Think of a play before the actors take the stage, with all the props set up as needed for the action to come. In many ways, Part I of this volume is that stage for much of what is discussed later in the book. The chapters in this part all consider the state of the US health care system as the COVID-19 pandemic started in spring 2020. Which structural factors helped shape the pandemic? Who were uniquely vulnerable to this novel virus? Which policy and regulatory choices played a role in how we first experienced the pandemic?

Understanding the structural stage-setting is important because it can reveal important lessons for how to build pandemic resiliency, either to the current COVID-19 pandemic or to the next infectious disease epidemic. To stretch the metaphor of a stage, Part I seeks to determine if we have the right props for the actors to use or if we need to redo our stage in light of past performances.

The first three chapters of Part I focus on the experience of stakeholders in the health care system, particularly health care workers, as the pandemic begins. In Chapter 1, “COVID-19 and Clinical Ethics: Reflections on New York’s 2020 Spring Surge,” Dr. Joseph Fins provides a firsthand account of a physician’s experience in New York City during the early days of the pandemic. He calls this contribution a “living history,” reminding us not to forget the lessons of the early days by overfocusing on post hoc analysis. Dr. Fins reminds us of the 7:00 pm clapping for health care heroes and hospital systems overrun with patients, a medical setting forced to innovate and create pop-up intensive care units. Dr. Fins’s chapter was deliberately placed first in this volume to encourage readers to recall their experiences in spring 2020. But Dr. Fins also reflects on steps we can take to improve our pandemic response.

In Chapter 2, “Patients First, Public Health Last,” Richard Saver helps contextualize the ethical considerations and challenges that physicians faced during those first days. Saver argues that physicians have been taught to put their patients first, and that ends up deprioritizing public health needs. Our legal system and medical norms, he notes, further enforce patient primacy over the collective good. Physicians are taught that their strong ethical obligations are to the patients sitting in front of them and are then cautioned that they may face legal consequences if they fail to fulfill such obligations. The focus on patient primacy is particularly ill suited to an infectious disease pandemic, and Saver argues that we need to better reconcile clinical ethics, especially as practiced, with public health ethics and to reintegrate the private physician into the public health system. Saver’s work helps give the reader context for many of the choices made by individual health care providers and organizations.

In Chapter 3, “Risk, Responsibility, Resilience, Respect: COVID-19 and the Protection of Health Care Workers,” Dr. William Sage and Victoria Tiase also contribute a firsthand account of the COVID-19 experience for health care workers in New York City. They note that “[t]he COVID-19 pandemic has shown us that the health care system we thought we had is not the health care system we actually have.” Dr. Sage and Tiase compellingly illustrate how the vulnerabilities of patients and providers during the COVID-19 pandemic were two sides of a single coin. Without stronger labor protections for health care workers, especially nurses working in hospitals, patients run the risk of receiving inadequate care or not receiving any care at all. This was particularly salient during the first stages of the COVID-19 pandemic and continues to be true in subsequent years. Dr. Sage and Tiase urge reforms to better engage and support the health care workforce.

In Chapter 4, “Post-Truth Won’t Set Us Free: Health Law, Patient Autonomy, and the Rise of the Infodemic,” Wendy Parmet and Jeremy Paul pull the focus away from health care workers and shift it to the patient side of the equation. They dissect the “post-truth” problem we face, with rampant misinformation with respect to COVID-19 clogging social media and other venues. They then place this “post-truth” problem in the context of informed consent. While informed consent is an important legal and bioethical development, overemphasizing individual choice can lead to the erosion of professional expertise. Parmet and Paul urge bioethicists and health law scholars to consider the role that these fields may have played in nurturing the seeds of “post-truth,” opening the door to the rejection of vaccines and the embrace of ivermectin.

In Chapter 5, “Individual and Structural Factors that Fueled COVID-19 Disparities,” Sadia Coreas, Erik Rodriquez, and Dr. Eliseo Pérez-Stable focus on unpacking the structural factors that led to a dramatic disproportionate burden of COVID-19 illness among people of color. These factors, such as crowded, urban housing and a reliance on public transportation, contributed to a heightened risk of infection among these communities. Similar factors, including greater prevalence of preexisting conditions such as hypertension and severe obesity, likewise contributed to worse outcomes among Black and Latino COVID-19 patients as compared to Whites. They end their chapter by reminding the reader that these structural factors persist, contributing further to significant health disparities, both related to COVID-19 and not.

So what is set on the stage as we begin our tragic play? As our first three chapters argue, there are many policy and regulatory choices that shaped the health care workforce’s initial experience with COVID-19. Professional norms, ethical obligations, and legal responsibilities created devastating vulnerabilities that were exploited by the pandemic. Also on stage is a society-wide turn toward “post-truth” that made individuals vulnerable to misinformation regarding the pandemic. Lastly, we have on the stage health disparities fueled by the social determinants of health, making certain communities more vulnerable to the pandemic.

Collectively, we see a stage that is ill equipped for what lies ahead. All of this stage-setting is important for the reader to remember as they read on in the book and consider how we could better respond to COVID-19 or to the next pandemic.

I Living History

Kierkegaard famously said life is lived forwards and understood backwards.Footnote ¹ What is true for life is also true for pandemics and it is tempting to look at the dawning days of COVID-19 through the prism of reflection. But to do so would be to lose the lived experience of those who had to make fraught choices during the initial surge of the pandemic. What happened during March and April of 2020 should not be obscured by a post hoc analysis informed by what we learned about the SARS-COV-2 virus or about ourselves since those early days. That early history, unsanitized as it was, is essential to framing subsequent discourse. As an academic physician charged with coordinating a clinical ethics service at a major academic medical center during the spring surge in New York City, I can attest that what happened during the spring of 2020 in the city bears remembrance, not only to honor those who served – and died – but, just as importantly, to inform clinical care and public policy. Those lessons were hard-won and it would be unfortunate to lose them through the gauzy haze of memory.

II Hometown Heroes

A daily ritual evolved that spring when New Yorkers came to the street each night to cheer, and revere, their health care heroes.Footnote ² At 7:00 pm, people would gather on their fire escapes and street corners to clap, clang cow bells, and otherwise cheer for those toiling away in the hospitals. Nietzsche might have viewed it as the bread and circuses moment of the pandemic.Footnote ³ New Yorkers wanted to express their gratitude. But they also needed to do so. They were scared and frightened and viewing health care workers as heroic made them feel better, more secure. Having said this, not a single one of my colleagues felt we were deserving of the adulation. Clinical failure, with which we were unaccustomed, had become the norm in our intensive care units (ICUs), both the regular kind and the pop-up variety that took care of the overflow of patients. During the weeks of March 22 through April 4, the weekly percentage of hospitalized New York City patients who subsequently died peaked (mean = 36.4 percent; range = 33.5 to 38.2 percent).Footnote ⁴ With these numbers, we did not feel like heroes.

We did not feel deserving, but the public needed to believe in us and those we represented because they had to believe in something. Civil society was in a state of chaos. The stores were bare, the supply chain broken. People were suddenly dying. But all would be well because they put their faith in their superheroes, who would rise up, rescue, and save them. Except we could not back then, although we tried. And some died – trying.

It was a valiant effort. In addition to meeting a novel disease head on, which reduced the most skilled clinicians to novice practitioners, they were charged with making triage decisions because we did not have adequate supplies – of, for example, personal protective equipment (PPE), drugs, and ventilators – and operated without crisis standards of care, which New York State failed to invoke. This placed clinicians under untenable stress.

One needs a tragedy to have heroes, and the situation was tragic for those who were lost, their families and loved ones, as well as the clinicians who were placed in a position where they had to do more than act as professionals. Professionalism should have been enough of an expectation; heroism was a bridge too far.Footnote ⁵ It was one that ultimately collapsed, both in how society came to view the doctors and nurses who stepped up, and in the mental health sequelae of the pandemic, what Victor Dzau, the president of the National Academy of Medicine, has described as its own epidemic.Footnote ⁶

So much of the tragedy we were grappling with in New York could have been avoided. Others have written about the Trump Administration’s downsizing of pandemic surveillance as a national security issue and the pulling of observers from Wuhan, China, the presumptive ground zero of the pandemic.Footnote ⁷ But on a much more local level, hospitals suffered from the failure of New York State to promulgate crisis standards of care in response to the pandemic. It became clear that this failure was an abdication of governmental responsibility and of the state’s obligation to protect its citizenry.

III Antecedents and the Surge

New York had a huge head start on disaster planning. As far back as 2007, the New York Task Force on Life and the Law, on which I serve, began deliberating the question of ventilator allocation in the context of an Avian flu pandemic.Footnote ⁸ Ultimately, the Task Force issued a final report in 2015 delineating a ventilator allocation guideline. It was one we never hoped we would use, and it was written with a hefty dose of denial,Footnote ⁹ but we did write it all the same.

At the heart of the plan was the Sequential Organ Failure Assessment (SOFA) score, a methodology originally designed to physiologically assess a patient’s need for ventilatory support if ill from influenza and to predict their short-term survival from that infection by tracking the functional status of several organ systems.Footnote ¹⁰ The triage process would be put into place once public health authorities declared a public health emergency and invoked crisis standards of care.Footnote ¹¹ In New York this would be declared by the governor. Crisis standards of care would replace the “usual” standard of care with one that was “sufficient” given the circumstances.Footnote ¹² But these guidelines were never put in place and, as a result, in March 2020, individual hospitals had to make determinations about the allocation of scarce resources without government guidance.

This lack of government action compounded our worst fears about the depth of the pandemic. The most elite academic health care systems were overwhelmed by the flood of patients who were desperately ill and in need of intensive care. In those dark days, even the most skilled practitioner became a student. We all became novices, grappling with a new disease we did not understand. The practice of medicine, which is so dependent upon time, was for a spell, atemporal.Footnote ¹³ It is worth recalling that even the most basic temporal dimensions of the virus, such as its period of incubation, duration of quarantine, and time course of treatments, were unknown. Collectively we were at sea. Practicing medicine without a clock is much like sailing without a compass. We were lost and striving to find our way.

