Federal study finds QALYs restrict access to lifesaving healthcare for people with disabilities

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The National Council on Disability issued the following release on November 6, announcing the latest report in its bioethics series.

Federal study finds certain health care cost-effectiveness measures discriminate, restrict access to lifesaving treatments for people with disabilities

For Immediate Release                                           

WASHINGTON – Today, the National Council on Disability (NCD)—an independent federal agency– released a study examining “Quality-Adjusted Life Years” (QALYs) as a health care cost-effectiveness measure that guides coverage decisions regarding drugs and treatments by private and public health insurers.

As the cost-effectiveness measure gains popularity among prominent nonprofit corporations and professional associations in the U.S., Quality-Adjusted Life Years and the Devaluation of Life with Disability examines the potential of limiting access to lifesaving medications and treatments for people with disabilities and those with chronic illnesses by its use.

The report identifies the use of QALYs by other countries to curb healthcare spending and analyzes whether or not the long opposition to QALYs by the disability community is well-founded based on its impact on access to care.

In its review, NCD found QALYs calculations often rely upon a quantification of the value of a year of life with a disability that is lower than an individual without a disability as a baseline assumption that can correlate with a quality of life assessment, resulting in a denial of care in consideration of cost.

“The perception that people with disabilities do not have a high quality of life is based on old stereotypes from a bygone era,” said NCD Council Member Clyde Terry. “Purely measuring the quality of life based on cost-effective outcomes starts with a premise of counting a person with a disability as less than whole, producing inherently discriminatory outcomes.”

In its study, NCD found sufficient evidence of discriminatory effects of the measure to warrant concern, including: concerns raised by bioethicists, patient rights groups, and disability rights advocates; and the inability of patients to obtain coverage of needed healthcare in countries where QALYs are used frequently. NCD also found that when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, it was found to violate the Americans with Disabilities Act as inherently discriminatory.

Due to the rapidly rising cost of healthcare, spending has become a major concern for healthcare policymakers and public and private insurers. Despite the growing understanding that disability is a normal part of the human experience, negative biases and inaccurate assumptions about the quality of life of a person with a disability persist in the medical context, and these biases can have serious and even deadly consequences when insurers refuse to cover the cost of medicines and treatments based on a cost-benefit analyses that rely upon faulty premises.

Key findings and recommendations from Quality-Adjusted Life Years and the Devaluation of Life with Disability include:

Key Findings:

  • The United States Federal Government does not have a single, comprehensive policy on the use of QALYs. It has considered increasing its utilization of cost-effectiveness research and has also rejected the idea at different points in time, leading to inconsistent policies across federal agencies. Some agencies are banned from using QALYs to make benefits and coverage decisions, while others use it frequently.
  • There has been increasing interest by the U.S. Federal Government in reducing the cost of healthcare by modeling parts of its national health insurance programs after the health care systems of other countries, such as the United Kingdom. Several of these countries utilize QALYs to make benefits and coverage decisions. The coverage denials and loss of access to care faced by people with disabilities in these countries illustrate what might happen if the United States made a similar choice.
  • Cost-effectiveness research (including QALYs) is one of many different types of evidence insurers consider when making their decisions. There is little transparency in insurers’ internal decision-making processes.
  • There are alternatives to the use of QALYs, ranging from well-established methods regularly used by U.S. federal agencies already, such as cost-benefit analysis, to unexplored but promising alternatives such as value frameworks that use patient preferences to determine the value of healthcare treatments.

Key Recommendations:

