Medical Mistrust Among African American Living with HIV/AIDS in the Alabama Black Belt: The Impact of the U.S. Public Health Service Untreated Syphilis Study at Tuskegee

Abstract

Background: Despite prior studies showing that a significant proportion of the general African-American population held conspiracy beliefs about HIV/AIDS, limited research has investigated medical mistrust and conspiracy beliefs among African Americans that are HIV-positive and the subgroups most likely to endorse such beliefs. I examined the endorsement of HIV/AIDS conspiracy beliefs and medical mistrust among 356 African Americans living in the Alabama Black Belt region who are living with HIV infection.

Methods: Longitudinal quantitative and qualitative research (a mixed methods approach) were used in five rural counties of the Alabama Black Belt where two AIDS Outreach Organization clinics provide medical and social support services to HIV-positive persons. In a questionnaire, patients reported agreement with statements capturing beliefs in HIV/AIDS conspiracies and mistrust in American medical professionals and health institutions. Face to face focus group discussions and personal interviews were conducted with patients to determine reasons for medical mistrust. Focus groups and personal interviews were digitally recorded, transcribed, and analyzed.

Results: Results indicated that the majority of the patients (68.4%) somewhat or strongly agreed that “A lot of information about AIDS is being held back from the public.” More than one-half (65.6%) somewhat or strongly agreed that “people who take the new medicines for HIV are human guinea pigs for the government.” 61.2% strongly endorsed that “HIV is a manmade virus.” 62.2% strongly agreed that “AIDS was produced in the governments laboratories” while 59.7% strongly endorsed that “AIDS is a form of genocide against black.” Majority of the participants (91%) somewhat or strongly agreed that “they do not trust white medical practitioners and (70%) do not trust American Medical Intuitions.” Participants of the focus groups raised the issue of the Tuskegee Syphilis experiment as a potential barrier, as well as the reason for the lack of trust.

Conclusions: The finding suggests that mistrust is a barrier to medication adherence among patients living with HIV/AIDS. The infamous Tuskegee Experiment was given as the main reason for the mistrust. In the years following the disclosure of the Tuskegee trials, the U.S. Public Health Service experiment is one reason African-Americans remain wary of mainstream medicine and health care providers. Negative past experiences contribute to medical mistrust among African Americans. Addressing medical mistrust and conspiracy beliefs should be the significant issues in HIV/AIDS treatment and prevention programs in the 21st Century.