To add to these challenges was the urgent redeployment of clinicians to meet staffing needs. Under normal circumstances, ICUs are run by pulmonology and critical care medicine attendings, their fellows and residents on rotation. To respond to the pandemic, doctors all over the hospital were reassigned to unfamiliar venues. Hospitalists, who provide in-patient care on medical services, worked in the ICUs as pediatricians backfilled on the medical services.

Psychiatrists handled phone consults for the sick and worried, and wondered if they had COVID-19 and should be tested. It was unfamiliar terrain for even the most experienced of practitioners.

The need was staggering. At New York Presbyterian Weill Cornell Medical Center between March 16 and May 10, 2020, we had 1,550 COVID-19 admissions and we increased our ICU capacity from 100 to 230 beds. Our colleagues at New York Presbyterian Columbia University Medical Center had 2,000 COVID-19 admissions and went from 117 to 300 ICU beds during the same period.Footnote ¹⁴

But these numbers do not adequately convey the tragedy of individual narratives. In my role chairing our hospital’s ethics committee, I recall a case of a patient who was nearing death from respiratory failure.Footnote ¹⁵ Her closest relative, a sibling, was approached about consenting to a do-not-resuscitate (DNR) order given the likely futility of resuscitation should she have a cardiac arrest. The ethics consult service was called when the clinical team encountered resistance. When our service became involved and elucidated the facts of the case, we found the reason for the sibling’s reluctance: another family member had passed away earlier in the day from COVID-19. It was just too much.

While this vignette was an outlier, it spoke to the burden of illness and tragedy experienced by clinical staff. Elsewhere, I analogized the onslaught of patients to a plane crash at LaGuardia Airport, except that the influx of patients continued for weeks on end.Footnote ¹⁶ Hospitals across the city had to deal with a scarcity of medical personnel and material, notably PPE and ventilators. People wore single-use/disposable N95 masks for weeks on end. A nurse at Mt. Sinai Hospital was seen in a New York Post photograph wearing a garbage bag for protection.Footnote ¹⁷ That was the practice in many institutions. Unprepared for the onslaught, we had to improvise.

These shortages were the product of a just-in-time approach in which the presumption is that when there is a surge in need, resources will be readily available from the supply chain. This is cost-effective during normal times and avoids having to expend resources on supplies that sit unused in inventory. Some of these items may have a time-limited shelf-life, so having excess inventory represents a potential fiscal loss. A just-in-time approach works when there are isolated pockets of need and resources can be obtained expeditiously. It fails miserably when there is a sustained and systemic stressor or when the supply chain breaks. In response to the inadequacies of a just-in-time supply chain, hospitals are migrating to a just-in-case approach, which stockpiles resources and enhances staff preparedness training and readiness.Footnote ¹⁸

But that would be a lesson from the pandemic. During the spring of 2020, we had to innovate to survive. To that end, hospitals created new ICUs out of thin air. Elective surgeries were canceled. Operating rooms were redeployed to provide ICU care and ventilators were reconfigured to provide support to two patients at a time.Footnote ¹⁹ Pop-up ICUs were built in hospital lobbies and football fields.Footnote ²⁰ Parks were converted to field hospitals as the USS Comfort,Footnote ²¹ the Navy’s hospital ship, made port in New York Harbor.Footnote ²²

All of this was done to provide care to an explosive volume of patients who had a novel disease that we did not yet fully understand. In those early days, we had no effective therapies. We were treating patients empirically with pharmaceutical agents that would not be found to be efficacious (hydroxychloroquine and convalescent serum). In the beginning, we eschewed high-dose steroids, which were later found to be effective and a true game changer with respect to mortality.Footnote ²³ We were months away from monoclonal antibodies, much less the miraculous mRNA vaccines that would hold so much promise.Footnote ²⁴

At one point in our institution, we were down to three days of dialysis fluid because so many patients with COVID-19 developed renal failure when critically ill. This was wholly unexpected since COVID-19 was initially believed to be a respiratory disease. We soon learned that COVID-19 also caused vasculitis and renal failure. This epidemic of kidney disease within the broader pandemic quickly led to a shortage of available supplies of dialysate, a problem that first manifested itself institutionally when the Renal Service asked for an ethics consult. They wanted guidance about who should get dialyzed for kidney failure and the quality of that intervention given the short supplies.

This type of question was new for ethics consultation. Unlike a traditional Clinical Ethics Consultation, which centers around the care of individual patients, this question required us to think about groups of patients who would receive care on a particular unit or clinical service. Here, the group was comprised of all those patients who might need dialysis and make a claim on scarce resources. In this scenario, the choice was to use scarce resources selectively and fully dialyze those patients we thought most likely to survive. This would provide the usual standard of care to a select few. The alternative was performing sub-optimal dialysis for a larger number of patients in the hope of temporizing until more dialysate could be secured. We recommended the second course of action.

In our published analysis of ethics consultation performed during the spring surge,Footnote ²⁵ the first papers published on ethics consultation during the pandemic in the United States, we dubbed this collective consult as a Service Practice Communications/Intervention (SPCI).Footnote ²⁶ This was a second level of ethical analysis pertaining to groups of patients rather than individuals. As such, it was a new epistemic category of consultation prompted by the exigencies of the pandemic and the need to think in utilitarian terms rather than the deontological ones that inform care under normal circumstances. In addition to SPCIs, we also provided normative advice to the institution under the guise of what we described as an Organizational Ethics Advisement (OEA).Footnote ²⁷ OEAs were advice to leadership at the hospital, university, and system levels, mediating disputes between units, and real-time education about developments in New York State law that might have a bearing on patient care.

Based on an historical review of our case notes, phone logs, and emails, we estimated conservatively that we performed 2,500 SPCIs and OEAs during the six-week period we studied.Footnote ²⁸ This was an unprecedented amount of activity, prompted in part by the clinical and regulatory contingency of the situation during the spring surge. While the biology of the coronavirus was a force of nature, the lack of state guidance with respect to crisis standards of care was a consequence of human nature. It would turn out that human nature was more difficult to control than the virus: New York’s inability to provide direction to clinicians and institutions during the crisis constituted an abdication of leadership.Footnote ²⁹

IV Abdication

In failing to promulgate crisis standards of care, the state stepped away from its responsibilities and failed to fulfill its duty during a crisis. This was especially disheartening to clinicians. In addition to grappling with an unfamiliar disease, they were forced to make ethical choices that turned usual presumptions of care on their head amidst the utilitarian demands of a public health emergency. They felt vulnerable to retrospective critique and legal liability because the regulatory context did not adequately acknowledge this need.Footnote ³⁰ In the back of our minds was the experience of doctors following Hurricane Katrina and the question of whether physicians would be vulnerable to prosecution after the crisis had passed.Footnote ³¹

While the governor did insert the Emergency or Disaster Treatment Protection Act of 2020 into the state budget, which mitigated some concerns about professional liability, the provisions of the Act were ambiguous, at least as viewed by those of us in the clinical community, insofar as it related to questions of resuscitation and the provision of critical care.Footnote ³² It did nothing to coordinate services across the state and bring resources to underserved areas, an area of omission that would become more glaring as the pandemic wore on.

At the start of the pandemic, the concerns were more localized to hospital care. Many clinicians wanted more specificity about triage and decisions about unilateral resuscitation. Might it be possible to set limits in the face of three pressing issues: (1) overwhelming scarcity; (2) the futility of resuscitation given advanced disease; and (3) the risk of contagion to providers who sought to revive patients. Let us take these three issues in turn.

With respect to scarcity, at the peak of the surge it was not uncommon for multiple patients to be in imminent need of intubation at the same time. One anesthesiologist reported that it was not uncommon for him to intubate more than ten patients on a single shift.Footnote ³³ Under normal conditions this was unheard of, and it placed a strain on the ability to provide timely care as would have been the case pre-pandemic. Some of the patients who were being intubated were certain to die and yet, absent any change in New York State law regarding resuscitation, there was no way to unilaterally write DNR orders if consent could not be obtained from surrogates.Footnote ³⁴

Turning to the question of futility, at that early juncture during the pandemic, patients who had a cardio-pulmonary arrest invariably died. The initial survivor data from Wuhan reported that only 2.9 percent survived.Footnote ³⁵ An audit of ICU care in the United Kingdom reported in early April 2020 was similarly dire. The thirty-day mortality of patients who were ventilated in intensive care was 49.9 percent for all patients and 68.1 percent for those 70 and older.Footnote ³⁶ So, the issue was one of futility and the utility of these interventions, an inter-relationship that is often overlooked when we consider medical interventions.Footnote ³⁷

Finally, there was the question of proportionality and the burdens-to-benefits ratio associated with resuscitation.Footnote ³⁸ As just noted, the benefit at that juncture was fleetingly low, approaching zero. In contrast, the risks were exceedingly high for practitioners, who would be exposed to aerosolized secretions during emergent intubations and cardio-pulmonary resuscitation (CPR). This would expose clinicians to the risk of contagion, a danger compounded by the inadequate availability of PPE at the time and the fact that those who were performing intubations might not have been as skilled as those normally called upon to perform that task prior to the pandemic. The risk of contagion was quite real. Spain, which was a few weeks ahead of New York with respect to the course of the pandemic, reported that 18.5 percent of health care workers contracted the coronavirus.Footnote ³⁹ This combination of factors, very low benefit coupled with high risk, made the procedure ethically unbalanced given risks outweighed benefits: low benefit to the patient against the risk of contagion to staff. This combination of factors made resuscitation disproportionate.

V For Want of Crisis Standards of Care

Scarcity, futility, and contagion would seem to argue for a change in resuscitation policy in New York State and the promulgation of some sort of triage mechanism along the lines of the 2015 Ventilator Report utilizing the SOFA mechanism. This seemed to be where the New York State Department of Health (DOH) was headed in late March. Despite the granularity of these conversations, the Department neither promulgated guidelines nor explained their decision not to act – either then or since.

