NCIL Membership Adopts Resolution Opposing Health Insurers’ Use of QALYs

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The membership of the National Council on Independent Living unanimously adopted a Resolution Opposing the Use of QALYs (Quality Adjusted Life Years) in all decisions concerning health care coverage. The Resolution was jointly developed by Not Dead Yet and the Autistic Self Advocacy Network for consideration in conjunction with NCIL’s Annual Conference held virtually beginning in July.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL will post the proceedings of the Annual Conference, including the Resolution, to their website after the conference events. The full text of the Resolution is below (and separately here):

NCIL Resolution Opposing the Use of QALYs (Quality Adjusted Life Years)

WHEREAS, the Quality Adjusted Life Year (QALY) is a tool that estimates the value of a treatment according to years of additional life, discounted by level of disability; and

WHEREAS, the QALY therefore weighs the value of a year of disabled life as less than the value of a year of nondisabled life; and

WHEREAS, health programs, including state Medicaid authorities and health insurance companies, have shown interest in using the QALY to limit health care treatment coverage since the 1990’s and perhaps earlier; and

WHEREAS, when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, federal authorities found that Oregon’s proposal violated the Americans with Disabilities Act as inherently discriminatory; and

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and

WHEREAS, Section 1557 of the Affordable Care Act similarly prohibits disability-based discrimination by health care providers; and

WHEREAS, health care coverage policies that prioritize people without disabilities are engaging in disability discrimination within the meaning of the Rehabilitation Act, Americans with Disabilities Act, and Affordable Care Act; and

WHEREAS, the National Council on Disability (NCD) has found a significant likelihood that the QALY will result in health care coverage decisions that discriminate against people with disabilities; and

WHEREAS, the disability community has a long history of experiencing discrimination in medical contexts, including through discriminatory denial of life-saving medical care; and

WHEREAS, Congress has prohibited the use of the QALY by certain federal agencies, particularly health-related agencies, or severely limited how they could utilize QALYs, in the Affordable Care Act; and

WHEREAS, the Affordable Care Act, prohibits the Patient Centered Outcomes Research Institute (PCORI) from using QALYs or any other similar measure that “discounts the value of a life because of an individual’s disability,” as a “threshold” for determining what type of health care is cost-effective, and from using QALYs when developing healthcare coverage, incentives, or reimbursement programs; and

WHEREAS, Medicare is similarly prohibited from utilizing “cost-effectiveness research” in a manner that treats “extending the life” of an elderly, ill, or disabled person as of less value than “extending the life” of someone who is none of the above; and

WHEREAS, despite laws banning or limiting use of QALYs, there has been increasing interest among national health insurance programs (like Medicaid), as well as actual practice among private health insurance companies, and pharmacy benefit managers in using QALYs to inform their decisions about which drugs and treatments they will cover;

THEREFORE BE IT RESOLVED that NCIL opposes the use of the QALY in all decisions concerning health care coverage; and

BE IT FURTHER RESOLVED that NCIL will provide technical assistance to CILs to raise awareness that the use of QALYs in health care coverage decisions is discriminatory and will encourage and advise local and state efforts to ban the use of QALYs; and

BE IT FURTHER RESOLVED that NCIL will work with Congress, the Department of Health and Human Services Office of Civil Rights, Department of Justice, and other relevant state and local agencies to educate stakeholders and ensure that QALYs are not used in decisions concerning public and private health care coverage.

Carol Cleigh Sutton: How Deeply Ableist is Mainstream Media?

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Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

A man named Michael Hickson died on June 11, 2020. He was denied food an fluids for 6 days. He was a Black man. His death occurred in a climate of national discussion about the killing of Black men. His wife, Melissa, has ample evidence that his death was deliberate and was the result of prejudice. Yet almost no stories in the mainstream media mention his death and outrage is coming from the disability rights movement and a few ‘shocked’ ethicists. Michael was quadriplegic.

Michael’s life was ended because he was disabled. This much is obvious from the recording that Melissa has of a physician callously ‘able-splaining’ the fact that he would kill her husband because he believed Michael had no ‘quality of life.’ Disability advocates have long known that ‘quality of life’ is code for BDTD- Better Dead Than Disabled.
In each of the four (4) stories about Michael’s death that I found in mainstream media (as of July 4), there are flat denials by the hospital that Michael was discriminated against because of disability. Not one reporter used the tapes to question that denial. There was also no attempt to contact a disability rights organization (like Not Dead Yet). Instead there is a very weak statement form a Texas Right to Life organization which doesn’t make clear that the physician in the tape is talking about disability when he uses the catch phrase ‘quality of life.’ Finally, the reporters all let the guardianship organization get away with a statement in which they claim that Michael’s spouse and family agreed to have him starved and dehydrated to death. Here is a story that is typical: Quadriplegic patient dies of COVID-19 after Austin hospital, guardian decide against life-saving treatment. **
So, why?
The answer is obvious to anyone who has been around disability rights. Mainstream media is deeply ableist and is working hard to help the hospital and guardianship organization sweep one more Black, disabled body under the rug. They are colluding in the murder of a Black disabled man.
Carol Cleigh Sutton has been a Not Dead Yet activist since the beginning in 1996, and currently resides in North Carolina. 
** Additional stories:

NDY Applauds ADAPT of Texas Demand For Investigation of Michael Hickson’s Death

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NDY Press Release:

Not Dead Yet, the Resistance

ADAPT of Texas has issued an Independence Day announcement that disability advocates are holding a vigil at St. David’s South Austin Medical Center to support the family of Michael Hickson, a 46-year old Black man with disabilities who died after being denied COVID-19 treatment. Not Dead Yet applauds ADAPT of Texas’ demand for “A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community,” and a meeting with Charles Laird, CEO of the St. David’s facility.

Mr. Hickson’s wife and widow, Melissa Hickson, has recorded a compelling video concerning the hospital’s denial of care for her husband based on negative quality of life judgments about his disability.

Mrs. Hickson has also provided other recordings of her husband’s recovery and statements made to her by a St. David’s doctor expressing blatant and unlawful discrimination. Links to these recordings are includes in an earlier NDY article.

ADAPT’s July 4th Press Advisory and Statement of Demands follow below.

*****PRESS ADVISORY ******

SUBJECT:  Disability Independence and Life Itself Challenged because of COVID 19 rationing. Michael Hickson’s death Outrages ADAPT of Texas

For information:

Nicky – 512 736 4814

Sophia – 512 924 8449

ADAPT of Texas advocates and supporters will be at the Entrance of St. David’s South Austin Medical 901 West Ben White Blvd on Sat, July 4th at 6:30pm.  Advocates will do a Vigil to support the family of Michael Hickson.

Attached are the demands of ADAPT of Texas.

Currently Texas has no guidance on the rationing of healthcare.

People with disabilities are NOT DISPOSABLE.

Our chant: LIFE WORTHY OF LIFE

Image: Wheelchair access symbol with chained arms raised breaking chain links, with yellow letters "Free Our People" above and "ADAPT" below on blue background.

1100 South IH 35 * Austin, Texas 78704 * www.adaptoftexas.org

Recently a quadriplegic Michael Hickson died under circumstances that may have resulted from rationing services because of his disability and being tested positive with COVID 19.

This has outraged the ADAPT of Texas Community.

WE DEMAND:

  1. A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community;
  1. Charles Laird, CEO of St. David’s South Austin Medical Center meet with members of the ADAPT of Texas Community. 

July 4, 2020

LIFE WORTHY OF LIFE

PEOPLE WITH DISABILITIES ARE NOT DISPOSIBLE

 

New OCR Settlement On COVID-19 Triage Criteria Increases Disability Protections

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On June 26, the U.S. Department of Health and Human Services Office for Civil Rights issued a press release entitled “OCR Resolves Complaint with Tennessee After it Revises its Triage Plans to Protect Against Disability Discrimination.”

A number of state and national disability groups had complained that Tennessee’s crisis standards of care (CSC) “would unlawfully disqualify individuals with advanced neuromuscular disease, metastatic cancer, traumatic brain injury, dementia, and other disabilities from use of a ventilator in times of scarcity.”

The release describes the key provisions of the revised policy as follows:

  • Clarified that resource-intensity and duration of need on the basis of age or disability should not be used as criteria for the allocation or re-allocation of scarce medical resources. This protects patients who require additional treatment resources due to their age or disability from automatically being given a lower priority to receive life-saving care;
  • Removed language permitting the use of a patient’s long-term life expectancy as a factor in the allocation and re-allocation of scarce medical resources, instead indicating that providers should consider only risk of imminent mortality;
  • Added language stating that reasonable modifications to the use of the state’s primary instrument for assessing likelihood of short-term survival should be made when necessary for accurate use with patients with underlying disabilities. Such reasonable modifications ensure that people with disabilities are evaluated based on their actual mortality risk, not disability-related characteristics unrelated to their likelihood of survival;
  • Removed categorical exclusion criteria that prohibited people with disabilities from receiving care on the basis of their diagnosis, and required individualized assessments of patients based on the best available objective medical evidence; and
  • Incorporated language stating that hospitals should not re-allocate personal ventilators brought by a patient to an acute care facility to continue pre-existing personal use with respect to a disability. Under this language, long term ventilator users will be protected from having a ventilator they take with them into a hospital setting taken from them to be given to someone else.

