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.

"And We Will be Ignored No Longer" - The San Francisco Principles 2020

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

It was 1983 amid rising anger and fear over the federal government's failure to address the AIDS epidemic in the United States that people living with HIV/AIDS assembled to demand, “Nothing about us without us.” The Denver Principles were the first self-empowerment statement issued by people living with HIV/AIDS, yet nearly forty years later it still serves as the foundational platform for HIV advocacy. Now a chronic disease, HIV is turning gray. Although the face of the HIV epidemic has changed over time, our demands remain much the same: inclusion, resources, and treatment!

Authored by five long-term survivors — Paul Aguilar, Harry Breaux, Vince Crisostomo, Michael Rouppet, and Hank Trout — The San Francisco Principles seek more equitable care and services for long-term HIV survivors in the United States. These Principles address the unique concerns and needs among long-term survivors, among them ageism, isolation, and their shared history (Wilder, 2021).

Said Hank Trout, MA, of the collective work put into the statement: "For our purposes with the Principles, we chose to define long-term survivors as those of us who were diagnosed during the fifteen-year period between 1981 and 1996, before the advent of HAART. It is we who bore the brunt of the AIDS pandemic from the very first. It is we who suffered the first diagnoses and the unmitigated fear of catching or spreading the disease; we who buried our friends and lovers and family members after watching them slowly disintegrate; we who were ignored by public health officials, laughed at by politicians, condemned by religious leaders, and shunned by our own communities; we who put our bodies on the line as unpaid guinea pigs for pharmaceutical companies who have made billions in profits off us; we who submitted to the first toxic trials and research programs; we who are still living with PTSD from all the losses and chaos of the early, horrendous days of this pandemic. And finally, we are the ones who set the standard for compassionate caring for our own community" (Trout, 2020).

The ADAP Advocacy Association has long espoused the tenets of the self-empowerment message spelled out in The Denver Principles. The following value statements are the foundational ideals under which our organization operates:

• That the organization consistently strives to achieve them, while encouraging its supporters to do the same.
• That the voice of persons living with HIV/AIDS shall always be at the table and the center of the discussion.
• That HIV/AIDS advocates should welcome the opportunity to join the skills, experience and voices with others on issues of disability and access to adequate healthcare for all Americans.
• That advocacy efforts targeted to our federal government shall always carry the needed messages applicable at the state and local level.
• That messages and information shall be in accessible formats understandable to - and also deliverable by - grassroots advocates in any setting.

The ADAP Advocacy Association also has embraced the need for improving supports and services for the long-term survivors among us. We called attention to older adults with HIV as the Forgotten Majority. We raised awareness about AIDS Survivor Syndrome and understanding the linkages between mental health and HIV/AIDS. We highlighted Covid-19's disproportionate impact on older adults living with HIV & long-term Ssurvivors. And now, we wholeheartedly support The San Francisco Principles!

As we turn the page on an Administration that has ignored much of the needs facing the HIV community, as well as fueling stigma in this country, it is important that our advocacy efforts take a look back on The Denver Principles, while also look forward to The San Francisco Principles. Both serve to empower our efforts! 

Read the San Francisco Principles 2020.

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. 

Now a chronic disease, HIV is turning gray

By: Jeffrey R. Lewis

On June 5, 1981, a new public health threat reared its ugly head in the United States: five cases of Pneumocystiscarinii pneumonia (“PCP”) were reported by the Centers for Disease Control & Prevention (“CDC”) in its Morbidity & Mortality Weekly Report (“MMWR”) (CDC, 2001). What was first identified as gay-related immune deficiency, or GRID (Altman, 1982), would later be labeled by scientists as the Acquired Immunodeficiency Syndrome (“AIDS”).  Some years later, it was determined the human immunodeficiency virus (“HIV”) caused AIDS, and it started the dark legacy behind HIV/AIDS.

Photo Source: NAMES Project

This legacy lives on. Since 1982, an estimated 692,790 Americans have died of HIV-related illnesses (Cichocki, 2019). Fortunately, things are changing. Major advances in the care and treatment available to people living with HIV-infection means that they are living longer. In other words, HIV is turning gray!