The possible reasons why guidelines were not offered by the DOH are complex and multivariate, and one can only speculate. Politically, it was easier to build up capacity, as they did, rather than admit that resources were limited, as later documented in a report from the US Department of Health and Human Services Office of the Inspector General.Footnote ⁴⁰

The most objective reason that guidelines were not offered was likely scientific and a question of the prognostic utility of the SOFA methodology with respect to COVID-19 respiratory failure. The 2015 report and the SOFA methodology were designed to respond to an Avian flu pandemic, not COVID-19. Even weeks into the coronavirus pandemic, it became clear that the SOFA methodology was not a perfect fit: The Avian flu had a much quicker time course than did patients with COVID-19. For example, in the context of the Avian flu, patients triaged to one of the SOFA color categories were to be reevaluated at two- to three-day intervals. This was far too soon to evaluate patients with respiratory failure from COVID-19, who could take a month to recover and get off a ventilator.

In our discussions, this prompted the perennial adage of not letting perfect be the enemy of good. Could the SOFA methodology be modified to respond to this emerging disease or would such a modification make the use of SOFA a non-evidence-based approach to ventilator allocation? Or would the use of a modified SOFA methodology be better than an ad hoc approach to rationing ventilators? When the DOH convened in March to discuss this question, the trend was toward modification of intervals with an eye toward data collection and further iteration in order to retrofit the methodology for the current pandemic. Whether or not this would be possible is still a question for debate, with the literature suggesting both the ability and inability of SOFA scores to risk stratify and predict mortality from acute respiratory failure from COVID-19.Footnote ⁴¹

Another salient objection was that triage policies could be discriminatory. This is a serious objection but my view at the time was that the greater threat was unregulated triage, rationing, or priority setting, in which bias would sneak in without the proper oversight and accountability afforded by the law. Explicit guidelines could better protect the civil rights of people with disabilities, something that was in fact at risk during the pandemic, which saw the thirtieth anniversary of the Americans with Disabilities Act. Crisis standards of care, if properly conceptualized and implemented, could (and should) incorporate disability rights as part of any normative and legal framework. People with disabilities would be better off with transparent crisis standards of care that are properly designed and regulated than ad hoc decision-making, which could be discriminatory.

In a more recent analysis, I have argued that the SOFA methodology was indeed flawed when it came to the assessment of people with severe brain injury, but that is getting ahead of what I knew at the time.Footnote ⁴² I have also worried that altering hard-won patient prerogatives about decision-making at the end of life could result in resurgent paternalism and an erosion of norms that we would come to regret.Footnote ⁴³ Finally, there is an emerging literature on racism and SOFA scores. As one example, Tolchin and colleagues subsequently analyzed SOFA scores in non-Hispanic Black and Hispanic patients hospitalized in Yale New Haven Health System from March 29 to August 1, 2020. They found that non-Hispanic Black patients had greater odds of having a SOFA score greater than or equal to 6 when compared with non-Hispanic White patients.Footnote ⁴⁴ But all of this was later, after the surge and in moments of quiet reflection.

VI Social Justice and the Clinic

Whatever the reason for the failure to promulgate crisis standards of care, the consequences were significant. Without this guidance, clinicians and institutions were left to their own devices to make judgments unilaterally. This placed practitioners under tremendous stress. The stress, however, was not equally distributed. It disproportionately burdened clinicians and communities in underserved areas.

By way of an example is correspondence with a physician-ethicist practicing in a hospital in the Bronx.Footnote ⁴⁵ In a brave post on a national bioethics listserv at the height of the pandemic in New York, he wrote of the desperate situation on the ground. Overwhelmed by patients and by an inability to meet their needs, he wrote of unilateral decisions to withhold and withdraw life-sustaining therapy made at his city hospital.

He reported that, “we have mostly stopped performing CPR (notwithstanding absence of a DNR order) in cases where there was no chance of survival even with CPR.” He invoked the 2015 Task Force Report for guidance to withdraw life-sustaining therapy, guidance that – absent DOH crisis standards of care – remained an advisory document without the force of law. He concluded his email with an ethical justification: “Arguably, these withdrawals were acknowledgment of reality, not a true triage.”Footnote ⁴⁶ It was unfortunate that a lone clinician had to be placed in this predicament, with its normative burden and associated liability risk.

His professional challenge as a practitioner was reflective of the broader community he served. At that juncture, society was just beginning to comprehend the disproportionate burden that communities of color experienced from COVID-19. A remarkable research letter in JAMA in late April 2020 would report that the Bronx had the city’s highest COVID-19 morbidity and mortality due to long-standing health inequities, poverty, dense housing, and a disproportionate number of essential workers.Footnote ⁴⁷

Here, the gritty experience of the clinic, what Foucault called the “medical gaze,”Footnote ⁴⁸ is illustrative of broader social forces: the lack of preparation for the coming plague and the endemic health disparities that compounded its consequences. It should not have taken COVID-19 for us to have been prepared, or to recognize and respond to, health inequity. If this lived experience fails to inspire a concerted response, it will only compound the tragedy of the pandemic. There are many lessons to be learned from this history. We must heed these lessons lest history repeat itself when the next pandemic hits, as it surely will.

I Introduction

If a crisis is a terrible thing to waste, the COVID-19 pandemic will hopefully stimulate a needed reexamination of physicians’ public health obligations. Law, bioethics, and medical norms consider physicians’ duties to individual patients supreme, reflected in the ubiquitous health care mantra of “putting patients first.”Footnote ¹ As a result, public health inevitably ends up last. The generally accepted dominance of patient-centered duties crowds out physician attention to non-patients and the larger public health space. Patient primacy, while appealing for many reasons, is incomplete; addressing problems of collective importance often requires standardized, regulatory approaches and looking beyond relational obligations to patients.Footnote ² This is especially true for public health.

Physicians can all too easily discount community health considerations because their public health duties under the law are confoundingly elusive. At times, the law affirms physicians’ special capacity and obligations to improve the health of the community. More often, though, physicians’ public health duties are recognized on only a limited, ad hoc basis and without thoughtful justification for the reasons why physicians should have obligations for the health of non-patients. Meanwhile, the directive to put patients first means that physicians have considerable discretion to evade public health laws or disregard the public health implications of their treatment decisions.

Part I of this chapter describes the legal background concerning physicians’ duties to patients and to the community. Part II analyzes how bioethics and medical norms amplify the law’s patient-primacy directive. Part III illustrates how the elusiveness of physicians’ public health duties enables the externalization of health risks from patients to the population at large, considering COVID-19 and other examples. Part IV evaluates the difficult challenges, as well as countervailing justifications, in making physicians’ public health duties more cognizable. The most important reason is instrumental and policy-driven: physicians play an indispensable role in public health protection. The private physician is strategically embedded between his/her patient, other patients, and society, and performs critical sentinel, gate keeper, and learned intermediary functions essential to an effective public health system.

II Legal Duties to Protect Public Health

Physicians’ public health duties arise from a confusing patchwork of overlapping sources of legal authority. At times, and seemingly ad hoc, the law acknowledges that private physicians play an important public health role. Yet the obligations imposed are hardly robust and, more frequently, the law has difficulty recognizing physicians’ duties beyond the relational obligations formed with specific patients.

III Medical Ethics and Professional Norms Amplifying Patient Primacy

Medical ethics and professional norms reinforce and amplify the law’s patient-primacy directive, often to the detriment of public health. The nine core principles of the American Medical Association’s Code of Medical Ethics (AMA Code) include a seemingly bold endorsement of a robust public health role for the physician: “A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health.”Footnote ¹⁶ But significantly undercutting this obligation to non-patients, the AMA Code further instructs physicians to “place patients’ welfare above the physician’s own self-interest or obligations to others.”Footnote ¹⁷

The AMA Code underwent significant revisions in 2016, including, importantly, a reorganized series of ethics opinions in Chapter 8 that addresses “Ethics for Physicians [and] the Health of the Community.”Footnote ¹⁸ Yet many of the Chapter 8 ethics opinions make clear a physician’s public health responsibilities remain necessarily inferior to patient obligations. For example, Ethics Opinion 8.1, dealing with the importance of physician participation in routine universal screening of patients for HIV, assumes that “[p]hysicians’ primary ethical obligation is to their individual patients” and thus advises that physicians should respect a patient’s informed refusal to be tested for HIV.Footnote ¹⁹

The failure of traditional medical ethics to support more robust public health duties for physicians, and its seeming enfeeblement of such duties by obfuscation, should not surprise. Organized medicine has historically had a tense relationship and professional rivalry with public health. Further, public health’s more communitarian orientation remains at odds with the emphasis in traditional medical ethics on values such as autonomy, civil liberty, and anti-paternalism.Footnote ²⁰

Medicine’s professional norms also slight the health needs of the community in favor of patient primacy. Most medical school graduates take formal pledges to prioritize the patient’s welfare, with common language such as “the health and life of my patient will be my first consideration.”Footnote ²¹ Public health actions fit awkwardly with this sense of professional mission.

Physician discomfort with public health arises in part from the limited public health education they receive as part of their training.Footnote ²² Further, the fact that much physician work is oriented around particular episodes of care makes it harder to adopt population-based perspectives in decision-making. The understandable default is to deal with the patient at hand, case by case.

IV Risk Externalization to the Public

The patient-primacy directive, combined with the otherwise elusiveness of physicians’ public health duties, enables the externalization of insidious health risks from patients to the population at large. Several examples across the wide public health space reflect this troubling pattern.

V Recalibrating Physicians’ Public Health Duties

Considerable obstacles arise in making physicians’ public health duties more robust and cognizable under the law. Yet countervailing justifications support this shift, including, most importantly, role indispensability.

VI Conclusion

The traditional pattern of patients first, public health last facilitates the externalization of health risks to the community. It has become unavoidably necessary to reconsider physicians’ duties and ensure that they pay greater heed to the population’s health. The law needs to appropriate physicians for public health protection because, as a practical matter, there are no better choices.

