HealthHIV’s Fourth Annual State of Aging with HIV™ National Survey Released

HealthHIV’s Fourth Annual State of Aging with HIV National Survey examines crucial issues affecting people aging with HIV (PAWH) and the workforce that supports them. The findings reveal four interconnected challenges: financial precarity and persistent insurance gaps that block access to essential care, declining quality of life driven by widespread mental health challenges, a shortage of aging-focused services leaving caregivers and communities unsupported, and rising frustration with the healthcare system and insufficient government protections.

The survey examines crucial issues facing long-term survivors and adults aging with HIV. For the first time, this survey has two population focuses—one that reached the PAWH community and one that reached the workforce that provides health and human services to the population. Survey data was collected between August and September 2024 and included responses from 907 participants. HealthHIV conducted the survey as part of its Pozitively Aging program, which is supported by Gilead’s HIV Age Positively Initiative.

Key findings include:

• Financial precarity and persistent insurance gaps impact the vast majority of PAWH and block access to essential care: Nearly half of respondents lack a financial plan for retirement, and the majority of those who have one are unsure if it will cover potential long-term care needs. Over three-quarters avoided or delayed seeking medical care in the last year due to concerns about insurance coverage or out-of-pocket costs.
• Continued decline in quality of life for many PAWH, largely driven by mental health challenges such as depression and anxiety: More than three-quarters (76%) of PAWH experienced moderate to high mental health stress over the last six months, and mental health diagnoses, like depression or anxiety, were the second most common comorbidity impacting PAWH.
• The gap is widening between aging services and the specific needs of PAWH, leaving them and their caregivers unsupported and without tailored resources, training or support: Most organizations recognize the need for aging-focused services, but many haven’t implemented them. Over half of providers believe that informal caregivers of older persons with HIV lack necessary support. Broader aging services are fragmented from HIV-specific programs like Ryan White, especially with transitions to Medicare.
• Increasing discontent and anger with the health care system reflects widespread community fatigue and insufficient government protections: Most PAWH (72%) feel the government isn’t adequately addressing their needs, and the vast majority of all respondents—97% of providers and 88% of community members—call for enhanced advocacy efforts for the aging HIV community.

In coordination with HealthHIV’s Pozitively Aging program, findings from this survey will be used in the creation of vital education and training materials for the HIV care workforce and will inform advocacy and research priorities for the coming year surrounding those aging with HIV.

Click here to access the full report.

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