Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program

By: Ranier Simons, ADAP Blog Guest Contributor

The lived experience of aging can be challenging. Those aging while living with HIV experience additional challenges as compared to the general population. According to the Centers for Disease Control & Prevention (CDC), in 2021, over 53 percent of people living with HIV/AIDS (PLWHA) were 50 years old or older.[1] In 2022, 48.2 percent of the 560,000 clients served by the Ryan White HIV/AIDS Program (RWHAP) were aged 50 or older.[2] As such, Health Resources & Services Administration (HRSA) recently issued a letter to RWHAP colleagues to not only bring awareness of the aging issues they should be addressing but also provide guidance and resources to help them more effectively serve the complex needs of aging PLWHA.

Photo Source: TargetHIV

As David “Jax” Kelly, President of Let’s Kick ASS (AIDS Survivor Syndrome) Palm Springs and Founder & CEO of the Aging and HIV Institute, points out, “The community aging with HIV consists of two distinct groups long-term survivors who have been living with HIV prior to 1995, and those who are over 50 and have been living with HIV after the discovery of the "cocktail" – antiretroviral medications that changed HIV/AIDS to a chronic condition rather than a diagnosis of imminent death.” According to Kelly, this aging cohort has specific medical, psychosocial, and support needs. The fact that more PLWHA are living longer increases the urgency of bolstering the infrastructure of HIV aging services.

Just like the general population, aging PLWHA experience age-related medical issues. However, older PLWHA have a higher prevalence of non-HIV comorbidities.[3] Thus, managing multiple morbidities and polypharmacy is a challenge.[3] Numerous medical issues mean treatment with multiple medications. The difficulty of navigating the medical aspects of multiple maladies is compounded by having to monitor drug-drug interactions of non-HIV-related medications with antiretroviral therapies. In addition to prescription drugs, older PLWHA may be taking over-the-counter medicines like pain relievers and supplements.[4] Studies also show that PLWHA develop age-related non-HIV medical issues earlier than the aging general population.[5] Some of the non-HIV-related conditions with higher prevalence among PLWHA are hypertension, kidney disease, dyslipidemia, and anemia.[5] One of the possible causes of higher rates of comorbidities is the side effects of long-term ART experienced by long-term survivors. 

Aging PLWHA also have specific psychosocial needs. According to Kelly, “Long-term survivors who experienced the trauma of the AIDS plague years when life expectancy was sometimes merely a few months are experiencing another wave of loss that may trigger survivor's guilt.” Social isolation is also an issue.[6] It is a challenge for the general population, but it can be extra challenging for PLWHA; especially those who may be LGBTQ. Aging PLWHA who happen to be LGBTQ have sometimes lost friends and people they consider chosen families. Due to ageism, sexism, racism, and homophobia, they live in self-isolation and are isolated, given that society does not place any priorities on ensuring their comfortable existence. 

Depression from physical and social isolation is not the only serious mental challenge aging PLWHA struggle with. Aging, in general, can sometimes bring on a bit of mental decline. However, cognitive impairment due to HIV-associated neurocognitive disorder (HAND) is also a known complication of HIV.[7] HAND can cause difficulty with concentration and memory, irritability, and motor skills issues.[7] In late, untreated stages, it can cause dementia. Psychosocial challenges and mental decline not only result in poor mental health but are barriers to maintaining medication adherence or achieving a high level of personal care.

Support is an area where much improvement is needed. The aging PLWHA population is diverse. People in their 50s, 60s, 70s, and up have different and dynamic needs. HIV care and geriatric care are siloed and not well coordinated. A technical expert panel put together by HRSA reported that in the U.S., primary care practitioners are not skilled in geriatric care, and geriatric practitioners are not skilled in HIV care.[8] It is imperative to have coordinated care efforts that are efficient, effective, and sustainable to encompass all the needs of aging PLWHA. 

Photo Source: HRSA | Flickr

Additionally, there are shortages of geriatricians, and many primary care practitioners don’t have the time to adequately address the needs of and perform the screenings needed for aging PLWHA.[8] HIV stigma and ageism, unfortunately, exist in the medical environment as well. Many clinicians, especially younger professionals, underestimate the mental and cognitive abilities of older PLWHA and don’t view them as sexual beings. Lacking knowledge and training of what it means to age with HIV results in not performing necessary medical screenings, overlooking thorough holistic needs assessments, and even inadequate tracking of health outcomes.

HRSA understands the interdisciplinary, multifaceted approach needed to effectively serve aging PLWHA. That is why the “Dear Colleague” letter was written. The letter references many tools and knowledge sources for RWHAP recipients to utilize. 