Their unique strategic role, embedded between the patient, other patients, and society, makes physicians indispensable to effective public health protection.

I Introduction

The COVID-19 pandemic has shown us that the health care system we thought we had is not the health care system we actually have, crystallizing concerns (whether long-standing or emerging) over several aspects of health care financing, delivery, and governance. “Preparedness” calls for more than lip service when failures in public health surveillance and response cost over a million lives and threaten a decade of economic prosperity. “Solidarity” has deeper meaning when social divisions accentuated for political advantage undermine consensus behaviors that could prevent disease spread and accelerate immunization. “Innovation” seems more precious when saving lives and livelihoods depends on adaptive clinical methods, novel therapeutics, and rapid development and distribution of vaccines. “Health equity” is more compelling when poor communities of color are among the first to face illness and death but among the last to access treatment and vaccination. And “burnout” has greater salience when fulfillment from dedicated patient service competes with fear and exhaustion among health care professionals and other front-line workers.

Medicine and nursing have long professional traditions of altruism and self-sacrifice, including undertaking not only extreme stress but also personal risk in service of patient care. With exceptions for natural disasters, humanitarian missions, and military service, however, recent concerns about professional “burnout” often have had more to do with organizational tensions than with core clinical circumstances. The COVID-19 pandemic changed that – bringing front and center the close connections between the well-being of health care workers and the well-being of the patients they serve. This chapter describes the COVID-19 experience of health care workers in New York City (NYC) and environs during the spring of 2020, examining what happened, why things went wrong, and how it drew attention and generated responses. This chapter then steps back to consider the root causes of health professionals’ physical and psychological vulnerability during COVID-19, such as inequities within the health care system, professional hierarchies, safety system failures, and gaps in business and regulatory practices.

This concluding section also identifies potential improvements, ranging from ethics and advocacy to corporate governance and labor organization, workplace redesign, and regulatory and payment reform.

II Pandemic Unpreparedness and the Health Care Workforce

Over one million Americans have died from COVID-19, with deaths and serious illnesses occurring at higher rates among individuals and communities identifying as Black, Indigenous, and persons of color. Before vaccination became widespread, health care workers accounted for about 6 percent of all US infections, with a distribution that similarly tracks social determinants and ethnic and racial disparities.Footnote ¹ Infection rates and mortality have been much higher among nurses than among physicians; occupational exposure during patient care is apparently responsible for most cases in those professional categories. Aides and other assistive personnel have suffered from the highest infection rates overall, and have been involved in transmission within nursing homes and congregate care settings, but most of their exposure seems likely to be in their often-vulnerable communities rather than arising from patient care, and their hospitalization rates appear lower. According to a tracking website, over 3,600 US health care workers had died from COVID-19 by the end of April 2021 – a tragic outcome and a continuing source of stress and concern for those who remained at work.Footnote ² In normal times, the health professions regard each patient they treat as the exclusive beneficiary of their attention, with tensions among different patients’ interests finessed, interests of potential patients ignored, and outright patient–patient conflicts acknowledged only in specialized contexts (e.g., organ donors and organ transplant recipients). Outside of normal times – on the battlefield, during natural disasters, and certainly in the COVID-19 pandemic – shortages, timing, and other exigencies may require triage decisions, “crisis” (i.e., reduced) standards of care, and even so-called “tragic choices.”Footnote ³ Depending on the circumstances, these conditions can reinforce professional pride and build teamwork, or can cause profound sadness and inflict moral injury.Footnote ⁴ Health professionals are even less prepared to balance risks of harming patients with risks of harming themselves. Self-sacrifice remains under-developed in both ethical and operational terms. While attention to “burnout” has increased, much of the associated literature (beyond undeniably important concerns over mental health and substance use) has focused on the perceived loss of professional autonomy and control because of organizational, technological, and generational change.Footnote ⁵ Connections to core patient care commitments and long-term clinical performance have been sporadic.Footnote ⁶

The COVID-19 pandemic reminded the country of health professionals’ continued willingness to put themselves in harm’s way for the benefit of their patients. Many younger professionals initially embraced self-sacrifice, telling researchers unequivocally that: “We signed up for this!”Footnote ⁷ But in a sustained and serious pandemic, a heroism-based ethical paradigm for accepting personal risk is as misleading as the myth of professional perfection has been for avoiding medical errors. Supportive teams, organizations, families, and communities are essential.

Medical ethics has seldom focused on these issues, generally charging physicians and nurses with furthering the patient’s interest even at some personal risk. Because many examples of self-sacrifice reach back in history to infectious diseases that became preventable by the middle of the twentieth century, the point at which professionals may ethically distance themselves from hazardous care is seldom mapped. Recent high-risk exposure has been voluntary, such as traveling to Africa to care for Ebola patients, or hypothetical, such as potential bioterrorism or novel influenza strains that did not ultimately prove that dangerous. COVID-19 presents a very different situation, with high volumes of sick and likely infectious patients across geographies, uncertain prognoses for exposed health care workers, and for many months, neither an effective therapy nor a proven vaccine.

There is little enforceable law to reinforce or guide professional ethics. With only a few exceptions (e.g., duties of nonabandonment, care in emergency departments under the federal Emergency Medical Treatment & Labor Act, various contractual agreements), health professionals are not legally obligated to render care to patients in medical need.Footnote ⁸ This is true even during emergencies, although Section 608(a) of the Model Emergency Powers Act, drafted after the 9/11 attacks, would authorize governors to conscript physicians into service as a condition of professional licensure.Footnote ⁹ A few states have enacted the provision, but no governor or state official has exercised or requested that authority during the COVID-19 pandemic.

The most developed law and ethics of physician obligation despite personal medical risk relates to the HIV/AIDS epidemic of the 1980s, before patterns of transmission were well established and antiretroviral treatment became routine in developed countries. The American Medical Association issued Ethical Opinion 9.131 in 1992, requiring qualified physicians to treat HIV-positive patients, and courts interpreted the Americans with Disabilities Act of 1990 to prohibit the exclusion of those patients from dental offices and other health care settings.Footnote ¹⁰ These obligations to care for HIV-positive patients were motivated by concerns about stigma as well as about access to care; HIV cases clustered among groups, such as gay men, who had previously been subject to discrimination. Discrimination also results in disparities during the current pandemic, but the injustices of COVID-19 reflect structural and institutional inequities more than explicit bias.

Tensions between COVID-19 patient care and the well-being of health professionals also reflect the peculiarities of the lavishly funded but only partially industrialized health care system in the United States. The US health care workforce is overwhelmingly deployed in private settings, even though much of its cost is supported by public sources of funding. Each category of licensed health professional is subject to oversight by a dedicated, state-specific licensing board, with little uniformity or coordination. The hospital sector is highly consolidated, and now employs roughly 40 percent of American physicians. Yet physicians retain norms and, in many states, legal rights of self-governance even when they practice within hospitals, are paid from health insurance revenue streams different from those that support health facilities, and may be exempt from the occupational health and safety laws that govern ordinary workplaces. Chronic and long-term care facilities, which also faced a high risk of COVID-19 spread and serious illness, lack the funding, physician and nurse leadership, and public visibility of the hospital sector.

III Professional Vulnerability: The NYC COVID-19 Experience

We begin with the experience of NYC hospitals facing a sudden and vicious outbreak of disease in spring 2020, during the first phase of the pandemic in the United States. On March 7, 2020, the governor of New York declared a state of emergency due to the coronavirus pandemic and, by March 20, a stay-at-home order. By the end of March, NYC had become the epicenter of COVID-19, and hospitals were struggling to keep up with the demands placed on them by the pandemic. Immigrant communities in Queens, Brooklyn, and the Bronx were especially afflicted, so much so that the conditions at NYC Health and Hospital’s Elmhurst Hospital in Queens were described as “apocalyptic.”Footnote ¹¹

As the crisis advanced, NYC hospitals were faced with an enormous challenge: expanding critical care capacity, increasing critical care staffing, securing supplies and equipment and, most importantly, protecting their front-line workforce.Footnote ¹² Hospitals with a 300-bed potential intensive care unit (ICU) capacity at baseline had to create space for more than 1,000 ICU patients.Footnote ¹³ Given NYC’s preexisting space constraints, hospital administrators used existing infrastructure creatively, converting conference rooms, lobbies, and cafeterias into patient rooms. Procedural areas, such as operating rooms, were used as ICU spaces, with each room supporting two to four patients. Tents were constructed in parking lots and city parks to evaluate lower-acuity patients and decant traditional hospital spaces.

The volume of COVID-19 patients admitted to NYC hospitals, and the speed at which they arrived, placed a significant strain on ICU staffing. This strain was compounded by the number of hospital workers who tested positive for COVID-19, called in sick to care for ill family members, or were hospitalized themselves. At one point, Elmhurst Hospital reported that 8 percent of its workforce had been out sick.

Although the suspension of ambulatory care and elective surgeries freed up some existing staff for COVID-19-related patient care, many remained idle because NYC hospitals recruited critical care staff from other locations rather than retrain local personnel. ICU-trained nurses across the country left jobs in smaller, sometimes rural hospitals to travel to NYC, where they could earn as much as $10,000 per week.Footnote ¹⁴ Hospitals that were able to afford it therefore supplemented their workforces, while hospitals without as many resources were unable to offer their overworked nursing staff much-needed relief. Over time, this created a shift in nurses to more affluent areas of NYC.

It turned out that not all additional staff had been trained at the necessary level. Reports of improper treatments and overlooked patients dying alone added training of new staff to the burden on existing ICU staff. Non-ICU staff also received successful training on essential tasks, notably service on manual “proning” teams – those skilled in placing critically ill COVID-19 patients in a downward-facing position to improve gas exchange in the lungs.Footnote ¹⁵ With proning teams in place, anesthesiologists were redeployed to emergency departments to perform intubations, and pediatric nurses transitioned to adult patient care areas. Tiered staffing structures with a “head” ICU nurse leading non-ICU providers were used to expand capacity, upskilling existing staff in a supervised fashion.Footnote ¹⁶ Still, some non-ICU nurses reported feelings of inadequacy because they did not know enough to provide independent care, and feared being furloughed.

