[Spotlight originally posted July, 2011]
The ACTG Network Meetings provide an opportunity for CAB members to learn about more than research – they learn about each other. At the ACTG Network Meeting (June 20-24, 2011), four CAB members gave presentations about their local clinical research sites’ CABs and communities. This meeting session has become a regular event at the ACTG meeting. This year, CAB members from Eldoret, Dallas, Johannesburg, and San Juan talked about the CAB and site activities and how the epidemic has affected their communities.
Carlos Velez (pictured above) presented information on the demographics of the epidemic in San Juan, Puerto Rico. Puerto Rico ranked 10th in AIDS diagnoses through 2009 in State/Dependent Areas of the USA. Infection in males represents 73.9% of reported HIV cases, and injection drug use accounts for the largest proportion of those cases. The CAB at the Puerto Rico – AIDS CRS meets monthly and discusses open protocols, recruitment and retention issues, drafts of upcoming protocols, and educational topics. They participate in community events such as World AIDS Day, Thanksgiving Day, and Gay Pride events. The CAB has been successful in educating community members about the relevance of research and benefits of clinical trials and collaborated with other community-based organizations. Their goal is to achieve an increase in participation and contact with primary care physicians.
David Morelle explained some of the outreach activities of his CAB in Johannesburg, South Africa. David reviewed the statistics of the epidemic and the social and political challenges of dealing with so many HIV positive individuals. Over 1 million persons in South Africa are on antiretroviral therapy. The Wits HIV CRS is taking part in both ACTG and HPTN studies. The CRS CAB includes 15 members with backgrounds in education, social work, and HIV/AIDS activism; most members are female, and most have been participants in clinical trials. There is no limit to tenure on the CAB. CAB members discuss ongoing studies and community issues, participate in community outreach, and have spoken about research on the radio.
Lionel Hillard showed the group how his site in Dallas, Texas, has expanded and is moving into new quarters. The CAB at the Peabody Health Center CRS at AIDS Arms includes individuals affected by HIV and other members of the community, with a special focus on including those populations that have a disproportionate ratio of infection. Members on the CAB serve renewable one-year terms and provide input on effectiveness of services to the community. They review how accessible site materials are for the consumer. Lionel also discussed the CAB’s confidentiality policy, so important in community contact.
Amina Shali presented information on her very active CAB in Eldoret, Kenya. In providing background on the epidemic in Kenya, Amina reported that 1.5 million Kenyans are living with HIV and 1.2 million children have been orphaned by HIV. Amina spoke proudly about Eldoret, an agricultural town which boasts world class marathon athletes, Moi University, and the very successful HIV program, AMPATH – Academic Model Providing Access to Health Care. Amina also explained how the epidemic had followed the route of truck drivers and first affected sex workers. The Moi University CAB is small but does outreach with schools, churches, hospital support groups, and women’s groups and has been successful in reaching the Muslim community. They have educated their community on HIV and clinical trials, and the site is planning future participation in several ACTG studies.
Every day at the ACTG Group Meeting is educational, but this annual opportunity adds to our understanding of the work, successes, and challenges each community faces.