In the United States today, young adults with HIV-infection who adhere to their antiretroviral (“ARV”) treatment maintain lower viral loads and living longer. Many such patients are expected to mirror the life expectancy of someone in the general population, which is around 78 years (Preidt, 2017). The advent of the highly active antiretroviral therapies (“HAART”) has turned HIV/AIDS from a death sentence to a manageable, chronic illness similar to diabetes, epilepsy, or cardiovascular disease (WHO, 2017). This stands in stark contrast to the early days of the AIDS epidemic (before there was even an HIV-specific test), when life expectancy was often only 1 or 2 years (Quora, 2017).

Several years ago, Prudential Financial Inc. became the first major life insurance company to offer life insurance products to people living with HIV-infection. Although Prudential has discontinued its life insurance products for people with this disease, multiple other companies are now offering policies to people with HIV (LIB, 2019), further suggesting that HIV is viewed as a chronic rather than a fatal, illness.

There are many socio-economic variables contributing to life expectancy, but modern HIV treatment plays a significant role (Preidt, 2017) in extending life. This underscores the need to afford people with HIV the opportunity to access timely, appropriate HIV care and treatment, regardless of their ability to pay for it. Public safety-net assistance, such as the AIDS Drug Assistance Program (“ADAP”) and Medicaid, deserve the ongoing support of our nation’s leaders, along with robust federal funding and liberalized state drug formularies. Anything less does a true disservice to those who stand to lose their lives to this epidemic.

From a historical perspective, we should recall that the partnerships forged between advocacy groups, government agencies, and industry changed the medical, scientific, and political landscape…for the better! Despite initial distrust among stakeholders, slowly, this partnership inched us toward stemming the tidal wave of AIDS-related deaths among family, friends, neighbors, and colleagues (Arnold, 2019).

Fast forward to 2016, when half of the people living with HIV-infection are aged 50 and older (CDC, 2019). What once seemed unthinkable is now more common. According to the CDC, in 2016, an estimated 327,000 people aged 55 and older were living with HIV. Significant majorities of them had received some care (69%), were retained in care (56%), or were virally suppressed (60%). That isn’t to suggest the epidemic is over, because that same year, there were 10,944 deaths among people in the United States aged 50 and older with diagnosed HIV (CDC, 2019).

The demographics behind HIV continue to shift. By next year, as many as 65-70% of people living with HIV-infection will be age 50 or older (Birnstengel, 2019). That is, an estimated 660,000 of  1.1 million women, men, and transgender people living with HIV/AIDS will be over age 50 (Anderson, 2018). Similar to the general population, older patients in this cohort are changing the face of healthcare. We should be doing more to address their needs.

As the face of the epidemic has aged, so have the challenges facing people living with HIV-infection. For many long-term survivors, the evolution of this epidemic has been mentally and emotionally taxing. After all, they watched so many people around them lose their battles to AIDS, only to be left wondering: why did I survive?

For those patients who lived through the dark days of the epidemic, it has also taken its toll on their bodies. AIDS-defining illnesses among people aging with HIV have been replaced with HIV-associated non-AIDS conditions. Common are cardiovascular disease, lung disease, certain cancers, dementia, and liver disease (HIV.gov, 2019). Aging with HIV is also presenting unique health changes for older women living with HIV.

As aging with HIV slowly gains notoriety, some troubling trends are emerging. Co-morbidities among long-term survivors typically associated with people in their 60s and 70s are striking two decades earlier. This phenomenon is most likely linked to the immune system inflammation caused by the virus (POZ, 2019).

The increased likelihood of co-morbidities is ominous. According to AIDSinfo.gov, “People with HIV are more likely to have type 2 diabetes than people without HIV. Additionally, some HIV medicines may increase the risk of type 2 diabetes in people with HIV” (2019). HIV-infected patients are at higher risk (61%) of cardiovascular disease compared to the general population (Triant, 2013). And among patients with lower CD4 counts, their prevalence for developing HIV-associated dementia (7%-27%) increases during the later stages of infection (Huang, 2018). These co-morbidities represent only a few faced by this graying population.

Despite ambitious plans to End the Epidemic by 2030, our public health system needs to adapt to these new challenges. Older HIV patients struggle to cope with many obstacles, among them mental health problems, homelessness, and co-morbidities, daily.

The modern marvels behind HAART have done little to help these long-term survivors with the co-occurring mental health conditions that often plague them, such as the guilt associated with survival when so many others have died, depression, anxiety, or the loneliness that many endure. Tez Anderson, a longtime AIDS activist, has dubbed this condition “AIDS Survivor Syndrome” (Anderson, 2016).

