What About Us? The Marginalization of Serious Mental Health and Substance Use

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COMMENTARY

The fairest rules are those to which everyone would agree if they did not know how much power they would have. – John Rawls

When the welcome news of effective vaccines for COVID-19 arrived in December 2020, the country shared a collective sigh of relief. Yet, the hard work was still in front of us. One fact always remains true in medicine: We have limited resources (ie, manpower, medications, hospital beds, organs, etc) with which to treat the population. In this instance, the overriding question was how would we, as a society, determine who gets the first shots?

Three primary ethical frameworks have guided COVID-19 vaccine allocation and prioritization in the United States: those formulated by the Centers for Disease Control and Prevention (CDC),^1,2 the National Academy of Sciences,³ and Johns Hopkins University’s Center for Health Security.⁴ Unfortunately, a review of the frameworks reveals a relative exclusion of patients with serious mental illness (SMI) and the practitioners who treat them.⁵ This raises many important questions: How is it that, yet again, patients with SMI and substance use disorders (SUD) have been marginalized, in this instance from vaccine allocation protocols? What are the clinical and ethical imperatives to ensure there is equity in access? And how can mental health professionals promote a true community of immunity?

Predisposition to Higher Mortality Rates

The 3 frameworks’ prioritization schemes are summarized in Table 1, and a quick study of the interrelated epidemiological and ethical grounds upon which they are based makes it even more surprising that there is no explicit inclusion of patients with SMI and SUD. Phase 1b of the National Academy of Sciences framework prioritizes adults with comorbid conditions that place them at significantly higher risk of illness and death from COVID-19, as does phase 1c of the CDC guidance. Johns Hopkins also places in tier 1 those at greatest risk of severe illness and death, and their caregivers. Results of high-quality research conducted before the pandemic have repeatedly identified that patients with SMI have life expectancies 25 years lower than those of the general population, mostly due to rates of medical comorbidities that are 2 to 3 times higher than average.⁶

Table 1. Empirical Facts and Ethical Reasoning Supporting Prioritization of SMI for COVID-19 Vaccination

A study of more than 25,000 patients showed that even in the integrated Kaiser health care system, patients with SMI were 1.5 times more likely to have a number of serious and chronic health conditions, including obesity, diabetes, and cardiovascular disease.^7,8 Many of these same conditions are associated with a higher risk of morbidity and mortality from COVID-19.⁹ Indeed, data from China indicate that the SMI cohort is at higher risk of contracting the virus, developing severe cases of COVID-19, being hospitalized, and dying.¹⁰ Individuals with SUD, especially opioids, are also at elevated risk of serious illness and death both from COVID-19 and overdoses related to pandemic-induced isolation and stress. Yet so far, in terms of SUD, states have prioritized only those with tobacco use disorder.¹¹

Phase 2 of the National Academy of Sciences prioritization scheme does specifically list and include individuals in homeless shelters and group homes; those with disability and mental illness; and those in prisons and jails. These populations are often overlapping: The percentage of patients with serious mental illness who are homeless is estimated to be as high as 30%,¹² and the prevalence of mental illness among those incarcerated in jails and prisons is between 15% and 20%.¹³ When the first wave of the virus hit New York, the strongest factor associated with case fatality rates, after age, was schizophrenia spectrum disorders.¹⁴

These figures alone would support giving individuals with mental illness prioritization for vaccination. Vaccination of the significant population of individuals with SMI who live in various congregate settings is often the most feasible, and hence ethically compelling, means of protecting residents and caregivers from the virus. Many patients with SMI may find it extremely difficult to adhere to strict infection control protocols, and limited access to mental health care may lead to worsening of symptoms that then magnify risk of infection.¹⁵

The intrinsic symptomology of SMI and substance use—such as paranoia, apathy, depression, and disorganization, as well as the psychosocial context that existed even before the pandemic, such as isolation, poor self-care, unemployment, and fear of the medical establishment—makes this population meet almost every definition of vulnerability.¹⁶ A 2016 policy paper in Psychiatric Services opined that the adverse social determinants of health for the SMI population are so entrenched and significant that, ethically, they should constitute a distinct category of health care disparity. If such a designation were formally recognized, it would obviously require vaccine and other potential therapeutic allocation frameworks to rethink the prioritization of SMI.¹⁷

