Georgianna Stoukides, OMS-III, MA, highlights the similarities and differences between COVID-19 and HIV/AIDS—not only in the type of virus but also in how they are transmitted and who they most often affect—and the role stigmatization plays in treatment.
Georgianna Stoukides, OMS-III, MA | New York Institute of Technology College of Osteopathic Medicine
2022 Namey/Burnett Preventive Medicine Writing Award Submission
Sponsored by the ACOFP Foundation, with winners selected by the ACOFP Health & Wellness Committee, the Namey/Burnett Preventive Medicine Writing Award honors the memory of Joseph J. Namey, DO, FACOFP, and John H. Burnett, DO, FACOFP—dedicated advocates for osteopathic medicine—and recognizes the best preventive medicine blog posts submitted by osteopathic family medicine students and residents.
In April 2020, when the COVID-19 shock was beginning to settle in the United States, “For HIV Survivors, A Feeling of Weary Déjà Vu” by Jacob Bernstein, was published in the New York Times. The article examined actions to combat the COVID-19 pandemic in the United States through the eyes of HIV survivors and activists from the 1980s. Some important dissimilarities that the article explores between the two viral diseases are a) HIV was much harder to transmit than COVID-19 is, and b) HIV/AIDS mostly affected a specific subgroup of the population—primarily men who had sex with men and people who injected drugs—which has not been the case for the COVID-19 pandemic. In the article, David France, the director of the 2012 Oscar-nominated documentary on HIV/AIDS, “How to Survive a Plague,” said “Pandemics never hit fairly. While we now have what appears on its face to be a more democratic plaque that isn’t confined mostly to a despised population, it has still been most heavily concentrated in the major urban areas, in neighborhoods that are filled with people who are not rich and are often Black or Brown.”1
When Bernstein’s 2020 article was published, a COVID-19 vaccine had not been developed yet. Soon enough, within one year of the beginning of the COVID-19 pandemic, the U.S. Food and Drug Administration (FDA) approved a vaccine for vulnerable populations, including older adults, people with underlying conditions, first responders and healthcare providers. The importance of COVID-19 vaccination now cannot be emphasized enough, as new COVID-19 variants arise and U.S. hospitals see yet another surge in COVID-19 infection and hospitalization rates within the unvaccinated, who face a significantly higher risk of morbidity and mortality. For HIV/AIDS, there has not been an FDA-approved vaccine yet. The HIV community relied on community organizations and efforts such as harm reduction practices and political activism, including the AIDS Coalition to Unleash Power (ACT UP), to secure their protection and safety. Combined anti-retroviral (ARV) therapy, the first drug treatment that prevented the progression of an HIV diagnosis to AIDS and significantly improved the survival of people living with HIV was approved by the FDA in 1997—about 15 years after the HIV/AIDS epidemic started.2
Despite any similarities between COVID-19 and HIV, each viral condition is unique not only in how each is transmitted or how each affects the human body, but also in the ways that each virus impacts communities. The unpleasant feeling of a “weary déjà vu” among HIV survivors during the current pandemic holds a unique significance, highlighting how cultural, social and economic efforts to combat a viral outbreak have changed or not changed.
Both viruses seem to have affected historically disenfranchised populations in the US. In the beginning of the COVID-19 pandemic, Black, Latinx and Native American populations were most severely impacted.3–5 This has still been the case; COVID-19 infection rates, hospitalization rates and death rates are higher among these communities than among white, non-Hispanic people.6 During the beginning of the HIV epidemic, men who have sex with men (MSM) had the highest rates of HIV infection and death by AIDS, and gradually, Black and Latinx MSM have had the highest rates of HIV infection. With the shock of COVID-19 that has recently changed the way we go about our lives, that has especially shaken vulnerable communities and unveiled much of the systemic discrimination and racism at the root of healthcare access, we must reprioritize prevention as a key for meeting the social and medical needs of communities most at risk.