Anderson summarized how many long-term survivors feel about the epidemic: “The people and agencies providing our care is more focused on the future, while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years as the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old” (Anderson, 2018).

Research has shown that anxiety, cognitive or mood disorders, and depression are common among people living with HIV-infection, yet fewer than one-half of the cases get recognized clinically (Williamson, 2019). Among patients who are dually diagnosed with HIV and depression, as many as eight in 10 are not receiving psychosocial care (Williamson, 2019).

Photo Source: HIV.gov

We have an opportunity to integrate HIV/AIDS service programs and mental health care, which would improve the overall health and outcomes of these patients. Long Term Survivors Awareness Day, which is now recognized nationally on June 5th of each year, represents a good first step in raising the awareness to make the needed changes.

There is a strong linkage between worsening health status and unstable housing status (Macsata, 2017), yet there remains a disproportionate number of people living with HIV/AIDS in care who are homeless or living in marginalized housing environments (NCH, 2009). It is even more concerning because unstable housing status often leads patients to under-utilize the care and treatment needed to achieve viral suppression (Milloy, 2013).

Earlier this year, the San Francisco Chronicle ran, “Aging onto the Street,” highlighting the urgency behind homelessness and its growing impact on people aged 50 and over. According to the Chronicle’s reporting, among survey respondents older than 50 who participated in a recent study, more than 40 percent had experienced homelessness for the first time after turning 50. The piece also features 62-year-old Michelle Myers, who is homeless, HIV-positive, and newly diagnosed with cancer (Fagan, 2019).

I’ve always been moved by the journey experienced by my friend and colleague, Wanda Brendle-Moss, from Winston-Salem, NC. Wanda, who is a registered nurse who cared for AIDS patients during the early days, when some front-line healthcare staff refused to do so, in 2009 found herself HIV-positive and living in her car. Wanda persevered with assistance from family, friends, and a rural AIDS Service Organization. Not everyone has been so fortunate, however.

While gone are the days of local obituaries sprinkled with announcements of another friend or neighbor lost to AIDS, their struggles remain visible on the faces of the many people who remain with us. The face of the epidemic ages before us. It is our societal obligation to help these long-term survivors – whether it is through expanded mental health services, or making affordable housing more readily available, or finding clinicians to treat their emerging co-morbidities. HIV may be graying, but that doesn’t mean we should allow these patients to be forgotten.

And, our ultimate focus should be on the creation of a community-based long term care system that is blind to disabilities, focused on patient-centered care, and a sliding fee scale to ensure that people who can afford to pay more do, and others are not penalized.

The need is great and growing.  The time for real legislative action is now.

Editor's Note: Jeffrey Lewis is the President and CEO of Legacy Health Endowment in Turlock, Ca. The views expressed our his own. He can be reached at jeffrey@legacyhealthendowment.org.

References:

• AIDSinfo.gov (2019, October 18). HIV and Diabetes. U.S. Department of Health & Human Services. Retrieved online at https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/22/59/hiv-and-diabetes.
• Altman, Lawrence K. (1982, May 11). NEW HOMOSEXUAL DISORDER WORRIES HEALTH OFFICIALS. The New York Times. Retrieved online at https://www.nytimes.com/1982/05/11/science/new-homosexual-disorder-worries-health-officials.html.
• Anderson, Tez (2016, August 8). What is AIDS Survivor Syndrome? And Why You Need to Know. LetsKickASS. Retrieved online at https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0.
• Anderson, Tez (2018, September 6). Older Adults with HIV: The Forgotten Majority. The ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2018/09/older-adults-with-hiv-forgotten-majority.html.
• Arnold, William E. (2019). National ADAP Working Group. Community Access National Network.
• Avert (2019, September 26). GROWING OLDER AND AGEING WITH HIV. Retrieved online at https://www.avert.org/living-with-hiv/health-wellbeing/growing-older-ageing.
• Birnstengel, Grace (2019, July 5). Dual Stigma: HIV Positive and Over 50. Next Avenue. Retrieved online at https://www.nextavenue.org/stigma-hiv-positive-and-over-50/.
• Centers for Disease Control & Prevention (2019, November 12). HIV and Older Americans. Division of HIV/AIDS Prevention, National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. Retrieved online at https://www.cdc.gov/hiv/group/age/olderamericans/index.html.
• Cichocki, RN, Mark (2019, August 21). How Many People Have Died of HIV? Despite a reversal in AIDS deaths, challenges remain. Very Well Health. Retrieved online at https://www.verywellhealth.com/how-many-people-have-died-of-aids-48721.
• Fagan, Kevin (2019, March 8). Aging onto the street. San Francisco Chronicle. Retrieved online at https://www.sfchronicle.com/bayarea/article/Aging-onto-the-street-Nearly-half-of-older-13668900.php.
• “First Report of AIDS” (2001). Morbidity & Mortality Weekly Report 50 (21): 1 June 2001. Retrieved online at https://www.cdc.gov/mmwr/PDF/wk/mm5021.pdf.
• Huang, Juebin, MD (March 2018). HIV-Associated Dementia. Merck. Retrieved online at https://www.merckmanuals.com/professional/neurologic-disorders/delirium-and-dementia/hiv-associated-dementia.
• Life Insurance Blog (2019, October 11). HIV Life Insurance with Prudential. Retrieved online at https://www.lifeinsuranceblog.net/hiv-life-insurance-with-prudential/.
• Macsata, Brandon M. (2017, June 8). Linkages to Care - Housing is Healthcare: Linking Stable Housing & Medication Adherence. The ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2017/06/linkages-to-care-housing-is-healthcare.html.
• HIV.gov (2019, September 19). Aging with HIV – Growing Older with HIV. U.S. Department of Health & Human Services. Retrieved online at https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv.
• Milloy, M. J., Marshall, B. D., Montaner, J., & Wood, E. (2012). Housing status and the health of people living with HIV/AIDS. Current HIV/AIDS reports, 9(4), 364–374. doi:10.1007/s11904-012-0137-5. Retrieved online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693560/.
• National Coalition for the Homeless (2009). HIV/AIDS and Homelessness. Retrieved online at http://www.nationalhomeless.org/factsheets/hiv.html.
• POZ Magazine (2019, July 19). Aging and HIV. Retrieved online at https://www.poz.com/basics/hiv-basics/hiv-aging.
• Preidt, Robert (2017, May 10). HIV Life Expectancy Nears Normal With Treatment – Still small, but persistent gaps for some groups with HIV, global health expert says. WebMD. Retrieved online at https://www.webmd.com/hiv-aids/news/20170510/life-expectancy-with-hiv-nears-normal-with-treatment#1.
• Quora (2017). What is the life expectancy of a person diagnosed with HIV in 1982? Retrieved online at https://www.quora.com/What-is-the-life-expectancy-of-a-person-diagnosed-with-HIV-in-1982.
• Triant V. A. (2013). Cardiovascular disease and HIV infection. Current HIV/AIDS reports, 10(3), 199–206. doi:10.1007/s11904-013-0168-6. Retrieved online at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3964878/.
• World Health Organization (2017). HIV: from a devastating epidemic to a manageable chronic disease. Ten years in public health 2007-2017. Retrieved online at https://www.who.int/publications/10-year-review/hiv/en/.

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.

AIDS Survivor Syndrome & Understanding the Linkages between Mental Health and HIV/AIDS

By: John Williamson, intern, ADAP Advocacy Association, and candidate for Masters in Social Work

In the early years of monotherapy treatment, a person living with HIV at the age of 20 had an additional life expectancy of 11.8 years (Gueler, A., Moser, A., Egger, M. et al., 2017). Gueler et al. (2017) reports that since the introduction of the combination antiretroviral treatment, that number has risen to a life expectancy of 54.9 years. As medical treatments continue to increase the survival rate among people living with HIV/AIDS, we must continue working to understand the psychological challenges the infection has on ones mental well being. We are often familiar with the physical and medical aspects associated with HIV/AIDS, however, the social and psychological factors are equally important as they can shape the experience of what it is like to be a person living with HIV (Roger, K., Mignone, J., & Kirkland, S., 2013).

According to HIV.gov (2019), people who are HIV positive are at an increased risk of developing an anxiety, cognitive or mood disorder, and depression. During a cross sectional survey in 2003 researchers found that more than 1 in 3 people who are living with an HIV infection have also been diagnosed with Major Depressive Disorder. While there is a significant amount of individuals who are diagnosed with a co-occurring mental health condition and HIV/AIDS fewer than one half of depression cases get recognized clinically in people with HIV (Asch, S., Kilbourne A., Gifford A., et al., 2003). Asch et al.,(2003) also found that individuals with a co-occurring mental health diagnosis of depression and an HIV infection only get treated 18% of the time for their depression, 7% get treated adequately, and only 5% achieve remission. This means that 82% of people who are dually diagnosed with HIV and depression do not receive treatment for their depression.

