Seventy percent of people living with HIV will be over age 50 by the year 2020. This stunning statistic highlights the myriad complications facing long-term survivors and people affected by HIV as they age. For those who lived through the dark, early days of the epidemic, there are long-standing issues related to a life disrupted: grief and loss, trauma, higher risk of depression and substance misuse, and in many cases, disability. And for many of those whose lives were saved by antiretroviral therapy, there is ambiguous loss and the work of reclaiming an unanticipated life. While HIV is now a manageable condition and the urgency of earlier decades has faded, thousands of long-term survivors continue to experience ongoing personal consequences related to the overwhelming devastation in certain communities in the 1980s and 1990s, as well as the impact of stigma up to the present day.
Since 2015, The Reunion Project (TRP) has addressed these needs by providing weekend gatherings around the country aimed at helping long-term survivors connect and talk about their common experiences. Several workshops at USCA 2018, facilitated by advisory board members of TRP, presented an overview of its history along with plans for future activities derived from a roundtable held earlier this year. Yet, perhaps most meaningful to the long-term survivors who were present was the rare opportunity to give voice to their experiences and feelings as survivors, witnessed by those who share similar experiences. Like TRP weekend workshops themselves, this format created a safe container in which people shared not only struggles but their strategies for physical and emotional resilience, as well.
TRP summits are funded by grants and guided by a board that includes prominent advocates, such as Jeff Berry (of Test Positive Aware Network, and editor-in-chief of POSITIVELY AWARE), Matt Sharp (independent consultant), Jeff Taylor (HIV+Aging Research Project-Palm Springs), Chris Bartlett (William Way Center), Waheedah Shabazz-El (PWN-USA), Louis Spraggins (independent consultant), and Greg Cassin (Shanti Project). These weekend workshops, held in cities around the country, are designed to recognize common experiences of long-term survivors—stigma, pain, loss, and trauma—and to build resilience and self-determination among those affected by the magnitude of the epidemic. TRP summits are “an opportunity to gather together to share our stories of survival while honoring our past and acknowledging our resilience, both individually and as a community,” states board member Jeff Berry. While the emphasis of TRP summits has been on those living with HIV for many years, it is recognized that the definition of who is a long-term survivor is not as important as the process of coming together to heal. It is the individual who self-identifies as a long-term survivor.
Despite the extraordinary physical and emotional impact of HIV on long-term survivors, these consequences remain largely hidden and out of the public consciousness. At another plenary at USCA 2018, Ron Stall, Ph.D., M.P.H., an investigator of Multicenter AIDS Cohort Study (MACS)—a longitudinal analysis of thousands of gay and bisexual men—announced research findings indicating that the prevalence of post-traumatic symptoms among long-term survivors is actually higher than the “shellshock” experienced by soldiers in World War I. TRP workshops address these symptoms. Jeff Berry notes: “There is a yearning . . . to be seen and heard. Many feel that they have been left behind, and yet they have gone about their daily lives all these years despite having survived multiple losses and trauma, financial hardships brought on by the disability trap, psychosocial issues including survivor conflict, isolation, and PTSD-like symptoms, and the onset of multiple co-morbidities at an earlier age than many of their HIV-negative peers.”
In recognition of these significant unmet needs, in March 2018 TRP convened a National Roundtable Forum including a diverse group of more than 50 advocates with the goal of coming to a consensus regarding a Coalition of Survivorship, as well as to begin a process to build a sustainable and powerful movement. In advance of the meeting, the committee gathered research papers and fact sheets and devised four overarching themes to organize the discussion: research, programs, community building, and advocacy. Eight roundtable participants were asked to lead discussions on key issues faced by long-term survivors: isolation, stigma, and shame; services for women and LGBT seniors; resources for people of trans experience living with HIV; research on older adults with HIV; employment; and programs such as NMAC’s “HIV 50+ Strong and Healthy” and the HIV & Aging Working Group of the San Francisco Department of Aging and Adult Services.
‘There is a yearning... to be seen and heard. Many feel that they have been left behind, and yet they have gone about their daily lives all these years despite having survived multiple losses and trauma...’
Recommendations for each of the four areas were made following facilitated discussions among the attendees:
Research: More studies are needed on disparities across communities, technology transfer, and research methodologies and compensation, along with research about lived experience, communities, aging, and co-morbidities. Standout issues for research include the South (the epicenter of HIV in the United States), women, the long-term impact of antiretroviral therapies, trauma and other mental health concerns, “early aging,” and inflammation.
Programs: There is a need for more goal-oriented, system-based programs (such as navigation and employment) along with those that are individual/community-based (e.g., addressing isolation and well-being) and that promote state-of-the-art technology, rapid dissemination, and replicability. There is a need for programs that are community-based and created though expanding partnerships and stakeholder engagement, including those focused on access and accessibility, awareness, skills and support, and competence, with priority needed for programs addressing mental health and well-being, employment, and economic justice.
Community Building: Recommendations included social and community organizing, broadening networks across demographic groups (including intergenerational), and expanding partnerships with a focus on bringing long-term survivors together both formally and informally. The need for safe spaces was noted, along with efforts to build a long-term survivor community, reach long-term survivors in rural areas, and foster a better understanding of the role and power of networks of people living with HIV, including an analysis of power and privilege within the wider long-term survivor community, Additionally, it was noted there should be efforts to integrate best practices with aging service communities and to engage youth and those who acquired HIV perinatally.
Advocacy: Advocacy was recognized as the means by which these goals will be accomplished, while never losing sight of the need for self-care and community-care among advocates. The following critical issues were identified: housing; mental health; long-term consequences of medications; dementia and other cognitive issues; job training; needs of women, especially women of color; and needs of trans people, including binary and non-binary individuals. Other fundamental concerns included the meaningful involvement of people living with HIV/AIDS; reauthorization of the Older Americans Act; and protecting Social Security, Medicaid, and Medicare.
Upcoming TRP workshops will be held in Washington, D.C., and New Orleans, with other efforts directed toward the role it can play in giving voice to long-term survivors and raising awareness about both the opportunities and challenges faced by survivors going forward. While HIV has taken a tremendous toll on several generations of men and women around the world, it is the actions and voices of long-term survivors themselves that will be the source of healing. Says Jeff Berry, “The collective strength and wisdom of these hidden survivors can help guide future generations as they age with HIV.”
David Fawcett, PhD, LCSW, is a substance abuse expert, certified sex therapist and clinical hypnotherapist in private practice in Ft. Lauderdale, Florida. He is the author of Lust, Men and Meth: A Gay Man’s Guide to Sex and Recovery.
This article was originally published on TheBodyPRO, an essential resource for people whose work intersects with the HIV/AIDS epidemic. It was reprinted with their permission.