The third and fifth point above specifically address concerns that NDY has expressed in our COVID-19 blogs concerning the discriminatory use of the Sequential Organ Failure Assessment (SOFA) score without reasonable modifications based on pre-existing disabilities and chronic conditions, and concerning the risks that people with disabilities who use breathing support could have their ventilators reallocated to other people under triage policies. NDY is gratified that these issues have been resolved in terms of OCR policy.

Reactions from disability rights lawyers have been positive. The Disability Rights Education & Defense Fund issued a release quoting a few of them:

“We’re pleased the state of Tennessee has committed itself to a policy of nondiscrimination during the COVID-19 pandemic,” stressed Claudia Center, Legal Director for the Disability Rights Education & Defense Fund. “Hospitals should treat everyone who can recover and survive, regardless of disability or age.”

“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “We hope that states will revisit their policies in light of today’s resolution.”

“This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”

In addition, Martie Lafferty, Director of the Accessibility Project of the Civil Rights Education and Enforcement Center, one of the complainant groups, stated: “Tennessee’s revised guidelines ensure that Tennesseans with disabilities will have equal access to healthcare during this pandemic and other public health emergencies.  In addition, these guidelines– the most comprehensive revision of crisis standards of care to date– are a best practice model for other states.”

Now the challenge will be to see that all crisis standards of care, state and hospital-based, incorporate these OCR standards, not just Tennessee’s; and to see that they are implemented and enforced. Many states and medical facilities have not yet adopted standards consistent with earlier OCR settlements on discrimination in COVID-19 triage policies, even the most basic standards against making “quality of life” judgments. If they had, Michael Hickson would not have been denied treatment in a Texas hospital last month.

ADAPT of Texas Protests Hospital Killing of Michael Hickson, A Black Disabled Man

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ADAPT of Texas members protested on June 28th in front of St. David’s Hospital in Austin where they refused treatment and starved to death Michael Hickson, a black disabled man who died on June 11th, 2020.

Photo description: Nicky and Ron wearing masks in their wheelchairs holding red signs outside St. David's Hospital in Austin. Nicky's sign reads Justice for Michael Hickson 9-6-1973 to 6-11-2020. Ron's red sign read Disabled Not Disposable and a white sign on his feet Life Worthy Of Life for People With Disabilities
ADAPT of Texas Protest At Hospital That Killed Michael Hickson

ADAPT of Texas reported that Michael Hickson was a quadriplegic with a brain injury who was refused treatment for COVID 19 that he acquired in a local nursing home.

A pro-life media outlet reported on Mr. Hickson’s story, including a video of his recovery as he progressed over time, and an audio recording of a doctor explaining the hospital’s decision not to treat him for COVID-19.

. . . Hickson became a quadriplegic in May 2017 after going into sudden cardiac arrest while driving his wife Melissa to work. He received CPR but suffered an anoxic brain injury from the loss of oxygen to his brain. Since that time, he has been conscious and alert, responding to jokes, laughing, shaking his head, singing, and puckering his lips when his wife asked for a kiss over FaceTime. See the video below:

Then in 2020, he contracted COVID-19 from a staff member in his nursing home and developed pneumonia. He was hospitalized at St. David’s South Austin Medical Center, but doctors there refused to treat him, allowing him to die.

In a recorded conversation between the doctor and Melissa, she was told that he would not receive treatment due to his disability:

Doctor: So as of right now, his quality of life — he doesn’t have much of one.

Melissa: What do you mean? Because he’s paralyzed with a brain injury he doesn’t have quality of life?

Doctor: Correct.

A five-minute recording of the conversation is here:

The doctor seems to invoke the infamous Texas futility law, aka the “10-day-rule”, which allows doctors to involuntarily withdraw life-sustaining treatment after giving ten days notice. But it’s not clear how long Mr. Hickson was in the hospital. There’s no indication that even the minimal requirements of the futility law were met. Even if they used a hospital “ethics” committee, it’s highly unlikely that it included any disability rights advocates. (A problem we can all work to address – nothing about us without us!)

There’s also no indication that Austin hospitals had entered a period of shortages that would have triggered COVID-19 triage policies. Even if resource shortages existed in early June, the reasons given for withholding treatment are blatantly and illegally discriminatory under recent federal HHS Office of Civil Rights COVID triage rulings. The latest OCR settlement with the state of Tennessee makes it crystal clear that the Texas hospital’s decision leading to Mr. Hickson’s death violated federal standards.

Based on the information we have, it seems that the hospital used COVID triage and Texas futility policies in combination to try to “justify” a killing that neither policy could do alone. NDY questions the relative lack of media interest in this outrageous killing of a Black disabled man, and the hospital’s cold and cavalier dismissal of his life as unworthy of care. But for the video and audio recordings, this injustice would likely have remained hidden. Our hearts go out to his family for their terrible loss.