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.  

High Risk of Sudden Cardiac Death for People Living with HIV/AIDS

By: Jonathan J. Pena, MSW, Licensed Clinical Social Work Associate (LCSWA)

Longevity is the end result that many people strive towards when aiming at leading and living a healthy life. People living with HIV/AIDS (PLWHAs) have that same goal and with antiretroviral medication, longevity has become a materialized reality. However, PLWHAs are twice as likely to experience sudden cardiac death.[1] 

Sudden cardiac death happens without any warning rather quickly with loss of consciousness at a physical triggered reaction. Death is often the result that follows. Research indicates that autopsies from HIV positive individuals found that the heart muscle was damaged. This occurrence is called fibrosis and a key indicator as to why sudden cardiac deaths are more prevalent within this population.[2] 

Dr. Zian Tseng, a lead researcher and electrophysiologist at the University of California, expressed that “deaths caused by fatal arrythmias among HIV patients are 87% higher than among the general population.”[3] High levels of inflammation are the driver in this alarming statistic and thus people living with HIV/AIDS need to be vigilant and have regular conversations with their doctors because inflammation can also be found in other areas like lymph nodes, the stomach and liver.[4] 

Photo Source: Cleveland Clinic

These finding were pulled from a study where Dr. Tseng and colleagues looked at unexpected deaths from people with HIV in the San Francisco area from 2011 until 2016. The team examined a total of 610 autopsies from this time period and discovered that 109 on those were cardiac arrest that occurred out of a hospital setting. From this set, 48 showed indications of sudden cardiac death and 22 from heart disease and arrhythmia. Additionally, the study showed deaths not related to cardiac distress which included diabetic ketoacidosis, kidney failure, bleeding and infections.[5] 

Research results like this put the lived experiences of PLWHAs into perspective. This is especially true for Long-Term Survivors.

Tez Anderson, Executive Director of Let’s Kick Ass-AIDS Survivor Syndrome, expressed: “Reading the reports on increased sudden cardiac death reminds us of how tenuous life is, especially for people living with HIV and AIDS for decades. It's something we learned very early in life and remains the leitmotif of survivors' lives. We've long known increased inflammation takes a toll on our bodies, even when our viral load is undetectable. The studies do not say it, but I imagine the length of time since HIV infection is a factor. This information is not new. I've known too many older adults with HIV who have died from fatal heart attacks. These studies point out the need for more studies on older adults with HIV and prevention intervention.”

Anderson statement speaks to how longevity within HIV positive populations still requires the same level of attention and vigilance as it did when the epidemic began. Antiretroviral medication changed the landscape in HIV/AIDS treatment and as a result PLWHAs now can live a longer life. However, living a longer and healthier life is the endgame. Due to its nature, the virus wreaks havoc on the body and even with viral suppression via medication, the virus continuously attacks and weakens essential organs in the backdrop. Additionally, while antiretroviral medication is lifesaving, the medication itself is taxing on the body and vital organs from the toxicity that needs to be continuously flushed out by our body’s defenses. 

So, as Anderson expressed, “what can we do about it?” What we can do is continue research and learn about the virus as we have since the epidemic began. 

The results of modern medicine have open up the possibility of longevity for PLWHAs and that fight needs to continue towards a cure. However, we need a greater understanding of how the virus affects long term survivors and how we can gain a handle the negative consequences of   inflammation. On a more micro-level, PLWHAs need to continue being an active participant in their treatment. Now more than ever, regular doctor visits are vital as well as honest and open conversations about the level of care that are needed for a long and healthy life. Stay invested and vigilant as strive to put an end to this virus.

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. 

[1] Reinberg, S., (2021). Living with HIV Raises Odds for Sudden Cardiac Death. U.S News. Retrieved from: https://www.usnews.com/news/health-news/articles/2021-06-17/living-with-hiv-raises-odds-for-sudden-cardiac-death.

[2] Reinberg. Living with HIV Raises Odds for Sudden Cardiac Death.

[3] Reinberg. Living with HIV Raises Odds for Sudden Cardiac Death.

[4] Reinberg. Living with HIV Raises Odds for Sudden Cardiac Death.

[5] Reinberg. Living with HIV Raises Odds for Sudden Cardiac Death.

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. 

Award Honorees Embody Our Commitment to the Public Health Safety Net

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association announced earlier this week the honorees for its Annual ADAP Leadership Awards, which recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS — including under the AIDS Drug Assistance Program (ADAP). The 2017-2018 award honorees reflect the theme of the organization's 11th Annual ADAP Conference, “Mapping a New Course to Protect the Public Health Safety Net,” being held in next month in Washington, DC.

As in years past, it is always difficult selecting the honorees for the various awards because so much amazing work continues to be done fighting the HIV/AIDS epidemic. But some work always stands out and it deserves our recognition! It is our way of saying, thank you.

The following awards will be presented during the Annual ADAP Leadership Awards Dinner, which will be hosted on Friday, September 21st:

• ADAP Lifetime Achievement awarded posthumously to Gary R. Rose. As we noted earlier this year, Gary was One for the Roses.

• “William E. Arnold” ADAP Champion awarded to Evelyn Foust, Director of the North Carolina DHHS Communicable Diseases Branch. Evelyn has been instrumental in the implementation of the ADAP premium assistance in the state. 

• ADAP Emerging Leader awarded to Tori Cooper. Learn more about her groundbreaking work. Tori currently serves as a prevention specialist at Positive Impact Health Centers in Atlanta, GA.

• ADAP Corporate Partner awarded to Lambda Legal for their tireless work on behalf of so many people living with HIV/AIDS, including most recently with Harrison v. Mattis & Doe v. Mattis. 

• ADAP Lawmaker awarded to the Honorable John McCain, Arizona’s senior U.S. Senator, for his courageous thumbs down vote against repealing the Affordable Care Act. Sen. McCain's surprise vote ensured countless people living with HIV/AIDS continued to receive care. Former President Barack Obama even called McCain to thank him!

• ADAP Community Organization awarded to the Community Research Initiative ("CRI"), based in Boston, MA. CRI embodies the community-based focus that has long been associated with appropriate and timely access to care and treatment for people living with HIV/AIDS. Serving over 12,000 clients in the greater metropolitan area of Boston, CRI not only manages Massachusetts’ AIDS Drug Assistance Program, but it has also been on the front lines in fighting Hepatitis C, training service providers on culturally competent care, and advocating for successful prevention strategies, just to name a few. Learn more at https://crine.org. 

• ADAP Media awarded to Larisa Epatko with PBS News Hour for her "5 good news stories about the fight against HIV/AIDS," which was posted on June 13, 2018. 

• ADAP Grassroots Campaign awarded to Let’s Kick A$$ for their "Long-Term Survivors Stories Public Service Announcement," which features Long-Term Survivors sharing their personal stories what it means them to be a long-term survivor. 

• ADAP Social Media Campaign awarded to Jennifer Vaughan for her YouTube channel,"Jennifer’s Positive HIV Life,"with over 10,000 subscribers and with almost 2 million views on her 90+ videos about living with HIV/AIDS.

Information about the awards (including former honorees) is listed online at  www.adapadvocacyassociation.org/awards.html.

Tickets for the awards dinner can be purchased online. This year's awards dinner will be headlined by the one and only, Josh Robbins (who also happens to be a past award honoree).

Congratulations to the honorees of the 2017-2018 ADAP Leadership Awards!