According to the most recent HIV National Surveillance Report by the U.S. Centers for Disease Control and Prevention (CDC), 1,189,700 million people aged 13 years and older were living with HIV in the United States by 2019, and 36,801 people received an HIV diagnosis in that year.7 By 2019, the highest number of new HIV infections was attributed to MSM aged 25–34 years old, accounting for 69% of new HIV infections in 2019 alone.7,8 Among MSM, new HIV diagnoses were highest among Black MSM and Latinx MSM, compared to white MSM. In 2019, Black and Latinx MSM had lower rates of receiving HIV medical care, lower rates of retention in HIV care and lower rates of maintaining viral suppression compared to their white counterparts.8
Perhaps the most widely known medical HIV prevention strategy is Pre-Exposure Prophylaxis (PrEP). PrEP is a daily oral medication for people who are uninfected that can prevent HIV transmission through common routes including sex and injection drug use. PrEP was approved by the FDA in 2012, about 31 years after the HIV epidemic began in the United States in 1981.9 PrEP is undoubtedly beneficial and effective. Since PrEP was introduced to the field of HIV, the number of new HIV infections has indeed decreased. However, HIV infection has been decreasing among white MSM at a much higher rate than any other racial group.10 According to the CDC, PrEP coverage was much higher among white MSM, compared to Latinx or Black MSM.8 In another report, fewer Black MSM and Latinx MSM had awareness of PrEP, had discussed its use with their providers or had used PrEP in their lifetime, compared to white MSM.11 In short, racial disparities in the PrEP continuum—including awareness and uptake—are persistent.
To better understand the disparities in PrEP use and HIV prevention, recent studies have focused on examining the behavioral attitudes and the use of PrEP among Black and Latinx MSM. On an individual level, Black and Latinx MSM seem to have increased concerns about side effects of PrEP and have associated PrEP with perceived HIV-related stigma.12 In a study focused on PrEP perceptions among Latinx MSM, a majority of participants cited that the use of PrEP would stigmatize them as gay and as “promiscuous,” while among Black MSM in a different study, the majority of participants feared that being on PrEP would allow for presumptions that they are “promiscuous and risky.”12,13 In the latter study, one participant said that PrEP “can increase the stigma that we already have out here. It gives [doctors] the opportunity to add on some additional concerns that are gonna be lumped into the whole stigma bowl.”13
In a recent review focusing on PrEP stigma as a driver of disparity in HIV prevention, one sentence can summarize the nature of stigmatization associated with PrEP use: “At its root, HIV stigma stems from the assumption that HIV-positive individuals contracted the virus as a result of socially unacceptable behavior, i.e., promiscuity or injection drug use.”14 This label of “promiscuity” that has been attached to PrEP use is a stigmatization of non-heterosexual behaviors and of behaviors historically viewed as not socially acceptable. As PrEP is related to HIV infection, which has historically been tied with being gay or injecting drugs, associating preventative strategies with a condition so heavily stigmatized, ultimately stigmatizes PrEP itself.15 This creates a cycle where the communities most discriminated against—either due to their race or their sexual orientation—have the lowest uptake of preventative medicine, including PrEP.
This intersectional stigmatization, which can be viewed as an individual-based barrier, is tied with the mistrust embedded in patient-provider relationships among MSM of color, which is ultimately another barrier to PrEP uptake and HIV prevention. In a recent study, only 35% of primary care providers (PCPs) offered routine HIV testing, and upon patient request, only 81% of PCPs agreed to provide the testing services.16 In other research, PCPs demonstrated lack of knowledge in PrEP compared to HIV specialists, while also demonstrating racial bias when considering if a patient is eligible for PrEP.17–19 Experiences of medical mistreatment and discrimination from their physicians ultimately affects how often and to what level Black and Latinx MSM interact with the healthcare system at all. In a study referenced previously, after a Black patient who has sex with men had a negative experience with a healthcare provider regarding PrEP, he said “I really, to be honest, I don’t know if I’ve been to the doctor since.”
Medical mistrust among Black and Latinx MSM and their providers is intricately tied with systemic medical mistrust on a larger scale. Black and Latinx MSM have demonstrated fear associated with PrEP use and medical experimentation, citing mistrust in the government and health care.12,20 The history of medical experimentation and racist medical intervention among Black and Latinx communities in the United States has paved the way for medical mistrust to persist,21,22 making it much more difficult for national and state initiatives on PrEP to reach the communities most heavily burdened by HIV infection.
We have come a long way. In the 1980s, an HIV diagnosis was a death sentence for anyone infected. In the 21st century, medical advancements for HIV prevention have been successful. In 2012, PrEP was introduced as an effective HIV prevention strategy. In the same year, post-exposure prophylaxis (PEP) was approved by the FDA as a 28-day medication and emergency treatment for people who may have been exposed to HIV.23 By 2014, it was proven that HIV medication adherence can help someone living with HIV reach an undetectable viral load (below 200 viral copies/ mL), and prevent the transmission of HIV through sex or injection drug use, a concept termed as undetectable = untransmittable (U=U).24 In December 2021, the first long-acting injection drug to prevent HIV infection was approved by the FDA, giving an alternative to people seeking HIV prevention medication without taking a pill every day.25 Yet, the stigmatization of HIV and AIDS—attributed to the racist response and societal disapproval of homosexuality and drug use in the beginning of the HIV epidemic—is still here, impacting the way Black and Latinx MSM interact with the healthcare system and with preventative care. These systems of oppression and discrimination ultimately impact who is most at-risk for HIV infection and who is least likely to engage with preventative strategies already in place.
