Thursday, August 26, 2021

Reflections from an HIV Advocate's Journey: Guy Anthony

By: Guy Anthony, Board Member, ADAP Advocacy Association, and President/CEO, Black, Gifted & Whole Foundation

I do not know for sure; but being silent about my HIV diagnosis may have been the easier path to take. But it surely would have been the less rewarding path. 

Shortly after I was diagnosed, I had a mentor tell me, “if we do not tell our own stories, then our stories die along with us, or others are left to determine the story about us.” At that moment, I knew that I had to tell my story. I knew that I could not let it die or let others write it for me. I knew what I was going through would help others, especially other Black gay boys. I had a voice to amplify the message of one of the most marginalized groups in society. I knew I could not be silent about my disease. 

The very moment I was diagnosed, I felt the weight of the stigmas associated with HIV/AIDS creeping upon me. That feeling was crushing yet I felt drawn to help stop the stigma. I have dedicated my adult life to neutralizing local and global stigmas associated with HIV/AIDS. 

Pos(+)itively Beautiful: A Book of Affirmations, Advice & Advocacy (Volume 1)

Always an ARTivist (artist and activist), I released Pos(+)tively Beautiful: Affirmations, Advocacy & Advice, a collection of narratives, imagery, and affirming anecdotes, on World AIDS Day in 2012. I also began to work with newly diagnosed Black gay men to mentor them through the reality of their diagnosis, their health care options, and assist them with treatment adherence. By working with these men, I helped them achieve viral suppression and helped to reduce the stigma that HIV/AIDS is a death sentence. 

Seeing the tenacity, drive, and strong will of these Black gay men pushed me further and I began to receive recognitions for my work. I served on Washington, DC’s Ryan White Planning Council and helped to oversee the spending of millions of dollars in HIV funding for the city of Washington, DC. I have been invited as a regular contributor for AIDS.gov and POZ.com, where I have gotten to share articles about mental health and HIV, reflections to my younger self, and how art saved my life. 

Guy Anthony
Photo Source: POZ Magazine

In 2015, Brandon M. Macsata invited me to deliver the opening advocacy keynote at the ADAP Advocacy Association's 7th Annual AIDS Drug Assistance Program Conference in Washington, DC. "Your Seat at the Table" was my message back then to advocates living with HIV, and it remains so today. Only one year later, I was seated on the board of directors for the ADAP Advocacy Association.

I was named one of the top 100 HIV prevention leaders under 30 by POZ Magazine, one of the top 100 Black LGBTQ/SGL Emerging Leaders to Watch by National Black Justice Coalition, one of DBQ Magazine’s LOUD 100, and one of the Top 35 Millennial Influencers by Next Big Thing Inc. 

As a gay, HIV positive, Black man I knew I still had more to offer. I created Black, Gifted, and Whole to celebrate the brilliance and resilience of Black gay men like myself and provide scholarships to Black Queer folx attending college. Black, Gifted, and Whole was recently named one of the six Black Companies You Should Know by Ebony Magazine. I also currently serve as a brand ambassador for Janssen Pharmaceuticals, one of the country’s largest pharmaceutical companies, to help ensure all HIV/AIDS positive gay men are aware of their pharmaceutical options. 

Guy Anthony

In 2020, I was included on Metrosource Magazine’s list of People We Love. While I am grateful for the love and recognition I have received, I am forever fulfilled and humbled by the opportunity to lift up gay, Black voices and show the world the power of my community.

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.  

Thursday, August 19, 2021

Reflections from an HIV Advocate's Journey: Arianna Lint

By: Arianna Lint, President and Founder, Arianna's Center/ Translatina Florida

Today, I am a proud Trans Latina, openly living with HIV, but my journey to get here wasn’t easy. Originally from Peru, I knew that to live life as my authentic self, I would need to leave, and that’s why I came to the United States. My American life began in New York, and as a someone navigating my transition and unable to speak English my options were limited and so like many trans women, I survived as sex worker. For several years I struggled, enduring stigma, discrimination, and violence, while I saved my money as best I could. What kept me focused was that I had a dream.

