HealthHIV Releases State of Aging with HIV Survey Results

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

HealthHIV has released its fifth annual survey on the State of Aging with HIV™, finding both positive and negative results from patients and providers alike. This report details survey findings and implications across five areas: HIV and Geriatric Care, Comorbidities, Behavioral Health, Access and Payment, and Workforce.

HealthHIV summarized the survey as follows:

"The survey revealed an HIV care system that delivers clinical wins. Over 98% of consumers reported being virally suppressed, and nearly 100% are taking antiretrovirals, the highest rates across five waves of the survey. The same data, however, show that the broader clinical reality of aging with HIV, multimorbidity, frailty risk, mental health burden, and the structural conditions of daily life, is not being managed with the same consistency."

Photo Source: HealthHIV

Key findings include:

Viral Suppression is High Among Older People Living with HIV/AIDS

Among People Living with HIV/AIDs (PLWHA) surveyed, 98% reported that their HIV was virally suppressed. This is significantly better than the national average of 62% (CDC, 2026).

While viral suppression was reported to be high, respondents indicated that age-related testing, screening, and other geriatric care were significantly lacking. Just 17% of respondents reported being screened for HIV-related medical frailty, with screenings for frailty declining from 25% of patients under the age of 65 being screened in 2022 to just 11% in 2026. HealthHIV found that patients with lower incomes were significantly less likely to be screened at all.

PLWHA Are Heavily Burdened by Comorbid Non-HIV Chronic Conditions

More than 80% of respondents indicated that they have at least one non-HIV-related chronic condition for which they are currently taking prescription medications, of whom 22% reported having to change their antiretroviral (ARV) medication due to a contraindication with another drug.

HealthHIV’s analysis of responses found that more than 25% of respondents have very high medical needs, but are underserved.

Photo Source: HealthHIV

Behavioral and Mental Health Issues Are Prevalent Among Older PLWHA

More than 75% of respondents indicated having moderate or high levels of stress, but fewer than 2% of respondents identified mental health as being an immediate need. Many respondents indicated that they had a “good” quality of life, but also carried high levels of stress. HealthHIV suggests that this finding indicates that respondents place more importance on the outward appearance of wellness while simultaneously ignoring or disregarding mental health as a part of a “good” quality of life.

Research has found that high levels of psychological stress can have negative impacts on PLWHA and their physical health and health outcomes. For example, traumatic and stressful life experiences have been associated with reduced adherence to treatment regimens, virologic failure, higher rates of mortality and opportunistic infections, increases in the use of recreational drugs in such ways that may result in behaviors detrimental to the health of both the patient and others, and arterial inflammation (Reif et al., 2013; Chow et al., 2023).

Access to and Paying for Medications and Treatment is Likely to Get Tougher for PLWHA in the Future

While existing programs and insurance coverage of ARV treatments are currently working, HealthHIV reports that those systems, like PLWHA who are aging, are becoming increasingly frail.

HealthHIV highlights reports that state AIDS Drug Assistance Program (ADAP) budgets are becoming increasingly strained, and that the reintroduction of waiting lists (Hopkins, 2026) in Iowa and Utah presages tough times ahead for PLWHA who are aging.

Photo Source: HealthHIV

According to the survey, fewer than half of respondents had retirement plans (largely because many didn't expect to live into their 50s), almost one-third reported food insecurity, and one in five avoided care due to cost.

Respondents to HealthHIV’s survey reported that transportation remains the strongest single barrier to accessing care and treatment, with lower-income patients being six times more likely to miss an HIV appointment because they cannot get to the appointment. Additionally, HealthHIV reports that more than half of Medicare enrollees still rely on the Ryan White HIV/AIDS Program (RWHAP) and ADAP to access HIV medications.

Providers Are Largely Unequipped to Effectively Treat Aging PLWHA

Providers who responded to HealthHIV’s survey reported that, while they understand that aging PLWHA face unique needs that require specialized care, they currently lack the staff, funding, or expertise to provide these services.

HealthHIV found that just 1.2% of provider respondents specialized in gerontology, compared with 21% with specializations in HIV medicine. Moreover, they found that workforce turnover is eroding the institutional knowledge and awareness of both the history of the HIV epidemic and the cultural and lived experiences of aging PLWHA.

