A Rare Personal Appeal to My POZ Brothers & Sisters; Please Protect Yourself

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

For nearly 15 years, I've had the distinct honor of serving as the CEO of the ADAP Advocacy Association. The position has afforded me the opportunity to advocate for greater access to care and treatment for people living with HIV/AIDS, as well as to encourage patients to become stronger self-advocates, and also to mentor some new advocates along the way. And although it is a rare occurrence for me, today I'm making a personal appeal to my POZ brothers and sisters to protect themselves against Covid-19. Please get vaccinated, and boosted!

Over the weekend, and only after playing the "rona-dodge-ball" game for over two years, my luck finally ran out and I tested positive for Covid-19. Last year, I had received both series of the Pfizer–BioNTech Covid-19 vaccine, as well as the first booster shot. I did so to protect myself as an immunocompromised patient, but more importantly to protect my son, Sebastian, who is too young to be vaxx'd. In retrospect, it was the best thing that I could have done for both him and me. 

My ongoing recovery from Covid-19 has also been helped with a prescription for Merck's monoclonal antibody, called molnupiravir. That, and a lot of fluids and rest.

Although vaccines don't guarantee full protection against acquiring Covid-19, they most certainly do provide undeniable protection after testing positive. I have experienced 48-hours of severe Flu-like symptoms, but it could've been much worse if I had been unvaccinated.

Too many people living with HIV/AIDS remain unvaccinated, and it is concerning to me. We've witnessed enough needless suffering from this coronavirus, and far too many deaths. Please don't ignore the facts made available by the U.S. Centers for Disease Control & Prevention on the rates of Covid-19 cases, associated hospitalization, and deaths by vaccination status. The broader issue isn't about protecting you from SARS-CoV-2 infection, but rather what will happen if you do indeed get it. It is undeniable the full vaccine series and booster is very likely to keep you out of the hospital, and more importantly, out of the funeral home.

Photo Source: CDC

My personal appeal comes in response to recent troubling conversations about vaccination hesitancy; one was with an unvaccinated young, African-American male, and another with an unvaccinated middle-aged, white female. The former believed the Covid-19 vaccinations actually cause people to get the coronavirus, and not provide any protection. The latter argued the unvaccinated were actually faring better against Covid-19 than their vaccinated (and boosted) peers. Neither of these beliefs could be further from the truth, but they exist. Unfortunately, a lot of misinformation is fueled by certain cable news outlets, social media-fueled conspiracy theories, and ill-informed politicians with bad hair lusting over sound bites.

The intersection between the HIV/AIDS epidemic and the Covid-19 pandemic has become the new normal. A recent headline in Business Insider read, "Over the last four decades, HIV/AIDS has killed at least 700,000 Americans. COVID-19 has killed more in two years." We've previously been down this road, together. So let's learn from the past!

The science and technology behind the current vaccinations against Covid-19 are deeply rooted in the same life-saving therapies we rely on to keep us all healthy...and alive! Why not embrace the Covid-19 vaccination as an extension of your HIV-related care and treatment? Why not trust in the advent of the medical and treatment advances to keep you healthy? Why not take a leap of faith the same way we'd collectively do, if a cure for HIV is eventually discovered?

There could be numerous reasons why protecting yourself against Covid-19 is important. For me, especially as a single parent, it is my son. The mental health toll that this pandemic has placed on me cannot be understated with respect to him. I lay awake at night playing the what if game. If something happens to me, then who will care for him? If I test positive, then will I expose him to this terrible illness? If he gets sick, then will he end up in the pediatric intensive care unit? What I do know, getting that jab in my arm is my best line of defense.

In other words, our choices have consequences.

If you're HIV-positive and still unvaccinated, then please... please... please protect yourself by getting vaccinated against this potentially deadly virus. Talk to your physician. Talk to your pharmacist. Talk to your social worker. Talk to your clergy. Talk to your vaccinated peers. I invite you to email me and let's set-up a time to talk about why it is so important to protect yourself and the people important to you. You're important to me, and that's why I'm making this rare appeal.

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.

