When Jeff Taylor learned he was HIV-positive in the late 1980s, he assumed, like everyone who was diagnosed during those early years of the disease, that he had received a death sentence.
The popular narratives about people with HIV, shaped by movies like Philadelphia and, more recently, Dallas Buyers Club, have done little to counteract the belief that infection leads to an early death. In fact, the equation of HIV with death is an attitude that is slow in changing, despite evidence — and increasing patient longevity and lifespan — proving otherwise.
Advances in treatment and long-term management mean people with HIV can live happy, productive lives. And like everybody else, they will face a familiar dilemma they never expected to live to see: aging.
In Greater Palm Springs we might be inclined to refer to gerontology as “the art of aging gracefully,” as so many people move here to do just that. But aging well and maintaining a high quality of life while living with a chronic disease like HIV is an idea that has yet to gain cultural traction. This is problematic, given that by 2020 an estimated 70 percent of people living with HIV will be older than 50 — a phenomenon Taylor calls the “Silver Tsunami.” These individuals are as concerned about living happily and and healthfully into their golden years as anyone else. Given that the area boasts a heavy concentration of retirees, it’s the ideal place to pursue his mission: researching long-term, innovative healthcare solutions for those aging with HIV.
As more people live long lives with HIV, Jeff Taylor and HARP-PS are researching strategies to keep people healthy and vital.
Taylor, like many others living with the virus, is thriving.”
As the head of the HIV+Aging Research Project-Palm Springs (HARP-PS), Taylor directs community-based research designed to study innovative health and wellness strategies to meet the needs of those aging with HIV. This area of medicine, which he calls “a brave new world in gerontology,” has been slow to gain momentum since it emerged about a decade ago, but that’s where Taylor comes in.
By spearheading guided focus groups for Coachella Valley residents, thay can determine the priorities of people aging with HIV and their providers and research ways to address their specific needs and concerns. This “patient-centered process” allows for maximum community engagement and helps guide healthcare studies and research priorities, making a direct impact on patient care
Regardless of whether we live with chronic conditions, all of us worry about staying active, fit, and cognitively robust as we age. However, those living with HIV have concerns that the HARP-PS seeks to address. For example, patients who received the earliest available antiviral drugs that have been saving lives since 1996 are also facing neuropathy and other adverse physical effects from the medication’s toxicity, which has lessened over the decades as the drugs have evolved.
Mental health issues remain a concern for those who “over the course of the [HIV/AIDS] epidemic have lost so many friends."Jeff Taylor
HARP-PS also seeks to study issues like the way HIV “attack the lining of the gut,” destroying beneficial gut flora and interrupting enzymatic processes, which can cause inflammatory reactions that mimic aging symptoms and/or lead to complications like cardiovascular disease and higher rates of cancer. More studies address the “humpty dumpty syndrome,” skinny arms and legs and a belly of hard visceral fat that is metabolically dangerous, as well as premature memory loss and other cognitive issues that can be a part of life with HIV.
Even with the grants HARP-PS has garnered, funding for research can be so competitive that it needs an organization specifically for this purpose. Partnerships also become essential. For example, in partnership with researchers at UCSD, UCLA and USC, patients in the Palm Springs area are provided with transportation to San Diego or Los Angeles to obtain an MRI for brain analysis for one particular study.
HARP-PS’s initiatives caught the attention of the recently established School of Medicine at the University of California, Riverside, which is working with the organization to partner with long-term HIV survivors and medical and service providers in the community to identify and prioritize local health challenges. This, Taylor believes, is the only way to adequately address the needs of this growing population.
It’s not only the physical aspect of living with HIV that can become problematic during aging. Although the advent of the prophylactic treatment PrEP and effective HIV therapies have reduced the stigma of the virus by preventing people from contracting or transmitting it, mental health issues remain a concern for those who “lived through a war” in the disease’s early years — those who “over the course of the epidemic have lost so many friends.” Depression is a normal aspect of aging, but those who have been living with HIV for several decades are also living with survivor syndrome and post-traumatic stress disorder that can result from any grievous loss of friends and acquaintances and, in many cases, long-term partners or spouses.
Taylor also talked about the danger of those living and aging who spend time in nursing homes where they might be forcibly re-closeted by potentially homophobic staff. On top of being physically vulnerable, these individuals are often forced to relive the stigma they may have faced in their earlier years.
In order to provide the most comprehensive and targeted healthcare information, Taylor for the past 14 years has hosted a monthly HIV education program called Positive Life, where people with HIV can learn about advances in treatments and research. The forum allows them to learn directly from care providers and researchers rather than pharmaceutical companies. This and HARP-PS’s collaboration among patients, therapists, social workers, and doctors — is dedicated to conducting patient-centered, community-based research to help improve the lives of people with HIV as they grow older.
As a growing number of people live long lives with HIV, Taylor hopes we rethink healthcare strategies related to keeping people healthy and vital, regardless of age or HIV status. A brave new world, indeed.