Photo Source: HealthHIV

Regarding aging-care readiness among patients, providers reported troubling trends. Among them, only half were aware of the protections afforded to them under the Americans with Disabilities Act (ADA), a fact that is particularly important for end-of-life planning. Fewer than one-fourth of providers offer advance care planning, which is compounded by the fact that only 16% of caregivers report having adequate support.

In Closing

HealthHIV has made available the final report for its fifth State of Aging with HIV™ survey on its website at healthhiv.org/stateof/agingwithhiv/. On May 6th, HealthHIV hosted an educational webinar, and free access to this on-demand webinar is available online, along with the presentation slides. 

At this point in history, more than half of PLWHA are over the age of 50, making this research essential to maintaining a robust and effective HIV care continuum. 

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

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

References:

[1] Centers for Disease Control & Prevention. (2026, March 16). Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection—Medical Monitoring Project, United States, 2023 Cycle (June 2023—May 2024). Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: HIV Data: Medical Monitoring Project. https://www.cdc.gov/hiv-data/mmp/behavioral-clinical-characteristics-pwh-2023.html

[2] Chow, F. C., Mundada, N. S., Abohashem, S., La Joie, R., Iaccarino, L., Arechiga, V. M., Swaminathan, S., Rabinovici, G. D., Epel, E. S., Tawakol, A., & Hsue, P. Y. (2023, October). Psychological stress is associated with arterial inflammation in people living with treated HIV infection. Brain, Behavior, and Immunity, 113, 21-28. https://doi.org/10.1016/j.bbi.2023.06.019

[3] HealthHIV. (2026). Findings and implications from HealthHIV State of Aging with HIV Fifth Annual Survey. Washington, DC: HealthHIV: State of. https://healthhiv.org/stateof/agingwithhiv/

[4] Hopkins, M. J. (2026, May 14). The ADAP “Perfect Storm” Returns; Over 1,000 Patients Being Denied Care. Nags Head, NC: ADAP Advocacy: Blog. https://adapadvocacyassociation.blogspot.com/2026/05/the-adap-perfect-storm-returns-over.html

[5] Reif, S., Mugavero, M., Raper, J., Theilman, N., Leserman, J., Whetten, K., & Pence, B. W. (2011, February). Highly Stressed: Stressful and Traumatic Experiences among individuals with HIV/AIDS in the Deep South. AIDS Care, 23(2), 152-162. https://doi.org/10.1080/09540121.2010.498872

Aging and Living with HIV

By: Ranier Simons, ADAP Blog Guest Contributor

Since the beginning of the HIV/AIDS epidemic forty-two years ago, medical advancements in HIV prevention and treatment have come a long way. As a result, there is a growing population of older people living with HIV (OPWH). In 2020, about half of all people in the United States living with HIV were age 50 or older. It is estimated that by 2030, that percentage will be over seventy percent.[1] Aging for the general population is challenging. However, emerging evidence indicates specific challenges unique to aging people living with HIV. OPWH are dealing with health care system issues, specific medical challenges, social determinants of health hurdles, and even social stigma.

Photo Source: IDSE.net

Isolation and loneliness are pervasive challenges OPWH reportedly face.[2,3] Many have survived the early years of the HIV/AIDS pandemic. As such, they have seen many of their friends and relatives die from the disease. Living in isolation, among many things, means not having anyone to call on in case of emergency, having no one to care for them when they become ill, and not having any outlet for social interaction. Jim Clay, program lead with Cascade AIDS Project in Portland, Oregon, created several social groups for OPWH under the umbrella of a program called Aging Well.[4] The groups enable OPWH with shared living experiences, such as those who are LGBTQ, to find a sense of community and support. Social integration and support lower the actual and perceived stigma that many OPWH experience.[3] Quality of life challenges regarding psychological well-being directly affect medical outcomes.

Regarding medical outcomes, OPWH are challenged with unique problems. HealthHIV highlighted some of these in their third annual State of Living with HIV National Survey.[1] To be considered for the survey, subjects had to be aged 50 or older or have been living with HIV for at least 15 years. Of those who qualified to be included, 93% were aged 50 or older, with one-third of those older than age 65. Most of the respondents living with HIV for 15 or more years were over the age of 50.