In the past, thought leaders as diverse as Pope John Paul II and President Harry Truman stated, in essence, that “a society will be judged on how it treats its weakest members.” Prioritizing COVID-19 vaccination for individuals with SMI and SUDs, people who have long borne a stigma in American health care, promotes the “equal concern” principle of the National Academies. This principle encompasses the idea that every individual has intrinsic worth, dignity, and value, and such prioritization would answer the CDC’s call to remove unfair and avoidable barriers to vaccination as a matter of justice. Even when the scenario is viewed from a classic public health ethics perspective—as De Hert has persuasively argued—protecting the health of the public requires reducing exposure among those cohorts with high probability of exposing others, and among those least likely to take steps to prevent transmission of the virus.¹⁸

Given these formidable scientific and ethical arguments for the vaccination of those with SMI and SUD, their comparative neglect in major allocation frameworks likely reflects long-standing systemic social determinants of mental health treatment. These determinants have resulted from lack of economic parity, intrinsic social stigmatization, cultural bias, absence of legal representation, and political disenfranchisement, among many other complex and unjust causes.¹⁹

Vaccination Obstacles

The ethical impetus to ensure COVID-19 vaccinations for individuals with SMI and SUD becomes even more urgent when the external and internal obstacles to vaccination among this population are considered. These obstacles are far more formidable than those facing other cohorts who are ranked higher in the allocation protocols. There is a disturbing dearth of research on routine preventive vaccination in the SMI and SUD population, although it is known that the cohort has very low rates of routine vaccination relative to the general population. More encouragingly, results of a recent pilot quality improvement project, involving a collaboration with the local public health department, increased preventive vaccination rates in a community outpatient mental health clinic.²⁰ Recent articles offer recommendations for overcoming systems- and individual-level barriers to COVID-19 vaccination for individuals with SMI and SUD, respectively (Table 2).^11,21

Table 2. Obstacles to Vaccination (and how to overcome them)

Individuals with SMI and SUD lacked parity in health care before the pandemic, and COVID-19 has massively exacerbated existing inequalities. These individuals often do not have access to the primary means of health care delivery and of arranging vaccine appointments in the pandemic: electronic communication technology. Patients with SMI often lack the knowledge, skill, and infrastructure to utilize it even when it is available. Internal obstacles only compound these external barriers. These include mistrust of the health care system (due to past histories of abuses), low health literacy about COVID-19, and lack of information about the vaccine. A recent set of interviews with individuals with SUDs assessed vaccine readiness and identified significant mistrust among respondents.²² In 2020, the Addiction Policy Forum interviewed 87 individuals about their readiness to receive the COVID-19 vaccine; all were either using substances, in treatment for substance use, or recovering from substance use disorders. Just 45% said they were ready immediately; of the rest, 8% said they would be ready after a delay, 23% were uncertain, and 25% were unwilling to take the vaccine. The reasons participants offered to explain their hesitancy included concerns about the rapid development of the vaccine, potential adverse effects, potential interactions with current medical problems, doubt that they were at serious risk for developing COVID-19, and mistrust of the government.

Mental Health Professionals

Not only patients with psychiatric disorders but also the practitioners who treat them have reason to fear being in the back of the vaccination queue. Health care workers are in phase 1a of the CDC guidance, high-risk health workers are in phase 1a of the National Academies of Science allocation protocol, and Johns Hopkins includes in tier 1 those most essential to sustaining the ongoing COVID-19 response. While most readers of Psychiatric Times^TM would likely assume that psychiatrists and other mental health practitioners would be included in all of these phases/tiers, this assumption was not widely shared outside of circles of mental health professionals.

