The HIV community should not marginalize long-term survivors

The HIV community should not marginalize long-term survivors the way the broader community often marginalizes seniors, says Jax Kelly

Several years ago, when I was in my first decade of living with HIV, I felt a need to create something to benefit people aging with HIV. Perhaps it was too soon for me (I was in my forties) or the community (we hadn’t become half of all people living with HIV yet). What started with support groups morphed into research, and now you can attend conferences on HIV and aging.

But the community needs more.

As president of Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs, I joined a local network of agencies and non-profits engaged in the health and well-being of seniors. People joke about Palm Springs, calling it “God’s waiting room,” but I sensed there was a lot to learn from seniors in this desert community.

Seniors and my LKAPS colleagues have in common the problems of isolation, co-morbidities, poly-pharmacy, and stigma. Some have suggested the HIV community should not marginalize long-term survivors like the broader community often marginalizes seniors. During election season we are often reminded of the power of seniors as a voting bloc. Aren’t our elders aging with HIV similarly empowered to make change?

The differences reveal themselves through our experiences of surviving a plague, HIV criminalization, and an illness that is passed on by stigmatized sexual behavior and sometimes illegal substance use. Our stories—our wisdom—is validated by our willingness to stand up and use our voices to share what makes us unique. It is no accident that a lot has been written about long-term survivors of HIV during the COVID-19 pandemic. We may have lost heroes since the plague years, but people like Dr. Anthony Fauci, Peter Staley, Phill Wilson, Ann Northrup, and many others are witnesses still with us. We have a history of existing beyond the margins.

In my observation, I find that the differences are significant enough to advocate for services for people aging with HIV. I look to our elected officials to be inclusive of HIV-positive people in writing legislation that addresses services for seniors. I ask that our safety net programs like Ryan White and HOPWA develop Standards of Care for people aging with HIV and programs that finance senior housing for HIV-positive people. Researchers looking for a cure or improved therapies must continue to include people aging with HIV in their clinical trials and community advisory boards.

Because of the COVID-19 pandemic, LKAPS social activities went online. No longer could we meet at coffee houses, movie theatres, bowling alleys, or each others’ homes. We taught each other “Zoom 101” and how to make it fun by passing private notes to each other via “chat” during a slow point in a presentation. Others have used the green screen to create elaborate backgrounds or backdrops of exotic places we can only dream to visit.

These online experiences enable us to connect with folks we haven’t seen in ages because we couldn’t afford the airfare or because we couldn’t find time to travel. This sense of connection permits a semblance of community, an opportunity to forget our isolation, and a way to add order or routine to our recently untethered lives.

In a recent article in this space, Gabriel Maldonado, CEO of TruEvolution Inc., asked if there is “a role for community-based organizations who do not choose to fully medicalize their operations?” I hope so. LKAPS does not provide medical services but dreams of being part of a brick and mortar operation where community members can meet socially, learn about services and opportunities, and consider advocating on behalf of people aging with HIV. Our members need social workers and therapists to assist with access to housing and legal services and individual or group therapy. Our volunteers are invaluable, but we need paid staff dedicated to navigating a system that people aging with HIV often find too stressful and bureaucratic to access.

In California, there is government funding for independent living centers and aging and disability resource centers. Senior nutrition programs and caregiver resource centers also receive public support. LKAPS has recently taken up providing information about these programs to people aging with HIV. We have collaborated with local groups helping with wills, health directives, and other legal issues. There is a need for a compassionate voice from our community to educate and serve people aging with HIV.

Senior centers and senior living spaces are at the frontlines of the battle with coronavirus. Through advocacy for inclusion of people aging with HIV in the future plans of these facilities, perhaps we can extend our outreach and use our expertise to assist the broader aging community, gain a seat at the table, and find that brick and mortar building to sustain us.

Jax Kelly, president of Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs (, serves on the California Planning Group, the Community Scientific Subcommittee of the ACTG, the steering committee of The Reunion Project, and NMAC’s HIV 50+ Strong and Healthy program.