Living with HIV & Making Heads or Tails Over Covid-19 Vaccinations

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

The ongoing Covid-19 pandemic has been especially hard for people living with HIV/AIDS. Concerns over already being immunocompromised are only compounded by the social isolation from family, friends and colleagues. The economic and social impact has been profound for the HIV community.[1] For the long-term survivors among us, seeing Covid-19 wreak havoc brings back dark memories of the earliest days of the AIDS epidemic's fear, stigma and obituaries. Now forty years into one epidemic desperate for a cure (and vaccine), we've also witnessed the marvels of modern-day medicine with the advent of vaccines to protect against the novel coronavirus SARS-CoV2. Yet, too many people living with HIV/AIDS remain unvaccinated against Covid-19. While concerning for many of us, it is also important to understand the reasons behind their vaccine hesitancy. Doing so provides the best opportunity to educate and empower them.

What remains a definitive analysis on the intersection between HIV and Covid-19 is the summary published last year by the Kaiser Family Foundation, "Key Questions: HIV and Covid-19." According to the authors, "This analysis explores key questions around Covid-19 and HIV – what we know and what we are still learning."[2] Read it!

Photo Source: WAOW - ABC News 9

Among the reasons behind vaccine hesitation is fear of the unknown. Mistrust remains high in certain segments of the HIV community. Mistrust of the government. Mistrust of the pharmaceutical industry. Mistrust of the news media. And for good reason, because the HIV community has a long history of being dismissed, disparaged, and harmed by these institutions during the height of the AIDS crisis. The recent headlines blaming people living with HIV for variant development only furthers the distrust. Adding fuel to the fire is confusion over what to believe because sometimes the messaging offers conflicting conclusions. All of the science in the world, no matter how compelling is the data, might not be enough to sway the HIV community's vaccine hold-outs.

It is undeniable that Covid-19 has disproportionately impacted marginalized communities, including people living with HIV/AIDS. The University of Delaware found that among Delawareans living with HIV, "many reported a deep sense of isolation, declines in physical or mental health, increasing economic hardship and uneven access to health care." According to Tricia Wachtendorf, director of the University of Delaware-based Disaster Research Center, participants living with HIV were much more likely to use words like 'fear' or 'scared' when describing Covid-19, as opposed to 'anxious' or 'concerned" among the general population.[3]

The report findings shouldn't come as any surprise since people living with HIV more likely to get sick with, die from Covid-19. Prior to the Delta and Omicron variants, Penn State College of Medicine researchers had already sounded the alarm that people living with HIV should be prioritized to receive a Covid-19 vaccine. Their research concluded HIV increased the likelihood of Covid-19 infections by 24%, and a 78% higher risk of death.[4]

Yet, another study out of the University of California, San Francisco found that people with HIV had fewer — but more severe — SARS-CoV-2 infections than peers. That said, researchers suggested the lower infection rates could be driven by "greater caution and sheltering in place."[5]

Matthew A. Spinelli, MD, MAS, an assistant professor of medicine at the University of California, San Francisco summarized: “Although the data are mixed, people with HIV, particularly those at lower CD4 counts, are likely at a somewhat higher risk of severe Covid-19. Vaccination is an important step to protect from severe Covid-19.”[6]

The Centers for Disease Control & Prevention (CDC) has acknowledged that the effect of HIV infection on Covid-19 outcomes is unclear. The agency's own Morbidity and Mortality Weekly Report (MMWR) analyzed Covid-19 severity and Covid-19–associated deaths among hospitalized patients with HIV-infection in Zambia, which concluded: "HIV status alone was not significantly associated with severe Covid-19 at admission or during hospitalization or with Covid-19–associated death. However, among HIV-positive persons, those with severe HIV disease were more likely to develop severe Covid-19 and were at increased risk for Covid-19–associated death. Ensuring that persons maintain HIV disease control, including maintaining ART continuity and adherence, achieving viral suppression, and addressing and managing underlying medical conditions, could help reduce Covid-19–associated morbidity and mortality in sub-Saharan Africa."[7] 

Those findings were mirrored by a study by the All India Institute of Medical Sciences (AIIMS) in Delhi, which concluded people living with HIV/AIDS may be less susceptible to Covid-19. The AIIMS study indicates the seroprevalence of Covid-19 in people living with HIV/AIDS to be lower than the general population. However, researchers did caution that HIV-immunocompromised populations aren't necessarily at a lower risk for infections or hospitalizations.[8]

Photo Source: British HIV Association

"Puzzling" is a word coined by TheBody's Larry Buhl when he posed the question, "Could People Living With HIV Have Worse Outcomes From Covid-19, Even if Vaccinated?" Buhl's analysis does an excellent job at conceptualizing many of the concerns expressed by people living with HIV/AIDS who question the need for the jab.[9] "If I'm medication adherent and undetectable, then how can I be immunocompromised," is one of the statements we often hear from certain circles in the HIV community. What makes this article particularly useful is how Buhl tackles vaccine safety and efficacy.

