Not Dead Yet Comment On Draft COVID-19 Vaccine Allocation Framework

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Not Dead Yet, the Resistance

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.

Anita Cameron’s Letter Published In the Boston Globe!

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Assisted suicide is not the answer as long as racial disparities in care, disability bias go on

Updated August 31, 2020, 7:15 a.m.
Michael Martignetti wants a state program to assist his suicide if he is suffering from the effects of his disability (“Mass. should enact End Of Life Options Act,” Opinion, Aug. 13).
Head and shoulders photo of Anita Cameron, an African American woman with long dreadlocks and brown sweater.

I want to be able to live. I want my conditions effectively treated, and I want effective pain relief. But while Martignetti may assume he will get good care, Black people like me tend to receive inferior care because of racial disparities in cardiac care, diabetes, and cancer.

Black people like me with chronic pain avoid the emergency room because we are treated like drug addicts. Black people, particularly women, get sent home to die because we are not believed.
COVID-19 lays bare the racism and ableism behind rationing and so-called medical futility decisions. Black quadriplegic Michael Hickson was denied COVID-19 treatment because reportedly it was determined that he had little quality of life.
Doctors make mistakes. In 2009, in Washington state, my mother was determined to be imminently dying. She moved home to die, but her health improved. Eleven years later, she has her own home and is reasonably active.
Assisted suicide endangers seniors, sick people, disabled people, poor people, and Black and brown people. As long as racial disparities and disability discrimination exist in health care, assisted suicide cannot be the answer.
Anita Cameron
Rochester, N.Y.
The writer is director of minority outreach for Not Dead Yet, a national disability rights group opposed to assisted suicide.

Lisa Blumberg Published In the Sun Sentinel Regarding COVID-19 Healthcare Discrimination

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We’re all in this together, including the disabled

By LISA BLUMBERG
SPECIAL TO THE SUN SENTINEL
AUG 14, 2020

Florida may be the epicenter of COVID-19 with the number of confirmed cases skyrocketing over 500,000, but over 80% of states are seeing increased cases. While many of the young and able-bodied chafe at wearing masks and forgoing the beach, people with disabilities are concerned about having an equal shot in surviving the pandemic.

We who live in the community are appalled by the carnage in nursing homes. “They’re death pits,” Betsy McCaughey, a former lieutenant governor of New York who founded the Committee to Reduce Infection Deaths, has stated. “They’re crowded and they’re understaffed.” Roughly half of all virus deaths in Florida are linked to nursing homes.

Many disabled people are also people of color, and the crisis has highlighted racial disparities in health care. A Texas hospital denied COVID-19 treatment for Michael Hickson, a 46-year-old disabled Black man, who subsequently died on June 11.

Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

As Ariella Z. Barker, a fellow at the Harvard Kennedy School of Government with spinal muscular atrophy, stated, “a glance into our future will likely mimic Italy’s current predicament, where they are sacrificing the medically fragile.”

Early into the crisis, with rising fear that dire medical need would outstrip medical resources, members of the Harvard Medical School Center for Bioethics wrote chillingly, “typical medical options may soon not be available to everyone.”

Yet, as concerned health care providers have said, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgments about these patients’ quality of life and deny these patients justice in our healthcare system.”

Some states have had crisis standard-of-care plans that would make functional disability fatal in a pandemic. The Tennessee plan would have withheld curative care from people with neuromuscular conditions who need help with daily living activities as well as those with permanent brain injuries. Even without such socially biased and invalid instructions, doctors choosing between a disabled and a nondisabled patient with similarly urgent levels of need and chances for survival may be encouraged to give the nondisabled patient priority out of the belief that she might recover faster, freeing up scarce resources.

Such practices are civil rights violations. Federal nondiscrimination laws including the Americans with Disabilities Act, along with comparable state laws, prohibit medical rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it. This does not mean that disabled people jump to the head of the line in the crisis, but that they cannot be arbitrarily placed at the back of the line. These protections are absolute. They cannot be waived any more than protections against employment discrimination can be waived as job loss becomes endemic. They apply in good times and in bad.

