Reflections from an HIV Advocate's Journey: Jonathan J. Pena

By: Jonathan J. Pena, senior in social work, North Carolina State University

Eckhart Tolle once wrote, “Acceptance looks like a passive state, but in reality it brings something entirely new into this world. That peace, a subtle energy vibration, is consciousness.”

I have traveled down many roads, like countless others, that greeted me with familiar faces who welcomed, guided, and loved me. Over time, however, the lights that illuminated these stretches of road started to dim when the darkness in the crevices of my pain and self-doubt began to grow. I traveled many miles addicted to crystal meth, distain and shame over my HIV-positive diagnosis, and with nameless strangers as a lost soul because I was always traveling but never arriving.

Today with almost four years of sobriety and the acceptance of my HIV status, I still travel down roads but now they are filled with purpose, opportunity and advocacy. In the beginning, acceptance for me did feel like a “passive state” because it was something that I couldn’t immediately measure when I was expecting a more obvious guided marker of direction. I realized that there was a value in representing myself from the standpoint of where I was in life in that current moment, which was as a non-traditional student in NYC. I was enrolled in a speech class where I decided to raise awareness about the stigma surrounding the word “clean” and in the process disclosed my own status to my classmates and professor. I felt empowered, liberated and at peace. Shortly after, I attended my first ADAP Advocacy Association conference in 2015, which greatly expanded my understanding of the challenges that HIV-positive communities can face but it also exposed me to all of the wonderful people who are involved and in the trenches fighting for change.

My time in NYC came to an end and I found myself in Raleigh, North Carolina where I was accepted in North Carolina State University. Here my journey in HIV advocacy continues. Once accepted into NCSU, I changed my major from psychology to social work and became a member of the Professional Association of Social Workers in HIV/AIDS in 2017. Also in 2017, I wrote my first blog for the ADAP Advocacy Association titled “Finding Emotional & Physical Health in Sobriety” - which goes into more detail on my journey towards self-discovery. These stepping-stones lead me to an amazing summer internship in 2018, with the ADAP Advocacy Association, where I authored a white policy paper titled, “Improving Access to Care Among Formerly Incarcerated Populations with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)”. This experience was invaluable not only for the insight on how underserved this population is but also the enormous value and role that current information plays when agencies are striving to bridge the gap in accessibility while being innovative in their delivery process. So, where am I now and what have I learned?

I am senior and entering my last semester of my undergrad at NCSU. I am inline and applying for an advance standing Masters in Social Work program beginning summer of 2020. My acceptance journey has had a profound influence on my academics, how I navigate the world, and how I developed a deeper understanding of who I am. I am complicated, in all sense of the word because I am never just one thing and thus can never be defined by any singular narration. I’ve accepted this along with everything I have expressed, felt, and done but I have also grounded myself in a higher level of consciousness that guides me.  I am worth more so therefore I do more, for myself and in the near future for others in a greater capacity. There will always be a need for advocacy because I understand that its road is often paved with dim flickering lights and we as advocates, social service providers, and community healers accept the call to action that is pivotal in helping to keep those light on.



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.

FDA Approves New Injectable Naloxone

By: Marcus J. Hopkins, Policy Consultant

The U.S. Food & Drug Administration (FDA) has approved a new injectable form of naloxone hydrochloride – an antagonist used to reverse the effects of an opioid (House, 2019).
India-based Aurobindo Pharma, Ltd. received approval for its injectable naloxone in early November 2019 from the FDA at a time when certain areas of the U.S. – primarily those located in areas where opioid-related drug overdoses are high – are facing shortages of naloxone (Sharpless, 2019).

Photo Source: NPR

Injectable naloxone, as per FDA requirements, require a prescription for distribution in most states, although some states and pharmacies have suspended that requirement (Marsh, 2018). It is also more difficult for people to administer than the nasal spray version, Narcan, which retails at an average retail price of $140.48 (GoodRX, n.d.). The FDA did, however, approve a generic version of the nasal spray from Israel-based Teva Pharmaceutical Industries, Ltd. in May 2019 (Ducharme, 2019), although Teva has not yet announced their pricing on the generic, nor a street date for its release.

The U.S. continues to see annual increases in drug overdose deaths overwhelmingly driven by opioid-related overdose deaths, primarily heroin and fentanyl, a synthetic opioid drug that has increasingly been finding its way into supplies of heroin, counterfeit prescription drugs, and supplies of other illicit drugs such as methamphetamine. The states with the highest rates of drug overdose deaths – West Virginia, Ohio, Pennsylvania, and Kentucky in particular – have large swaths of the states where there is a convergence of opioid overdose deaths, Injection Drug Use (IDU), infectious disease spread via IDU, and a lack of easy access to medical and healthcare services.

As a result of the increasing rates and incidence of overdose deaths, states and municipalities have responded by authorizing (and in some cases, requiring) that state employees be trained and begin carrying naloxone in their places of employment, including local and state offices, schools, and state buildings. These requirements are put in place in anticipation that, given the widespread rate of opioid addiction, someone may overdose in these buildings at some time and require naloxone administration in an attempt to save their lives.

References:

• Ducharme, J. (2019, April 19). The FDA Just Approved the First Generic Nasal Spray to Reverse Opioid Overdoses. New York City, NY: Time USA, LLC.: Time: Health: Drugs. Retrieved from: https://time.com/5574107/fda-generic-naloxone-nasal-spray/
• GoodRx. (n.d.). Narcan. Santa Monica, CA: GoodRx. Retrieved from: https://www.goodrx.com/narcan
• House, D. W. (2019, November 06). FDA OKs Aurobindo's naloxone for opioid overdose. Ra’anana, Israel. Seeking Alpha: Healthcare. Retrieved from: https://seekingalpha.com/news/3515511-fda-oks-aurobindos-naloxone-opioid-overdos
• Marsh, T. (2018, June 04). Here’s How to Get Naloxone, the Opioid Overdose Antidote, Without a Prescription. Santa Monica, CA: GoodRx: Blog. Retrieved from: https://www.goodrx.com/blog/heres-how-to-get-naloxone-the-opioid-overdose-antidote-without-a-prescription
• Sharpless, N. E. (2019, September 20). Statement on continued efforts to increase availability of all forms of naloxone to help reduce opioid overdose deaths. Rockville, MD: U.S Food & Drug Administration: News & Events: FDA Newsroom: Press Announcements. Retrieved from: https://www.fda.gov/news-events/press-announcements/statement-continued-efforts-increase-availability-all-forms-naloxone-help-reduce-opioid-overdose

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.