Minorities Remain Underrepresented in HIV/AIDS Research Despite Access to Clinical Trials

Abstract

Background The reasons for minority underrepresentation in HIV/AIDS clinical trials remain unclear. We aimed to evaluate the knowledge, experience and factors that influence minority participation in HIV/AIDS studies in the US. Methods An anonymous, bilingual, self-administered survey on study participation was given to HIV-infected adults attending AIDS Clinical Trials Group-affiliated clinics in the US and Puerto Rico. Chi-square tests were used to evaluate differences by race/first language/level of education. Logistic regression was used to estimate odds ratio (OR) and 95% confidence interval (CI) for factors associated with being talked to about participation in a study. Results We analyzed 2,175 complete surveys (221 in Spanish). Among respondents, 31% were White, 40% black/African American (AA) and 21% Hispanic. The overall rate of previous participation in any HIV/AIDS study was 48%. Hispanics were less likely to know about studies compared to whites and AAs (67% vs. 74% and 76%; p<0.001). Compared to whites, AAs and Hispanics were less likely to have been talked to about participating in a study (76% vs. 67% and 67%; p<0.001). The OR for being talked to about participating in a study was 0.65 (95% CI: 0.52–0.81) for AAs and 0.65 (95% CI: 0.49–0.85) for Hispanics, compared to whites. AAs and Hispanics were more likely to state that studies were not friendly to their race (17% and 10% vs. 4%; p<0.001). Conclusions Minorities continue to face barriers for HIV/AIDS trial participation, even when clinical research is available. Enrollment strategies should better target minorities to improve recruitment in HIV/AIDS research.

A successful approach to minimizing attrition in racial/ethnic minority, low-income populations

“…Multiple recent studies document that minority clinical-trial candidates are significantly less likely than whites to be approached about study participation and to be enrolled in clinical studies, including trials in the emergency department, for HIV/AIDS patients, for cancer patients, and in the evaluation of new molecular-entity drugs and biological products [1], [2], [3], [4]. Although fewer studies have been conducted on racial/ethnic differences in participant retention in clinical trials, the evidence shows that retention rates in trials are significantly lower for minorities and those who speak a language other than English at home [5], [6], [7].…”

Eliminating Racial/Ethnic Disparities in AIDS Clinical Trials in the United States: A Qualitative Exploration of an Efficacious Social/Behavioral Intervention

“…Yet for decades in the United States, African American/Black and Hispanic persons living with HIV, referred to here as “AABH-PLWH,” have been substantially under-represented in AIDS clinical trials (ACTs) compared to their White peers [3–6]. This under-representation of AABH-PLWH is a concern on several levels.…”

“…The TTI is a social-cognitive theory that emphasizes three streams of influence on health outcomes: the individual/attitudinal, social, and structural. At the individual/attitudinal level of influence, the literature indicates barriers to ACTs among AABH-PLWH include insufficient knowledge of and low self-efficacy to manage ACT participation [6]. Substance use problems are another potential impediment.…”

Outcomes from the Body & Soul Clinical Trials Project: A university-church partnership to improve African American enrollment in a clinical trial registry

“…In addition to benefitting society at large, CTs may benefit individual volunteers by providing access to new treatments before they become available to the general public. Since 1993, the NIH has required that all sponsored research include adequate representation of women and minority groups [1]; however, participation of African Americans (AAs) in CTs remains low [2, 3]. Without adequate representation of AAs and other minorities in CTs, it is impossible to know if therapies will work equally well across populations and how, if at all, progression of disease may differ by racial/ethnic subgroup.…”