Within the increasingly aging population of people living with HIV in the U.S., most individuals are virally suppressed with the aid of antiretroviral therapy (ART) and confident about their ability to remain in control of the virus. But they need help navigating a range of other physical and mental health concerns, as well as addressing their current and future quality-of-life needs, according to research presented in July at the 23rd International AIDS Conference (AIDS 2020).
The findings drive home the larger point around elderly care in the context of HIV: That even as the HIV care community has come to focus more on the quality of the years a person lives rather than just the number, it has yet to systemically embrace that HIV disease management is just one slice of a much bigger health pie that warrants attention and coordination across a range of care providers and services.
In an AIDS 2020 session devoted to issues related to aging with HIV, a glimpse into the lives of older HIV-positive people in Chicago highlighted these needs within the context of a program designed to help meet them.
A Survey of 400-Plus Older People With HIV in Chicago
In Chicago, which is home to roughly 19,000 people living with HIV, according to AIDSVu, about 5,200 receive care through the Ruth M. Rothstein CORE Center, an HIV clinic and research facility originally formed in 1998 through a collaboration between the city’s Cook County Hospital and Rush University Medical Center. Of those 5,200 individuals, 48% are age 50 or older—and 16% are at least 60 years of age, according to Oluwatoyin Adeyemi, M.D., the senior director of HIV services at Cook County Health and an associate professor of medicine at Rush Medical College.
Adeyemi and her colleagues have been studying the needs of this aging group of patients for years; their CORE Healthy Aging Initiative was expanded in 2019 to improve both the level of research and the breadth and depth of programs focusing on people living with HIV as they grow older. At AIDS 2020, Adeyemi presented results from a survey conducted among 415 people over the age of 59 who visited the clinic in 2019.
This cohort somewhat closely mirrored the overall demographics of people living with HIV in Chicago: 83% of survey respondents were Black (6% Latinx; 9% white), and 70% identified as male. (In Chicago, roughly half of all people living with HIV are Black; 24% are white and 20% are Latinx, according to 2018 surveillance data. Four out of every five Chicagoans living with HIV are male.)
This was also a cohort with significant experience in living with HIV: Half of all respondents had been diagnosed at least 20 years earlier, and 79% had received their diagnosis at minimum a decade ago.
Survey Findings: Good HIV-Related Health, but Numerous Issues Under the Surface
HIV-related physical health was often not a concern among this group: 82% reported an undetectable viral load at the time they were surveyed, and 57% said they would classify their health as “excellent” or “very good.” Only 37% of respondents identified living with HIV as one of their top concerns among a list of 12 possibilities that included physical, mental, and quality-of-life issues.
That said, comorbidities were very common, with 50% of respondents reporting hypertension, 37% saying they currently smoked, 30% reporting depression, 25% reporting hyperlipidemia, 20% reporting diabetes, and 14% reporting kidney disease. Polypharmacy was also the norm among this group: 52% of respondents said they took six or more medications each day.
But while the older adults surveyed expressed overall confidence in their physical health, cracks showed in a view of their overall quality of life and their assessment of the future:
50% of respondents reported sometimes or often feeling lonely within the past month.
The most common concern expressed by participants was money, with 41% expressing this as a top concern.
Living with HIV generally was also frequently ranked as a top concern (37%), despite the overwhelming majority of participants having an undetectable viral load.
Additional commonly selected top concerns were housing (30%), non-HIV medical concerns (30%), concerns about who would provide care for them in old age (24%), memory issues (22%), and HIV disclosure or stigma (20%).
Respondents’ housing situation often appeared to be a source of stress. More than half of participants said they lived alone (in line with the number of participants reporting recent loneliness), while 20% did not have their own home.
Mental health—particularly a lack of socialization with others they feel they can trust—also appeared as a recurring theme among participants. Although this was predominantly a cohort of long-term HIV survivors, 22% nonetheless said they had only disclosed their status to clinic staff, and many did not involve their family in health conversations. Only 53% of women and 41% of men said they talked with their family about health problems. The difference between sexes on that question was statistically significant.
Speaking of differences between sexes: Adeyemi noted that significant differences were also seen in participants’ sex lives, with 49% of older men reporting sexual activity compared with 25% of women. Sexual health, meanwhile, was a much higher concern among women (22%) than men (7%).
Although many of the survey findings indicated few major concerns among the majority of participants, Adeyemi pointed to several trends that indicated trouble down the road if they are not addressed by service programs and providers. “This interplay of polypharmacy, social isolation, and comorbidities will likely increase the risk of falls, other morbidity, and other adverse events,” she said. “This needs assessment survey highlights the need to go beyond viral suppression in caring for people living with HIV.”