Health care workers who are acting heroically must not be asked to pick and choose among their patients who could survive. We are all in this together.

Lisa Blumberg is a lawyer, writer and consultant to Not Dead Yet, a national disability advocacy group.

John Kelly: Older, ill and disabled people deserve choice-promoting services, supports

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The Greenfield Recorder published John Kelly’s letter opposing the Massachusetts assisted suicide bill on August 12. This excellent letter speaks for itself.

Older, ill and disabled people deserve choice-promoting services, supports

By JOHN B. KELLY

Head and shoulders photo of smiling short haired white man with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
John B. Kelly

I disagree with Joan Milnes’s call for passage of the assisted suicide bill now in the legislature (“Making a final choice about quality-of-life,” July 28). Her framing of it as an individual matter of “choice” about one’s so-called “quality-of-life” is prejudicial and dangerous.

Milnes’s example is her cousin Tony with cystic fibrosis who, at his doctors’ suggestion, had his life-sustaining ventilator turned off because he couldn’t speak or eat. But whereas Tony had the long-established privacy right — regardless of reason — to discontinue any bodily intervention, assisted suicide denies choice and endangers everyone. That’s because real choice resides with insurers, whose profit-maximizing denials of prescribed treatments can make you terminal.

Assisted suicide becomes the cheapest “medical treatment,” a “benefit” to be extended to evermore people. Choice belongs to abusive family and caregivers, who can bully you into requesting the drugs, witness the request, fetch the drugs, and even administer them without worry.

The bill grants complete immunity to anyone involved in the suicide. Doctor misdiagnosis puts 6 million people yearly at risk of severe harm, and 12% to 15% of people with a terminal diagnosis are not really dying. Hundreds of people have needlessly lost years of life to these mistakes. No choice there!

Quality-of-life judgments have fueled proposed state policies to deny disabled people ventilators if there is a shortage, and to deny treatment to people like disabled Texan Michael Hickson, whose hospital denied his family’s request for COVID-19 treatment and allowed him to die.

As someone commonly described as “paralyzed from the neck down,” I am constantly exposed to prejudicial messages that I would be better off dead. In our current crisis, we should be doing all we can to promote mutual aid and interdependence.

Older, ill and disabled people deserve choice-promoting services and supports like funded home care, not death on the quick and easy.

John B. Kelly is a long-time disability rights advocate and writer in Boston who is director of Second Thoughts MA: Disability Rights Advocates against Assisted Suicide.
Ed. Note: John is also the New England Regional Director of Not Dead Yet.

Michael Hickson: Disability Organizations Challenge Medical Futility & Surrogate Decisions

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On July 24th, ADAPT of Texas filed a complaint with the federal Department of Health and Human Services Office for Civil Rights (OCR) concerning the death of Michael Hickson, a Black Disabled man, at St. David’s South Austin Medical Center. The complaint called for . . .

“. . . an investigation of St David’s South Austin Medical Center’s conduct relating to Mr. Michael Hickson, a person with multiple physical and cognitive disabilities, who died at the hospital on June 11, 2020, as the hospital refused to provide him treatment for his COVID 19, because of his disabilities. One of the doctors, in response to Mrs. Hickson asking if the reason they would not treat him was because of his lack of quality of life due to his disabilities, responded yes.”

That conversation was audio recorded and a link to that as well as a video of Mr. Hickson were included in an earlier NDY blog. In addition, NPR reporter Joe Shapiro, who has long followed the disability rights movement, authored perhaps the most thorough media article on Mr. Hickson’s story so far: One Man’s COVID-19 Death Raises The Worst Fears Of Many People With Disabilities.

