National HIV/AIDS and Aging Awareness Day (NHAAD) is recognized annually on September 18 to bring attention to the growing number of people living long and full lives with HIV. The awareness day also calls attention to the unique health and social needs and the challenges of HIV prevention, testing, treatment, and care in older adults.

NHAAD is an important opportunity to raise awareness about HIV and AIDS and aging and to educate older adults about the importance of HIV screening, which gives individuals the information they need to either access HIV prevention services, such as PrEP, or be linked to care and treatment services to improve health outcomes.

This year, we talked to Scott D. Bertani, MNM, PgMP, Director of Advocacy, HealthHIVExit Disclaimer and Lead for the National Coalition for LGBTQ HealthExit Disclaimer about HealthHIV’s Third Annual State of Aging with HIV™ National Survey and its importance to this community.

“HealthHIV’s Third Annual State of Aging with HIV™ National Survey was developed in June 2023 to gather information on the current experiences of Older Persons with HIV (OPWH) in the U.S. We heard from hundreds of people across the country who shared information about their personal health journey and their understanding of the most pressing needs facing adults aging with HIV,” said Scott.

Read below to learn more about HIV.gov’s conversation with Scott and what he shared about the results of the survey.

Webinar – September 18th

According to HealthHIV, the “Insights into the Deep-rooted Connection between HIV, Health, and Housing” live webinar on September 18, 2023, at 12:00pm ET will delve into the changing landscape of HIV with a presentation of findings from HealthHIV’s Third Annual State of Aging with HIV™ National Survey. There will also be a panel discussion and Q&A with the audience. You can register for the webinar hereExit Disclaimer.

More on What We Heard: National Survey

“Despite significant progress in viral suppression and patient engagement in HIV care, a robust 94% of respondents identify an acute need for enhanced advocacy efforts tailored to OPWH,” Scott said. “This reveals not only the ongoing and complex clinical landscape where medical providers have successfully managed HIV but also the growing calls to fill in the gaps that address the multifaceted challenges of aging with HIV. And it further underscores the urgency for OPWH who are 60 or older.”

Approximately 60% of those who were surveyed have lived longer with HIV than without it, which revealed the use of multiple medications for health conditions, mental health issues, and barriers to care access. Though 28% express positivity in their journey, an increasing proportion—72%—report diminishing quality of life in 2023.

“To sum up the state of aging with HIV in one word, the term ‘CHALLENGING’ emerges prominently and was echoed by over half the respondents,” Scott said. “Advocacy [for and by OPWH], too, presents an urgent call, with 94% advocating for decisive action. Yet, the pathway is just as complex, extending across all health services and demanding optimized care and supportive services coordination, development of therapies, better and routine use of diagnostics and screening, and a comprehensive call-to-action on meeting this population’s social determinants of health needs.”

Aging with HIV further presents unique challenges, especially for older individuals who face compounded health complexities alongside economic barriers, Scott noted.

“Addressing the intersection of financial constraints and health needs is crucial to ensure comprehensive care and improved quality of life for these individuals,” he said.

Key findings stress an urgent and growing need for:

• Specialized Workforce Development: Building a cadre of gerontologists specialized in HIV care to navigate the diverse issues confronting people with HIV as they age.
• Integrative Care Coordination: Creating seamless collaboration among healthcare providers to ensure that OPWH receive the multifaceted support required—while also promoting status-neutral opportunities to advance health equity positions.
• Social Determinants of Health: Recognizing and addressing the societal factors that extend beyond clinical settings and impact health outcomes.
• Housing Solutions: Implementing strategies to ensure stable housing, as financial constraints and housing emergencies escalate for OPWH.
• Policy Engagement: Mobilizing policymakers to consider health, social, and economic factors uniquely impacting OPWH to promote health maintenance, independence, community integration, and agency.

“In short, the path forward entails a concerted effort by both health and social service providers—along with the government—to embrace cultural competency, inclusivity, and appropriate language for this population,” Scott said. “This involves optimizing care coordination, nurturing a committed workforce, empowering community organizations and advocacy groups (and with sustainable resources!), and fostering grassroots community mobilization.”

“It's a holistic approach that reimagines patient-centered care through the lens of ‘Nothing about Us without Us.’ This report helps carry on that legacy,” Scott noted.