There are 1.6 million people in the United States living with HIV/AIDS with over half of them aged 50 or older and an expectation that  it will rise to 70% by 2020 (T.Anderson, 2016). Tez Anderson (seen below), Founder of Let’s Kick ASS, an AIDS Survivor Advocacy Group coined the term AIDS Survivor Syndrome (ASS) to describe the “spectrum of sustained trauma survivorship resulting from living through the AIDS pandemic.” People who are living with HIV/AIDS face a historically unique set of barriers including complicated bereavement, trauma, guilt, loss of relationships or community, and increased risk of depression, suicidality, and social withdrawal (Nord, 1996). One of the factors that distinguishes the trauma of someone living with HIV/AIDS from other tragedies or disasters, is the ongoing impact the infection has on a survivor, ultimately leading to further traumatization. Many people living with HIV/AIDS encounter losses that impact their sense of identity such as assumptions about life, future expectations, self-esteem, and security (Nord, 1997).

Photo Source: NBC's Today Show

Many long term survivors report differing beliefs about why they outlived their peers including the will to live, a healthy lifestyle, support from others, particular treatments, and clinical interventions such as psychotherapy (Sally, 1994). Researchers conducted an 8 site US study consisting of 803 people living with HIV and a co-occurring mental health condition and found that only 59% of individuals were receiving any mental health treatment (Weaver, Conover, Proescholdbell, Arno, Ang, Ettner, 2008). In the same study, Weaver et al. (2008) found that among their participants who were dually diagnosed with a mood disorder, only 40% of them were taking an antidepressant. People who are living with HIV are 2 to 3 times more likely to have depression and anxiety (Mascolini, 2016). Results from the US Women’s Interagency HIV Study (WIHS) (2005) found that women with chronic depressive symptoms had a 70% higher risk of AIDS related death than women with who expressed little to no symptoms of depression. WIHS (2005) also found that receiving mental health services halved the risk of AIDS related deaths in participants.

Through the integration of mental health into HIV/AIDS programs and initiatives, we have the opportunity to improve the overall health and outcomes of people living with HIV/AIDS. Direct care professionals are often not skilled in identifying symptoms of a mental health condition nor are they prepared to take action for referrals, management, or additional assessment. Training healthcare providers in the assessment and treatment of common mental health and substance use disorders as well as completing referrals to specialized services must be a part of the infrastructure of our healthcare system. By combining routine depression screening, provider training, proper supervision, and a closer relationship between mental health, substance use, and HIV/AIDS services we can work toward stabilizing the medical and physical symptoms while beginning to address the long term effects of living with HIV/AIDS.

Organizations such as Let’s Kick ASS, Elizabeth Taylor 50 Plus Network, and The Liberation Institute are taking a proactive step in providing services and research for long term survivors of HIV. Tez Anderson, founder of Let’s Kick ASS has led the way to understanding and treating ASS by working to increase research, dedicating June 5th as Long Term Survivors Awareness Day, and offering networking and wellness events in both Miami and New York as well as other cities. Elizabeth Taylor 50 Plus Network in San Francisco also offers support groups to both HIV positive and negative bisexual, gay, and transgender men over 50. They also offer weekly social events, health and wellness learning events, and community service projects. The Liberation Institute is another great example of organizations who are taking a stand for long term survivors of HIV/AIDS. They are a  not for profit mental health organization that offers psychotherapy, professional counseling, yoga, and meditation as well as other groups on a sliding scale basis.

Photo Source: POZ.com

While offering in person services is incredibly important, it is also important to increase as much access to support and information related to HIV/AIDS as possible. That’s why organizations such as the Well Project have created interactive online communities to increase awareness and access to support and information about HIV/AIDS. The Well Project is a not for profit organization that focuses on women and girls with the mission to change the course of the HIV/AIDS pandemic. They offer free online accounts where members can develop a profile and interact with other members through developing communities, joining/creating groups, sharing research/information, and connection to further in-person and online resources as well as group and private chats. Understanding the unique needs of the aging population living with HIV is crucial to developing effective treatments that will increase both life expectancy and overall well being.  HealthHIV has recently developed the Inaugural HealthHIV State of Aging and HIV Survey in order to assess the needs of people living with HIV/AIDS that are over 50 years of age. This survey will allow researchers to create informed medical and consumer education while also addressing the coordination of care for people living with HIV/AIDS.

