My life among the unvaccinated

As a vaccinator, I have met many of the vaccine-hesitant personally. Their reasons are not what you think

Published September 18, 2021 10:00AM (EDT)

A sign displays the types of COVID-19 vaccination doses available at a Walgreens mobile bus clinic on June 25, 2021 in Los Angeles, California. The United States will miss President Joe Biden's goal of delivering at least one coronavirus vaccine dose to 70 percent of adults by the July 4th holiday. (Mario Tama/Getty Images)
A sign displays the types of COVID-19 vaccination doses available at a Walgreens mobile bus clinic on June 25, 2021 in Los Angeles, California. The United States will miss President Joe Biden's goal of delivering at least one coronavirus vaccine dose to 70 percent of adults by the July 4th holiday. (Mario Tama/Getty Images)

Up until a few weeks ago, when New York lifted its "COVID-19 state of disaster" emergency, I was volunteering as a COVID vaccinator at various FEMA sites across New York City. Knowing how vital our volunteer work was to ending the pandemic, my fellow vaccinators and I developed an esprit de corps, something that our (mostly) grateful patients likely sensed. Yet not every shift went smoothly.

Back in April, I was face-to-face with a patient  who, moments after going over the consent form, looked me in the eye and said, "I don't want to do this, I don't want to be the government's f**king guinea pig." She then rose from her chair and stormed out of the room, shaking her head. There was no more conversation to be had.

On a separate occasion, an undocumented construction worker politely declined the vaccine after we went over the possible list of post-injection side effects — mild fever, body aches, arm soreness (not unlike a flu shot) — that would go away in a few days. But he was an hourly wage worker, and a single dad; and thus the possibility of losing days meant losing valuable income which, he explained, was "just not an option for my kids and family right now." He also worried about the implications of vaccine records on his documentation status. "Would you trust the government if you were me?" he joked as he packed up his belongings.

In the broader public health and political arena, these individuals constitute "the unvaccinated." They formulate the class with whom, as President Biden recently said, "we've been patient. But our patience is wearing thin. And your refusal has cost all of us." They engender the bracket that Dr. Rochelle Walensky, the CDC's Director, alluded to when she said, "this is becoming a pandemic of the unvaccinated."

People undoubtedly harbor a certain stereotype about who those unvaccinated people are. But I discuss these specific patient encounters to illustrate that "the unvaccinated" class is not a monolith; that not every one of the roughly 80 million eligible-yet-unvaccinated Americans at the time of this writing is a science-defying, freedom-of-choice touting, faith enforcing anti-vaxxer. But at the end of the day, the virus does not discriminate based on reasons for vaccine hesitancy or refusal, and the outcome, unfortunately, is the same.

Recent data from hospitals across the country continue to confirm that it is the unvaccinated who harbor the virus longer; are more likely to transmit to others; have severe cases of the disease requiring hospitalization and intensive care; and are 11 times more likely to die of COVID-19. These outcomes can be prevented, or at least risk-mitigated, by a buffet of effective (and free) vaccine options. But while an increase in vaccination rates is the eventual goal and pretty much the only way of ending this pandemic, our latest public health strategy appears to have fixated on developing an aggressive vaccination roadmap alone. And where the power of persuasion has failed, vaccine mandates have been introduced.

Beyond vaccines, healthcare agencies have waffled back and forth between mask requirements, leaving the public distraught and confused. And there are only occasional mentions of safer socializing measures anymore, let alone innovating any new ideas or expanding the toolkit of non-vaccine–based COVID-19 prevention strategies. There is no plan B, so to speak, as we seem to have anchored every second of airtime on plan A alone: the vaccine.

Compared to April 2021, daily vaccination rates have significantly decelerated over the past several weeks, going from nearly 3.4 million shots per day to about 1.5 million — a greater than 50% reduction. As a result, the eligible-yet-unvaccinated cohort, comprising nearly 75-80 million people, has emerged to enter the political spotlight.

An imperfect dissection of unvaccinated people's motivations reveals some common themes around vaccine hesitancy. Safety and efficacy concerns as well as short- and long-term side effects — despite the FDA's full approval — continue to serve as significant deterrents to vaccine acceptance; many people have (mistakenly)latched on to the condensed timeline of vaccine development and emergency use authorization as red flags. Some of my patients have also alluded to holding perceptions of Operation Warp Speed as potentially bypassing safety measures for political and financial gain. Fundamental distrust in the government, as well as healthcare institutions, seem to further catalyze a strong resistance to accepting the vaccine — something I have repeatedly heard in outpatient clinics and the emergency room. And many people continue to feel that their likelihood of being exposed to the virus is extremely low — and often believe erroneously that the vaccine poses bigger risk to them than COVID-19 itself.

Demographic differences are also evident in who declines the COVID vaccine. For example, studies consistently show that Blacks and Hispanics are significantly more likely than white Americans to hesitate to get the shot, even though individuals from these racial and ethnic backgrounds have suffered significantly higher COVID-19–related morbidity and mortality rates. Likewise, there are stark geographic differences in vaccine hesitancy, with Southern states, the Great Plains and Alaska significantly trailing behind West coast and Northeastern states. Other factors like highest level of education attained and urban versus rural residence have also impacted disparities in vaccination rates.

While these vaccine misperceptions and uptake differences might appear surprising, they are not new. They mirror a pattern of slow pharmacotherapy adoption that public health experts, healthcare workers, activists and others have been grappling with and fighting for to curb another viral epidemic: pre-exposure prophylaxis (or PrEP) for HIV.