On a positive note, more and more, the medical community is realizing and examining the pervasiveness of these systemic barriers to HIV care, and how communities of color are most impacted by them. HIV prevention and treatment are being integrated in primary care practices, PrEP is more openly discussed both in medical and social settings—including film, television and social media—and community initiatives such as harm reduction centers are continuing their valuable work. In the meantime, race, racism, healthcare disparities and health equity are also being more widely discussed, again both in research and medicine, as well as in social settings.
The COVID-19 pandemic has further highlighted systemic barriers to achieving health and wellness that have been persistent throughout the HIV epidemic in the United States. The recent pandemic has drawn attention to systemic barriers to medical care, education, food and housing for Black and Latinx individuals, while also showcasing the medical mistrust surrounding vaccines and preventative care within these communities.18 The intergenerational and intersectional stigmatization and discrimination has been awakening a “weary feeling of déjà vu,” not only among survivors of the HIV epidemic but also among individuals who have been experiencing discrimination in the United States in general. Perhaps we can learn how to achieve COVID-19 protection for communities historically disenfranchised by continuing to critically examine the various approaches to HIV prevention and the community-centered interventions in place. Additionally, we can examine and reflect on the successes and obstacles to COVID-19 prevention and the current perceptions about preventative medicine and medical mistrust in order to address the continuing inequities in HIV prevention.
It is our duty as providers to be agents of change—to provide comprehensive support and preventative care for our patients while fostering agency and autonomy. It is our duty to continue to examine systems of oppression perpetuated through medicine, the impact of racism and discrimination beyond the doors of our clinics and into each aspect of community access to health and wellness. We must continually re-examine our own biases in the cultures we have each grown up in and address these biases by working to better understand and dismantle structural barriers to health for historically marginalized communities. We must each work to create change both on an individual level and in public policy, improving our experiences with each patient individually for the wellbeing of the community as a whole. As doctors, let us not allow for any other condition or disease to disproportionally plague and stigmatize our communities.
- Bernstein J. For HIV survivors, a feeling of weary Déjà Vu. The New York Times. https://www.nytimes.com/2020/04/08/style/coronavirus- hiv.html?fbclid=IwAR3nCWxTu5EZ_Dlb_B-oX0V-
7SFnLuPixz6nAnZWD7PL dc_aGXof3f-Bs. Published April 8, 2020. Accessed December 30, 2021.
- Watson S. The History of HIV Treatment: Antiretroviral Therapy and More. WebMD. http://www.webmd.com/hiv-aids/hiv-treatment-history. Published June 9, 2020. Accessed December 29, 2021.
- Romano SD, Blackstock AJ, Taylor EV, et al. Trends in Racial and Ethnic Disparities in COVID-19 Hospitalizations, by Region — United States, March–December 2020. MMWR Morb Mortal Wkly Rep. 2021;70:560–565. doi:10.15585/mmwr.mm7015e2
- Mude W, Oguoma VM, Nyanhanda T, Mwanri L, Njue C. Racial disparities in COVID-19 pandemic cases, hospitalisations, and deaths: A systematic review and meta-analysis. J Glob Health. 2021;11:05015. Published 2021 Jun 26. doi:10.7189/jogh.11.05015
- Webb Hooper M, Nápoles AM, Pérez-Stable EJ. COVID-19 and Racial/Ethnic Disparities. JAMA Network. June 2020;323(24):2466–2467. doi:10.1001/jama.2020.8598
- Excess Deaths Associated with COVID-19. Centers for Disease Control and Prevention. http://www.cdc.gov/nchs/nvss/vsrr/covid19/excess_deaths.htm . Accessed December 29, 2021.
- Centers for Disease Control and Prevention. HIV Surveillance Report, 2019; vol.32. https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-32/index.html. Published May 2021. Accessed December 29, 2021.
- Centers for Disease Control and Prevention. Monitoring selected national HIV prevention and care objectives by using HIV surveillance data—United States and 6 dependent areas, 2019. HIV Surveillance Supplemental Report 2021;26(No. 2). https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-26-no-2/index.html. Published May 2021. Accessed December 29, 2021.
