Encouraging Community Engagement in the Performance of Research at the Intersection of HIV and Aging

Editor: The devastating losses of the early AIDS epidemic fueled an urgency and purpose that led to historic collaborations between people living with HIV (PLWH), HIV clinicians, and researchers. This unprecedented effort led to significant advances best manifested by the rapid development and testing of highly effective antiretroviral treatments (ARTs) for HIV/AIDS. ART saved lives and is the primary reason we have an epidemic dominated by older PLWH. U.S. statistics from 2015 demonstrate that 47% of Americans with diagnosed HIV were aged 50 and older. Of these 38% (171,172) of PLWH were aged 50–54 years, 29% (131,430) were 55–59 years, 18% (81,438) were 60–64 years, and 16% (70,644) were 65 years and older. ¹ Current estimates suggest that by 2030, 64%–73% of PLWH will be aged 50 years or older. ^2,3 Notable examples directly catalyzed by PLWH (i.e., the community-based advocacy group AIDS Coalition To Unleash Power [ACT UP]), include accelerated access to ART, studies evaluating combination therapy (no previous precedent at the Food and Drug Administration), and research on ART adverse effects. ⁴ However, the hopefulness that community members experienced from those monumental successes has faded.

Given the history and effectiveness of community partnerships, researchers at the intersection of HIV and aging should be eliciting and embracing community input. Yet, a gap persists between the needs that older PLWH voice (what will happen to me when I cannot care for myself, I am waiting to die) and the research being pursued. ⁵ HIV research institutions do invite community stakeholders to the table but involvement is often superficial leaving advocates feeling unheard, unvalued, and fearful that the answers to their research priorities will not come in their lifetime. Specific examples generated by the authors who consist of PLWH and researchers include (1) development of novel and innovative strategies of HIV care and support services that purposefully address aging needs, (2) studies that focus on quality as well as length of life and address factors that negatively impact aging (depression, isolation, substance use, etc.), and (3) the long-term effects of ART in older adults. In addition, many older PLWH do not have a platform as they are too frail, sick, mentally and physically impaired or disabled, and are the “new silent majority.”

Challenges exist to improving community collaboration in research, but they are not insurmountable (Table 1). In this letter, we advocate for the implementation of community engagement from preconception to study implementation, data interpretation, and dissemination in HIV and aging research. This will represent a change in the current research culture and practice but it is the authors' collective opinion this is worth the time and effort. As was the case for inclusion of sex as a biologic variable, we expect this change will only come if required. ⁶ Thus, we challenge funders, publishers, and conference organizers to not only ask researchers in the fields of HIV and geriatrics/gerontology to thank community participants in presentations and publications but require documentation of community engagement throughout the research process. We believe these practices will lead to meaningful community engagement in the leadership of groups that fund and conduct research, in the committees that approve research and ultimately result in broad and innovative advances in the science and care of older PLWH. Older adults dominate the current epidemic: many feel abandoned by the community, providers, researchers, and health care institutions and some fear that change will come too late for them.