  • When enacting health reform bills, Congress should avoid creating provisions of any bill that would require the agency with management and oversight responsibilities to cover only the most cost-effective drugs and treatments or to require the agency to impose restrictions on less cost-effective treatments.
  • Congress should pass legislation prohibiting the use of QALYs by Medicaid and Medicare and provide funding to the U.S. Department of Health and Human Services (HHS) for research on best practices on the use of cost-effectiveness to inform benefits and coverage decisions with respect to Medicare and Medicaid. “Best practices” in this case refer to a means of utilizing cost-effectiveness research that facilitates greater access to care, and does not reduce access to care for people with chronic health conditions and disabilities.
  • DOJ and HHS Office of Civil Rights should jointly issue guidance clarifying that the ADA applies to coverage programs that states operate such as Medicaid. Additionally, guidance should clarify that Section 504 of the U.S. Rehabilitation Act and Section 1557 of the Affordable Care Act apply to health insurance programs operated by recipients of federal financial assistance from HHS. The guidance should specifically discuss how these authorities apply to benefits and reimbursement decisions, and that payment decisions should not rely on cost-effectiveness research driven by QALYs.
  • HHS Centers for Medicare and Medicaid Services (CMS) should utilize well-established alternatives, such as Multi-Criteria Decision Analysis, which is a method that better acknowledges the complexity of healthcare coverage decisions, or cost-benefit analysis, when the exact benefits and costs of a drug or treatment are known.

Read this and all of the reports in NCD’s Bioethics and Report Series at https://ncd.gov/publications/2019/bioethics-report-series

About NCD’s Bioethics and Disability Series

NCD’s bioethics and disability report series focuses on how historical and current devaluation of the lives of people with disabilities by the medical community, researchers, and health economists perpetuates unequal access to medical care, including life-saving care. NCD has released the following reports: Organ Transplant Discrimination Against People with Disabilities; The Danger of Assisted Suicide Laws; Genetic Testing and the Rush to Perfection; Quality-Adjusted Life Years and the Devaluation of Life with a Disability; and will release its final report, Medical Futility and Disability Bias on November 20.

About the National Council on Disability

First established as an advisory council within the Department of Education in 1978, NCD became an independent federal agency in 1984. In 1986, NCD recommended enactment of an Americans with Disabilities Act (ADA), and drafted the first version of the bill which was introduced in the House and Senate in 1988. Since enactment of the ADA in 1990, NCD has continued to play a leading role in crafting disability policy, and advising the President, Congress and other federal agencies on disability policies, programs, and practices.

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Texas Mother Fights To Save Her 9-Month-Old Baby From Hospital’s Futility Judgment

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Nine month old Tinslee Lewis was scheduled to die today (11/11/19), based on a Fort Worth hospital’s decision to remove her ventilator under the Texas futility law. The nation’s most infamous futility law provides for ten days notice and you’re dead — unless another willing medical provider takes over.

From news video, it does not appear that Tinslee is being declared “brain dead”, or even unconscious. She seems quite responsive. After her story hit the news over the weekend, a Texas court has reportedly granted a temporary restraining order and extension till November 22.

Here’s a news video interviewing Tinslee’s mother:

There’s also information on the Project TX Fragile Kids Facebook page.

The National Council on Disability’s bioethics report on Medical Futility will be issued November 20, 2019.

Meghan Parker Op-Ed Published: Our problem with assisted suicide

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Our problem with assisted suicide: Why disability advocates worry about making it easier for physicians to help New Yorkers die

By Meghan Parker
New York Daily News, October 22, 2019

Proponents of New York’s physician-assisted suicide bill seem perplexed by the strong opposition from disability activists.

But doesn’t the bill only apply to adults who are expected to die within six months so they can control when they die? Isn’t that a basic right that we should all have?

As someone who is blind with a chronic condition, and who has spent years fighting for the rights of people with a range of disabilities, let me explain.

Under assisted-suicide laws, doctors play two critical roles. First, they determine if a person is indeed terminal. Then, they prescribe a drug combination that will cause death.

I am deeply concerned that the fate of thousands of people who struggle with serious health challenges will hinge on medical professionals’ subjective perceptions and the guidance they give. My experience tells me that as a result, we will see patients with the same diagnosis or functional levels who are more or less likely to die based on factors that shouldn’t matter.

Assisted suicide is typically depicted by proponents as a choice for patients who have tried everything. But the legislation doesn’t ensure that assisted suicide is truly a last resort. And proponents ignore the fact that having access to “everything” is a luxury of the few.

No one knows this better than disabled people. Complications from chronic conditions can turn deadly when the appropriate treatment or equipment cannot be promptly obtained. Survival rates for cystic fibrosis vary depending on the type of insurance a person has.

Before we even consider legalizing assisted suicide, we must address healthcare inequities that cause people who want to live with proper care to needlessly become “terminal.” Otherwise, we are effectively relegating people with fewer options to premature death.