A week later, on July 31st, the National Council on Independent Living filed a separate OCR complaint, joined by seven other national organizations, including NDY:

  • American Association of People with Disabilities  AAPD
  • Autistic Self Advocacy Network  ASAN
  • Brain Injury Association of America  BIAA
  • Center for Public Representation
  • National Council on Independent Living  NCIL
  • Not Dead Yet
  • Partnership for Inclusive Disaster Strategies
  • World Institute on Disability  WID

Both OCR complaints point out that the hospital’s decision to withhold treatment from Mr. Hickson was not, at that time in early June, based on a shortage of resources caused by the number of patients being treated for COVID-19. The hospital told NPR that the decision was made by “a medical team — of doctors, palliative care specialists, a chaplain.” The doctor also told Mrs. Hickson that further treatment would be “futile.” This suggests that the hospital made its decision under the infamous Texas “futile care” law, part of the Texas Advance Directives Act.

The ADAPT of Texas OCR complaint specifically addressed the futility issue as follows:

“We also request you look at the Futile Care section of the Texas Advanced Directive Act of 1999 to see if it violates the Americans with Disabilities Act, and/or Section 504 of the Rehabilitation Act of 1973 or any other relevant federal and/or state civil rights legislation.

“In addition, we also request you look at the process to see if the South Austin Medical Center’s committee, that concurred that supports could be withdrawn from Michael Hickson, had any input from an objective person/organization, knowledgeable about living with a disability, outside of the hospital personnel.”

The decision was also agreed to by an interim guardian appointed by the court while a guardianship proceeding between Mr. Hickson’s wife and sister was pending. The NCIL OCR complaint specifically addressed the guardianship issue:

“The court-appointed agency providing Guardianship for Mr. Hickson, Family Eldercare, acting in that capacity, approved the care and treatment regimen proposed by St. David’s South Austin Medical Center which resulted in Mr. Hickson’s death. Under Texas state law, “Sec. 1001.001(a) a court may appoint a guardian with either full or limited authority over an incapacitated person as indicated by the incapacitated person’s actual mental or physical limitations and only as necessary to promote and protect the well-being of the incapacitated person.” The role of the appointed Guardian for Mr. Hickson was to promote and protect his well-being, not be complicit in the steps that would result in the end of his life. Family Eldercare perpetuated the medical provider’s discrimination against Mr. Hickson and ultimately provided permission to execute the decisions which led to Mr. Hickson’s death. Family Eldercare in so doing, acted in violation of the purpose of their role as Guardian agency and in a discriminatory matter, acceding to the medical provider’s opinion that Mr. Hickson’s disabilities justified withholding life-sustaining care and services.”

Meanwhile, as a result of at least 11 OCR complaints challenging COVID-19 Crisis Standards of Care, involving healthcare rationing or triage policies that discriminate against seniors and disabled people, OCR has explicitly found that policies that deny treatment based on quality of life judgments are discriminatory and unlawful. OCR stated in a March 28 bulletin 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.”

This same conclusion must be reached with respect to nonconsensual or involuntary withholding of life sustaining treatment under futility laws and policies (see NCD report on futility). OCR’s action on the futility issue would add weight to 20 years of efforts to challenge the Texas law, including a recent appellate court ruling in another Texas case involving Tinslee Lewis, previously covered in this blog. The new July 24 court ruling has found the dispute resolution provisions in the Texas Advance Directives Act to be sorely lacking in constitutional due process protections, stating that a hospital:

“. . . [I]n invoking and following Section 166.046’s committee review process, failed to provide her adequate procedural due process for the ultimate encroachment on the paramount individual interests at stake.” (page 147-8)

The Office for Civil Rights must also impose strict guidelines for treatment withholding decisions by healthcare surrogates to protect seniors and people with disabilities from the same type of harm. Surrogate decisions are a more complicated issue than unilateral decisions by healthcare providers, because a surrogate may be accurately representing the wishes of the disabled individual. But NDY has long opposed giving carte blanche authority to surrogates and insisted that constitutional standards and protections are needed when surrogates decide against life-sustaining treatment of a disabled person.

The unifying themes here are that we are not better off dead than disabled, and society is not better off without us. The pressure is mounting for the healthcare system to stop its deadly discrimination against disabled people.