Approved by the FDA in 2012, PrEP — a once-daily pill with injectable formulations in the pipeline — is almost 100% effective in preventing HIV infection from sex and over 70% effective in preventing infections among people who inject drugs. And yet, over nine years out, less than 20% of nearly 1.1 million individuals who could benefit from PrEP are currently taking it. Additionally, only about 30% of PrEP users live in the South, even though over 50% of new HIV diagnoses each year are made in that region.

Compared to COVID-19 vaccines, there are certainly unique barriers to wider PrEP adoption. For example, the vaccine comprises one or two shots (with a possible third booster). In contrast, the logistics of taking PrEP once a day can dilute optimal adherence. As another example, access to PrEP has often come with a hefty price tag. In contrast, the vaccines are free. Importantly, many have reported taking PrEP for HIV prevention to be stigmatizing by peers as well as healthcare providers, associated, in part, with concerns around directly (or indirectly) revealing sexual and gender minority status. This is not a concern for COVID vaccines. And more fundamentally, a droplet infection like COVID-19 spreads much more rapidly and impacts millions more people than a sexually or parenterally transmitted infection like HIV.

However, there is remarkable similarity among reasons why people — including some of my own patients — decline to use PrEP and take the COVID-19 vaccine. Concerns around near term and long-term side effects abound. Both are complacent in their perceived low likelihood of contracting the viruses. Distrust in governments and medical institutions feed both cohorts. Even the racial and ethnic breakdowns are similar where studies show that Black and Hispanic people are much less likely to take PrEP—even though CDC studies in 2016 estimated that 1 in 2 black men who have sex with men (MSM) and 1 in 4 Latino MSM will be diagnosed with HIV during their lifetime.

The slow uptake of PrEP undercut its early promise to rapidly reduce the number of new HIV diagnoses — which could, in theory, bring new HIV infections to zero. It is the closest we have to an HIV vaccine; but it never became the singular strategy that everyone fixated on — being wary of and anticipating the many reasons people wouldn't want it.

Instead, the approach to curbing new HIV diagnoses continues to be flexible, community-tailored, and multi-pronged. While expanding PrEP access and adoption continues to be a priority for public health advocates and government programs such as Ending the HIV Epidemic in the US, other tools in the toolkit garner adequate emphasis including continued research and development in HIV vaccine and antiretroviral therapy, linking newly diagnosed people to care, having contingency management programs for medication adherence to maintain undetectable viral loads (which essentially makes the virus untransmissible), syringe services programs, continued emphasis on condom use with free access to condoms, as well as social services to avoid HIV infection in the first place.

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In a recent tweet, Dr. Oni Blackstock, primary care and HIV physician in New York City who is also the Founder and Executive Director of Health Justice, mirrored this sentiment when she wrote, "The same way that PrEP alone cannot end the HIV epidemic and we must use the full HIV prevention toolkit and address the structural drivers of HIV transmission, COVID19 vaccines won't be enough and we'll need to use the full toolkit of non-pharm interventions and address structural drivers."

Yet, the national strategy on the future of COVID containment appears to be vaccination alone — now inching toward the realm of mandates.

To be clear, there is no doubt that vaccines are serving their intended purpose of significantly reducing infectivity, disease severity, hospitalization, and death. Additionally, COVID vaccine mandates are also successfully serving their intended purpose of raising inoculation statistics—with the eventual goal of reaching herd immunity. For example, since the Pentagon announced in August 2021 its immunization requirement among active-duty military personnel, the percentage of military members with at least one COVID shot jumped from over 76% to nearly 83%. And vaccine mandates are certainly not a novel phenomenon, as exemplified by pre-K and K-12 schools requiring vaccination against several infectious diseases including hepatitis B, diphtheria, and polio.

At this point in the pandemic, however, vaccine mandates have spilled over from being merely a healthcare and safety issue to a polarizing, political fiasco. For those vehemently opposed, not only will mandates erode trust in government, but will likely exacerbate mistrust in science and medicine, impacting healthcare-seeking behaviors in the long term. Also, many people are already finding workarounds by going to healthcare professionals who are monetizing on vaccine or mask exemptions. Others still are accessing counterfeit vaccination cards. Numerous others — including many healthcare workers — are quitting their jobs, putting unsustainable strain on many workplaces. 

Anticipating the Biden administration's vaccine mandates, Dr. Uché Blackstock, Founder and CEO of Advancing Health Equity, recently tweeted, "We can't vaccinate our way out of a surge without implementing other mitigation measures. Vaccine mandates will help, but they won't be the solution, in the short-term, to ending this current surge, without additional loss of more lives." Some of those strategies, she suggests, include more structural elements such as "extending unemployment benefits and the eviction moratorium."

Beyond these, we need to continue research and development efforts to find COVID-19 prophylaxis medications and treatment options. We ought to revisit masking policies and improve access to testing. A simple policy change could be governments, employers or insurers covering the cost of at-home test kits to ensure frequent and accessible testing. We also need to engage community champions to continue conversations around the benefits of vaccination in a relatable, non-punitive way.

One of the biggest takeaways from the low — yet slowly up trending — PrEP adoption rates is that no matter how effective a therapy may be, people have different thresholds for accepting it in their lives. For this reason, HIV prevention efforts have been incredibly varied, providing different options to people with different risk tolerance levels. While HIV and COVID-19 are very different viruses, many of the lessons learned from HIV prevention efforts accumulating over the past 40 years can help inform community buy-in. And while the COVID-19 vaccine is undoubtedly lifesaving, we need many more culturally sensitive tools in the toolkit to successfully end this pandemic.

By Lala Tanmoy Das

Lala Tanmoy (Tom) Das is an MD-PhD student in New York City. Follow him on Twitter: @TanmoyDasLala.

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