More fundamentally, assisted suicide is based on the assumption that life is so burdensome for some individuals that it is reasonable for them to want to die early. To me, this sounds dangerously close to the “better dead than disabled” attitude that people with disabilities have long struggled against.

As Dr. Ira Byock, a specialist in palliative care and a progressive Democrat, has aptly observed, “when doctor-induced death becomes an accepted response to the suffering of dying people, logical extensions grease the slippery slope.”

Proponents insist any law will come with safeguards, but nothing can prevent an errant prognosis or keep a vulnerable person from being subtly coerced. Official reports state that about half the people who have died by assisted suicide in Oregon felt like a burden on others.

Terms like “terminal illness” that seem well-defined are open to varying interpretations. Is a person with muscular dystrophy who may not survive if he gets pneumonia again considered terminal? Indeed, there are many disabling conditions like Parkinson’s disease that may shorten life.

The requirement that two doctors must agree that, in their reasonable medical judgment, a patient will die within six months or less does not mean that their predictions are right. In fact, the data show that some people don’t take their lethal drugs and far outlive their prognosis.

One provision of the bill touted as specifically protecting disabled folks and the elderly may actually do the opposite. This is the prohibition against a person qualifying for aid in dying “solely because of age or disability.” The word “solely” implies that age or disability can be among several factors to be taken into consideration in determining if a patient can be given a lethal prescription. And the reported reasons people have requested assisted suicide in Oregon — loss of autonomy, less able to engage in activities, etc. — indicate that virtually all who die by lethal prescription have been disabled in some way.

Many disability-rights activists oppose passage of New York’s assisted suicide bill because it would put people like us at risk. But our focus is broader than that. We aim for a fair and compassionate community where everyone can get the medical care they need and want, and everyone has enough social support and affirmation that they can live without feeling a duty to die.

Parker is the director of advocacy for the New York Association on Independent Living.

The Passing of Marca Bristo Is A Disturbance In the Force

Our News & Commentary Blog

A Memorial Service for Marca Bristo is being held today, October 17, 2019 at 4:00 p.m. Eastern Time at the Kellogg Conference Center at Gallaudet University, 800 Florida Avenue NE in Washington, D.C. The Memorial will reportedly be live-streamed via the website of Access Living, her center, one of the oldest and largest centers for independent living in the country.

Throughout Not Dead Yet’s more than two decades of work, Marca demonstrated knowledge and support on the issues at the heart of our mission.

In April 1996, I was invited to present testimony on assisted suicide to the Constitution Subcommittee of the U.S. House of Representatives, testimony I co-authored with Carol Gill. Marca invited me to a disability policy summit held in Dallas the weekend before the scheduled testimony, where I was able to personally ask national disability rights leaders to sign on to the testimony, gaining support from Justin Dart, Judy Heumann and many more. There in Dallas, Not Dead Yet began.

The following year, Marca, who chaired the presidentially appointed National Council on Disability (NCD) during the Clinton Administration, arranged a debate before the Council members between myself and Derek Humphry, co-founder of the Hemlock Society, resulting in a formal NCD position opposing legalization of assisted suicide. NCD reaffirmed this position in 2005, and again this month when it released it’s new report, The Danger of Assisted Suicide Laws.

In April 1999, Marca spoke at a protest held at Princeton University opposing the hiring of bioethicist Peter Singer. “Singer’s core vision, that the life of a person with a disability is worth less than the life of a person without a disability, and therefore it is OK to kill infants with disabilities if that is what the parent wants to do, amounts to a defense of genocide.”

Over the years, the disability rights advocates at Access Living participated in NDY direct actions as well, and were a major part of our 2014 protest in Chicago against the World Federation of Right To Die Societies. Marca’s advocacy staff generously handled advance logistics for the action, and Marca spoke movingly at our rally.

Insightful, strategic, influential, mission driven, irreplaceable. Her dedication touched and bettered the lives of countless people with disabilities across decades, across many struggles. With Marca, the phrase “Rest In Power” takes on new meaning.

