#NASHPCONF18: As the HIV Population Ages, States Redesign their Long-Term Services Programs

People living with HIV (PLWH) are living longer due to advances in antiretroviral therapies and disease management. In 2016, 47 percent of PLWH in the United States were over age 50. This population often needs long-term services and supports at an earlier age due to increased risk of dementia, chronic illness, and the social isolation still associated with HIV infection. This aging population’s unique health care service and support needs are ushering in a new wave of state initiatives that work both within and outside traditional systems.

At the National Academy of State Health Policy’s annual conference earlier this year, state leaders met during a daylong preconference, Covering the Waterfront: Innovative State HIV Policy Approaches, from Prevention to Aging in Place, to share the strategies and challenges they face as they work to support PLWH across their lifespans.

New York and South Carolina have longstanding Medicaid that provide home- and community-based services (HCBS) to an aging PLWH population. Policymakers from those states described how these programs address the needs of their older :

South Carolina, whose HIV/AIDs 1915(c) waiver dates back to 1988, has made changes to its waiver benefits to better support an older population, including enhanced prescription drug coverage and self-directed, in-home services. Waiver benefits also include and home modifications, which state officials noted was key to keeping aging PLWH living independently for as long as possible. While South Carolina adapted its HIV/AIDS waiver to meet these needs, state officials noted that fewer PLWH are accessing waiver services in recent years because they no longer meet institutional level-of-care criteria. Attendees noted that states may need to consider other strategies to address the needs of PLWH who still need long-term care in their homes or communities, but no longer qualify for waiver programs. Policymakers suggested that over time older adults with HIV may be best served through other, non-HIV-specific HCBS waivers.

New York has operated its AIDS Adult Day Health Care Program (ADHCP) under its Medicaid state plan since 2007. ADHCPs are long-term care programs that provide eligible PLWH and people at risk for HIV with services and supports in a community setting. In addition to core services, such as nursing visits, mental health treatment, and support for daily living activities, clients can also participate in group meals, yoga classes, and socialization services. State policymakers view these investments as effective tools to reduce the isolation commonly experienced by PLWH, encourage engagement in treatment, and ultimately reduce the cost of care for PLWH who can be successfully supported in their homes and communities for longer periods of time.

While PLWH are living longer and often able to age in place in their communities, many will eventually need care from long-term care facilities. Officials expressed concern that these facilities may be ill-equipped to handle this population — a 2015 scan of state long-term care facility regulations found that very few states require these facilities to train their staff in how to care for PLWH. State policymakers discussed the need to enhance provider and staff training and address the persistent stigma associated with HIV infection often found among long-term care facility staff as key priorities for future work.

For more information about how states are working to improve the lives of PLWH, including older adults, explore NASHP’s Toolkit: State Strategies to Improve Health Outcomes for People Living with HIV.

Additional resources from the Health Resources and Services Administration’s HIV/AIDS Bureau:

HRSA Care Action: The Graying of HIV

Aging with HIV: Care Challenges

Engaging and Retaining Older Adults in HIV Care