A Watershed Moment: NIH Designates Disabled People as a Health Disparity Population

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By Lisa Blumberg, JD

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

In late 2023, the National Institute on Minority Health and Health Disparities (NIMHD), designated people with disabilities as a population with health disparities for research supported by the National Institutes of Health (NIH). This means that NIMHD now recognizes that people with disabilities as a group experience significant disparities in their rates of illness, morbidity, mortality and survival, driven by social disadvantage, compared to the health status of the general population (italics mine for emphasis). Other NIH-designated populations with health disparities include racial and ethnic minority groups, people with lower socioeconomic status, underserved rural communities and sexual and gender minority groups (NIMHD is one of the institutes comprising NIH),

NIMHD’s decision, which was arrived at after some controversary, reflects both the input of  disability rights activists and scientific evidence. As NIMHD director, Dr. Eliseo J. Pérez-Stable stated, “People with disabilities often experience a wide and varying range of health conditions leading to poorer health and shorter lifespan. In addition, discrimination, inequality and exclusionary structural practices, programs and policies inhibit access to timely and comprehensive health care, which further results in poorer health outcomes. People with disabilities who also belong to one or more other populations with health disparities fare even worse.”

The designation is an acknowledgement that anti-disability bias is a force undermining the health of disabled people in the U.S. and so the health of the country.

Steeped in the medical model, NIH has always funded research into treatments for conditions resulting in disabilities. Now it will also fund research into the myriad barriers disabled people face in achieving equal access to health care and how these barriers can be eradicated.  For example, simultaneously with the announcement of the designation, NIH issued a notice of funding opportunity calling for research applications focused on novel and innovative approaches and interventions that address the intersecting impact of disability, race and ethnicity, and socioeconomic status on healthcare access and health outcomes.

The social model of disability has come to the bastion of medical research.

“This is a big deal,” said Peter W. Thomas, co-coordinator of the Disability and Rehabilitation Research Coalition, which focuses on improving disability research.

Writing in Stat, Lynne Moronski, a health care researcher and parent of a daughter with significant disabilities, called the designation a landmark decision.

Joel Reynolds in a recent piece in JAMA Health Forum called it a watershed moment. He went on to say, “medicine is indeed at the beginning of appreciating the problem of ableism in medicine, the beginning of making equity of care for disabled patients a priority, and the beginning of not just acknowledging, but mitigating and eliminating the health disparities faced by disabled people. This beginning promises a future that improves quality and equity of care across patient populations, builds better health care systems, and makes a world that is a better fit for all.”

The action by the NIH and the updating of the 504 regulations to prohibit discrimination based on disability by health care providers receiving federal funds are victories for disability activists. Nonetheless, we still face threats. The medical system continues to be inefficient, fragmented and profit driven. The “better dead than disabled” ethos is virulent and, as discussed in a future blog, it underlies much of the agitation for legalized assisted suicide and euthanasia. It is the best of times. It is the worst of times.

 

NDY Joins in Statement Against Assisted Suicide for Eating Disorders

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Today, Not Dead Yet joins in solidarity with over 100 other organizations and experts to release a joint statement calling on governments to halt the practice of assisted suicide for individuals with eating disorders.

This statement is in response to a recent study revealing that at least sixty patients with eating disorders have been euthanized or assisted in suicide in Belgium, the Netherlands, and the United States. Alarmingly, a third of these cases involved young people in their teens and twenties, many of whom had not received comprehensive treatment. This study demonstrates the dangerous and uncontrollable nature of a public policy allowing assisted suicide and euthanasia.

We are urging governments to take immediate action. This practice undermines decades of research on effective treatments and endangers the lives of vulnerable individuals. Moreover, it raises significant public safety concerns and an urgent need for increased access to eating disorder care, which remains inaccessible to many patients due to cost, lack of insurance, and extended wait times.

Please read the full joint statement and join in spreading the word. A grassroots social media campaign with the hashtag #TreatableNotTerminal is also amplifying the message that people with eating disorders need access to treatment — not lethal medications. 

Read the full statement and list of signatories here: www.eatbreathethrive.org/joint-statement-assisted-suicide Organizations and individuals can join the Statement by going HERE.