Federal study finds assisted suicide laws rife with dangers to people with disabilities

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The National Council on Disability (NCD) has issued the second in a series of reports on Bioethics and Disability. NCD’s release on the report today focuses on “a federal examination of the country’s assisted suicide laws and their effect on people with disabilities, finding the laws’ safeguards are ineffective and oversight of abuses and mistakes is absent.”

The Disability Rights Education & Defense Fund (DREDF), which worked in partnership with NCD on the series of reports, summarizes this groundbreaking work:

Despite the growing consensus that disability is a normal part of the human experience, the lives of people with disabilities are routinely devalued in medical decision-making. Negative biases and inaccurate assumptions about disabled people persist. In medical situations, these biases can have serious and even deadly consequences.

Beginning on September 25, the National Council on Disability (NCD) is releasing a series of reports on bioethics and disability. The five reports were developed through a cooperative agreement with the Disability Rights Education & Defense Fund (DREDF), which appreciates and acknowledges the valued work of our partners, the Autistic Self Advocacy Network, the Bazelon Center for Mental Health Law and Not Dead Yet, in creating the series.

Each report examines the status and future of how a variety of key issue areas – including organ donation, assisted suicide laws, genetic testing, systems such as Quality Adjusted Life Years, and assumptions about medical futility – are developing due to technological and scientific advances as well as legal changes and healthcare delivery. A combination of original research, stakeholder and scholar interviews, literature reviews, reviews of media reports, and legal analysis is used to examine each topic. Each report includes findings and makes recommendations to lawmakers and policymakers that we hope will ensure that the lives of people with disabilities are valued on an equal and nondiscriminatory basis with all others.

Not Dead Yet specifically consulted on the topics of organ donation, assisted suicide and medical futility.

NCD’s release on today’s assisted suicide report includes the following details, and an example of a seriously mistaken cancer prognosis personally experienced by the NCD Chairman, Neil Romano:

Despite the belief that pain relief is the primary motivation for seeking assisted suicide, in Assisted Suicide Laws and their Danger to People with Disabilities, NCD found that the most prevalent reasons offered by someone requesting assisted suicide are directly related to unmet service and support needs, which NCD urges policy makers respond to through legislative changes and funding.

“Assisted suicide laws are premised on the notion of additional choice for people at the end of their lives, however in practice, they often remove choices when the low-cost option is ending one’s life versus providing treatments to lengthen it or services and supports to improve it,” said NCD Chairman Neil Romano.

Closely examining the experience in Oregon, where the practice has been legal for 20 years, NCD found that the list of conditions eligible for assisted suicide has expanded considerably over time, including many disabilities that, when properly treated, do not result in death, including arthritis, diabetes, and kidney failure.

Assisted Suicide Laws and their Danger to People with Disabilities also notes suicide contagion in states where assisted suicide is legal; as well as a loosening of existing safeguards both in states with legalized assisted suicide and states considering bills to legalize.

In the report, NCD details limitations of purported safeguards of assisted suicide laws, finding:

  • Insurers have denied expensive, life-sustaining medical treatment, but offered to subsidize lethal drugs, potentially leading patients to hasten their own deaths;
  • Misdiagnoses of terminal disease can cause frightened patients to hasten their deaths;
  • Though fear and depression often drive requests for assisted suicide, referral for psychological evaluation is extremely rare prior to doctors writing lethal prescriptions;
  • Financial and emotional pressures can distort patient choice;
  • Patients may “doctor shop” limitlessly to find a physician who will obtain a colleague’s concurrence and prescribe a lethal dose

“As someone who has battled cancer and been given weeks to live and am still thriving years later, I know firsthand that well-intending doctors are often wrong,” said Mr. Romano. “If assisted suicide is legal, lives will be lost due to mistakes, abuse, lack of information, or a lack of better options; no current or proposed safeguards can change that.”

NCD concludes its research with recommendations, including highlighting the need for:

  • Federal research on disability-related risk factors in suicide prevention, as well as on people with disabilities who request assisted suicide and euthanasia;
  • Federal regulation requiring non-discrimination in suicide prevention services; and
  • Greater federal investment in long-term services and supports.

The NCD report is online at The Danger of Assisted Suicide Laws. The release dates for the other reports in the series are here, with links to the full reports as they become available.