People with Disabilities Not Counted in Guidance Aimed at Equitable Allocation of a COVID-19 Vaccine

On October 2, a month after releasing the preliminary draft framework for public comment, the National Academies of Science, Engineering and Medicine (NASEM) released its final Framework for Equitable Allocation of COVID-19 Vaccine.

The National Institutes of Health and the Centers for Disease Control and Prevention first commissioned NASEM to develop the framework in July. The Committee formed to do the work released its initial Draft in early September for four days of public input but continued to accept comments beyond the official deadline. DREDF’s comments were submitted to the Committee shortly before the release of the final report.

The final report differs very little from the draft with regards to people with disabilities. DREDF’s primary criticism of the draft framework is it never recognizes the disability community broadly as a group that is subject to elevated risks of severe disease from, and reduced resilience to, COVID-19 infection. These increased risks extend beyond physiology, due to long standing physical and programmatic healthcare barriers, systemic failures of accommodation/modification, and the potential application of discriminatory Crises Standard of Care and medical rationing policies during COVID-19 surges.

The final framework does not correct this problem in the draft and continues to include people with disabilities in fragmentary ways. For example, a high vaccination priority is given to older people in congregate settings such as nursing homes and other institutional facilities who have an elevated risk of infection and death and no control over their environment, but there is little or no mention of the 15% of nursing home residents who are between the ages of 31-64 years.

The final report includes a short descriptive paragraph on "People with Mental and Physical Disabilities" among descriptions of other subpopulations at greater risk from COVID-19, but ultimately people with disabilities, people who are undocumented, and people who are homeless are omitted from a discussion of that impact "due to a lack of COVID-specific epidemiological data."

Furthermore, neither the draft nor the final framework say whether the allocation would prioritize disabled people who receive home and community-based services to help with daily life activities such as eating and grooming, and other necessary tasks such as grocery shopping and managing recordkeeping or correspondence. These individuals who also at greater risk of exposure to the virus due to needed regular ongoing contact with personal care assistants, many of whom may work with multiple disabled employers. The Committee’s allocation principles acknowledge and prioritize individuals who have specific comorbid conditions such as Chronic Obstructive Pulmonary Disease and Cystic Fibrosis that increase the severity of the coronavirus mortality rate, but fail to recognize that coronavirus research will take a long time to reach considerations for whether and how less common medical conditions interact with the coronavirus, or give any consideration to the potential impact of discriminatory medical rationing policies.

Crisis Standards of Care guidelines around the county broadly incorporate "comorbidities" that could be used to assign lower prioritization for, or even completely exclude, COVID-19 treatment for patients with "severe or profound intellectual disabilities," "advanced untreatable neuromuscular disease . . . requiring assistance with activities of daily living or requiring chronic ventilatory support," or even just "baseline functional status" [such as]  "loss of reserves in energy, physical ability, cognition and general health."

This last category of justification for not providing COVID-19 treatment gives tremendous discretion to providers, who are likely to use their own stereotypes and assumptions about quality of life with a disability when assessing if a disabled patient should receive COVID-19 treatment, especially when guidelines usually leave "severe" and "advanced" undefined. The likelihood of being denied treatment, or even of having one’s own personal ventilator taken and repurposed for another patient medically judged to be more "viable," has discouraged people with disabilities from seeking necessary medical care, due to coronavirus infection or additional ongoing healthcare needs. By not thoroughly assessing or considering any of this information, the vaccine allocation Committee leaves thousands of people with disabilities in the unfair position of not having the “right” diagnosis to unlock early access to a COVID-19 vaccine, even when those same conditions could easily lead to the denial of COVID-19 treatment and ventilator use.

DREDF acknowledges the Committee’s explicit attempts to incorporate racial and ethnic equity within the framework through referencing the Social Vulnerability Index (SVI) developed by the Centers for Disease Control (CDC) and prioritizing critical workers in high risk industries. We also support the Committee’s assertion that all prioritized critical workers, regardless of their citizenship status, should receive the vaccine, as well as the application of equitable principles to give individuals who are homeless or living in shelters priority access to a vaccine. The final report also includes welcome necessary clarification that people living in "group" homes for persons with mental health disabilities should be prioritized, though it remains unclear whether people with behavioral health needs are fully included in this application of the allocation principles. In the end, the Committee’s treatment of people with disabilities remains superficial and ad hoc, an approach that seems to signal that "including some is better than nothing." We strongly disagree.

The Committee conducted a webinar on October 2 at 7 AM Pacific/10 Eastern to introduce its final report and explain their approach to equity, emphasizing that they did not explicitly prioritize any specific racial or ethnic group. But the Committee’s underlying determination to address the structural factors that contribute to racism without specifying race or ethnicity only works, if it works at all, because there has been sufficient groundwork and research put into how social determinants of health affect people of non-white racial and ethnic groups, and because society is willing to examine and correct the deeper causes and components of structural racism.

Disability communities, which intersect with all other vulnerable demographics, have not been sufficiently identified, researched, or even fully acknowledged as groups that are subject to health and healthcare disparities, reduced access to social determinants of health, and an overwhelming tendency to be defined through medical diagnosis alone. The final vaccine allocation report states that "[h]aving a disability, in and of itself, does not put individuals at a higher risk for SARS-CoV-2 infection or severe COVID-19 illness—according to CDC, the key factor lies in the likelihood of having serious underlying comorbid conditions (CDC, 2020h)." This statement illustrates how the medical assumption that “proper diagnosis = proper treatment = people getting fixed” obscures the presence of deeply embedded disability stereotypes and ableism in our healthcare system, pandemic notwithstanding.

Ultimately, none of us, including the National Academies itself, knows how influential its equitable framework will be on the federal, state, local and tribal governments in charge of implementing an allocation plan once a vaccine or number of vaccines is approved; all agree there will inevitably be some period of scarce supply for a vaccine. All these levels of government are currently engaged in working out what their vaccination priorities and plans might be.

DREDF calls on them to not overlook people with disabilities as a demographic particularly at risk because of COVID-19, subject to long standing health and healthcare disparities, and forced to play "catch-up" in terms of data collection and analysis. We hold governments and local authorities to account for ensuring physically and programmatically accessible vaccination sites and developing innovative ways to deliver vaccination to individuals who are immunocompromised or have conditions that will not allow them to take public transportation or receive vaccinations in common settings. And we remind our scientists, healthcare providers and health institutions that the failure to solicit and fully incorporate the voluntary participation pf people with disabilities in vaccine development, human trials, and allocation policies only perpetuates the inequitable consequences of a “lack of COVID-specific epidemiological data.”