Having managed inventory for years on a “just-in-time” basis, hospitals facing pandemic caseloads found themselves short of supplies and equipment and were unprepared to acquire them quickly. Delivering the volume of critical care needed by COVID-19 patients at the height of the surge depended on having almost five times the accustomed ICU inventory of ventilators to help patients breathe, infusion pumps for medications, and dialysis machines to treat kidney failure. Disposable supplies such as ventilator tubing, intravenous tubing, dressings, and personal protective equipment (PPE) were also at critically low levels.

With many hospitals competing for the same supplies, systems for tracking, accessing, and distributing supplies and equipment became a paramount need. Given the respiratory nature of COVID-19, the asset management of ventilators was a primary concern. Even hospitals with real-time location tracking systems relied on respiratory therapists to keep count or leveraged patient care data from the electronic health record. Neither workaround was perfect. Busy health care workers had difficulty noting when equipment went out of service or when new equipment was entered into inventory. Electronic health record data were limited by the temporary suspension of charting requirements and delays in documenting ventilator orders by staff who were busy delivering patient care.

Within days of the first reported case in NYC, hospital leaders recognized that front-line staff were exhibiting distress and that protecting them was essential. The suffering took many forms and had many causes. Health care workers feared for their physical safety not only because they might contract COVID-19, but also because they faced targeted discrimination and related stigma. After ending an overnight shift, nurses at one hospital found twenty-two of their vehicles with tires slashed. When some politicians labeled COVID-19 the “China Virus,” health care workers of Asian descent were forced to contend with xenophobia, abuse, harassment, and hate crimes. In early April 2020, officials from the World Health Organization called for a zero-tolerance approach and established measures to protect health care workers.Footnote ¹⁷

Staff were also endangered by supply chain issues involving PPE such as masks, gowns, gloves, and face shields, with many hospitals initiating mandatory conservation measures. Some physicians reused disposable face masks and nurses wore plastic garbage bags instead of gowns.Footnote ¹⁸ The physical and psychological effects of PPE shortages were worsened by a high degree of uncertainty in the early stages of the pandemic. The Centers for Disease Control and Prevention wavered on when to use single-use N95 respirators versus surgical masks, and on whether COVID-19 required droplet precautions.Footnote ¹⁹ This confused and misled health care workers.

Psychological pressure took many forms.Footnote ²⁰ Health care workers feared that they might bring COVID-19 home to their families or friends. Many stayed in hotels or other isolated residences for months – initially at their own expense but over time as part of additional benefits funded by hospitals (including transportation and childcare). Such isolation, often self-imposed, added to the mental anguish. Some health care workers saw more deaths in a few weeks than they had seen during thirty-year careers. Others held the hands of patients in their final moments because family members were not allowed to visit. In some cases, health care workers made bedside decisions when needed supplies and equipment were not available, raising practical, ethical, and legal questions. But front-line workers wanted to save lives, and they were willing to put themselves in harm’s way to do so.

Longer hours at a faster pace, lack of sleep, and emotional exhaustion pushed front-line workers to the breaking point. Although all health care workers were affected, one large study in NYC reported that nurses paid the greatest psychological price.Footnote ²¹ Nurses working double shifts were unable to get groceries for their families, do laundry, or tend to household needs. While many health care workers found solace and respite in healthful activity, the social isolation and other strictures required to contain the pandemic led others down dangerous paths. For some, the price of selflessness was beyond measure. Dr. Lorna Breen, a respected NYC emergency room physician and clinical leader, died by suicide after treating patients during the surge and then experiencing symptoms of COVID-19 herself. Other suicides and self-inflicted harms have been reported.Footnote ²²

Government uncertainty impacted organizational responses. State and city officials held daily briefings, but sent mixed messages about when health care workers needed to be tested, when exposed staff should return to work, and how to handle reentry for staff recovering from COVID-19. Hospital staff looked to their employers for guidance and protection, not professional associations, not the local government. Although many hospital leaders communicated daily with staff, the shifting guidance was interpreted as a lack of transparency.

Information dissemination also proved challenging: staff were not always working on their usual unit, were sometimes isolated, and left work immediately after shifts. With fewer hospital leaders physically on site, front-line staff also struggled with communicating complaints, articulating needs, and providing feedback on pandemic-related issues. While many hospitals offered financial incentives and free meals to express appreciation for staff, front-line workers indicated a preference for clear communication over extra pay, and some staff reported feeling belittled by bonus payments. At times, staff reported that they were making decisions on-the-fly and running their own units – saying that “anything goes.”

IV Principal Lessons and Recommendations

The COVID-19 pandemic has played out during the unhappy conjunction of the greatest public health threat since 1918 and (with the important exception of vaccine development) the most dysfunctional federal government response to a major social need since the onset of the Great Depression. Yet hospitals and other critical systems of medical care have bent but have not broken – thanks in part to the dedication of millions of health professionals and other essential workers. It is tempting to think that today’s performative politics of division is an aberration, that policymaking and public response will return to being based on facts and science, and that the next test of health professional resilience will be milder or more localized. Even so, the COVID-19 experience highlights several aspects of the health care system that bear reexamination and improvement, for the mutual benefit of health care workers and patients.

V Conclusion

The COVID-19 pandemic has demonstrated the resilience of the health care workforce but has also exposed its vulnerabilities and has energized efforts to improve the practice and service environment.Footnote ⁴⁶ Some lessons have been learned; for example, NYC hospitals coped far better with record case numbers from the Omicron variant than they had with the smaller initial waves of COVID-19 infection.Footnote ⁴⁷ With careful design and implementation, including research evaluation and as much insulation from partisan politics as possible, these efforts can put meat on the bones of what is often called the “Quadruple Aim.” In 2015, leaders at the Institute for Healthcare Improvement added “joy and meaning in the work of health care” to the Institute’s path-breaking “Triple Aim” of improving the patient experience of care, improving the health of populations, and reducing per capita health care costs.Footnote ⁴⁸ The core insight of the Triple Aim was its acknowledgment that current health care practice is far from optimal. Rather than accept tradeoffs among cost, access, and quality as unavoidable, self-examination and incremental innovation could yield simultaneous sustained improvement in all three prongs of the Aim. The pandemic experience confirms that patient experience, population health, and cost are all dependent as well on the fourth prong: an engaged and supported health care workforce.

I Introduction

Numerous interrelated and deep-seated factors helped COVID-19 exact its horrific toll in the United States. Long-standing structural inequities, the depletion of public health departments, a privatized health care system poorly suited to combating a public health disaster, judicial decisions that limited public health powers, and a president who willfully undermined the pandemic response are among the many culprits. Important, too, has been the plethora of misinformation on matters ranging from the value of masks to the purported efficacy of hydroxychloroquine and ivermectin in treating COVID-19. This “infodemic,” as the World Health Organization has called it, has also stymied efforts to control the pandemic through vaccination.Footnote ¹ Misinformation about plagues and vaccines is not new.Footnote ² The current infodemic, however, goes well beyond familiar forms of science skepticism or vaccine rejection. As reports roll in about people eschewing masks and vaccinations and taking unproven and dangerous drugs, it is hard not to wonder whether the United States has been gripped by a more virulent cynicism that questions whether meaningful truth can be – or need be – found at all.

Lee McIntyre and others refer to this alarming mindset as “post-truth.”Footnote ³ As much as any pathogen, post-truth threatens future efforts to contain pandemics and other public health threats. While many scholars have explored the roots of the post-truth problem,Footnote ⁴ we focus on an overlooked piece of the larger puzzle. In particular, we look at developments within health law, generally adopted for important reasons, that may have inadvertently contributed to the post-truth climate. These developments include the creation and evolution of the doctrine of informed consent and the rise of direct-to-consumer advertising (DTCA). These doctrines, which center on patient autonomy, we suggest, may have had the side effect of encouraging individuals to believe that they can and should navigate tough medical questions without guidance from scientific or medical experts. In so doing, these doctrines may have primed people to accept misinformation and reject vaccines and masking. To prevent a similarly bleak outcome during the next pandemic, we need to consider how health law may have contributed to the post-truth problem during COVID-19. This chapter starts that conversation.

We begin in Part II by providing a brief overview of the COVID-19 infodemic. In Part III, we introduce the concept of post-truth and highlight various “attributes” that distinguish it from the healthy skepticism that accompanies critical thinking.Footnote ⁵ We then link the post-truth phenomenon to broader shifts in cultural attitudes toward individual choice and the embrace of subjectivity.

In Part IV, we turn to developments in health law that emphasize individual choice and have led to an erosion in the role of professional expertise. In Part V, we discuss how these developments created fertile ground for post-truth in ways that undermined efforts to mitigate COVID-19. We conclude by suggesting that if we are to avoid the next post-truth pandemic, health law scholars and policymakers must come to grips with the post-truth phenomenon and the practices within health law that may, however inadvertently, encourage it.

II The COVID-19 Infodemic

Since the start of the COVID-19 pandemic, misinformation about the coronavirus, its origins, its dangerousness, and ways to mitigate it has been abundant. The falsehoods started early when President Trump lied to the public about the risks of COVID-19 and touted hydroxychloroquine as a remedy.Footnote ⁶ President Trump, however, was not alone in spreading misinformation. Conspiracy groups, such as QAnon, popular news outlets, and prominent anti-vaccinationists spread misinformation prolifically, especially via social media.Footnote ⁷ Unfortunately, many Americans believed the deceptions. A Kaiser Family Foundation poll taken in fall 2021 found that 78 percent of adults either believed one or more of eight falsehoods about the pandemic to be true or expressed uncertainty about whether one or more was true.Footnote ⁸ Over one-third of Americans believed that the government had exaggerated the number of COVID-19 deaths, while over one-third either believed or were unsure if the government was hiding the number of vaccine-related deaths.Footnote ⁹ Other polls have found similar or even more alarming findings.Footnote ¹⁰

This misinformation has taken its toll. According to the Surgeon General, it has “led people to decline COVID-19 vaccines, reject public health measures such as masking and social distancing, and use unproven treatments.”Footnote ¹¹ It has also incited “harassment of and violence against” public health workers.Footnote ¹² As we discuss in Part V, it has spurred litigation against health professionals and public health measures. In short, it has made a very bad situation far worse.