That dream was I would move to Florida and start a new life. My HIV diagnosis came at a very difficult time as I was finally realizing my move to Florida. It was during the process of attempting to purchase life insurance that I found out that I was HIV-positive. I was devastated, lost, and felt very alone. My saving grace was the love and support of my family. I’ve always been incredibly close to my family, in particular my mother. Their support and acceptance have played a huge role in my life and after my HIV diagnosis I was at a loss for how to disclose my status to them. I experienced feelings of shame and was terrified of disappointing them, and so for almost 4 years I hid my status from them. 

When I found the strength to confide in my mother, she shared with me that she knew I was HIV positive. Apparently, she had found my HIV medications some years beforehand but had never said anything, instead waiting until I was ready to share my status with her. This was heartbreaking, knowing that she had been living with this knowledge for so long and knowing the worry she had been carrying with her. I’m one of the lucky ones though because she is my biggest supporter in everything I do. Not everyone in our community is so fortunate though and much stigma and rejection continue to exist particularly from transgender women of color living with HIV. 

Above all else it was the strength afforded to me by my mother that inspired me to become the unrelenting HIV advocate and transgender leader I am today. Her love and support along with that of my chosen family has helped me realize my dreams. I have a strong support system of traditional family and those friends and allies that have become “family” along the way. From opening my own agency, Arianna’s Center, which has been uplifting the lives of trans women of color for the last six years,  focused on providing services and advocacy from the trans community in Florida and Puerto Rico,  to becoming an international ambassador for the U=U campaign, to speaking and leading sessions at conferences throughout the country and Puerto Rico, and also being a recognized media spokesperson nationwide for trans issues, that love of my family, biological and chosen, has been my fuel for success.

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.  

Thursday, August 12, 2021

Reflections from an HIV Advocate's Journey: Maria Mejia

By: Maria Mejia, Board Member, Community Access National Network, and HIV advocate

Where do I start ? I dont want to sound tragic. I have lived so many things in these 33 years of living with this, hum, condition called HIV! I remeber being told as a little teen that I had AIDS in a time it was a death sentence...and people were dropping like flies. It was so scary for me, as a teen. I saw what was on television, with gay white men full of these black spots, and a little angel, Ryan White, who was constantly harassed just for wanting to go to school. I thought to myself if they do that to him what are they going to do to me? For the longest time, only my mother and little brother knew about my status.

I remember some television clips while i was living in my country, Colombia, where in my mind I returned to die! I saw marches. I saw much pain and sorrow! I witness people with AIDS being put into black garbage bags, and many funeral homes didn't even want to touch the bodies. The trauma has been described as a soldier coming back from war full of mental or physical wounds. We have lost so many brothers and sisters!!! 

Maria Mejia

I have survived, but like with many other long-term survivors, left with PTSD, anxiety, depression and survivors guilt. I urge people in the health system to make a special assessment for LONG TERM SURVIVORS and our unique needs. We are still here and we are still fighting. I remember in those early days, I had no medication, support system, support groups, social media or anything whatsoever.

After I almost died with 39 t-cells and Cancer in my uterus, I DECIDED TO LIVE! I started treatment here in the United States, retuning here because we had nothing in Colombia. I also started my grassroots work in activism ! Twenty-four years of hard work to help myself, and others all over the Globe. I am one of those examples that I wish would have been in my life after my diagnosis. Now, I have survived and I know exactly what my mission and purpose is until I go to the light.

Covid-19 came to trigger me and many of my friends! It is so horrible that almost 30 of my friends around of the Globe have passed away!!! Many left their meds form of suicide. Many from Cancer because they didn't get the proper diagnostics and treatment, including La Francis, who was one of my dearest friends from Spain. She basically had parallel stories with me. I don't know where to start to grief! 

