The concerns of the diverse communities impacted by the HIV epidemic are represented by the Global Community Advisory Board (GCAB) on the national level and by the local Community Advisory Boards (CABs) of each AIDS Clinical Trials Unit.
Orbit Clanton (Co-Chair)
Jan M. Kosmyna M.S., B.Ed., R.N(Co-Chair)
The ACTG Global Community Advisory Board (GCAB) supports community outreach, education, and participation in research, and represents community concerns in the ACTG. Comprised of a member from the CAB at each ACTG Clinical Research Site (CRS), the GCAB works to integrate community involvement into site plans and operations to advance HIV/AIDS research. The GCAB provides an opportunity for affected communities, and especially for the participants in ACTG clinical trials, to:
- Better understand the clinical research process
- Voice questions or concerns regarding clinical studies, their development, implementation and outcomes
- Contribute their knowledge, perspective, and experience to efforts to enroll and retain trial participants
- Advocate on behalf of clinical trial participants
- Volunteer for protocol teams and subcommittees
- Mentor new members and ask for mentorship when needed
- Help keep research in the forefront of technology/communication systems
- Ensure that trial materials are available in all appropriate languages
- Promote ethical research practices
GCAB members are selected by their CABs and serve two-year terms. GCAB members may also be selected to serve on the non-scientific ACTG committees. Participation by the community on ACTG committees and protocol reviews is conducted through the Community Scientific Subcommittee (CSS) of the GCAB.
Community Scientific Subcommittee (CSS) of the GCAB
The CSS seeks to represent the interests of the diverse communities impacted by HIV in the clinical research mission of the ACTG, ensure that ACTG scientific priorities reflect the needs of the entire spectrum of people with HIV/AIDS, and protect the interests of research participants in ACTG studies.
The CSS advocates for broad inclusion of diverse participants in ACTG clinical trials and for innovative approaches to ensure the inclusion of traditionally under-represented populations in studies. The CSS participates in the ACTG Executive, Science, and Resource Committees, and on each protocol team, and articulates community perspectives relevant to protocol design and development, and to the accrual and retention of participants.
The CSS strives to maintain a membership with a broad degree of experience and geographic, racial, gender, and ethnic diversity that can effectively represent the larger HIV community and the various communities impacted by the epidemic.
The CSS also works closely with the GCAB and local ACTU Community Advisory Boards (CABs) to facilitate communication between local communities and the national ACTG and its committees. At least 80 percent of CSS members are required to be active members of their local CABs.
The CSS is working to address the following community-generated research priorities:
- Cure research—including reservoir and latency research and research on immune therapy
- Aging/Long-term effects of treatment
- Women’s health
- Is research safe and ethical?
- Treatment for drug-experienced patients
- Antiretroviral therapy (long acting, drug development, side effects, LMIC/LRS); ART regimen simplification
- Inflammation; co-infections and co-morbidities
- Community engagement and education
Additional CSS priorities include:
- Addressing enrollment barriers in trials; diversifying participation so that results are meaningful across populations; gender and race inclusion requirements (women, diverse ethnic groups, aging, transgender individuals) in clinical trials
- Improved data collection and dissemination and web presence
- Social implications of an increasing population living and aging with HIV