September 4, 2020
Committee on Equitable Allocation of Vaccine for the Novel Coronavirus
National Academies of Sciences, Engineering, and Medicine
500 5th St NW
Washington, DC 20001
Committee Members:
Thank you for the opportunity to comment on the Discussion Draft of the Preliminary Framework for Equitable Allocation of COVID-19 Vaccine.
Not Dead Yet is a national disability rights group run by people with disabilities, working to give voice to opposition to nonconsensual withholding of life-sustaining medical treatment and to oppose assisted suicide laws and active euthanasia. We also oppose discriminatory healthcare rationing, “quality of life” judgments and other forms of medical discrimination against people with disabilities.
While we are grateful for this opportunity, we are also appalled by the extremely short less than four-day comment period on a proposal that is more than 100 pages long on a life-and-death issue facing all Americans, especially those of us who are most likely to become seriously ill or die from COVID-19. The comment period should be formally extended and further developments of this framework by the U.S. Department of Health and Human Services must provide a more genuine, realistic, fair and widely publicized opportunity for public input.
Not Dead Yet’s comment will address two issues: a) the Phase 1b identification of “comorbid and underlying conditions that put individuals at a significantly higher risk of severe COVID-19 disease or death” and b) the failure to include and prioritize all congregate settings for seniors and people with disabilities.
People with Disabilities Who Faced Potential COVID-19 Triage Should Be Prioritized
Throughout the COVID-19 pandemic, people with disabilities have been threatened with denial of treatment under crisis standards of care (CSC). Though the details varied, the bottom line is that, in the event of a shortage of equipment, supplies or staffing, people with disabilities would be place at the back of the line for treatment or excluded altogether. Disability discrimination was discovered to be so extreme and pervasive in CSC policies that coalitions of disability rights attorneys and organizations undertook efforts to challenge these policies as violations of federal anti-discrimination laws under the jurisdiction of the HHS Office for Civil Rights.[1]
On March 28, 2020, after receiving the first four formal complaints against these policies, the Office for Civil Rights (OCR) issued a bulletin on Civil Rights, HIPAA, and the Coronavirus Disease 2019 (COVID-19).[2] It stated that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age. Decisions by covered entities concerning whether an individual is a candidate for treatment should be based on an individualized assessment of the patient based on the best available objective medical evidence.”
OCR has already reached settlements in Alabama, Tennessee, Pennsylvania, Utah, and Connecticut addressing the illegal exclusion of certain people with disabilities and older adults from access to life-saving treatment, reasonable accommodations to hospital visitation policies, accessibility of information on treatment, and other protocols. The content of these settlements, as announced in OCR’s public releases, clarifies that the challenged state CSC policies violate federal law.
Sadly, many other state and hospital CSC policies that still exist violate federal law. Yet nothing in the draft framework addresses these crucial issues and legal developments, and how they should relate to vaccine allocation priorities.
Beginning at page 62, line 1373, the framework describes the Priority 1b Population as “People of All Ages with Comorbid and Underlying Conditions That Put Them at Significantly Higher Risk.” The introduction to this first tier group states:
It remains unclear precisely which comorbid and underlying conditions put individuals at a significantly higher risk of severe COVID-19 disease or death. CDC continues to gather evidence on this topic, and lists the following as factors associated with an increased risk of severe COVID-19 disease: Cancer, chronic kidney disease, chronic obstructive pulmonary disease (COPD), immunocompromised state from solid organ transplant, obesity (body mass index [BMI] ≥30), serious heart conditions (e.g., heart failure, coronary artery disease, cardiomyopathies), sickle cell disease, and type 2 diabetes mellitus (CDC, 2020d).
The framework then states that the number of Americans with these specific conditions is too large to be manageable, so they could initially prioritize people with two or more of these conditions.
The framework section entitled “Rationale” relies on a few studies to support the list of priority conditions (page 64). The framework also acknowledges that the list could evolve as more research becomes available. It’s crucial that disability data be gathered in any such research going forward. While specific individual diagnoses may be viewed as “low incidence” and therefore may be treated as “unworthy” of research consideration, the medical community’s discrimination against people with disabilities has a profoundly negative collective impact on disabled people in the context of COVID-19.
Most of the prevailing crisis standards of care, the legal ones and the illegal ones, throw older and disabled people out of the lifeboat, putting them at the back of the line for COVID-19 treatment. This is often true, whether they have a condition that has been the subject of COVID research or not. For example, many people with spinal cord injuries and neuromuscular disabilities depend on breathing support and would face COVID-19 triage in a crisis, but they would not be defined as having COPD. And many individuals are significantly immunocompromised without having a transplant.
