Older adults living with HIV in San Francisco face staggeringly high rates of mental health issues and levels of loneliness, as well as experience a dire need for regular social connections and health care coordination, according to a landmark new report by the ACRIA Center on HIV and Aging at GMHC released Sunday.
The report, issued as the first part of the multi-site Research on Older Adults with HIV (ROAH) 2.0 project, demonstrates in stark terms that living with HIV as an older adult presents a unique set of challenges—and requires a complex set of coordinated solutions. More than 50% of all people living with HIV in the United States are age 50 and older, and by 2020, 65-70% of people living with HIV will be age 50 and older.
“While there is increased awareness that there is a critical need for both more services for, and more research about, older adults living with and affected by HIV, our nation is not fully prepared for the medical and social implications of the growth of this population,” said Stephen Karpiak, PhD, Senior Director for Research for the ACRIA Centers at GMHC and a Co-Principal Investigator of ROAH 2.0. “We hope that the fresh insights from this timely study—which come just as adults age 50 and over are becoming the majority of all people with HIV in the United States—will inspire action to address the many challenges older adults with HIV face.”
In San Francisco, where 65% of people living with HIV are age 50 or over and the cost of living is among the highest in the country, the need to know more about older adults with HIV is particularly pressing. Though most participants reported that their HIV is well managed and that their health is “excellent” or “good,” 41% reported that their health is “fair,” “poor,” or “very poor.” They also reported a high burden of physical symptoms and diseases other than HIV.
Furthermore, survey participants said that they contend with hunger, low income, and burdensome housing costs. Many also said they lack ways to get help with the activities of daily living or care should they fall sick or be injured.
The findings of the report underline the importance of providing older adults with HIV with medical services guided by the principles of geriatric medicine (an approach tailored to the complex needs of older adults with multiple chronic conditions, e.g., multimorbidity and associated risks of polypharmacy), enhanced access to mental health treatment and social support, trauma-informed care that acknowledges the repercussions of a history of trauma and avoids re-traumatization, and programs to help ease the financial burden of living in a high-cost city on a low fixed income.
Other notable findings in the San Francisco ROAH 2.0 study include:
- Rates of depression and PTSD were extremely high: 38% of participants scored as having moderate to severe depression and 35% scored as having post-traumatic stress disorder (PTSD) using conservative criteria. About half (51%) of the participants reported childhood sexual abuse.
- Participants show a high prevalence of multimorbidity (having two or more chronic illnesses). They report a heavy burden of illness and physical symptoms: On average, they reported experiencing seven symptoms or diseases besides HIV in the past year. Data shows that the older adult with HIV is evidencing higher rates of illnesses typically associated with aging (cancers, cardiovascular disease, osteoporosis, kidney disease, liver disease, diabetes). Multimorbidity is associated with elevated risk for polypharmacy.
- Three-quarters of participants said their needs for emotional support were not fully met, and just over one-fifth said they needed “a lot more social support.”
- The most frequent need among participants (and the need that was most often unmet) was having opportunities to socialize or meet others.
- Nearly 60% of the participants reported that their housing costs account for about half, or more than half, of their income.
- A brief assessment showed that 19% of participants were food insecure (meaning they have uncertain or insufficient access to food) and 25% experienced both food insecurity and hunger.
The full study, a successor to a pivotal ACRIA study of 1,000 older adults with HIV in New York City in 2006, will ultimately include almost 3,000 older adults living with HIV in sites across the United States, including New York City, Upstate New York, Chicago, and Alameda County (the East Bay), as well as San Francisco. Results will help social researchers and care providers across the country develop more services geared specifically toward people living with HIV who are over the age of 50.
“GMHC is committed to being a national leader in the study of older adults living with HIV as we all start to fully grasp the enormity of the challenges faced by the 50-and-over population living with HIV,” said GMHC CEO Kelsey Louie. “We hope that service organizations across the country will start to use these findings as they develop services and interventions designed to help this population. Since entering into a strategic partnership with ACRIA in 2017, GMHC has redoubled its efforts to work collaboratively with our older adult communities, launching the Terry Brenneis Hub for Long-Term Survivors earlier this year, relaunching GMHC’s pivotal Buddy Program, and using new data to better tailor our services. We look forward to shepherding more vital research that will help us provide the best possible holistic care for our older clients.
Hello
I was in the Golden Compass Support Group at San Francisco General Hospital for a little over six months. I had to leave because the group was so poorly facilitated by Alberto Rangel. Helen Lin facilitated the group sometime before Alberto. He and Helen let a married gay couple with the loudest voices dominate the group. Alberto also let these two participants ramble on about the subjects that had nothing to do with the current topic. He repeatedly showed favoritism to two very conservative participants who often made judgemental statements. This participant said that all people with HIV taking meds, shouldn’t have unsafe sex. I disagreed. When I tried to speak, this facilitator allowed these participants to interrupt me and tell me that I deserved to get syphilis after having unsafe sex. This facilitator clearly was uncomfortable when I talked about possibly contracting syphilis. Later after I complained to Helen Lin about him, the facilitator wouldn’t speak to me nor allow me a chance to talk. It’s very stressfull to have a passive aggressive facilitator. My own doctor at Ward 86 told me I shouldn’t have been singled out for something that was a personal decision. People should be able to have a conversation about STDs or sex in an HIV support group without judgement. When I was in an HIV support group in the early 90s, people had no problem with these subjects. And neither did the facilitators who were all volunteers. After I complained Helen Lin’s response was that people in the group can say what they want and they weren’t going to deal with this issue because it was too upsetting for group participants. I have filed a grievance with ALRP about this problem.