Another survey with HIV long-term survivors. Have we learned anything new?

On Wednesday, March 22, 2023, the Survivors of HIV Advocating for Research Engagement (SHARE) Board conducted a webinar highlighting the results of their survey “Aging with HIV: What do you need to thrive?” They sought to answer questions such as, “What are the key health-related questions/issues that research should address around HIV and aging?,” “What matters most to people aging with HIV?,” and “What health outcomes are of most relevance to people aging with HIV?”

Sadly, the SHARE survey and report revealed nothing new. 

Their overall conclusions were that: 

• Community members living with HIV can be and need to be included in research projects;
• Care concerns in long-term survivor groups may reflect the loss of friends and the potential of stigma from family members, necessitating need for paid care;
• Planning for older adulthood is challenged further when it living into advanced age wasn’t anticipated; and,
• Significant need exists for financial management, housing, medication burden support. 

It is notable that SHARE meant for the survey not only to identify priority research issues that matter to long-term HIV survivors, but also to facilitate collaboration among long-term HIV survivors, policy makers, clinicians, and researchers. 

They recruited a group of 267 long-term survivors (whom they defined as 50 years or older who had lived with HIV for ten years or more), ranging in age from 42 to 77, with an average length of diagnosis of 29 years. Survey respondents were heterosexual (36%), gay (29%), bisexual (19%), and lesbian (13%), with reported race/ethnicities of Black or African American (33%), Hispanic (28%), and white (52%) from both rural and urban areas around the country. Participants completed a survey and interviews by phone, Zoom, or face-to-face. 

The survey revealed slightly different priorities among those who have lived with HIV for less than twenty years compared with those who have lived with HIV for more than twenty years, but overall, the six most frequently reported needs among long-term survivors were: (1) enhancing quality of life (by far the most prominent issue), (2) addressing mental health and cognitive decline, (3) maintaining physical health, (4) addressing loneliness and isolation, (5) issues of medication, including polypharmacy concerns, and (6) accessing appropriate healthcare. 

Care planning and caregiving were also identified as critical issues, with more than 50 percent of respondents stating “I’m not sure who would provide care for me,” particularly among those who were diagnosed more than twenty years ago. More than 80% of respondents also reported having experienced stigma based on race/ethnicity, gender identity, sexual orientation, age, and HIV status.

Since January 2016, I have studied and reported on issues faced by us long-term HIV survivors, including several community-based surveys and studies such as this one. I have attended (via Zoom) several webinars reporting on the findings of those studies. While I make no unwarranted claim to expertise in the field of HIV, I can and do claim a great deal of lived experience with HIV as well as knowledge gained through my studying and reporting.

For many years, we long-term survivors have known and made public our concerns about being included in research projects that affect our lives and other issues identified in the SHARE survey. One need look no further than The San Francisco Principles 2020, which five of us long-term survivors wrote and distributed after the virtual AIDS2020 conference. 

In the Principles, we identified the same issues (stigma, financial stress, mental healthcare needs, the lack of trained geriatricians, concerns about the effects of the virus and our medications on our bodies, the lack of political will to address those issues, etc.) and proposed solutions. We were not alone — several major AIDS-related groups have long insisted on the inclusion of us long-term survivors in any and all research and clinical trials that affect us. Nothing about us without us is more than just a catchy slogan — it is a priority that many of us have demanded since as early as 1983 when people living with AIDS promulgated the Denver Principles. 

For me, this webinar raised several questions: What is being done to get the results of this survey, and others, into the hands of policy makers, clinicians, and researchers who can actually do something with them? 

What concrete actions are being taken as a result of these many community surveys? 

How many times must we ask the same questions, getting the same answers, before our answers to those questions are implemented in meaningful ways? 

It seems to me, and to many of my fellow survivors, that our needs — for informed healthcare, for financial help to afford medications and living expenses, for mental healthcare, for community-based solutions, etc. — have been known for long enough. What we need is policies and actions that address those needs.

We already know what we need. When, if ever, will those needs be met?