NIDA Organizers: Jacques Normand, Ph.D. and Lynda Erinoff, Ph.D., AIDS Research Program
Meeting Purpose and Intent:
The Centers for Disease Control (CDC) estimates that one quarter of those infected with HIV in the U.S. are unaware of their serostatus. HIV+ individuals who do not know that they are infected are more likely to transmit HIV to others. In addition, HIV/AIDS is a treatable disease, and early identification and linkage to care results in better health outcomes. Currently, African-Americans (who tend to be late testers) have a much higher death rate from HIV/AIDS than any other racial/ethnic group. Since African Americans bear a disproportionate burden of the U.S. HIV/AIDS epidemic, it is likely that expanding HIV Testing and Counseling will impact this community.
This meeting brought together a diverse group, including African-American opinion leaders, representatives of AIDS advocacy organizations and drug policy organizations, the faith community, researchers from diverse disciplines including health disparities, criminal justice, drug abuse treatment, primary care, and representatives from SAMHSA, CDC, and NIH, with the purpose of providing input to research initiatives on how to better deliver HIV education, testing, counseling, and treatment. One major objective of this meeting was to identify all potential harmful and beneficial effects associated with conducting research on HIV Testing and Counseling. Another objective was to solicit suggestions on how to enhance the beneficial effects while mitigating harmful effects of HIV Testing. A final objective was to initiate new collaborations and establish ongoing dialog with African American opinion leaders.
Brief Discussion of Meeting Outcome:
Presentations in the morning focused on the following questions:
- What is the issue?
- What do we know?
- What do we need to know?
- What are the challenges we will face in conducting this research?
While the agenda called for breakout into topic tables at lunch on treatment and health disparities, community, criminal justice, and stigma and distrust, the agenda was modified because the speakers had clearly identified issues in each of these areas and it was felt that group discussion would be more valuable. Some of the issues that the group identified are:
Treatment and Health Disparities
- Patterns of racial segregation in housing that make structural interventions imperative such as utilizing existing community organizations to deliver services and encouraging health care providers to locate within the community
- Lack of adequate funding for HIV/AIDS treatment and the variation in funding across states
- The major role that primary care physicians can play in testing and counseling
- A need to, as much as possible, provide one-stop shopping for services as part of drug abuse treatment
- Addressing homophobia in some segments of the African-American community
- Pairing the faith community with the research community
- A growing need for HIV prevention among older African-Americans
- A need for an effective communications strategy
- Providing after-care following incarceration
- Support for voluntary testing but concern about mandatory testing for vulnerable groups such as prisoners
Stigma and Distrust
- Stigma is not addressed in current prevention efforts
- Addressing the conspiracy of beliefs in the African-American community (e.g., a cure for AIDS exists but is being withheld, a lot of information about AIDS is being held back)
- Protection of confidential information
The group discussion was followed by a presentation on participatory research--involving the community in research--which is particularly relevant to research on marginalized and/or vulnerable populations.
Expected Follow-up: Presenters slide presentations will be posted on the AIDS Research Program Web site.
Publications: A detailed meeting summary is being prepared and will be posted on the AIDS research program Web site.