First and foremost, the letter reminds them that it is acceptable to use RWHAP funds to support aging PLWHA across various HRSA RWHAP core medical and support service categories.[2] However, HRSA is aware that there are some needs aging PLWHA have that RWHAP funds cannot directly address. For example, long-term care is not an allowable expense through RWHAP. To that end, HRSA refers RWHAP colleagues to connect with the Administration for Community Living’s (ACL) aging network grantees.[2] These community centers offer many services to help address holistic needs, such as transportation, housing, caregiver support, insurance counseling, and nutrition services.[2]

HRSA also provides reference and training materials to inform RWHAP recipients on ways to improve service delivery and structure their organizations. These are available through TargetHIV.org and the RWHAP AIDS Education and Training Center (AETC) Program’s National Coordinating Resource Center website.[2] A couple of these reference guides are: ‘Incorporating New Elements of Care’ and ‘Putting Together the Best Healthcare Team.’ Those two guides help identify screen assessments, screenings, and social needs of aging PLWHA, as well as guidance on how to effectively staff teams and build capacity.[9]

HRSA’s commitment to support the RWHAP is truly beneficial to the success of the programming. Tez Anderson, President & Founder, Let’s Kick ASS (AIDS Survivor Syndrome), expressed these sentiments regarding HRSA’s efforts: “As an advocate and someone living with HIV for over 40 years, I’m pleased HRSA is shining a light on the Ryan White Cares services available for the large and diverse cohort of older adults living with HIV and long-term survivors. As a group, we all have unique needs, and the priority must be to improve our quality of life. For those of us who have lived over half our lives with HIV, we agree living longer is a fantastic achievement, but living better is where hope lives.”

[1] NIH Office of AIDS Research. (2024, March 12). HIV and Older People. Retrieved from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-older-people

[2] Cheever, L. (2024, August 16). Dear Colleague Letter on Older Adults, Long-term Survivors, and Life-term Survivors in the Ryan White HIV/AIDS Program. Retrieved from https://paetc.org/resources/dear-colleague-letter-on-older-adults-long-term-survivors-and-life-term-survivors-in-the-ryan-white-hiv-aids-program/

[3] Kong, A. M., Pozen, A., Anastos, K., Kelvin, E. A., & Nash, D. (2019). Non-HIV Comorbid Conditions and Polypharmacy Among People Living with HIV Age 65 or Older Compared with HIV-Negative Individuals Aged 65 or Older in the United States: A Retrospective Claims-Based Analysis. AIDS patient care and STDs, 33(3), 93–103. https://doi.org/10.1089/apc.2018.0190

[4] NIH Office of AIDS Research. (2019, December 18). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Retrieved from https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/special-populations-hiv-and-older

[5] Schouten, J., Wit, F. W., Stolte, I. G., Kootstra, N. A., van der Valk, M., Geerlings, S. E., Prins, M., Reiss, P., & AGEhIV Cohort Study Group (2014). Cross-sectional comparison of the prevalence of age-associated comorbidities and their risk factors between HIV-infected and uninfected individuals: the AGEhIV cohort study. Clinical infectious diseases: an official publication of the Infectious Diseases Society of America, 59(12), 1787–1797. https://doi.org/10.1093/cid/ciu701

[6] HRSA. (n.d.) Optimizing HIV Care for People Aging with HIV:  Incorporating New Elements of Care Reference Guide for Aging with HIV. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/grants/aging-guide-new-elements.pdf

[7] Eggers, C., Arendt, G., Hahn, K., Husstedt, I. W., Maschke, M., Neuen-Jacob, E., Obermann, M., Rosenkranz, T., Schielke, E., Straube, E., & German Association of Neuro-AIDS und Neuro-Infectiology (DGNANI) (2017). HIV-1-associated neurocognitive disorder: epidemiology, pathogenesis, diagnosis, and treatment. Journal of Neurology, 264(8), 1715–1727. https://doi.org/10.1007/s00415-017-8503-2

[8] HRSA. (n.d.). Addressing the Health Care and Social Support Needs of People Aging with HIV: Technical Expert Panel Executive Summary. Retrieved from https://ryanwhite.hrsa.gov/sites/default/files/ryanwhite/resources/hrsa-aging-tep-summary.pdf

[9] HRSA. (2022, February). Clinical Care Guidelines and Resources. Retrieved from https://ryanwhite.hrsa.gov/grants/clinical-care-guidelines-resources

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.