Plaintiffs Appeal Dismissal of Assisted Suicide Lawsuit Under the ADA and Constitution

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Today, the 34th Anniversary of the passage of the Americans with Disabilities Act (ADA) is the perfect day for an update on the groundbreaking lawsuit, United Spinal v. California, which challenges the California assisted suicide law as violations of the ADA and the U.S. Constitution’s Due Process and Equal Protection provisions. The federal District Court dismissed the lawsuit in the spring and plaintiffs promptly gave notice that we would appeal. On July 17th*, United Spinal Association, Not Dead Yet and the other plaintiffs filed our appeal. Here is the press release:

FOR IMMEDIATE RELEASE

Disability Organizations and Individuals Partner to Appeal the Deadly and Discriminatory Public Policy of Physician-Assisted Suicide California Law Unlawful and Unconstitutional

LOS ANGELES, CA — [7/17/24] — The United Spinal Association (“United Spinal”), Not Dead Yet (“NDY”), Institute for Patients’ Rights (“IPR”), Communities Actively Living Independent & Free (“CALIF”), and individual plaintiffs, Lonnie VanHook and Ingrid Tischer, filed an appeal to the 9th Circuit following the recent dismissal of their lawsuit challenging California’s End of Life Option Act (EOLOA). The current state law permits physicians to prescribe lethal drugs to suicidal patients and has weakened many of the safeguards in the original law, fast-tracking death by suicide within 48 hours. The EOLOA, by design, remains unregulated by any California public entity, leaving patients and their loved ones at grave risk of harm and without recourse.

Diane Coleman, President and CEO of NDY commented, “A doctor told my parents I would die by age 12. Many of us with life threatening disabilities like the individual plaintiffs, Lonnie and Ingrid, would be able to qualify for lethal drugs under these laws. The doctor decides who fits the vague definition of “terminal” and studies – including a recent Harvard study – confirm what we already know about the dim view that the majority of doctors take toward people with disabilities. We deserve the same suicide prevention as anybody else – otherwise, it’s unlawful discrimination.”

The appeal contends that the District Court erred in dismissing the Complaint by reasoning that physician assisted suicide is a supposedly voluntary choice and therefore, cannot violate federal disability laws. The ADA does not allow government discrimination even in ”voluntary” programs. And there is no true choice when patients are steered to inexpensive and available physician assisted suicide and face barriers, delays and high costs when trying to live with difficult to access and expensive home health care, palliative care and other necessary supportive services. The terms “terminal” and “6-month prognosis” in the California statute are ambiguous, leading to a broad application that includes individuals with various serious conditions. “We’ve seen cases where people with conditions like diabetes, HIV, anorexia, and others who manipulated their circumstances qualify for life-ending drugs,” observed Matt Vallière, Executive Director of IPR. “This complex reality highlights significant issues that extend far beyond a simple legal analysis.

The recent ruling by the lower court seems to suggest that the law is functioning as intended and will remain unchanged but that is just what plaintiffs are contending. The original safeguards have already been weakened, such as reducing the mandatory waiting period from 15 days to just 48 hours. Recent legislative efforts aimed to further dismantle these protections, potentially enabling even those without life-threatening disabilities to seek assisted suicide, pushing California towards full out euthanasia.

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“Our concern, which we hope the Court will acknowledge, is that inadequate resources to provide home care and fear of being a financial or care burden is the motivation for overwhelmed severely disabled people to kill themselves. Californians and the doctors who serve them should divert those trying to kill themselves to suicide prevention programs,” said Vincenzo Piscopo, CEO of United Spinal Association.

The lawsuit originally filed in the U.S. District Court for the Central District of California also highlighted several critical issues:

  • Publicly reported data shows that over 2,000 patients who utilized physician-assisted suicide primarily did so due to disability-related fears.

  • Every person who qualifies for lethal drugs under EOLOA is classified as a person with disabilities under federal law.

  • Physician Assisted suicide law is unregulated and unsupervised, facilitating undue pressure from heirs, family members, and caregivers.

  • Financially motivated insurers have denied life-saving treatments in favor of offering lethal prescriptions.

  • People of color, particularly those who are economically marginalized, are more susceptible to being steered towards suicide by providers.

Plaintiffs Ingrid Tischer and Lonnie VanHook shared their personal experiences of being pressured towards assisted suicide due to their disabilities, highlighting the profound impact of such policies on their lives and mental health.

The appeal requests the court to declare that the California law violates the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, and the Fourteenth Amendment’s Due Process and Equal Protection Clauses, and to enjoin the Defendants from enforcing the law.