What we have learned over the last year is that nothing is for certain, evidenced by one study suggesting the Covid-19 vaccination is as effective for people living with HIV as those without,[10] and yet another study results are showing that some people living with HIV have lower than expected antibody levels after receiving the Pfizer or Moderna Covid-19 vaccines.[11] As we continue to educate people living with HIV/AIDS about the novel coronavirus SARS-CoV2, it is important to keep individual perspective in mind. It is easy to see how some unvaccinated peers view the ongoing pandemic through the sense of six of one, half a dozen of the other.

Ongoing education centers on HIV-positive patients should have no fear of Covid-19 vaccinations. “Interaction between ARVs (antiretroviral drugs) and Covid-19 vaccines has also been non-reactive, therefore it does not cause any harm to the patients,” says Kire Stojkovski, MD, a doctor at the Farr Institute. “It is therefore recommended for everyone to get vaccinated. Those patients with advanced (matured) HIV infections should be given an extra jab to make sure that they are well safeguarded from Covid-19.”[12]

We contend that getting vaccinated against Covid-19 is the best option for the HIV community. In fact, it is why last year we launched the #YourVaccineIsWaiting public awareness campaign. But there is no doubt still too many people living with HIV/AIDS are trying to make heads or tails over getting the jab. In fact, evidence suggests that the vaccination rates among our HIV-positive peers reflects rates among the general population.[13] There is never a bad time to educate someone about the benefits of being vaccinated against this virus, which has already taken 842,141 (as of January 11th) souls from us in the United States, alone.

[1] Waterfield, K.C., Shah, G.H., Etheredge, G.D. et al. Consequences of COVID-19 crisis for persons with HIV: the impact of social determinants of health. BMC Public Health 21, 299 (2021). https://doi.org/10.1186/s12889-021-10296-9
[2] Dawson, L., Kates, J. (2021, May 20). Key Questions: HIV and COVID-19. Kaiser Family Foundation. Retrieved online at https://www.kff.org/coronavirus-covid-19/issue-brief/key-questions-hiv-and-covid-19/ 
[3] Miller, Beth (2021, May 21). Living with HIV during a global pandemic. Medical Xpress. Retrieved online at https://medicalxpress.com/news/2021-05-hiv-global-pandemic.html
[4] Cox, Tracy (2021, May 11). People living with HIV more likely to get sick with, die from COVID-19. Medical Xpress. Retrieved online at https://medicalxpress.com/news/2021-05-people-hiv-sick-die-covid-.html
[5] Dreisbach, Eamon N. (2021, May 9). People with HIV had fewer — but more severe — SARS-CoV-2 infections than peers. Healio. Retrieved online at https://www.healio.com/news/infectious-disease/20210506/people-with-hiv-had-fewer-but-more-severe-sarscov2-infections-than-peers?utm_medium=social&utm_source=twitter&utm_campaign=sociallinks 
[6] Dreisbach, Eamon N. (2021, May 9). People with HIV had fewer — but more severe — SARS-CoV-2 infections than peers. Healio. Retrieved online at https://www.healio.com/news/infectious-disease/20210506/people-with-hiv-had-fewer-but-more-severe-sarscov2-infections-than-peers?utm_medium=social&utm_source=twitter&utm_campaign=sociallinks 
[7] Chanda D, Minchella PA, Kampamba D, et al. COVID-19 Severity and COVID-19–Associated Deaths Among Hospitalized Patients with HIV Infection — Zambia, March–December 2020. MMWR Morb Mortal Wkly Rep 2021;70:807–810. DOI: http://dx.doi.org/10.15585/mmwr.mm7022a2external
[8] Pandey, Sahil (2021, June 30). People living with HIV/AIDS may be less susceptible to COVID: AIIMS study. Yahoo Finance. Retrieved online at https://ca.finance.yahoo.com/news/people-living-hiv-aids-may-113113395.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr
[9] Buhl, Larry (2021, July 6). Could People Living With HIV Have Worse Outcomes From COVID-19, Even if Vaccinated? The Body. Retrieved online at https://www.thebody.com/article/people-hiv-worse-outcomes-covid-19-vaccinated/?ic=700100 
[10] Cooper, Alex (2021, August 10). Study: COVID Vax as Effective for People With HIV as Those Without. Yahoo News. Retrieved online at https://news.yahoo.com/study-covid-vax-effective-people-183612408.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr
[11] Guerrero, Desirée (2021, November 3). Do COVID-19 Vaccines Work as Good for People Living with HIV? Yahoo News. Retrieved online at https://news.yahoo.com/covid-19-vaccines-good-people-161826829.html?soc_src=social-sh&soc_trk=tw&tsrc=twtr
[12] Loria, Keith (2022, January 11). HIV Patients Should Have No Fear of COVID-19 Vaccinations. Managed Healthcare Executive. Retrieved online at https://www.managedhealthcareexecutive.com/view/hiv-patients-should-have-no-fear-of-covid-19-vaccinations. 
[13] Melville, Nancy A. (2021, December 27). COVID-19 Vaccinations in People With HIV Reflect General Rates Despite Higher Mortality Risk, Study Says. Medscape. Retrieved online at https://www.medscape.com/viewarticle/965585 