For people who are HIV positive or are in need of testing or services, HIV.gov offers many tools to identify and connect you with providers and organizations within your zip code. You can find your state HIV/AIDS hotline, a toll free hotline connecting you with local agencies that can help identify what services you are eligible for and assist you in attaining them. HIV.gov also offers a link to the American Academy of HIV Medicines Referral list where one can search a directory of healthcare providers that specialize in HIV management and prevention while also identifying the different types of care settings.

According to the World Health Organization (2019) more than 70 million people have been infected with HIV since the beginning of the epidemic and about 35 million have died of HIV. The challenges surrounding HIV/AIDS are complex and they will take a unified effort to overcome. We can each play a part in the battle of HIV, whether that is by joining your local AIDS walk, participating in research such as the HealthHIV State of Aging and HIV survey, or joining community awareness and prevention projects.

References:

• Anderson, T. (2016). What is AIDS survivor syndrome? Retrieved: https://letskickass.hiv/what-is-aids-survivor-syndrome-dc0560e58ff0
• Asch SM, Kilbourne AM, Gifford AL, et al. (2003) Underdiagnosis of depression in HIV: Who are we missing? Journal of  General Internal Medicine. (18); 450-460
• Bacon, M., Viktor, W [...], and Mary A. Young. (2005)The women's interagency HIV Study (WIHS): An observational cohort brings clinical sciences to the bench. American Society for Microbiology, (9), 1013 - 1019
• Cook, J., Grey, D., Burke, J., et al. (2004). Depressive symptoms and AIDS related mortality among a multi site cohort of HIV positive women. American Journal of Public Health. (94) 1133 – 1140
• Gueler A, Moser A, Calmy A, Günthard H, Bernasconi E, Furrer H, Fux C, Battegay M, Cavassini M, Vernazza P, Zwahlen M, Egger M.(2017). Swiss HIV Cohort Study, Swiss National Cohort. Life expectancy in HIV-positive persons in Switzerland: Matched comparison with general population. US National Library of Medicine. 31(3):427-436. doi: 10.1097/QAD.0000000000001335
• HIV.GOV (2019). US Statistics: Fast facts. Retrieved: https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics
• Horberg MA, Silverberg MJ, Hurley LB, et al. (2008) Effects of depression and selective serotonin reuptake inhibitor use on adherence to highly active antiretroviral therapy and on clinical outcomes in HIV-infected patients. Journal of Acquired Immune Deficiency Syndrome.47, 384-390
• Mascolini, M. (2016). High depression rates with HIV and its scathing clinical impact. Retrieved: https://www.thebodypro.com/article/high-depression-rates-with-hiv--and-its-scathing-c
• Murrell , D. (2019). Facts about HIV: Life expectancy and long-term outlook. Retrieved:  https://www.healthline.com/health/hiv-aids/life-expectancy
• Nord, D. (1997). Threats to identity in survivors of multiple AIDS related losses. American Journal of Psychotherapy, 51 (3)
• Nord, D. (1996). Issues and implications in the counseling of survivors of multiple AIDS related loss. Death Studies. 20, 389 - 414
• Roger, K., Mignonette, J., & Kirkland, S. (2013). Social aspects of HIV/AIDS and Aging: A thematic review. Canadian Journal on Aging. 32 (3), 298 – 306 doi: 10.1017/S0714980813000330
• Sally, J.(1994). Psychosocial issues of AIDS long term survivors. Families in Society. 75, 6, 324
• Weaver, M., Conover, C., Proescholdbell, R., Arno, P., Ang, A., Ettner, S. (2008). Utilization of mental heath and substance abuse care for people living with HIV/AIDS, chronic mental illness, and substance abuse disorders. Journal of Acquired Immune Deficiency Syndrome. 447, 449 – 458
• Weber, R., Ruppik, M., Rickenbach, M., Spoerri, A., Furrer, H., Battegay, M., Cavassini, M., Calmy, A., Bernasconi, E., Schmid, P., Flepp, M., Kowalska, J., Ledergerber, B., et al. (2012) . Decreasing mortality and changing patterns of causes of death in the Swiss HIV Cohort Study. Retrieved: https://doi.org/10.1111/j.1468-1293.2012.01051.x
• World Health Organization. (2019). Global health observatory (GHO) data. Retrieved: https://www.who.int/gho/hiv/en/

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.