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About United Spinal Association

Formed in 1946 by paralyzed veterans, United Spinal is a national 501(c)(3) nonprofit membership organization dedicated to empowering people with spinal cord injuries and disorders (SCI/D), including veterans, to live successful and fulfilling lives. Membership is free and open to all individuals with SCI/D, with over 60,000 members across 49 chapters, close to 200 support groups and more than 100 rehabilitation facilities and hospital partners nationwide. Known for its revolutionary advocacy efforts, United Spinal played a significant role in writing the Americans with Disabilities Act, provided important contributions to the Fair Housing Amendments Act and the Air Carrier Access Act, and was instrumental in attaining sidewalk curb ramps and accessible public transportation in New York City, which created the standard accessibility model used in many United States cities. For more information visit: https://unitedspinal.org/

About Communities Actively Living Independent & Free

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Communities Actively Living Independent & Free (CALIF) is an independent living center, a non-profit 501(c)(3) organization that provides advocacy programs and services for people with disabilities primarily residing within the 50 zip codes of Los Angeles County covering south and central Los Angeles and neighboring communities. For more information visit: https://calif-ilc.org/

About Not Dead Yet

Not Dead Yet is a national, grassroots disability rights group that opposes legalization of assisted suicide and euthanasia as deadly forms of discrimination against old, ill, and disabled people. Not Dead Yet helps organize and articulate opposition to these practices based on secular social justice arguments. Not Dead Yet demands the equal protection of the law for the targets of so called “mercy killing” whose lives are seen as worth-less. For more information visit: https://notdeadyet.org/

About Institute for Patients’ Rights

The Institute for Patients’ Rights, Inc. is a 501(c)(3) that conducts research, educates the public, and works to expand and implement tools of empowerment for older adults, people with disabilities, marginalized persons, and their families to combat policies and medical practices that devalue some people’s lives, putting them at greater risk of deadly harm . For more information visit: https://instituteforpatientsrights.org

Media Contacts: General: Bianca Ngala

bngala@apcoworldwide.com

For Rosen Bien Galvan and Grunfeld LLP: Carl Whitaker carl@whitakercom.com

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Suicidal thoughts or actions (even in very young children, older adults, and people with life-threatening illness/disability) are a sign of extreme distress and should not be ignored.

If you or someone you know needs immediate help, call or text the national Suicide and Crisis Lifeline at 988.

Learn more about ways you can help someone who might be at risk for self-harm.

* The original press release was issues on July 17 when the appeal was filed electronically. NDY distributed the press release on July 26 following the hard copy paper filing.

Lisa Blumberg: Brain Injured Are Denied Life Sustaining Treatment Too Early

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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

A 2007 Not Dead Yet blog described “rush to judgment” cases where people who had sustained a major brain injury were denied life sustaining treatment before appropriate time had passed to determine if they could become conscious. It referred to an article co-authored by Dr. Joel Frader, now a member of the Northwestern Center for Bioethics and Medical Humanities, which asserted there was a convenient “window of opportunity” to withdraw respiratory support from newly brain injured patients before they could breathe on their own and possibly survive with disabilities. The blog noted that “the better ‘dead than disabled’ philosophy may be gaining wider acceptance within the medical profession than the public has been led to believe.”

In the years since then, rush to judgment cases have become commonplace. It is the ultimate one and done. In a recent New York Times piece, health writer Gina Kolata describes what the article calls “the custom” or “the convention”. Adoctor sits down with family members within 72 hours of the patient’s admission to intensive care to discuss the patient’s prognosis, and whether they want to keep their loved one alive, or to remove life support….many doctors would describe the outlook as grim — most likely death or severe disability. Reported outcomes of patients who had severe traumatic brain injuries show that most times the decision is to remove life support. The patient dies.

In a tone of wide-eyed wonder Kolata reports on a study that indicates that doctors and family make “better” decisions when the patients receive life sustaining treatment a while longer.

Kolata does not mention that such a short time frame as 72 hours has always been controversial among both disability activists and health care professionals. Neither does she depict making quick, irreversible decisions as reflective of both the health care disparities faced by people with disabilities face and of the broken health care system. Yet she deserves credit for bringing this simple, understandable study to the attention of the newspaper’s readership.