According to HealthHIV, polypharmacy was a medical issue reported by nearly all the included respondents. OPWH have higher rates of multiple comorbidities than the general population.[6] Polypharmacy means taking five or more medications to treat numerous non-HIV comorbidities and HIV. Multiple medications increase the chances of drug interactions with antiretrovirals or other drugs. The different simultaneous medications also cause wear on organs such as the liver and kidneys. Additionally, twenty-five percent of the respondents reported having current antiretroviral side effects, with the majority having had side effects on previous regimens.[1] Moreover, the survey also highlighted that OPWH are more likely to be diagnosed at later stages than younger people with HIV. Half of the respondents were. This is troubling because data shows OPWH have poorer CD4 cell recovery after initiating antiretroviral therapy.[5]

Photo Source: HealthHIV

Evolving research is revealing specific medical challenges for women aging with HIV. Data shows that HIV can cause women to go into early menopause up to 5 years earlier than HIV-negative women.[7] This is due to HIV infection causing chronic infection, immunodeficiency, lower estrogen levels, and metabolic changes due to long-term medication use.[7] Early menopause increases the risk of osteoporosis. This is compounded by the fact that HIV is a known risk factor for osteoporosis.[7] Women with HIV are also three times as likely to have absent periods going into menopause.[7] Instead of gradually easing into menstrual changes, their periods stop abruptly. Women universally deal with the psychological and social stigma of aging. Older women living with HIV have their lived experiences negatively compounded by these medical challenges.

Predominantly, society associates aging with security and being established in life. Unfortunately, social determinants of health are challenging for many aging adults, especially OPWH. Housing, income, food insecurity, and transportation are just a few challenges reported by respondents of the HealthHIV survey. Affordable housing is a problem for OPWH on fixed incomes and those without much or any savings for retirement. One respondent explained that aging adults with HIV have to live where they can afford to.[1] That is the most basic tenet of survival, which influences everything else. Where one lives affects what kind of transportation they need, what sustenance they can afford, and even access to HIV care. If OPWH, out of necessity, have to live far away from their medical care, their medical outcomes are negatively affected. Not being able to access health services results in untimely doctor visits or complete omission, lack of medication adherence, and inadequate treatment of comorbidities. Sixty-eight percent of the respondents were concerned about the lack of permanent housing, and thirty percent worried about the condition of where they lived.[1]

Prevention of new HIV infections among the young and treatment of those under 50 is essential. However, OPWH are being left behind, and they feel it. It is vital to develop geriatric practices and policies to support OPWH. The aging HIV-positive population needs options for care that are more cooperative and convenient instead of fragmented. Their whole being needs to be addressed on a physical, mental, medical, and social service level. Most importantly, their humanity needs to be acknowledged and supported. OPWH are still sexual beings, and there are still cases of people over 50 newly acquiring HIV. Screening for HIV and other STDs/STIs in older adults must be integrated into all aging population care paradigms. The long-term effect of living with HIV is new territory. OPWH should not be left unsupported to deal with it alone.

[1] HealthHIV. (2023, May). State of Aging with HIV Third Annual National Survey. Retrieved from https://healthhiv.org/stateof/agingwithhiv/

[2] McCarty, A. (2023, July 18). 'Fought like hell to get here': Portland group helps long-term survivors of HIV 'age well' through connection and community. Retrieved from https://www.kgw.com/article/news/local/pride/portland-group-long-term-survivors-hiv/283-a110d2ca-af2c-4463-94dc-474c2db2dab3

[3] Petrullo, J. (2023, July 12). Older people with HIV face stigmas, struggles that require action. Retrieved from https://www.ajmc.com/view/older-people-with-hiv-face-stigmas-struggles-that-require-action

[4] Cascade AIDS Project. (2023). Aging Well: About Us. Retrieved from https://www.agingwellnw.org/about

[5] Means, A. R., Risher, K. A., Ujeneza, E. L., Maposa, I., Nondi, J., & Bellan, S. E. (2016). Impact of Age and Sex on CD4+ Cell Count Trajectories Following Treatment Initiation: An Analysis of the Tanzanian HIV Treatment Database. PLOS ONE, 11(10), e0164148. https://doi.org/10.1371/journal.pone.0164148

[6] Lerner, A. M., Eisinger, R. W., & Fauci, A. S. (2020). Comorbidities in Persons With HIV: The Lingering Challenge. JAMA, 323(1), 19–20. https://doi.org/10.1001/jama.2019.19775

[7] Mulcahy, L. (2023, July 27). Menopause may start earlier for aging women with HIV. Retrieved from https://www.webmd.com/hiv-aids/news/20230627/menopause-may-start-earlier-aging-women-hiv

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.   

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.