Aging and HIV/AIDS: A New Era of Convergence
By John Feather, PhD, CEO, Grantmakers in Aging (GIA)
When the HIV/AIDS epidemic began in the early 1980s, an HIV diagnosis was a virtual death sentence. Aging was not on the agenda and the medical, community, and philanthropic support structures for aging and HIV/AIDS were worlds apart.
This is beginning to change. Thanks to advances in treatment, the ability to live for decades with HIV is a remarkable success story. Of the 1.1 million people in the US now living with HIV, half are 50 or older. In addition to long-term survivors, people are acquiring the virus in their 50s, 60s, and 70s. Within a decade (by 2030) it is anticipated that 70% of people living with HIV will be 50 or older.
For all these reasons, HIV/AIDS must now become an aging issue and a priority for philanthropy. Grantmakers In Aging is working to raise awareness among aging services providers and aging philanthropy and is reaching out to funders in other areas, supported by a grant from Gilead Sciences.
We’re telling the stories of diverse older people living with HIV and offering guidance for interested funders in our publication, Aging Positively: Bringing HIV/AIDS into the Aging Services Mainstream: An Introduction for Funders. (Find it, with a recent webinar and opportunities to get involved, at bit.ly/GIA-HIV-aging-info.)
Challenges at the Intersection of HIV and Aging
Age 50 may seem young for aging services, but many people living with HIV experience a cascade of health challenges even when their HIV is well-controlled, including classic geriatric syndromes, and find they need geriatrics-expert help at younger ages. Their HIV providers may not understand aging issues or know how to manage multiple non-HIV conditions, and some people “age out” of youth-oriented HIV care settings.
The result is a no-man’s-land for care and social support. This can be jarring, sometimes causing a second wave of trauma, says Sarah Hamilton of Funders Concerned About AIDS. “Older people are seeking treatment for other conditions, like heart problems, and coming up against new stigma and discrimination that they haven’t experienced for years when they go to places that haven’t dealt with HIV positive people.”
Older people still need good HIV care, but it must be good geriatric care as well. One provider who has bridged the gap is geriatrician Eugenia Siegler, MD, who created the Aging with HIV Program at Weill Cornell Medicine’s Center for Special Studies in New York, with support from The Fan Fox and Leslie R. Samuels Foundation. “The HIV services network and the aging services network are completely siloed right now,” she observes in Aging Positively. Her program makes geriatrics consults available within the structure of an HIV clinic.
Her advice for funders: Listen to people living with HIV. “This area is so new and the populations, the necessary clinician skills, and access to services, are all so different. Part of the support has to be a careful exploration of the local environment and what patients want.”
Challenges Beyond Medicine
Good care requires more than medication. Profound challenges such as stigma, social isolation, economic insecurity, guilt, and substance abuse are common. Social support is critical, but often hard to find.
New issues of diversity and social justice are also surfacing. New infections are growing fastest in the African American and Latinx communities, older Hispanics have a rate of new infection more than double that of whites, and women now represent one quarter of all people living with HIV.
Embarrassment Is Dangerous
Wrong assumptions often stop older people from taking protective measures: they are less likely to use a condom, take PrEP medication for prevention, or get tested for HIV.
Older people are also less likely to bring up safe sex practices or sexual health, or to be asked about them by a health care provider. “Doctors underestimate the sex lives of older adults. We still have sex!” says Miriam Whitehead-Brice, a member of Older Women Embracing Life (OWEL) in Baltimore. “I speak to groups and ask, ‘Is anyone asking their grandma if she’s using a condom?’ They laugh and say, ‘She’s just baking cookies.’ But I tell them, ‘She just wants you to hurry up and get out of the house because Mr. Bill is coming over!’”
An Opportunity for Philanthropy
Domestic HIV/AIDS-focused grantmaking totaled only about $186 million in 2017, according to Funders Concerned About AIDS. Funding for HIV/AIDS and aging totaled only $3 million. Support increased somewhat with the recent launch of the Gilead HIV Aging Positively initiative and The Southern HIV Impact Fund, managed by AIDS United.
Grantmaking in aging and HIV/AIDS offers the opportunity to have an immediate impact through:
• Supporting wraparound care, including housing, food security, legal assistance, job (re)training, and transportation support.
• Promoting outreach, education, and testing, and syringe exchanges.
• Supporting participation by people living with HIV at conferences and community events.
• Bridging gaps in medical care with Continuing Medical Education and expanded roles for nursing, social work, HIV self-management programs, and dementia care.
• Deepening social support, including social events for people living with HIV and caregivers.
“People aging with HIV are some of the most vulnerable, stigmatized, and systematically excluded people in our society. This issue should feel relevant to many different kinds of funders,’’ says John Feather, CEO of Grantmakers In Aging. “Whether you work on social determinants of health, or clinical research, or mental health and social services, or social justice issues, we need to pull together to ensure that people entering late life with HIV can meet their complex needs.”
Many older people living with HIV are engaged in advocacy, education, and mutual support despite their own formidable challenges. As we work together to seek solutions, they are our best guides.