Springer blog

Ending the HIV Epidemic: Community Involvement Then, Now and Always

L_springer_mini_logoRonald O. Valdiserri MD, MPH

Professor, Department of Epidemiology

Rollins School of Public Health, Emory University


David R. Holtgrave, PhD

Dean and SUNY Empire Innovation Professor

School of Public Health

University at Albany, State University of New York


The theme of this year’s World AIDS Day (2019)- is “Communities make the difference.”  Like many aphorisms, the brevity of this phrase belies the depth of the wisdom contained within it. At face value, the slogan attests to the necessity of affected communities being actively involved in our collective response to HIV. For those who lived through the earliest days of the epidemic and can recall the formation of community-based, grass-roots organizations to provide care for people suffering with AIDS—often in advance of governmental efforts to do so--this statement is self-evident. Others may remember the vocal and relentless advocacy of groups like ACT-UP and Treatment Action Group (TAG) and how these community voices made a difference by increasing access to new and promising treatments.

Important as it is to recall the history of community response to HIV/AIDS, we would be mistaken to assume that the time for community involvement has passed. Granted, we now have new tools to effectively prevent the sexual transmission of HIV and treatments that are so vastly improved that they can assure a near normal life span for persons who are able to take advantage of them. And research continues apace at the National Institutes of Health to develop better treatments—including the search for an HIV cure as well as a vaccine to prevent infection. But welcome as they are, these new tools to prevent and treat HIV, by themselves, will not bring an end to the epidemic. And that’s why it’s essential that we redouble our efforts to not only involve affected communities in our response to the  HIV epidemic but that we also take steps to empower them in ways that enable them to benefit from advances in HIV prevention and treatment.

In a recent publication in AIDS and Behavior, we outlined the reasons why affected communities must continue to be actively and meaningfully engaged in publicly funded efforts to end the HIV epidemic. Fundamentally, calling for active community participation in all phases of program, policy and research is akin to endorsing the broader principle of health equity which recognizes the need to re-balance the unequal allocation of power and resources (social, health and otherwise) that result in health disparities among vulnerable and under-served populations. Affected communities are able to bring their lived experiences to the table, helping to target, shape, refine and evaluate intervention approaches to redress disparities in HIV health outcomes. They can speak directly, and in real time, to social and other structural barriers that prevent them from accessing needed services. Consider the example of HIV PrEP (pre exposure prophylaxis) use among gay men of color. Although no one familiar with the scientific literature would dispute the ability of PrEP to prevent the sexual acquisition of HIV, increasing its uptake among gay men of color will require more than simply increasing their awareness of its effectiveness. To successfully engage these populations we must actively  address stigmatizing attitudes and other structural barriers that impede PrEP uptake, especially among  Black and Hispanic gay men. Directly involving gay men of color in campaigns to increase PrEP use can help inform policy makers and practitioners as they develop communication strategies to confront stigma and explore potential solutions to other structural barriers that can block PrEP uptake—like navigating complex health and payment systems.

Engaging communities in efforts to respond to health disparities is not unique to HIV. Public health practitioners addressing Important health issues ranging from diabetes to mental illness have long relied on community engagement as a strategy to inform research, policy, and intervention design. But as public health practitioners and researchers, when we do engage communities, we must assiduously avoid limiting their input to problem identification; affected communities must also be empowered to identify potential solutions that resonate with the realities of their day-to-day lives. As such, authentic community engagement must often include robust elements of community organizing as well as targeted and sustained support to enhance community capacity.

In short, if we are serious about ending the HIV epidemic in the United States, we must value and support community engagement with the same value and support that we afford to biomedical and other science-based interventions.  Without doing so, we will neither end HIV nor mitigate its disparate toll on affected communities.