Today is HIV and Aging Awareness Day, an opportunity to celebrate the resilience and advocacy of long-term HIV survivors, many of whom have been fighting for access to treatment and freedom from discrimination since the emergence of the virus in North America forty years ago. It is also a time to reflect on how our health care and social services infrastructure can continue to evolve to best meet the needs of older adults living with HIV and long-term survivors, many of whom face unique barriers to healthy, dignified aging.
Effective treatment has allowed people with HIV to live longer, healthier lives. Today, more than half of people living with HIV are over the age of 50. A person living with HIV who is in treatment and virally suppressed has a similar life expectancy to their HIV-negative counterparts. However, long-term HIV survivors struggle with increased susceptibility to conditions like heart disease, kidney disease, and diabetes, and they may experience frailty and age-related illness at younger ages. Additionally, stigma and discrimination can create barriers to comprehensive, person-centered care.
Many people with HIV never anticipated growing older and, similarly, HIV services and aging services frameworks were not optimally designed for older adults with HIV. Aging services providers may be unfamiliar with the unique needs and concerns of people living with HIV. Similarly, many HIV providers may be encountering the aging-related health and social service needs of their patients and clients for the first time. In addition, siloes between aging and HIV services systems can make it difficult for people to access the whole-person care and support they need, when they need it.
Innovation and collaboration across systems and at the state, local, and national level can help. For HIV and Aging Awareness Day, we’re sharing updates from the aging services network in New York, Massachusetts, and Texas about partnerships between our networks, HIV service providers and state governments that are reaching people aging with HIV where they are, providing the tailored supports and services they need.
New York State Department of Health AIDS Institute Partners With the New York State Office for the Aging to Reach Older New Yorkers with HIV
As of late 2020, 57% of people living with HIV in New York State were over the age of 50. In response to the growing needs of this population and consistent with its plan to End the Epidemic, the state Department of Health, through its AIDS Institute, launched a 5-year pilot across 10 regional sites to provide comprehensive health-related supportive services like case management, support groups to address loneliness and isolation, peer navigation, and insurance counseling.
Integral to the success of the pilot is a creative and collaborative approach to partnerships with existing aging services. To this end, the AIDS Institute has teamed up with the New York State Office for the Aging (NYSOFA) to build relationships among providers at the local and regional level. Regular regional meetings provide an opportunity for participants to develop joint resources and participate in HIV, aging, and sexual health education. For example, aging and HIV service providers are being encouraged to sit on long-term care councils. Long-term care councils in each participating county are made up of consumers, caregivers, providers, advocates, government representatives (AAA directors, DSS commissioners), and key stakeholders (including independent living centers) who come together to analyze the local long-term services and supports system; identify gaps, duplication, and barriers in the system; and make recommendations for improvements.
The state is also working on updates to their No Wrong Door system, New York Connects, to better meet the needs of adults living with HIV in need of long-term care. New York Connects provides a one-stop shop for trusted, unbiased, person-centered information on long-terms services and supports for people of all ages or disabilities. To access New York Connects, individuals can visit a local aging and disability resource center or call a toll-free number to speak to a counselor. There is also an online resource directory where people can search for services in their area. The AIDS Institute and NYSOFA are in the process of updating the New York Connects resource directory to be more inclusive and accurate for consumers with HIV in search of services.
Massachusetts HIV Drug Assistance Program Teams up With Local State Health Insurance Assistance Program To Provide Full Service Medicare and Medicaid Counseling for Clients
Community Resource Initiative (CRI), formerly Community Research Initiative, began its work on behalf of Bay Staters living with HIV in 1990. A public health nonprofit, CRI provides support to over 7,500 clients living with or at risk for HIV each year through research, drug assistance, insurance support, and prevention services. It currently administers the state’s HIV Drug Assistance Program financed by the Massachusetts Department of Public Health via the Health Resources and Services Administration Ryan White HIV/AIDS program funding.
In 2014, CRI recognized the need for enhanced insurance navigation assistance because clients are often eligible for multiple insurance and assistance programs, each with their own eligibility, enrollment, and coverage rules. People living with HIV rely on continuous coverage and reliable access to medication and medical providers in order to stay well and maintain undetectable viral loads. In collaboration with the state health department, CRI began the Benefits Resources Infectious Disease Guidance and Engagement (BRIDGE) team in 2014 to offer clients hands-on insurance navigation to ensure they get — and keep — comprehensive health coverage and avoid gaps in treatment and care.
BRIDGE team members are insurance experts, but they soon realized that Medicare questions were becoming more frequent, and complex eligibility and coverage rules required specialized training. Anne Callachan, the BRIDGE Team project manager, teamed up with her local State Health Insurance Assistance Program — called SHINE in Massachusetts — and became a certified SHINE counselor.
Callachan reports that becoming a certified SHINE counselor has made a significant impact on CRI’s ability to help clients navigate transitions to Medicare and troubleshoot frequent coverage-related issues that arise over the course of the year. Additionally, she notes that SHINE counselor training improved her Medicaid expertise and understanding of programs for people dually eligible for Medicare and Medicaid, which she has been able to share with a community of case managers. In turn, the more than 500 case managers that CRI works with are better able to anticipate and address Medicare and Medicaid-related problems for clients before they arise. Since Anne Callachan’s SHINE training and certification, three of her colleagues have been trained and certified as well, increasing CRI’s capacity to assist clients with Medicare enrollments.
While serving the nearly 1,800 clients currently enrolled in Medicare, the BRIDGE team has expanded its reach and become known across the community for their Medicare expertise. “Now, other organizations have begun actively referring clients approaching Medicare eligibility to us,” says Callachan.
A Senior Center in Ft. Worth, Texas Provides Connection and Support for Older Adults With HIV and Long-Term Survivors
The AIDS Outreach Center (AOC) in Tarrant County, Texas, has provided care and treatment to people living with HIV in since 1986. In 2023, AOC seized on an opportunity presented by the American Rescue Plan to open a Seasoned Survivors Senior Center dedicated to meeting the needs of older adults living with HIV and long-term survivors.
In thousands of communities across the nation, including in Tarrant County, senior centers serve as social hubs and critical focal points for older adults to find services and supports to help them stay healthy, connected, and independent. Each senior center has its own local flavor and adapts to meet the unique needs of its community.
The Seasoned Survivors Center is no different, and while it offers many of the typical senior center supports and activities like nutrition counseling, social events, and volunteer opportunities, it also provides a safe and welcoming space for long-term survivors to gather and socialize. According to Bridget Washington, senior services coordinator at AOC, stigma and the isolation it brings are particularly challenging for the Center’s clients. Support groups facilitated by a licensed therapist are effective, says Bridget. “Many of our clients keep their status a secret. It’s really important they feel safe. The support groups let folks connect with their peers and get things off their heart.”
Recently, the Center upgraded from its first location — a renovated two-bedroom house — to a multifunctional space with a full kitchen, meeting rooms, and comfortable communal spaces. The new facility has allowed the Center to expand its offerings to clients, bringing people together in community and connecting them with essential services to stay well in body, mind, and spirit.
To hear more about the Seasoned Survivor Senior Center from staff and clients, check out their YouTube video.
There are so many possibilities for partnership. To learn more about how you can get involved to support older adults living with HIV in your area and build partnerships across the aging and HIV services continuum, contact Andrea Callow, Senior Advisor for HIV Policy, at andrea.callow@acl.hhs.gov or visit the National Resource Center on LGBTQI+ Aging, SAGE.
To find aging services in your area, visit the Eldercare Locator.
To find HIV services in your area, visit the Health Resources and Services Administration Care Locater.