I try to keep a positive mindset and push my spirit to go on. But, I hate Covid-19 !!! It has changed many peoples lives. 

The similarities with HIV/AIDS is scary. The stigma, shame, death, fear of the unknown, dying alone, and the black garbage bags. With all that being said. I urge everyone to help one another!!! Many of us are in isolation and many have relapsed on substances, and intimate partner violence is way up. It is so sad to see...but we must continue the fight and try to be strong.

Maria Mejia

It is hard to live with TWO pandemics at once, but it goes to show our resilience. Please continue pushing, continue fighting, and continue loving yourself and your brothers and sisters! I wish everyone much love and light. Until the next time...

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. 

Thursday, August 5, 2021

Reflections from an HIV Advocate's Journey: Theresa Nowlin

By: Theresa Nowlin, Board Member, ADAP Advocacy Association, and HIV advocate 

I have been living with HIV since 1986, and living my truth in recovery since 1995. Oddly, I didn't know anything about recovery nor did I think living life without self-medicating was even possible for me. In fact, I thought that it was my life, and that it was the way I would die.

Theresa Nowlin

At age 11, I started using heroin. I knew nothing about addiction or the fact that you can get addicted to heroin. I went through my first withdrawal at age 16. I didn't even know how it would feel to experience withdrawal because heroin had become such a 'normal' part of my life. My life would change...for the better.

In 1990, I got pregnant with my son, Mark. At the time, a child born had only a 60% chance of being HIV-negative and a 40% chance of being born HIV-positive. I got on methadone and that's when I learned recovery was possible for me. Though I got enrolled in the local clinic in 1990 it took me until 1995 to totally leave heroin alone. That's when my journey to recovery began, but not without many challenges. 

In 1993, I got pregnant with second son (my sunshine), Sean, but mother-to-child transmission positivity rates had only slightly improved - there was a 80% chance that he would be HIV-negative and an 20% chance that he will be HIV-positive. By the Grace of God, both of my boys are HIV-negative. And for that, I am very grateful.

Since the birth of my second son, I have become a strong proponent of anti-retroviral therapy because these medications have not only saved my life, but they helped me grow so much by building a life with my children. I'm not saying that my journey was easy, but it's a lot better than chasing drugs. I was on methadone until 2007, and that year is when I started taking Suboxone. For me, it was a game changer. I feel so much better about myself, because I don't have to go to the clinic every day and see everyone passing drugs and talking about we're going to cop. For me, it feeds into my addiction.

I participated in Narcotics Anonymous therapy group counseling and the Boston Living Center's group programs, which is where I learned about addiction and how to use recovery tools to help me. I don't think I could have ever stopped using drugs if it wasn't for medication assistance treatment. It changed my life...for the better! 

Since 1995, I have accomplished so much in my life. I have witnessed so many sunsets with clear eyes. Because of recovery, I raised my boys. Because of recovery, I have become a HIV peer advocate and activist. Because of my recovery, I have learned to use my voice to fight stigma and discrimination for both HIV and substance-use disorder. I'm now dedicating much of my advocacy toward Ending the Epidemic, such as participating in the Getting to Zero HIV Infection Academy (that's me on the left in the photo).

Today, advocacy is a central part of my life. I serve on my local hospital consumer advisory board. I belong to the Positive Women's Network (PWN), which is a national women's HIV advocacy organization. I serve on the board of directors for the ADAP Advocacy Association. I fight for more public health funding, locally and federally. I educate anyone who will listen that HIV isn't over and why it's important to know your status, get tested regularly, and get on PrEP, if possible.

I am proud to be sober in my recovery. I am adherent to my medication therapy and regular doctors visits. I am a voice for marginalized communities most-impacted by addiction and HIV/AIDS. And most important, I am the mother of two beautiful boys who helped to change my life. 

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. 

