At a time when over half the people living with HIV are ages 50 and above, GMHC’s ACRIA Centers for HIV and Aging are needed more than ever. Older adults living with HIV face unique circumstances, yet the healthcare providers and community groups that serve them often do not know much about their issues, said ACRIA Centers at GMHC Director Christopher Culp.
“Somebody’s body may age differently if they are living with HIV, due in part to their medications, and there has not been a lot of research on that,” Culp explained. “In general, the United States does not have a good plan for aging. And for people aging with HIV, the issues are more complicated, and healthcare providers know less about what is going on.”
Effective HIV medications allow people aging with HIV to live much longer than many expected, Culp added. While that is a welcome development, it means they are often dealing with survivor’s guilt, loss, and loneliness, along with other physical and social barriers.
That’s where ACRIA comes in. Culp and the ACRIA team offer training and workshops to healthcare providers, community organizations, and older adults about the health and psychosocial aspects of aging with HIV, particularly around sexual health and wellness.
That includes HIV prevention for older adults, where ageism can be an issue. “Many providers are not thinking about older adults having sex or using substances,” Culp added, “which are activities that can put someone at risk for HIV.”
The need for ACRIA’s services is evidenced by the 5,000 subscribers to its newsletter. While these services are funded to support New York City residents, they have a wider reach, since some workshops and trainings are presented virtually.
A recent online workshop that Culp gave about sexual health for older adults attracted 35 healthcare providers from 11 states, as well as the U.K.’s National Health Service. While many of them had experience with either managing HIV or treating older adults, few had both. “That gap is a huge barrier for serving people aging with HIV holistically,” he said.
Capacity-Building Outreach
Since joining GMHC last year, Culp has stepped up ACRIA’s outreach and capacity-building for community partners serving older adults in New York City, drawing on his extensive experience as a sexual health educator through the National HIV Classroom Learning Center and Planned Parenthood.
“No one organization is going to be the perfect fit for everyone, so we are talking with partner organizations about bringing people together,” Culp said. “That way, older adults can get the services they want and have the conversations they want to be having.”
For instance, at GMHC’s annual HIV and Aging Conference in June, the agency’s clients and staff will come together with community partners and service providers to share information and resources, ranging from white-paper presentations on best practices to group discussions among providers and clients. “We want to hear from older adults living with HIV about the kinds of help, skill-building, and support they are looking for – and share this information with all of our partners in New York,” Culp said.
ACRIA is part of GMHC’s pioneering work in the HIV and aging field, with over half the agency’s clients ages 40 and above. The ACRIA team works in tandem with the agency’s Terry Brenneis and David Boger Hub for Long-Term Survivors, a community space for people diagnosed with HIV before the advent of antiretrovirals in the mid-1990s.
One of ACRIA’s peer health educators, Lillibeth Gonzalez, herself a long-term survivor, facilitates the LTS Hub’s empowerment and support group, “Thriving @ 50 & Beyond,” for older adults living with HIV. Gonzalez invites health-care providers to field the group’s wide-ranging questions, providing a space for community, support, and learning. She also provides one-on-one wellness calls and support to LTS Hub members.
Sex Positivity, Sense of Purpose
Culp’s focus is not all HIV management and prevention. He collaborated with SAGEPositive, which serves LGBTQ+ elders living with HIV in New York City, on an event at its new Center for Sexual Wellness and Aging that featured sex toys for older adults to destigmatize navigating pleasure and changing bodies. Culp said they anticipated around 30 participants, and 52 people quickly signed up. “Sex positivity for older adults is a big part of what we do,” he said.
ACRIA is also talking with faith-group leaders about how GMHC’s HIV/STI Testing Center can serve their members, thanks to a collaborative HIV-prevention project for faith-based initiatives, sponsored by the NYC Department of Hygiene and Mental Health. “We’re bringing together as many voices as we can and amplifying them for everybody’s benefit,” Culp said.
Culp recently gave a talk about aging, sexuality, and faith communities to the Borough of Brooklyn Interfaith Advisory Group HIV Task Force for World AIDS Day, which has led to invitations from similar groups in the Bronx and Staten Island.
He said faith groups can also play an important psychosocial role for people aging with HIV, particularly long-term survivors, who are seeking a sense of belonging. “Faith groups can be a place to find a community and purpose,” he said.
Relatedly, many people aging with HIV are seeking help navigating the transition to death – a topic that can feel taboo for anyone of any age. For GMHC clients, Culp is bringing end-of-life doulas into the conversation. “They are trained to assist people in preparing for death, thinking about what that means – and what they want to do in the meantime,” he said. “Receiving an HIV diagnosis is one form of transition, surviving and thriving is another, and we want to support older adults throughout the spectrum of their seasoned years.”
Several end-of-life doulas volunteered at the agency’s annual Mental Health and Wellness Day last June. Besides practical issues like advance directives and wills, these doulas facilitated open-ended conversations with older GMHC clients living with HIV about their concerns and fears around aging.
“Our clients are really interested in talking about these issues, so we want to create spaces for that,” Culp said.