III Post-Truth

Although health-related misinformation is not new, its impact during the pandemic has been especially worrisome. One reason is that COVID-19-related misinformation landed in a post-truth environment.

Defining “post-truth” is notoriously difficult, but for our purposes we might encapsulate “post-truth” as the widespread abandonment of any metric by which statements about the world can be judged correct or not. Delving into the nature and causes of the current post-truth environment would require exploring factors that include political polarization, the media environment,Footnote ¹³ loss of faith in experts and institutions,Footnote ¹⁴ and advances in our understanding of how preconceptions influence our perception of the facts.Footnote ¹⁵ Here, we focus on three key attributes and the forces that helped propel them.

As an illustration, consider the debate over the safety of the measles-mumps-rubella vaccine. A strong scientific consensus affirms that it does not cause autism.Footnote ¹⁶ Nevertheless, a zealous movement of vaccine skeptics, who spread misinformation across social media and elsewhere, have questioned that consensus.Footnote ¹⁷

A political community grounded in truth would ask questions and encourage continued research (which has taken place) and debate the questions raised. In a healthy informational environment, debate would be informed by the best available evidence. To put it another way, the research consensus would matter to and influence skeptics.

Such a search for truth, of course, would not guarantee consensus. On many issues, although not the vaccine–autism link, experts disagree. Moreover, many policy choices blend questions of scientific fact (do vaccines cause autism?) with social/economic/political and value choices (should vaccines be mandated?). Nevertheless, a well-functioning democracy depends upon decision-making processes that include reliance on experts to develop an agreed-upon set of facts and ongoing dialogue among voters and public officials about policy responses.

How might a society slip down the path toward post-truth so that the scientific consensus settles so few questions? Part of the answer may rest in breaches of trust by powerful public and private leaders, as exemplified by the Pentagon Papers and the lies leading to the Iraq War.

Deceptions in biomedical research, such as the infamous Tuskegee experiments or Elizabeth Holmes’s fantasies about miraculous home blood tests, offer powerful grounds for distrust. Trust can also be undermined when officials offer seemingly inconsistent advice. For example, early statements from government officials, such as Dr. Anthony Fauci,Footnote ¹⁸ suggesting that masks would not protect the general population (grounded in part by a desire to preserve the limited supply of N95 masks for health care workers) undoubtedly hindered later efforts to encourage masks once scientists knew more about the transmission of COVID-19.

Even the most spectacular fabrications, however, need not generate more than a culture of healthy suspicion. Post-truth also requires the discreditation of science, a process that was fueled by the efforts of powerful industries, such as tobacco companies and fossil fuel companies, to undermine the very idea of science in order to deflect criticism and regulation.Footnote ¹⁹ The resulting loss of confidence in science and the value of a productive exchange of views, informed by the guidance of experts, is the first attribute in the slide toward post-truth.

Our polarized era, however, has fostered an acceleration of a second key attribute of the rise of post-truth: a tendency to make decisions by relying on personal intuition and advice from those who share one’s background and values, rather than those who have developed knowledge through lengthy study and professional experience. At first glance, asking people to rely on their own best judgment may seem like good old-fashioned American self-reliance. Personal decision-making founders, however, in the face of challenging aspects of contemporary life. Consumer markets, for example, demand that everyone become educated on multiple topics, from electricity rates to health insurance plans.Footnote ²⁰ Mastering the many choices we face is impossible.

Yet, without trust in experts, individuals turn to the Internet and social media to glean information that confirms their previous, often uninformed, predilections. In this environment, the wondrous availability of information that originally promised the democratization of knowledge perversely facilitates the manipulation of preferences. Post-truth flourishes when people who must make more choices than they can rationally handle rely on the counsel of nonexperts whose interests or views they share. Thus, just as consumers rely on advertisements on their favorite channels or media sites to make product choices, they begin to base their health decisions on affinity and political affiliation. How else could the wisdom of wearing masks or being vaccinated turn on party affiliation, an observation confirmed in a Gallup survey revealing that as of mid-September 2021, 92 percent of Democrats had been vaccinated against COVID-19, as compared to only 68 percent of Independents and only 56 percent of Republicans.Footnote ²¹

It gets worse. As individual choices move from reliance on expertise to group affiliation, choices tend to reinforce themselves. Just as sports fans view referee calls through the lens of their team affiliation,Footnote ²² people who identify with a social movement, such as anti-vaxxers, are likely to view new evidence through lenses they have already adopted. Cognitive mechanisms, including confirmation bias and the Dunning-Kruger effect, magnify distortions as people weigh new information that reinforces their predispositions more heavily, and those who know little about a subject are apt to overestimate their knowledge.Footnote ²³ As people find themselves more deeply attached to the choices of their group, they grow steadily more comfortable with the idea that contestation about which policy to pursue or which health choice to make is more about “winning” the argument than finding the truth. And thus we slide still further toward the third attribute of post-truth: a high comfort level with the idea that there is no such thing as a fact. This “what me, worry?” stance combines rejection of one’s civic duty to remain open-minded toward the ideas of experts and fellow citizens with a self-flattering notion that protects people from accepting that they are ever wrong. The result is a world in which people not only believe and act on misinformation, but in which they dismiss contrary evidence, sometimes even on their deathbeds.Footnote ²⁴

IV Post-Truth Health – The Rise of Patient Decision-Making

Why was post-truth so prominent during the pandemic? Why did mounting deaths and overcrowded hospitals not cause more people to follow the advice of experts? In this part, we explore the role that health law and bioethics may have inadvertently played in leading Americans to believe that they, rather than the experts, were both adept at and responsible for making decisions about COVID-19. In so doing, we provide neither a full history nor a critical assessment of the developments we discuss as there is an abundant literature. We also readily acknowledge that many other factors, including the rise of right-wing populism and ideological opposition to legal protections for some rights (e.g., abortion and gay rights), have also fueled doubts about expertise and truth. Nevertheless, accepting that law nurtures and reinforces social norms,Footnote ²⁵ we highlight some ways in which legal developments may have altered norms about truth and expertise with respect to health.

VI Conclusion

So here we are with our post-truth, epistemologically subjective pandemic. In connecting the developments that we have outlined in health law to the post-truth pandemic, we hardly mean to suggest that health law and bioethics are solely or even primarily responsible for this crisis.

Indeed, we believe that the transformation of health law that we have described is as much symptom as cause. Still, this is an important moment for health law scholars to consider how health law and bioethics may have nurtured the seeds of post-truth and complicated our battle against COVID-19 and future threats.

By prioritizing individual choice and castigating paternalism, health law may have helped – however unintentionally – to erode trust in medical and scientific expertise. At the same time, health law has sent the message that each individual must be the decision-maker and therefore must determine what is true and not true regarding their own health, without having to consider the impact of their decisions on others. Faced with such a burden and power, patients understandably rely on their social media “friends,” DTCA, and the rabbit holes that algorithms send them down.

We readily acknowledge that there are no easy fixes. We certainly would not suggest that health law should – even if it could – go back to the time when “the doctor knows best.” As we have shown, the move to patient empowerment arose in response to significant abuses. We do, however, believe that it is critical to consider how laws that have aimed to enhance patient autonomy and weaken regulatory oversight of markets have facilitated post-truth. We must also explore how autonomy over one’s own medical decisions can be respected without endangering public health and undermining respect for expertise. While we should not go back to the bad old days, we need to find a recalibration that values the common good and recognizes that its attainment requires that discourse be informed by science.

What COVID-19 has sadly taught us is that our descent into the post-truth world, augmented by our political divisions, can be deadly. In the wake of the pandemic, not to mention the climate crisis, we need to find ways to reject the epistemological nihilism of post-truth, and the overbearing insistence on an autonomy that elevates uninformed individual choice over the common good. Nature, alas, is not bemused by our subjectivity.

I Introduction

In December 2019, an outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) began spreading across the world.Footnote ¹ Its clinical syndrome, COVID-19, has led to significant morbidity and mortality in the United States.Footnote ² On the one-year anniversary of the pandemic, more than 31 million people had been infected and almost 560,000 people had died due to COVID-19 in the United States;Footnote ³ both of these statistics are probably underestimates. Reports have revealed stark disparities in infection, severe illness, and mortality from COVID-19 among racial and ethnic minority populations in the United States, particularly African American and Latino populations, but also American Indian and Alaska Native as well as Native Hawaiian and Pacific Islander populations.Footnote ⁴ The observation of this dramatically disproportionate burden of illness from COVID-19 has shone a bright light on long-standing health disparities in the United States.

The principal reason for excess infections among racial and ethnic minorities is structural. A larger proportion of these populations are employed in essential jobs that require a physical presence in settings such as food markets and public transportation. Working from home and sheltering in place are privileges that are not available to many. In addition, other important factors include: (1) living in single-family homes with spacing between structures, as opposed to densely populated urban communities, such as apartment buildings; (2) fewer individuals sharing a household; and (3) larger physical living space. Self-isolation after a potential COVID-19 exposure or initial symptoms becomes almost impossible when extended families of, for example, ten persons share a living space with two bedrooms and one bathroom. Higher poverty rates and less access to broadband Internet, or ownership of a computer, create additional barriers to accessing information and services. Once infected, a higher prevalence of underlying comorbidities, lack of health care insurance or access, and delay or avoidance of medical care has led to persons presenting with more advanced COVID-19 disease, and has led to more hospitalizations and subsequently a higher share of mortality. Such preexisting disparities have been amplified by the pandemic, resulting in worse health outcomes related to COVID-19 among racial and ethnic minority groups. It is important to understand the populations at most risk and the factors that have contributed to COVID-19 disparities.