In December, right after the United States Food and Drug Administration’s emergency use authorization of the Pfizer vaccine, Forbes reported that mental health workers feared they would be left out of vaccine protocols.² This is because state governments exercise considerable independence in how closely they follow national recommendations for allocation. Public health officials and those in the media may not appreciate that, from the beginning of the pandemic to this day, psychiatrists and other mental health professionals have been on the frontlines of intensive care units and emergency departments treating patients, often doing so without adequate personal protective equipment.²³ Many other mental health practitioners were repeatedly exposed to high-risk patients whose disorders made them unable or unwilling to follow infection-control practices or to take advantage of telehealth options, necessitating in-person visits at community outpatient clinics, inpatient psychiatric units, residential care facilities, and substance use treatment programs.²⁴

In response to this neglect of the mental health workforce in vaccine allocation schemas, the National Association of State Mental Health Program Directors, the National Council of Behavioral Health, and the National Mental Health Corporations of America wrote to Robert R. Redfield Jr, MD, then the CDC director, prior to the Advisory Committee on Immunization Practices issuance of its allocation framework. The mental health organizations argued that mental health practitioners “should be categorized as frontline providers, therefore making them eligible to receive COVID-19 vaccine in its earliest phase of distribution.”²⁵ In May 2020, Elinore McCance-Katz, MD, PhD, who at the time was assistant secretary for Mental Health and Substance Use, had already asserted “that the services provided in mental and substance use disorder treatment programs across the country are essential medical services.”²⁶

Allocation Advocacy Aid

The American Psychiatric Association (APA) has joined these organizations in calling upon its members to actively promote equity in COVID-19 vaccine allocation, issuing a guidance document on the role of the psychiatrist.²⁷ The document affirms that “psychiatrists are uniquely positioned to address many of the public health challenges” that prevent the ideal of equitable vaccine distribution from becoming a reality. The APA lays out practical advice to help psychiatrists educate and counsel their patients about vaccination, including information on how to locate and obtain vaccination in various states.

Psychiatrists know better than almost anyone that an efficacious vaccination campaign directed toward patients with SUD and SMI is necessary but not sufficient to ensure shots in arms. What is most crucial to overcoming vaccine hesitancy and encouraging motivation in these populations is to build on the strength of the therapeutic alliance. Patients trust the recommendation of their psychiatrists or other mental health professionals about vaccination.^11,21 There is a compelling obligation for mental health professionals to talk to their patients at every possible opportunity about the benefits of COVID-19 vaccination using a technique I call “The 4 Es” (Table 3).

Table 3. The 4 Es

Psychiatrists who work in integrated care settings, hospitals, and public health clinics are ideally placed to educate medical colleagues and public health officials about the ethics of COVID-19 vaccination for persons with SMI and SUD. Similarly, local departments of psychiatry and professional societies can provide information explaining that these 2 groups are at elevated risk of COVID-19, and that many individuals within these cohorts—with appropriate facilitation—will accept the vaccination and should have it offered to them, along with other marginalized populations.²⁸

As the momentum for mandatory vaccination gathers, psychiatrists have an ethical duty to uphold the values of informed consent and autonomous decision-making among individuals with SUD and SMI, who may be at elevated risk of coercion.²⁹ For example, generally speaking, vaccination should not be required for voluntary admission to a psychiatric hospital or residential treatment program. Instead, staff should work collaboratively with the patient to persuade them to understand how vaccination meets their own treatment goals and also protects their fellow patients and caregivers.

Concluding Thoughts

The national vaccine rollout is showing signs of success, even while premature abandonment of public health measures and the growing dominance of variants threatens a fourth wave of infections.³⁰ Our advocacy on behalf of our patients and our profession can significantly shift the direction of the pandemic, and even further, set a precedent for the infectious disease outbreaks that are unfortunately inevitable in the future. Securing equity for our patients and ourselves in COVID-19 vaccination is also a critical step in the long and vital walk toward the larger goals of destigmatization and justice in psychiatric care. For patients with SMI and SUD and those who care for and about them, COVID-19 may fulfill both meanings of a crisis: It is a challenge and an opportunity. The pandemic can serve as professional impetus and ethical rationale to redouble our efforts to achieve equity, so that when the next public health emergency strikes, we are all encompassed in the community of immunity.

Dr Geppert is a professor in the Department of Psychiatry and Internal Medicine and director of ethics education at the University of New Mexico School of Medicine in Albuquerque. She is also a health care ethicist with the Ethics Consultation Service of the Veterans Administration National Center for Ethics in Health Care, and an adjunct professor of bioethics at the Alden March Bioethics Institute of Albany Medical College.

References

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