Thursday, July 29, 2021

Improving ADAP Recertification: Reducing Barriers to Care & Achieving Equity for People Living with HIV

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

The Biden Administration has repeatedly asserted a priority to achieving social equity by specifically addressing the systemic barriers to a freer, fairer society. Among one of the greatest barriers to equity is the financial burdens associated with complicated health conditions, an issue readily acknowledged by the administration’s special enrollment period (SEP) for the federal health care marketplace and expanded subsidies inclusion in the American Rescue Plan (ARP). 

In reviewing this policy priority, the Biden Administration must consider the practical barriers created by burdensome application processes, particularly among programs aimed at helping the most marginalized and systemically disadvantaged among us. For people living with HIV/AIDS (PLWHAs), the eligibility recertification process for services under the Ryan White HIV/AIDS Program (RWHAP) – specifically in an effort to maintain medication access via AIDS Drug Assistance Programs (Part B) – is exceedingly burdensome. It represents a prime opportunity to reduce barriers to care. To that end, earlier this week the ADAP Advocacy Association called upon the Health Resources & Services Administration (HRSA) to improve the ADAP eligibility recertification process.

At current, in order for impoverished PLWHAs to access and maintain RWHAP-related benefits, they must first prove their HIV status, need based on other available benefits, and income upon applying for these benefits. Additionally, every six months thereafter, clients must prove their need based on other available benefits and income. For many states, this process includes multiple, required, in-person visits, verification of adherence to prescribed medication, verification of efforts toward seeking other public benefits, and verification of income. Some states allow for “self-attestation of no change” in terms of income and benefits.

Dr. David Malebranche points out, this is an unnecessary and overly burdensome process not just for clients but for providers as well, “[It] makes my job difficult because often patients are given time with me that is sucked up by them having to see the benefits counselor, which throws a wrench in the entire clinic schedule and puts everything behind. It's bad for patient care and causes staff/provider burnout.”

@DMalebranche: Two things need to happen with the AIDS Drug Assistance Program (ADAP) that helps uninsured people living with #HIV get no-cost medication: 1. Recertification should be every year instead of every 6 months. 2. An online recertification system to upload required documents.
Twitter - @DMalebranche

(Screen capture, Twitter - @DMalebranche: "Two things need to happen with the AIDS Drug Assistance Program (ADAP) that helps uninsured people living with #HIV get no-cost medication: 1. Recertification should be every year instead of every 6 months. 2. An online recertification system to upload required documents.”)

Dr. Malebranche went further to describe how between patients and providers, paperwork burdens can be untraditional in the sense of having to access multiple portals or websites or produce paper documents. Lack of investment in supporting clinic resources, specifically in recruiting and retaining staffing talent among benefits and/or case managers, has left several of his clients either lacking reminders to begin recertification or late reminders – resulting in the client falling out of care.  “That's just a few. Many of those issues can be tackled and improved, but people just don't want to on the local, state, and federal level.,” Dr. Malebranche continued, “And it just doesn’t follow the science. I have clients that don’t need to come see me every 6 months. Some of my clients don’t need to come in but once a year, if not for recertification.”

Indeed, the statutory requirement of ADAP grant recipients (states) and subrecipients does NOT include any specific time frame requirement for recertification. That policy is largely the result of an interpretation by HRSA through a “policy clarification notice” (PCN) for “[r]ecipients and their subrecipients are expected to vigorously pursue eligibility for other funding sources…” 

Ultimately, HRSA decided this means states and their contractors providing RWHAP services must mask impoverished PLWHA to jump through exceeding challenging hoops every 6 months to prove their need and the help they need cannot be provided by anyone else. Absent that directive – which, again, has no statutory basis – HRSA has given little direction as to how states must verify the need of RWHAP services for PLWHA within the state. Instead, HRSA routinely provides other suggestions – lacking the strength of guidance - often responding to lamentation of PLWHA and subrecipients providing direct services about the burden of certain state processes. 