II What Are Health Disparities and Who Is Affected?

The National Institute on Minority Health and Health Disparities (NIMHD) defines a health disparity as “a health difference, on the basis of one or more health outcomes, that adversely affects disadvantaged populations.”Footnote ⁵ Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on a social disadvantage, in part due to discrimination or racism and in part due to being underserved in health care.Footnote ⁶ Populations with health disparities include racial and ethnic minorities, as defined by the US Census, underserved rural populations, socioeconomically disadvantaged populations of any background, and sexual and gender minorities.

The complexity of how or why these factors influence health outcomes is at the core of the science of minority health and health disparities. Self-identified race or ethnicity and social class are the fundamental pillars of this science and interact in ways that are not entirely clear in terms of how they produce disparities. Rarely does one factor fully account for the variance in a specific condition or outcome. As an example, data on obesity among youth between the ages of two and nineteen years show differences by race and ethnicity, with 8.6 percent of Asians, 19.5 percent of Blacks, 21.9 percent of Latinos, and 14.7 percent of Whites being obese. When these data are also stratified by the level of education of the head of household, the effects of both fundamental factors become evident. Among youth who live with a head of household who has a college education, 5.5 percent of Asians, 15.4 percent of Blacks, 13.5 percent of Latinos, and 8.5 percent of Whites are obese.Footnote ⁷ Racial and ethnic disparities persist in youth obesity prevalence, even among households with a college-educated head of household.

III Racial and Ethnic Disparities and COVID-19

The COVID-19 pandemic has greatly exacerbated existing racial and ethnic disparities among US populations with health disparities and has had a disproportionate impact on these communities across the country.Footnote ⁸ In addition to a higher risk of infection due to structural factors, conditions associated with severe COVID-19-related morbidity and mortality, such as diabetes and cardiovascular diseases, are more prevalent among African American and Latino populations than among Whites, and are more prevalent among sexual and gender minorities than among heterosexual and cisgender individuals.Footnote ⁹ These chronic conditions lead to a higher risk of COVID-19-related hospitalization, exacerbated by less access to health care.Footnote ¹⁰ Other comorbidities, such as hypertension and severe obesity, are also higher in prevalence among low-income, minority populations.Footnote ¹¹

Within six months of the original outbreak, national data were consistently showing that African American, American Indian and Alaska Native, and Latino populations were much more likely to contract and suffer from COVID-19 than their White counterparts.Footnote ¹² Despite these three groups representing only about 33 percent of the US population at the time,Footnote ¹³ they constituted more than 50 percent of cases and 45 percent of deaths.Footnote ¹⁴ National data indicate that American Indians and Alaska Natives, as well as Latinos, have had the highest age-adjusted and standardized prevalence of COVID-19 infection: 1.5 times higher for both compared to Whites (Table 5.1).Footnote ¹⁵ Hospitalization data have shown that African Americans, American Indians and Alaska Natives, and Latinos all experienced a higher age-adjusted and standardized prevalence of COVID-19-related hospitalization than Whites (2.85–3.70 times higher) (Table 5.1).Footnote ¹⁶

These disparities have been observed in mortality data as well. Age-specific percentages of COVID-19 deaths by race and ethnicity, compared to the percentage of each racial and ethnic group in the US population, have revealed that Latinos in every age group have been the most affected by COVID-19, followed by African Americans, American Indians and Alaska Natives, and Native Hawaiians and Pacific Islanders.Footnote ¹⁷ More specifically, the proportion of deaths from COVID-19 among persons aged 25–54 who are Latino is at least 10 percent higher than would be suggested by their overall proportion in the population.Footnote ¹⁸ For Whites aged 25–54 years, the death rates are lower by as much as 20 percent than would be suggested by their population representation.Footnote ¹⁹ Latinos had the largest increase in the number of deaths per week in 2020 compared to the average number of deaths per week between 2015 and 2019 (53.9 percent), as compared to Whites (11.9 percent).Footnote ²⁰ Asians (36.6 percent), African Americans (32.9 percent), and American Indians and Alaska Natives (28.9 percent) also experienced dramatic increases in deaths per week compared to prior years.Footnote ²¹ Furthermore, COVID-19-related death rates among African Americans, American Indians and Alaska Natives, and Latinos are more than 1.5 times higher those among Whites (Table 5.1).Footnote ²² Although national data on COVID-19 among sexual and gender minority populations are not available, there is evidence that risk factors for severe disease are more frequent.Footnote ²³

IV The Social Determinants of Health and COVID-19

The COVID-19 pandemic has proven that the driving force behind racial and ethnic disparities stems from the social and structural factors that put minority populations at a significant disadvantage. Such factors, labeled the social determinants of health, are powerful drivers of health outcomes, can be influenced by governmental policies, and have been shown to influence COVID-19 disparities.Footnote ²⁴ The US Department of Health and Human Services organizes the social determinants of health into the following five key domains: (1) health care access and quality; (2) economic stability; (3) education assets and quality; (4) neighborhood and the built environment; and (5) the social and community context.Footnote ²⁵ Demographic characteristics and individually measured factors (e.g., health literacy) are also important to consider. While these disparities have been alarming to many, for others they have illuminated the unfortunate inequities in health and health care that have persisted in the United States for decades. These inequities do not arise on their own and are not independent of other factors. They are driven by underlying causes that contribute to the disproportionate burden of disparities among racial and ethnic minorities.

V Health Care Access Inequities

It has been well documented that there are inequities and disparities in health care access and quality in the United States.Footnote ²⁶ COVID-19 has amplified existing health care disparities in highly visible ways, with issues such as a lack of or inadequate health insurance and hard-to-access health care facilities becoming even more pertinent for racial and ethnic minorities.

Compared to Whites, racial and ethnic minority populations are more likely to experience delays in receiving routine and emergency care and are less likely to have a primary care clinician.Footnote ²⁷ Since the start of the pandemic, millions of Latinos have lost access to health care coverage due to the abrupt loss of employment.Footnote ²⁸ African American and Latino individuals are less likely to seek care due to cost, lack of insurance, medical mistrust, concerns about immigration status, and a lack of appropriate health care facilities in one’s own community.Footnote ²⁹ A study in Chicago showed that racial and ethnic minorities and sexual and gender minority populations reported even greater disparities in accessing high-quality, culturally competent care.Footnote ³⁰

Patients with limited English proficiency and health literacy are also more likely to have worse health outcomes.Footnote ³¹ The lack of patient–clinician language concordance, limited access to professional interpreters, and a singular communication type may also contribute to ineffective and/or misunderstood health communication.Footnote ³² Part of these concerns were highlighted in a study that found African American men were less likely than White men to have health-related knowledge about the symptoms and the mechanisms of the spread of COVID-19.Footnote ³³ These findings suggest that public health information may not be disseminated in ways that are equitable or equally understandable to different groups. In fact, due to concerns around COVID-19 exposure, 40.9 percent of US adults, disproportionately African American and Latino adults, persons with disabilities, and persons with underlying health conditions, delayed or avoided seeking medical care for urgent problems.Footnote ³⁴ Concerns about COVID-19 exposure, and potentially delays to care once a person becomes ill, could potentially increase the risk of severe illness and death once medical care is sought. Delay or avoidance of medical care, including emergency and routine care, could contribute to reported excess deaths directly or indirectly related to COVID-19.Footnote ³⁵

VI Economic Factors Driving Disparities

Due to existing economic inequality, African American and Latino populations have been disproportionately impacted by the social and financial effects of the COVID-19 pandemic.

Across the United States, racial and ethnic minorities are overrepresented in the critical infrastructure workforce, such as food retail and grocery, public transportation, and allied health professions, areas that offer no option to telework, thus making it difficult to physically distance outside of the home and therefore increasing the risk of being exposed to COVID-19.Footnote ³⁶ Although racial and ethnic minority populations are at a higher risk of getting infected since they are more likely to be essential workers and, as a result, in constant contact with other people, they are dependent on their jobs in order to financially support themselves and/or their families. Dependency on essential work can pose a serious issue for these populations, particularly when it comes to self-isolation after a potential COVID-19 exposure. After exposure to the virus, symptoms may take from two to fourteen days to appear, although the Omicron variant causes symptoms to appear in one to three days. A variable proportion of infected persons may remain asymptomatic or experience only very mild symptoms.

Many essential workers simply cannot afford to miss any time away from work and may have limited access to at-home antigen tests, or a laboratory test, to establish the presence or absence of COVID-19 infection. Persons who work in essential sectors may also have greater difficulty in following evidence-based guidance, because of structural factors and a lower level of access to COVID-19 testing and care facilities.Footnote ³⁷

The disproportionate representation of racial and ethnic minorities in these employment categories has increased their risk of exposure to the virus and thus led to higher COVID-19 infection rates in populations with health disparities. Although some individuals have been able to work remotely or shelter at home, people with lower incomes typically live with at least one household member who is an essential worker, resulting in a higher likelihood of exposure to COVID-19. Furthermore, racial and ethnic minority populations in the United States are more likely to live in more crowded conditions and multi-generational households, making it extremely difficult to isolate if and when a household member becomes exposed to or infected with the virus.Footnote ³⁸ One study reported that among Latino adults at high risk of severe illness, about 64 percent lived in households with at least one worker who was unable to work from home, compared to approximately 56 percent among African Americans and 46 percent among Whites.Footnote ³⁹

Distance learning, telework, and access to information has posed its own set of challenges for populations with health disparities. Remote learning and/or work requires a computer and/or a smartphone with an unlimited data plan, broadband Internet access, and the knowledge of how to use such technology.Footnote ⁴⁰ The likelihood of having accessible and reliable home broadband Internet available is lower among non-White individuals, those with a lower income, and individuals living in a rural community.Footnote ⁴¹ As a result, there is a greater reliance on smartphones for online access among younger adults, Latinos, African Americans, and lower-income individuals.Footnote ⁴² In the first year of the pandemic, this digital divide was dramatic, particularly in distance learning for children. Households without access to the Internet, or that share a smartphone hotspot between multiple family members, had greater difficulties in attending online courses and completing homework assignments. Although some schools and cellphone companies offered mobile hotspots, policy efforts are needed to support affordable access to broadband Internet, particularly in underserved communities. The pandemic has revealed a structural inequity in society that can be addressed by making access to broadband Internet a public good that is managed like a utility, so that low-income households have sufficient access to it.