Older Adults with HIV: The Forgotten Majority

By: Tez Anderson, Founder & Executive Director, Let’s Kick ASS—AIDS Survivor Syndrome

Older Adults with HIV make up 60 percent of all people living with the virus in the United States. But the majority cohort continues to overlooked and ignored by HIV/AIDS care, services and community-based organizations, international and national AIDS conferences, and governmental bodies.

The median age of the people living with HIV in America is 58. Approximately 660,000 of the estimated 1.1 million women, men and transgender people living with the virus over age 50. A proportion that in 2020 will increase to 70 percent.

As HIV activists, we hear a lot about “key populations,” disparities” and “bridging the gaps.” The conversation usually revolves around gender, gender expression, race and poverty and the roles they play in people with HIV lives.

But the topic of Aging and HIV isn’t brought up. Why is it that the largest key population—Older Adults with HIV—is never included in these gaps? Why do older people with HIV receive the least attention, funding, and focus?

It would be easy to point the finger at discrimination based on age, or ageism. While that is undoubtedly part of the problem, there is more to it.

For one, HIV has all but disappeared from the mainstream headlines in the U.S. It was once a fatal disease and is now a “chronic manageable disease,” ignoring the fact that without daily medications it is still deadly. Most long-term survivors scoff at the idea that it is easily managed. HIV/AIDS is no longer on most people’s mind.

For another, the HIV care community and conferences have overoptimistically focused a cure (which remains elusive) and being “AIDS-Free” by some arbitrary date. It was once in 2020, and now it is 2030.

The people and agencies providing our care are more focused on the future while older adults are regarded as relics of a bygone era. Our lives are defined by mass causalities, enormous loss, caretaking, illness, and ensuing trauma. We hear little about the astounding resilience of the first generation of people with HIV/AIDS. We do not think of individuals living with this virus for 20 and 30-plus years are the pioneers of the AIDS epidemic. We are survivors of the worst epidemic in history. Alas, too often we are just thought of as old.

Examples of the indifference include the U.S. Centers for Disease Control & Prevention ("CDC") is aging data from 2013, old statics which vastly under-represents the present-day reality. September 18 is National HIV/AIDS and Aging Awareness Day. But the folks that originated the day have all but abandoned it. The website has not been updated years. If there’s a theme for 2018, I can’t find it.

This ongoing in indifference has an impact on the health and well-being of older adults. Lost in the apathy are the complexities and nuances of HIV and aging. What about our lives right now?

For instance, the differences in quality of life for long-term survivors and those older adults who have acquired HIV more recently. These facets matter.

Polypharmacy is a big word for the number of medications we take for “non–HIV comorbidities.” We appear to be aging at an accentuated rate too. Older adults with HIV are more likely to exhibit characteristics of people in their 60s, 70s or even 80s. In other words, 60 is the new 70 for those living with HIV for decades.

I often wonder if part of the problem is the aim established by the CDC and UNAIDS which states the “ultimate goal is achieving viral suppression.” They don’t have a vision for what happens next. What is beyond viral suppression for a population aging with HIV?

What about those living with HIV who are who’ve been undetectable for years. Then what? It seems to be the end of a conversation not the start of another dialogue about. How about we focus on what it will take to change the narrative to what it will take for healthy aging with HIV? How does that look? Isn’t that a worthier goal?

Aging is not on the agenda. It is time to change this. It will take us demanding it and not put up with invisibility. We are the ones that changed the face of healthcare advocacy for all diseases. Are we up for doing the something to envision an agenda for aging with HIV?

Some communities around the country are taking matters into their own hands and holding dedicated HIV and Aging Conferences. I’ve spoken at some of these conferences, and they are incredible. But are we not worthy of an “aging track” or the spotlight on the main stage at expensive AIDS conferences?

The thing I hear most from older adults and long-term survivors is they feel forgotten and invisible. If this is how we treat our aging population what’s the message we are sending to young people living with HIV?

It seems the focus is on “ushering in an AIDS-Free generation” and a concerted effort to End AIDS by, first it was 2020, now it is 2030. What does “ending AIDS” mean to those of us living with AIDS for decades? Most of us finishing it “after I’m dead.”

I know we can walk and chew gum at the same time. We can envision an AIDS-free generation and ensure that our health care system and services are empowering the first generation to live meaningful and healthier lives.

Learn more about Let’s Kick ASS—AIDS Survivor Syndrome online at https://letskickass.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.