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.  

COVID-19's Impact on Older Adults Living with HIV & Long-Term Survivors

By: Tez Anderson, HIV Long-Term Survivor & Founder of Let's Kick ASS—AIDS Survivor Syndrome 

COVID-19 is having a significant impact on the social and mental health of older adults with HIV and long-term survivors, according to a recent study by HIV+Aging Research Project—Palm Springs (HARP-PS).

Half of the HARP-PS study participants reported increased frustration, boredom, sleep disruptions, and not getting enough exercise. There’s no doubt that some of the stress is from social distancing on a population already facing a crisis of isolation. 

But there is something else going on. For months, I’ve been beating myself up because the simplest tasks seem insurmountable. I can’t seem to get motivated or to stay focused. I thought it was just me, so I asked around. I am not the only one having these problems. Everyone I talk with is struggling with the same issues.

While there are very few similarities between AIDS and COVID 19, but another deadly pandemic triggers old trauma from another time when we faced another inescapable invisible enemy. When stress has no endpoint, it is more challenging to cope, mentally, and physically. In the early AIDS epidemic, we could at least forge a community response. We could gather and demand action. Now we are told to keep our distance because social distancing is unique to COVID 19. It is also more contagious so being in a group is dangerous. Zoom calls have replaced face time, and while it is the only option, the difference of being behind a screen is a poor imitation of being together.

AIDS Survivors Summit - 2014

The threat of COVID 19 is enormous and probably foremost on our minds. But there is more weighing on all of us. We are weeks away from the most critical election in history.

The threat of COVID 19 is against the backdrop of the rage we feel that COVID 19 did not have to be this bad. America’s response to the coronavirus pandemic is the worst in the world because of a lack of leadership. We have an anti-science president who failed to create an early cohesive national strategy to bend the curve. Other nations did it, and are living is more tolerable. Trump politicized the virus, mocked mask-wearing as a sign of weakness, and undermined public health experts’ recommendations. The current occupant of the White House uses COVID 19 to divide an already splintered nation. We have audio proof that the president knew how deadly it COVID 19 was and downplayed the danger. He lied instead of lead.

We all want things “to go back to normal” to a time before COVID 19 turned our world upside down. We need to accept the reality that COVID 19 will be a threat for years. The presidential promises of “it will end soon” and that we will have a vaccine before election day is more lies. 

For the sake of our sanity, we must ignore everything Trump says. Instead, listen to the public health expert we trust. Dr. Anthony Fauci is the only reliable source of information for navigating this pandemic. In a recent interview, Fauci corrected Trump’s lie, “If you’re talking about getting back to a degree of normality before COVID, it’s going to be well into 2021, towards the end of 2021.” 

This coronavirus rollercoaster we’re on has no end in sight. Those of us aging with HIV will be the last ones to get off the COVID-19 rollercoaster because we do not want to risk our lives.

Not Our First Pandemic was the 2020 theme for HIV Long-Term Survivors Awareness on June 5. This one is proving to have resonance. Coming together has always been our strength. Now we are forced to gather virtually. Let’s Kick ASS has a closed, moderated Facebook Group called the HIV Long-Term Survivors League, where we have conversations about these extraordinary times. It is a chance to converse with other survivors in a safe space. 

Approximately 1.2 million people are living with HIV and AIDS in the US. Sixty percent of HIV-positive women and men over age fifty and 25 percent have lived with the virus before 1996. That’s 720,000 who are the first-generation aging with HIV and 300,000 HIV longest-term survivors facing deadly stress. A population who mostly live in poverty with social networks shredded by AIDS and aging. 

As we have for decades, we must persevere, know that we are not alone, and are an untapped resource. Do not allow discrimination based on age, or ageism, rob us of our voices. And be sensible about the threat of COVID 19. We’ve survived with HIV for decades let’s ensure we take all precautions to prevent catching COVID 19. Wear a mask, wash your hands, keep your physical distance but remain emotionally connected even if it is virtual. And vote like our lives depends on it.

These are surreal times, but you are not alone.

About Let's Kick ASS — AIDS Survivor Syndrome: Let's Kick ASS — AIDS Survivor Syndrome has been empowering HIV Long-Term Survivors to thrive since 2013. They are an all-volunteer, grassroots movement, united in compassion, committed to action, and insisting on visibility. Let's Kick ASS started by and for people living longest with HIV/AIDS to address an unmet need — addressing the present-day psychosocial ramifications of living in the aftermath of the early AIDS pandemic. They are the originator and lead sponsor of the June 5th "HIV Long-Term Survivors Awareness Day" #HLTSAD. Donate to Let's Kick ASS — AIDS Survivor Syndrome.

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.