, NAP) has supported state-of-the-art interventions, including needle exchange programs and projects that help HIV-positive IDUs adhere to the antiretroviral regimens offered free of charge by the public health system.
Against this backdrop, the MoH announcement of an expanded AIDS vaccine program led the NAP once again to view the South as a potentially important region, spurring GAPA/RS to begin organizing around the idea. That, in turn, led to the May meeting, which was attended by nearly 80 representatives from local PWA groups, sex workers associations, research organizations, the state health council, the central HIV laboratory and local and national health authorities.
The meeting’s goals were two-fold: to have participating organizations consider and incorporate vaccine issues in their daily agendas, and to take the first steps towards creating a future vaccine site and regional Community Advisory Board (CAB). Following NAP’s suggestion, it was agreed that the best strategy is to begin with studies on HIV seroincidence and other parameters that influence the feasibility of a region and its populations for vaccine trials—studies the NAP has agreed to fund. If these go well, build-up to a full vaccine trial site could then take place, most likely in collaboration with an international partner.
To advance this agenda, part of the meeting was devoted to setting specific advocacy goals for increased involvement of local public health agencies and research institutions. Each participating community organization left the meeting with an advocacy plan and a mandate to forge links with the local councils of research ethics, which could help support the establishment of regional CAB’s. They also made plans for monitoring and reviewing their progress and for keeping up political pressure and community momentum.
The advocates recognized that there could be difficulties along the way. Chief among them is the notion of organizing a trial site without a long-term partner or a vaccine to be moved into the clinic. But the government is in early stages of conversation with several companies about conducting vaccine trials, and participants left the meeting committed to continuous vaccine advocacy and to keeping the trial site issue moving—reasons for optimism that the South may join the global vaccine effort sometime soon. •
With reporting by Liandro Lindner of GAPA/RS, who coordinated the meeting.
Alexandre do Valle Menezes has been an AIDS advocate with Brazil’s Grupo Pela Vidda Rio de Janeiro since 1993. He is currently a graduate student at NYU’s Tisch School of the Arts and consults for IAVI on policy issues.
Ronaldo Mussauer de Lima is Director of Information Technology (IT) at IAVI and a long-time AIDS advocate. He was formerly president of the Brazilian AIDS community-based Grupo Pela Vidda (Rio de Janeiro) and head of the Brazilian National AIDS Program’s IT department.