The State of Aging with HIV - Flash Forward to Today

By: Scott Bertani, Director of Advocacy, HealthHIV

Despite high rates of viral suppression and engagement in care, 94% of respondents agreed that more advocacy efforts are needed to address the needs of people aging with HIV. This reflects the increasingly complex reality of providing comprehensive care to older persons with HIV (OPWH). While medical providers are often adept at addressing HIV, there remains a significant need for enhanced training and medical education that prepares providers to develop interventions that address, not only the many comorbid conditions associated with aging with HIV, but also the pervasive and intersecting systemic barriers that face OPWH, including housing instability, gaps in social support and insurance coverage, and stigma.

And for some 60% of our respondents, they have been HIV positive for longer than they were not. Hammered by mounting obstacles—reduced quality of life polypharmacy, multimorbidity, mental illness and increasing barriers to care—an emerging portrait of frustration and ire among OPWH is building.

For these folks, the challenge of lifelong disease management, (dreamed and dashed) hopes for a near horizon cure; comorbidities and cognitive declines; anxiety and depression; substance use; loss of agency and finances–all have taken a compounding heath outcome toll. And for many, the toll feels due.

And when faced with growing long-term care needs, and the complexity of ageism and minority stressors–race, ethnicity, sexual orientation, and gender identity issues... of being forced back into the closet, the resiliency-well is nearly (if not already) dry.

To be fair, we did survey lots of positivity among our PWH in their journeys with HIV and Aging (28%)—reminded by words like "manageable", "grateful", "hopeful" and "rewarding". But in 2023, that sentiment seems to be running low. Some 72% described their QoL, in less than joyful words.

In sum, the state of aging with HIV can be distilled down to one word: CHALLENGING. In fact, upwards of 50% of our respondents used that same word to describe their complex, but beautiful lives.

But what of Advocacy? Advocacy, too, seems to be of an urgent, almost universal cry (a 94% wailing, in fact)–across both access and treatment challenges. But even there, with an overwhelming response of wanting more to be done, we saw no linear "right here, right now" pathway, only more predilections to consider. Across the care continuum, across care coordination, across finding better biomarkers to alert us; across SDoH, across... (fill in the blank).

Keep that in mind. Throughout this landscape report, we hope to capture not only the relevant data (those key findings from what we surveyed) in a visually interesting way, but in a relatable, actionable narrative that paints the urgent story of the face(s) of today's HIV and Aging.

The survey implications, themselves (below) represent crucial sites for future research, advocacy, and policy interventions to improve clinical care and quality of life for people aging with HIV:

• Building a competent workforce of HIV gerontologists is crucial to address the multifaceted issues confronting PLWH as they grow older.
• Efficient coordination of care between healthcare providers is essential to ensure that OPWH receive the comprehensive support they need.
• Addressing social determinants of health is fundamental to improve health outcomes as health extends beyond the clinic setting.
• Access to safe and stable housing is needed as fixed incomes and housing emergencies escalate for OPWH.

Policymakers at all levels need to address a wide range of health, social and economic factors that impact all PWH, but particularly among older PWH and their ability to maintain their health and their agency, independence and ability to remain in and a part of their communities.

By addressing the unique psychosocial and multi-complexities needs of this group can help providers better meet their patients' care needs (mind, mobility, multi-complexities) while also improving their quality of life (what matters most).

In order to do that, it's critical in ensuring that health and social service providers not only deliver culturally competent care, but deliver it with confidence—in that they are as representative, inclusive and linguistically appropriate as possible.

In essence, it means optimizing (and enhancing) care coordination while also sustaining that workforce; supporting community organizing and advocacy agencies; and encouraging bottom-up community mobilization and stakeholder involvement—re-envisaging the adage of "Nothing about us without us."  

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.