- Tanner MR, Miele P, Carter W, et al. Preexposure Prophylaxis for Prevention of HIV Acquisition Among Adolescents: Clinical Considerations, 2020. MMWR Recomm Rep. 2020;69(No. RR-3):1–12. doi:10.15585/mmwr.rr6903a1
- Highleyman L. PrEP use linked to fewer new HIV infections in US states | aidsmap. AIDS Map. http://www.aidsmap.com/news/jul-2018/prep-use-linked-fewer-new-hiv-infections-us- states. Published July 26, 2018. Accessed December 29, 2021.
- Kanny D, Jeffries WL 4th, Chapin-Bardales J, et al. Racial/ethnic disparities in HIV preexposure prophylaxis among men who have sex with men – 23 Urban Areas, 2017. MMWR Morb Mortal Wkly Rep. 2019;68(37):801–806. doi:10.15585/mmwr.mm6837a2
- García M, Harris AL. PrEP awareness and decision-making for Latino MSM in San Antonio, Texas. PLOS ONE. 2017;12(9). doi:10.1371/journal.pone.0184014
- Quinn K, Dickson-Gomez J, Zarwell M, et al. A gay man and a doctor are just like, a recipe for destruction: How racism and homonegativity in healthcare settings influence PrEP uptake among young Black MSM. AIDS and Behavior. 2019;23(7):1951–1963. doi:10.1007/s10461-018-2375-z
- Golub SA. PrEP stigma: Implicit and explicit drivers of disparity. Current HIV/AIDS Reports. 2018;15(2):190-197. doi:10.1007/s11904-018-0385-0
- Haire BG. Preexposure prophylaxis-related stigma: strategies to improve uptake and adherence – a narrative review. HIV AIDS (Auckl). 2015;7:241–249. doi:10.2147/HIV.S72419
- Smith DK, Mendoza MCB, Stryker JE, Rose CE. PrEP awareness and attitudes in a national survey of primary care clinicians in the United States, 2009–2015. PLOS ONE. 2016;11(6). doi:10.1371/journal.pone.0156592
- Bonacci RA, Smith DK, Ojikutu BO. Toward greater pre-exposure prophylaxis equity: Increasing provision and uptake for Black and Hispanic/Latino individuals in the
U.S. Am J Prev Med. 2021;61(5):60-70. doi:10.1016/j.amepre.2021.05.027
- Blumenthal J, Jain S, Krakower D, et al. Knowledge is power! Increased provider knowledge scores regarding pre-exposure prophylaxis (PrEP) are associated with higher rates of PrEP prescription and future intent to prescribe PrEP. AIDS Behav. 2015;19(5):802–810. doi:10.1007/s10461-015-0996-z
- Calabrese SK, Earnshaw VA, Underhill K, Hansen NB, Dovidio JF. The impact of patient race on clinical decisions related to prescribing HIV pre-exposure prophylaxis (PrEP): Assumptions about sexual risk compensation and implications for access. AIDS Behav. 2014;18(2):226–240. doi:10.1007/s10461-013-0675-x
- Heller J. Rumors and realities: Making sense of HIV/AIDS conspiracy narratives and contemporary legends. Am J Public Health. 2015;105(1):e43–e50. doi:10.2105/AJPH.2014.302284
- Nuriddin A, Mooney G, White AIR. Reckoning with histories of medical racism and violence in the USA. Lancet. 2020;396(10256):949-951. doi:10.1016/S0140- 6736(20)32032-8
- Suite DH, La Bril R, Primm A, Harrison-Ross P. Beyond misdiagnosis, misunderstanding and mistrust: relevance of the historical perspective in the medical and mental health treatment of people of color. J Natl Med Assoc. 2007;99(8):879–885.
- Post-Exposure Prophylaxis (PEP) | NIH. HIV Info NIH. hivinfo.nih.gov/understanding-hiv/fact-sheets/post-exposure-prophylaxis-pep. Published August 19, 2021. Accessed December 29, 2021.
- Cairns G. No one with an undetectable viral load, gay or heterosexual, transmits HIV in first two years of partner study. aidsmap.com. https://www.aidsmap.com/news/mar-2014/no-
one-undetectable-viral-load-gay-or-heterosexual-transmits-hiv-first-two-years. Published March 4, 2014. Accessed December 30, 2021.
- Preidt R, Foster R. FDA approves first injection regimen for HIV prevention. WebMD. https://www.webmd.com/hiv-aids/news/20211221/fda-approves-first-injection-regimen-for- hiv-prevention. Published December 21, 2021. Accessed December 30, 2021.