In the wake of Covid-19 being declared a national public health emergency, HRSA issued further clarification to PCN 13-02, regarding processes related to eligibility for services under the RWHAP. Last updated on September 22, 2020, HRSA’s answer to all posted “frequently asked questions” regarding client recertification reads as follows:

"The health and safety of Ryan White HIV/AIDS Program (RWHAP) recipients, providers, and clients remains of paramount importance to HRSA during the COVID-19 pandemic. HRSA HAB encourages recipients to exercise flexibility in their eligibility determination and six-month recertification processes to promote social distancing practices and implement remote (telephonic or electronic) documentation processes when possible. Policy Clarification Notice (PCN) 13-02: Clarifications on Ryan White Program Client Eligibility Determinations and Recertification Requirements (PDF - 173 KB) outlines existing requirements and flexibilities with regard to RWHAP client eligibility determination and six-month recertification. Some examples of eligibility and recertification practices that are not required as per PCN 13-02 include:

  • In-person actions related to eligibility
  • Handwritten client signatures to accompany self-attestation
  • Notarized documentation to support eligibility and recertification determination
  • Documentation of any changes in income at six-month recertification if the change does not impact RWHAP eligibility
  • Dis-enrolling clients from RWHAP services who are unable to recertify eligibility within a reasonable timeframe

RWHAP recipients and subrecipients assume the risk of recouping any RWHAP funds utilized for clients ultimately determined to be ineligible, and should instead charge an alternate payment source, or otherwise ensure that funds are returned to their RWHAP.

HRSA HAB encourages RWHAP recipients to reassess their organization's eligibility and recertification policies and procedures and remove any procedures that may impede social distancing or other public health strategies necessary to minimize Covid-19 transmission, or that impose any additional requirements beyond those specified in PCN 13-02."

In this, again, HRSA abdicates directing states to invest in making RWHAP services, and thus ADAPs, more meaningfully accessible to PLWHAs who need these services the most. In this particular area, the Biden Administration has an opportunity to both reduce barriers to care and prosperity for PLWHAs but to also change HRSA’s approach to modernization in a way that helps this administration achieve its goals in Ending the HIV Epidemic, domestically.

Burdensome Paperwork
Photo Source: The Washington Free Beacon

Dr. Malebranche agreed. “I shouldn’t have to hope a sample of antiretroviral medication will get a client through until their recertification finally gets seen. My clients shouldn’t have to worry more about the paperwork than getting their care and, frankly, that’s where we’re at. And we’re losing people to care because of it.” Dr. Malebranche said an ideal would be annual recertification, a single portal/website, and proper funding in order to fully staff the needs of a clinic, client, and reporting would go a long way to meeting the needs of the moment. 

We need a uniform message between program operations, eligibility, and requirements and the message the Centers for Disease Control & Prevention, state health departments, and providers are supposed to be delivering: it’s time to meet people where they’re at. That means updating PCN 13-02 to allow for annual recertification and fund model program designs from the ground up. Answers to “FAQs” aren’t meaningful, if they lack enforcement and funding.

“I think now is a perfect time to revise things with ADAP. We've seen how the pandemic has disrupted care for people living with HIV, sexual and reproductive health and PrEP/PEP - why not make some modifications that have been needed for years now while we are having to make changes anyway?” 

An analysis of the State ADAP recertification process is available online at https://tinyurl.com/ctf5t696.

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. 

Thursday, July 22, 2021

Hope for Now: Addressing Suicide Among PLWHAs

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

“This highway's dark and empty.
Just miles and miles of endless road.
I've got a sickness pounding in my head.
I'm at the mercy of the ghost.”[1]
A diagnosis of being HIV positive back when this epidemic began, was synonymous with death. This, now dark road, was paved with unfathomable fear as more questions arose than answers. The virus was no longer the only infection that had occurred, as despair took form and occupied more mental space than hope. While receiving a diagnosis of being HIV positive no longer is a death sentence thanks to antiretroviral medication, people living with HIV/AIDS can sadly still face this type of mental darkness as a part of their lived experiences that leads to suicide ideation and successful suicide attempts.