VII Disparities-Related Challenges

As vaccines became more widely available in the United States, there have been significant challenges with vaccine uptake by racial and ethnic minorities. National surveys showed that African American adults were less likely to say they would get the vaccine in May 2020, with only 54 percent reporting that they would definitely/probably get a vaccine to prevent COVID-19. By September 2020, there was a significant decline in the percentage of US adults who said they would definitely/probably get the vaccine, with the lowest percentage among African Americans compared to all other racial and ethnic groups (Figure 5.1). However, as of February 2021, an increase in the percentage of African Americans who reported they would definitely/probably get a vaccine to prevent COVID-19, or have already received at least one dose, was observed (Figure 5.1). An increase in willingness to get a COVID-19 vaccine could be tied to factors such as change of attitude toward the vaccine.Footnote ⁴³ Efforts to increase trust in underserved communities are needed as vaccine willingness among racial and ethnic minorities has not been static over time (Figure 5.1).

Figure 5.1 Percentage of US adults who say they will definitely/probably get a vaccine to prevent COVID-19 or have already received at least one dose

Source: www.pewresearch.org/science/2021/03/05/growing-share-of-americans-say-they-plan-to-get-a-covid-19-vaccine-or-already-have/

Over the course of 2021, vaccination prevalence steadily increased for all racial and ethnic groups, although the prevalence among African Americans generally lagged behind that of other groups.Footnote ⁴⁴ However, during the second half of 2021, the definition of being sufficiently vaccinated started to be questioned. As a new variant of the virus began to circulate, it became clear that a third dose of the vaccine (i.e., a booster) would be necessary for individuals to maintain their level of protective immunity. Despite vaccines being widely available from multiple sources, racial and ethnic disparities were observed. As of February 1, 2022, in twelve states, the prevalence of obtaining a booster dose of vaccine was lowest among Latinos, followed by American Indians and Alaska Natives as well as African Americans.Footnote ⁴⁵

A critical factor in vaccine hesitancy and mistrust is the deep and justified lack of trust many populations have in the health care system and clinical research. This distrust is deeply rooted in decades of well-documented examples of racist exploitations that have affected African Americans,Footnote ⁴⁶ as well as Latinos, American Indians, and Asian populations, who have also experienced unequal care and scientific mismanagement. Other key factors, such as the perceived risk of the disease and the perceived safety of the vaccine, influence an individual’s willingness to be vaccinated against COVID-19.Footnote ⁴⁷ Among US adults, the main reason people reported that they were not likely to get vaccinated was due to concerns about the side effects and safety of the COVID-19 vaccine, and these concerns were highest among Latino adults (Table 5.2).Footnote ⁴⁸

VIII The National Institutes of Health Response to COVID-19 Disparities: The Community Engagement Alliance Against COVID-19 Disparities

In response to the pandemic public health emergency and related disparities, NIMHD partnered with the National Heart, Lung, and Blood Institute and the National Institutes of Health (NIH) Office of the Director to develop and launch the Community Engagement Alliance (CEAL) Against COVID-19 Disparities.Footnote ⁴⁹ The initial goal of CEAL was to promote the inclusive participation of underrepresented minorities in the COVID-19 vaccine trials, which were supported by NIH and subsidized by the US government. CEAL leveraged NIH-funded investigators with many years of experience in community-engaged research to form coalitions of community-academic-public health partnerships in eleven states to address misinformation, promote trust in science, and engage communities in the clinical trials. Through the CEAL initiative, the NIH expects to increase the use of mitigation practices that can reduce the spread of COVID-19, disseminate accurate information about the spread of the virus, the safety and efficacy of vaccines and treatments, and increase the public’s understanding of how science works.

To address COVID-19 disparities, CEAL needed to address the widespread misinformation about the vaccine and the pandemic with transparent and easy-to-understand facts based on scientific evidence in the communities most affected by COVID-19. The high level of distrust in African American and Latino communities of any governmental-, pharmaceutical-, or university-sponsored study or therapeutic undergoing evaluation through clinical trials necessitated a strong message and campaign to promote trust in science. A key component was to deliver the message clearly and through trusted local messengers that knew their communities. These included clinicians, nurses, faith-based leaders, and leaders from the community who were respected role models. This diverse partnership network was leveraged by all the sites to engage in local and media events with widespread use of social media. CEAL is built on full partnerships with community-based organizations and is guided by the principle of “Move at the Speed of Trust.” The CEAL initiative can be used as a model by other governmental and large organizations to develop partnerships with communities in the quest to mitigate COVID-19 disparities. In the future, CEAL may function as a community-engaged research platform to advance health equity by addressing other pandemics.

IX The NIH Response to COVID-19 Disparities: Rapid Acceleration of Diagnostics for Underserved Populations

The NIH-wide effort to increase testing for COVID-19 in underserved and vulnerable populations was funded as a community-engaged research initiative in 2020 and named Rapid Acceleration of Diagnostics for Underserved Populations (RADx-UP).Footnote ⁵⁰ Although RADx-UP was part of a larger effort to develop and implement tests for COVID-19, the decision to allocate substantial resources over the course of four years to this effort for underserved populations reflected NIH leadership’s commitment to addressing COVID-19 disparities. To date, RADx-UP has funded seventy-nine testing projects in underserved and vulnerable communities, sixteen projects focused on school systems to promote safe return to school, twenty-one research studies on the social, ethical, and behavioral consequences of the pandemic, and a new Coordination and Data Collection Center. Collectively, these sites are in all fifty states, the District of Columbia, Puerto Rico, and the Pacific Island territories. This NIH-wide effort is co-led by NIMHD, the National Institute on Aging, and the NIH Office of the Director. The goal is to understand factors that contribute to the high, disproportionate burden of COVID-19 in underserved communities and to develop strategies for addressing these disparities.

The funded projects are using principles of community-engaged outreach to work closely with communities that have been disproportionately affected by COVID-19. NIH has defined common data elements that all projects will be required to collect using standardized measures to subsequently share data in a common depository for general research use. School projects were funded to generate data on the risk of children returning to school in the 2021–22 school year; all the schools had at least 50 percent of their children who were eligible for free or reduced meals. As the pandemic has evolved, RADx-UP has launched programs that will include addressing vaccine uptake in these communities linked to the testing strategies. Efforts to create synergy between RADx-UP projects and CEAL teams are also underway.

X The Centers for Disease Control and Prevention Response to COVID-19 Disparities: Vaccine and Health Equity

The Centers for Disease Control and Prevention (CDC) has responded to racial and ethnic disparities in COVID-19 by providing funding to jurisdictions, health departments, and organizations to promote COVID-19 vaccination among African Americans and Latinos.Footnote ⁵¹ Funding has been spread across the United States and its territories, and has included awards to 64 jurisdictions, 108 health departments, and 71 organizations. The purpose of the funding has either been to (1) launch new programs and initiatives to increase vaccine access, acceptance, and uptake in communities disproportionately impacted by COVID-19; (2) support efforts to address COVID-19 health disparities; (3) support COVID-19 prevention and control using community health worker services; or (4) support training, technical assistance, and evaluation to community health worker services involved in COVID-19 response efforts.

Additionally, the CDC has prioritized vaccine equity for racial and ethnic minority groups through funding to thirty-four national, state, tribal, and community organizations through their existing Racial and Ethnic Approaches to Community Health (REACH) program, as well as eight national organizations, four medical organizations, and three national foundations.Footnote ⁵² Originally launched in 1999 and most recently renewed in 2018, the goal of the REACH program has been to improve health, prevent chronic diseases, and reduce health disparities among racial and ethnic populations with the highest risk or burden of chronic disease using culturally tailored interventions to address preventable risk behaviors. By providing vaccine-specific funding through this program, the CDC has leveraged the network of organizations supported by REACH to further address disparities in COVID-19 vaccination.

XI Current and Future Directions

Further efforts must be made to build trust, dispel myths, and directly address the misinformation that exists. This can be done through the effective use of credible messengers within communities who should be credentialed professionals and community members. The key is that the information that is shared must be factual, reliable, and consistent, and generally avoid the subtlety of uncertainty that accompanies academic discourse. Elected representatives, policymakers, economists, educators, public health professionals, faith-based leaders, and local community leaders must join in a multidisciplinary, coordinated effort to actively and systematically advance health equity. Cultural competency training is fundamental to engage all entities, including local community leaders and stakeholders.

We have an obligation to take concrete steps to dismantle systematic inequities in order to improve the lives of people experiencing disparities. To reduce disparities in COVID-19 outcomes, structural and institutional racism and biases in health care systems must be addressed through policy and legal change, and proportionally representative inclusion at all levels of decision-making. Disparities and inequities in health are not caused by one factor and as such cannot be eliminated by a single intervention. Similarly, the root causes of disparities in any health indicator, including COVID-19, are multi-factorial and require both short- and long-term strategies. These strategic interventions and investments should focus not only on broader health insurance coverage and improvements in health care, but also on building healthy communities for all by addressing the social and structural issues affecting the neighborhoods of populations with health disparities; these issues include quality of schools, the availability of jobs paying a living wage, access to broadband Internet, and other structural determinants. The most sustainable impact will be achieved through long-term interventions and investments – those that are designed to achieve equity – that address the social and structural determinants of health.