In 2020, the pandemic offered the world a glimpse of what a life of isolation looks like. For people transitioning into old age, oftentimes those feelings of loneliness are inevitable, and detrimental to their well-being. Throw an HIV diagnosis into the mix, and long-term survivors risk feeling particularly alone.
One local organization, Positive Living Houston, is working to help older HIV-positive men combat those feelings of isolation by creating a space where they can find dignity and community, as well as help in navigating the evolving healthcare system.
“At the moment, we are offering services for HIV-positive men over the age of 50,” explains board president Jereme Scott. “We offer socialization programs, educational programs, and a referral service for any issues that should be handled by social workers or a different nonprofit.
“Although our mission states that we serve those 50 years and older, we will not turn any HIV- positive person away,” Scott adds. “Whether that person is female, male, or an adolescent, we will always be a resource for them as best we can.”
The group occasionally meets in person, but a majority of their gatherings take place via Zoom.
“Our organization was initially called The HIV and Aging Coalition Houston. We came up against a lot of roadblocks because of the words ‘HIV’ and ‘Aging.’ People who are aging with HIV don’t really want to talk about it,” Scott, who received his HIV diagnosis 39 years ago, says. “What our board decided to do was to create an organization that had a more positive approach than using those specific words.”
“We try to reach individuals who are at a turning point in their life, where they don’t know which way to go.” —Jereme Scott
Scott and the Positive Living board are now doing extensive work to engage with those who aren’t as connected to their community (or who have no family members to care for them as they age). “What we concentrate on is trying to reach those individuals who are at a turning point in their life, where they don’t know which way to go,” the leader explains. “It has been very difficult to reach those individuals. It’s much easier to reach those who are well socialized within the community.”
Board member Steven Vargas explains that he and his cohort know firsthand what it means to be a longtime survivor. “As we age, friends start passing away. We address the isolation piece, as well as other stuff that comes up whenever we meet with folks in a group—transportation, food security, medical appointments,” he says. “Most of us around that table have an awareness of where to direct them for assistance.”
Although health care has advanced since Vargas was diagnosed 20 years ago, he explains that the data is lacking when it comes to how HIV impacts those 50 years of age and older. “We’ve done a great job of providing medications that can help us live long, healthy lives, but it doesn’t end there like we thought it did back in 1996. As HIV-positive people age, we can start to feel some co-morbidities in our 40s and 50s that folks [normally don’t] get until their 60s and 70s. The chronic inflammation that occurs in our bodies due to the HIV in our system exacerbates some of those aging conditions.”
In regard to health care, Scott agrees that HIV care is no longer about mere survival, and that we should now be focusing on how the medical field can help HIV survivors thrive as they transition into their golden years. “I believe that in order to create an environment of good health for those of us who are aging with HIV, the comprehensive health care that is provided to aging individuals is no longer about just a patient-doctor relationship. It requires a holistic approach that addresses both the virus and the aging process. We’re losing our healthcare providers that [have decades of experience in] treating HIV. It’s getting difficult to find doctors who are specifically HIV-related doctors. Sure, you can go to Methodist Hospital, or you can go to UTHealth and find doctors who work in HIV, but it’s not like it was 15 years ago, where you had your primary-care physician who was an HIV specialist.”
The group’s healthcare advocacy work is done in tandem with addressing social issues, such as the widespread stigma that still surrounds HIV. “When we think about residential homes or assisted living, we hear about people having to go back into the closet,” Vargas explains. “That’s another place where they’re not really ready for us just yet. We’re trying to raise awareness on those fronts, and help people who might be experiencing some of the effects of those conditions, and to get them to places that they really want to be.”
Scott envisions a future where the organization becomes a stand-alone nonprofit supported by grant funding, with an executive director and trained professionals on staff. Until then, Scott looks to the next generation of leaders who will carry the torch. “HIV and aging is becoming a very important segment of the HIV community, because of all of the medical advancements that continue to extend the lifespan of individuals living with HIV. I personally have had HIV for 39 years. I never thought I’d live this long.”
“I was drawn to Positive Living Houston because I wanted to empower long-term survivors and surround them with people who can address whatever concerns they might have,” Vargas explains. “My ultimate goal would be that folks aging with HIV should still be able to age with dignity, just as they were planning to do before they received their HIV diagnosis. They may feel alone and not exactly sure what they’re going to do about certain situations that come up, but we want to support them—and also just have a good time with some folks.”
For more info, visit facebook.com/Positivelivinghouston