Photo Source: Getty Images / tadamichi

Annually, an estimated 800,000 people die worldwide from suicide according to the World Health Organization.[2] In looking at the general population who have suicidal ideation, 1 out of 3 will attempt to commit suicide and one death will result from 286 attempts.[3] When compared to the general population, one in every two people living with HIV/AIDS experiences suicidal ideation and one attempt at suicide will occur according to a study conducted by the Penn State University College of Medicine.[4] Additionally, data analysis from 185,000 people living with HIV/AIDS indicated that this population were 100 times more likely to die from attempted suicide in contrast to the general population.[5] 
“I sought after, after reasons to stay
I was lost, I was lost”[6]
People living with HIV/AIDS experience risk factors that can contribute to the strong sentiments of feeling lost within their diagnosis. One of the most profound sources that impacts healthy experiences of happiness is the connectivity we received from other people. People serve as the bridge and catalyst of shared experiences across time and locations. Societal stigma towards HIV/AIDS works to sever these dynamic and powerful human connectivity by devaluing basic human respect and compassion. Society often labels people living with HIV/AIDS as other within communities and this population quickly become outcasts. Through this process, shame and guilt can be fostered and become increasingly hard to overcome if we are not effectively targeting and addressing mental illness within this population. Dr. Paddy Ssentongo, a researcher and epidemiology doctoral student stated that “there is an urgent need to prioritize mental health screening and care into all HIV testing and treatment settings.”[7] As a social worker within mental health, I really resonate with this statement. Targeting HIV testing and treatment settings can help clinicians to target people who may be suffering with trying to find reasons to stay in this world because the darkness they feel from society as a result of their diagnosis. Additionally, this population faces other risk factors like neurological changes, poverty, lack of access to care and advanced disease.[8] 
“How can I instill such hope, but be left with none of my own?
What if I could sing just one song and it might save somebody’s life?”[9]
When we shift our perspective of HIV/AIDS from an individual issue to community healing, we usher in hope that may have been lost with a positive diagnosis. We need to strengthen and revitalize our approach to HIV/AIDS treatment and prevention to include mental health screening. Effective patient centered care isn’t solely about the diagnosis and approaching it as such would greatly diminish our ability to make effective, long lasting changes when it comes to treatment as a whole. We need to incorporate more of the human component to HIV treatment and care because it is within that sphere that we get to learn about the lived experiences that are occurring. Again, remember that people are LIVING with HIV/AIDS, so we need to understand how the various aspects of their lives intersect with one another. This provides invaluable information that can useful in targeting mental health screening across areas like healthcare, poverty, childcare, employment, and education, just to name a few. 

Living with HIV/AIDS doesn’t need to become a dark and empty pathway that extinguishes the hope of a continued happy and fulfilled life. Modern medicine has changed the landscape of HIV treatment and care opening up the road of this population to live long and healthy lives. Now, in order to strengthen this approach to longevity, we need to remember our own humanity and incorporate that element of strength in order to give hope to those of us sitting in the dark.

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] Song Lyrics by City of Colour, “Hope for Now”.
[2] Cox, T. (2021). People living with HIV/AIDS have a significantly higher risk of suicide. Penn State News. Retrieved from: https://news.psu.edu/story/661753/2021/06/28/research/people-living-hivaids-have-significantly-higher-risk-suicide#.YOhQh_nmJ0Z.twitter.
[3] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.
[4] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.
[5] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.
[6] City of Colour. Hope for Now.
[7] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.
[8] Cox. People living with HIV/AIDS have a significantly higher risk of suicide.
[9] City of Colour. Hope for Now.

Thursday, July 15, 2021

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] 

Sudden Cardiac Death
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.