The ACT2 Program and Eliminating Racial and Ethnic Disparities in HIV and AIDS Clinical Trials
This is an advance summary of a forthcoming article in the Oxford Research Encyclopedia of Communication. Please check back later for the full article.
In the United States, African American and Hispanic individuals are greatly over-represented among the population of the 1.2 million persons living with HIV/AIDS. However, African Americans and Hispanics are substantially under-represented in HIV/AIDS clinical trials. HIV/AIDS clinical trials are research studies that test and evaluate the safety and effectiveness of potential treatments for HIV/AIDS and the complications of HIV/AIDS with human volunteers. Through involvement in HIV/AIDS clinical trials, HIV-infected individuals can gain access to promising new treatments and a level of care and support services that may not otherwise be available to those with limited resources. As such, HIV/AIDS clinical trials are critical to the development of new medications and treatment regimens. The reasons for under-representation of African Americans and Hispanics are complex and multi-faceted. First, people of color experience barriers to HIV/AIDS clinical trials at the level of the individual; primary among those are fear and distrust of medical research, grounded in large part in the knowledge of past abuses of populations of color by medical research institutions, but also complicated by present day experiences of exclusion and discrimination in health care settings and the larger society, often referred to as “structural racism.” Moreover, people of color experience barriers at the level of social networks, such as peer norms that do not support engagement in clinical trials. Further, organizations that provide HIV primary care are not well positioned to help persons of color living with HIV/AIDS overcome these barriers to trials, and therefore, are less likely to refer them to trials compared to their white patients. In addition, people of color living with HIV experience a number of structural barriers to trials, such as difficulty with access and navigation of the trials system, which is unfamiliar and oftentimes daunting. Last, studies suggest that the inclusion and exclusion criteria of clinical trials exclude a greater proportion of people of color compared to white patients. The ACT2 Program is designed to reduce these types of barriers to HIV/AIDS clinical trials for people of color and thereby increase the proportion of those who will screen for and enroll in trials. The ACT2 Program is grounded in the antiracist stance to foreground how structural racism, which often manifests as exclusion, stress, discrimination, and poor access to health care resources, limits equitable participation in clinical trials. Motivational interviewing and a flexible, collaborative clinical method is the ACT2 Project’s main counseling approach. The ACT2 Project was tested in a rigorous randomized controlled trial and was found highly efficacious. Clinical trial research units can eliminate racial or ethnic disparities in HIV/AIDS clinical trials by implementing multi-component interventions such as ACT2 to build motivation and capability to access trials, offering repeated access to screening, and centralizing screening efforts where appropriate. Further, modifications to study inclusion criteria will be needed to increase the proportion of people of color who enroll in HIV/AIDS clinical trials.