The study was undertaken after Yelena Bodien, a neuroscientist at Massachusetts General Hospital and Spaulding Rehabilitation Hospital, and her colleagues noticed that many of their patients were exceeding the prognosis their families had originally been given. They compared 80 patients with severe injuries who died after life support was withdrawn, with 80 similar patients whose life support was not withdrawn so early. They found that 42 percent who continued life support recovered enough in the next year to have some degree of independence. A few even returned to their former lives.

42 percent! The understated conclusion was that prognosis is more accurate if there is more of a wait prior to withdrawing life support. What it really means is that 42 percent of those whose lives were ended could have also recovered enough in the next year to have some degree of independence and a few returned to their former lives but instead they are dead.

The results of the study are striking but the study does not really break new ground. Dr. Joseph Fins, an expert in consciousness levels, stated years ago in regard to people who have sustained major brain injuries, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.”

Moreover the guidelines from the American Academy of Neurology, reflecting the view that current ICU practice is based on flawed and outdated information, categorically state that when “discussing prognosis with caregivers of patients with a disorder of consciousness during the first 28 days post-injury, clinicians must avoid statements that suggest these patients have a universally poor prognosis.”

Writing in Stat, Dr. Roger Truog, a ethicist and doctor at Boston Children’s Hospital, maintains that adhering even to these modest guidelines would unduly strain family, ICU’s and rehabilitation beds. Rather than acknowledging the error rates, he writes, “most ICU physicians do not believe they are incapable of accurately predicting poor outcomes in the most severe cases.” Truog appears to endorse the “window of opportunity” – or “better dead than disabled” – approach.

What is a poor outcome? The investigators for the study have received pushback from colleagues who do not doubt the results but who say, “If we don’t make a decision early, we might be committing these patients to a life they would not like.”

As usual, it is all about disability, quality of life biases and the belief that disability is a fate worse than death and that people with disabilities are a burden to society.

Is change coming? The update to the 504 Regulations is designed to prevent healthcare providers receiving federal funds from acting on such views but it looks like there will be a steep learning curve at best.

NDY Comment on Comment on Proposed Texas Futility Regulations

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July 12, 2024

HHS Office of Inspector General – Chief Counsel Division
P.O. Box 85200
Austin, Texas 78708

Email: IG_Rules_Comments_Inbox@hhsc.state.tx.us

RE: Proposed Regulations published in the June 14, 2024 Texas Register

Dear Chief Counsel:

Not Dead Yet is a national disability rights organization focused on combatting disability- based healthcare discrimination, particularly in the context of advanced or terminal illness. Our comment concerns the regulations to implement the 2023 amendments to the Texas Advance Directives Act governing DNR orders and medical futility conflicts (H.B. 3162) proposed by the Texas Health and Human Services Commission.

Section 166.046 of the Texas Health and Safety Code now requires an ethics or medical committee that reviews a physician’s refusal to honor an advance directive or health care or treatment decision to consider the patient’s wellbeing and not make any judgment on the patient’s quality of life.

In a similar vein, new Section 166.0465 of the Texas Health and Safety Code provides that such a committee may not consider a patient’s disability that existed prior to the current admission, unless the disability is relevant in determining whether the medical or surgical intervention is medically appropriate.

Section 166.0465 must be read in conjunction with Section 166.046 which forbids quality of life judgments whatever the patient’s circumstances. The thrust of H.B. 3162 is to make the process under which an ethics or medical committee evaluates disputes over the withholding of possibly life preserving care more fair and less influenced by bias against disability.

To be consistent with H.B. 3162, the regulations should clarify that the prohibition against an ethics or medical committee considering a patient’s disability applies to both a pre-existing disability or any disability that is anticipated to arise from the person’s injury or disease.

This conclusion is further supported by healthcare regulations under Section 504 of the Rehabilitation Act. In connection with the updating of the 504 Regulations by the federal Department of Health and Human Services to explicitly prohibit discrimination in health care based on disability, the Department stated that “Where a person’s prognosis is the result of impairments in a major bodily function, they would be considered a person with a disability….[as an example] In cases of illness or injury so severe that a person needs a ventilator and tube feeding, or where a person is regaining consciousness after brain injury… the individuals in these scenarios would almost certainly be covered under the definition of disability.”

The clarification we are asking for is consistent with both the intent of H.B. 3162 and federal law.

Thank you for your time and consideration.

Sincerely,

Diane Coleman, JD, President/ CEO

Lisa Blumberg, JD, Consultant