In a society that is increasingly “opening up” and making COVID-19 exposure more likely, those who would be denied treatment under CSC or triage policies should have priority to receive safe and effective vaccines under section 1b.
In addition, as noted by the Coalition of [sic: Consortium for] Citizens With Disabilities whose comments Not Dead Yet supports, we appreciate the many statements on the committee’s efforts not to base allocation on illegal, discriminatory measures. Disability should be added to those statements.
Moreover, we strongly support the committee’s efforts to acknowledge and address the prevalence of racial disparities in healthcare treatment and outcomes in the allocation framework, but more input on these appalling disparities must be obtained from the affected communities.
Not Dead Yet would also note that these disparities have directly impacted the denial of COVID-19 treatment to Black disabled individuals, such as in the case of Michael Hickson in Texas.[3] As stated by CCD, “the committee should include greater recognition of health disparities faced by people with disabilities,[4] including disparities faced by people with disabilities during this pandemic in particular.[5] While the committee does note the higher prevalence of certain comorbidities among some racial and ethnic minorities, it does not adequately consider the intersection of disability, age, and racial/ethnic minority status, including greater rates of disability among some racial and ethnic minorities.”
People who Live or Work in Congregate Settings Should Receive Priority in Allocation of a Vaccine
Not Dead Yet is deeply concerned about the framework’s narrow approach to establishing vaccine priorities with respect to congregate settings. At page 54, the framework only gives first tier priority to “those older adults living in congregate settings—such as nursing homes or skilled nursing facilities—and other similar settings.” A number of other types of congregate settings are left out, such as disability institutions that still exist in this country, settings that are too large to qualify as “group homes”, but are not defined as “nursing homes.” And “group homes” are only given second tier priority, despite having virtually the same risk factors as other congregate settings.
As discussed by CCD, “People with disabilities face a particularly high risk of complications and death if exposed to COVID-19,[6] and the severe outbreaks in institutional and congregate settings have meant an increase in exposure risk for many, as the committee has recognized in its discussion draft. The committee’s proposal does not adequately address that risk, and inappropriately separates congregate facilities into Phase 1 and Phase 2.”
Young people in nursing homes are also left out, unless they have (two of) the select comorbid conditions identified as priority 1b.
As detailed by CCD:
Some of the individuals left out of those priority categories in Phase 1b and Phase 2 may still receive the vaccine under the committee’s framework during Phase 1b and Phase 2 of vaccine allocation if they have a significantly higher risk or moderate risk due to comorbid conditions (defined by the report as having two or more comorbid conditions or one comorbid condition, respectively). However, that list of comorbid conditions (see page 62, lines 1379-1382 and page 69 lines 1578-1585) does not reflect disability status and is not broad enough to include all people with disabilities in congregate settings left out of those priority categories.
People in home and community-based settings should also receive priority for a vaccine when, as a result of disability, they are unable to effectively distance from others outside their household. This includes individuals who receive personal care services (home-based “long term care” more recently referred to as “long term services and supports” or LTSS) that require close contact with one or more staff members who live outside the home. Those staff members should also receive priority in vaccine allocation.
Thank you again for the opportunity to comment on the vaccine allocation framework. Please contact me if you have any questions or would like further information at dcoleman@notdeadyet.org or 708-420-0539.
Sincerely,
Diane Coleman, J.D.
President & CEO
[1] https://www.centerforpublicrep.org/covid-19-medical-rationing/
[2] https://www.hhs.gov/sites/default/files/ocr-bulletin-3-28-20.pdf?fbclid=IwAR351WokrC2uQLIPxDR0eiAizAQ8Q-XwhBt_0asYiXi91XW4rnAKW8kxcog
[3] https://notdeadyet.org/2020/08/michael-hickson-disability-organizations-challenge-medical-futility-surrogate-decisions.html
[4] See https://www.cdc.gov/ncbddd/disabilityandhealth/features/unrecognizedpopulation.html, and https://www.cdc.gov/mmwr/volumes/67/wr/mm6732a3.htm?s_cid=mm6732a3_w
[5] https://ajp.psychiatryonline.org/doi/10.1176/appi.ajp.2020.20060780
[6] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7311922, https://ajp.psychiatryonline.org/doi/pdf/10.1176/appi.ajp.2020.20060780.