FOR IMMEDIATE RELEASE
September 18, 2025
WASHINGTON, DC – HealthHIV today marks National HIV and Aging Awareness Day by spotlighting key findings from its Fourth Annual State of Aging with HIV™ National Survey on access and care coordination. These findings are derived from the responses of survey participants from around the U.S. who either provide care for people aging with HIV or receive care as an older person with HIV.
Key findings from the HealthHIV Fourth Annual State of Aging with HIV National Survey include:
- Care is Fragmented: Many still lack case management care coordination; providers often don’t coordinate across HIV, primary, and comorbidity care; emergency departments are used for non-urgent needs.
- Mental Health Drives Decline in Quality of Life: Stress, depression, and isolation remain widespread.
- Workforce Gaps Persist: Shortages of HIV- and aging-informed providers prevent continuity of care and advanced long-term services and care planning.
- Cost Barriers Block Access to Care: Most respondents delayed or avoided care because of personal financial precarity; out-of-pocket costs and lack of coverage compound the concerns.
- Community Expects Action: Nearly all survey respondents want stronger advocacy.
The survey findings make it clear: even though challenges like fragmented care and financial barriers have long existed, they are now compounded by the current political and policy environment — from Medicaid disenrollment and ACA subsidy changes to new pressures on Medicare, community-clinic funding, and workforce stability.
“Older adults and long-term survivors living with HIV tell the same story continuously: fragmented healthcare systems make it harder to stay healthy, and financial barriers keep them from accessing better care,” said Scott Bertani, Director of Advocacy at HealthHIV. “This awareness day should be more than a hashtag — it’s a policy opportunity to push for easier access and better, real-time care coordination.”
What’s needed are practical solutions. This fall, HealthHIV will launch the Healthy Aging Hub (“the Hub”) as part of its Pozitively Aging program. Envisioned as a hub-and-spoke platform, the Hub will connect people aging with HIV, caregivers, and providers to research, training, navigation tools, and featured practices. One of the first features of the Hub will be the new Healthy Aging Certificate Program, anchored in the five “H” modules — Horizon, Heart, Head, Hand, and Healing.
Online learning modules offered by the Hub will connect directly to curated toolkits and up-to-date provider and peer-developed resources, making the program both educational and actionable for providers and patients alike. By drawing on insights from the State of Aging with HIV National Survey, the Hub will reflect the lived realities of people aging with HIV, from the barriers they face in everyday care to the broader systems that shape their quality of life.
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About the Pozitively Aging Program
HealthHIV’s Pozitively Aging program supports persons aging with HIV (PAWH) — long-term survivors, individuals >65, “dandelions” (lifetime survivors), and those with high acuity — in accessing comprehensive, person-centered services. Addressing challenges amplified by systemic/racial discrimination, intersectional identity and socioeconomics, the program strengthens workforce capacity and enhances care coordination through targeted CBA and education/training across systems. Leveraging research, evaluation and CQI, the program advocates for enhanced health literacy through strategic communications; empowers PAWH as self-advocates; promotes system change; and focuses on equity and SDoH/QoL to improve outcomes. Learn more at Pozitively Aging.
About the Fourth Annual State of Aging with HIV™ National Survey
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. Access the State of Aging with HIV Report.