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. 

Our Patient Advocacy during the Covid-19 Pandemic's Uncertainty

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

Over the last two years patient advocacy replaced face-to-face meetings with Zoom. It substituted highly-effective legislative fly-ins on Capitol Hill (and state legislatures) with unimpressive Twitter storms. And it left many organizations scrambling to find their place in this new world of uncertainty. The ADAP Advocacy Association isn't immune from the realities surrounding the Covid-19 pandemic, especially since we represent an immunocompromised constituency.

Photo Source: Hearts in Service Blog

In March 2020, we suspended face-to-face advocacy literally as we were preparing to host the year's first HIV/AIDS Fireside Chat in Atlanta, Georgia. Our organization opted not to host Zoom meetings because the Fireside Chats have a sense of intimacy about them, but also because we quickly learned that many stakeholders were experiencing what was labeled "Zoom fatigue" at the time. That decision carried into last year, too. Aside from a series of the virtual patient support meetings held both in 2020 and 2021, we've sat (in)patiently waiting for this pandemic to subside.

Fortunately, some of our national partners stepped-up their advocacy game and hosted extremely impressive virtual conferences. Among them, HealthHIV and its SYNChronicity 2020 (SYNC 2020), and the Biotechnology Innovation Organization (BIO) and its 2020 Patient and Health Advocacy Digital Summit. The ADAP Advocacy Association opted to fund scholarships for advocates and patients living with HIV/AIDS to attend these events. 

But we're optimistic about returning to 'normal' this year!

The ADAP Advocacy Association has targeted June 2022 for the resumption of the HIV/AIDS Fireside Chats, and other patient advocacy events. That will, of course, largely depend on the ever-changing circumstances on the ground, evidenced by what is unfolding before our eyes with the Omicron variant. It is our goal to host a Fireside Chat in Atlanta over the summer, and then Chicago in the fall.

In the meantime, we will continue to focus on the intersection between HIV/AIDS and Covid-19. In 2020, we awarded Covid-19 community grants to community-based, nonprofit organizations addressing the pandemic's impact on marginalized communities living with HIV/AIDS. In 2021, we launched #YourVaccineIsWaiting public awareness campaign targeting marginalized groups living with HIV/AIDS. This year, we will invest more of our resources into monitoring how Covid-19 is impacting our community, as well as encouraging immunocompromised populations to get vaccinated...and boosted! Their lives depend on it, literally.

Finally, we're excited to welcome our new ADAP Blog Guest Contributor, Ranier Simons, MHI. Ranier prides himself on data science capabilities to drive better healthcare. He recently earned his Master of Healthcare Innovation Health Informatics from Arizona State University - Edson College of Nursing and Health Innovation.

Patient advocacy, as we knew it, came to a screeching halt in March 2020. Then in 2021, patient advocacy experienced a roller coaster ride of ups and downs. It is too early to know what 2022 will bring, but the ADAP Advocacy Association remains optimistic about the future of the patient advocacy environment, and we stand ready to respond accordingly. We look forward to you joining us in this endeavor, too!

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.