Discrimination in Kidney Transplants

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

Brittany N. Hand and colleagues have an article at JAMA Surgery titled "Comparing Kidney Transplant Rates and Outcomes Among Adults With and Without Intellectual and Developmental Disabilities."

Key Points

Question How do rates of kidney transplant and transplant outcomes differ for adults with vs adults without intellectual and developmental disabilities (IDD)? [see 2/16/23 post]

Findings In this cohort study, adults with IDD were 54% less likely to be evaluated for and 62% less likely to receive a kidney transplant than adults without IDD. However, among those who received a kidney transplant, postoperative outcomes were similar for adults with and without IDD.

Meaning These data suggest the IDD should not categorically disqualify adults from transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.
Abstract

Importance Improving equity in organ transplant access for people with intellectual and developmental disabilities (IDD) is a topic of social discourse in mainstream media, state legislation, and national legislation. However, few studies have compared evaluation rates, transplant rates, and outcomes among adults with and without IDD.

Objective To compare rates of kidney transplant and transplant-specific outcomes between propensity–score matched groups of adults with end-stage kidney disease (ESKD [also referred to as end-stage renal disease (ESRD)]) with and without co-occurring IDD.

Design, Setting, and Participants This retrospective cohort study included all Medicare inpatient and outpatient standard analytical files from 2013 through 2020. A total of 1 413 655 adult Medicare beneficiaries with ESKD were identified. Propensity–score matching was used to balance cohorts based on age, sex, race, follow-up duration, and Charlson Comorbidity Index. The matched cohorts consisted of 21 384 adults with ESKD (10 692 of whom had IDD) and 1258 kidney transplant recipients (629 of whom had IDD). Data were analyzed between June 1, 2022, and August 1, 2022.

Exposure IDD.

Main Outcomes and Measures Evaluation for kidney transplant, receipt of kidney transplant, perioperative complications, readmission, mortality, graft rejection, and graft failure.

Results Of the 21 384 propensity–score matched adults with ESKD, the median (IQR) age was 55 (43-65) years, 39.2% were male, 27.4% were Black, 64.1% were White, and 8.5% identified as another race or ethnicity. After propensity score matching within the ESKD cohort, 633 patients with IDD (5.9%) received a kidney transplant compared with 1367 of adults without IDD (12.8%). Adults with IDD were 54% less likely than matched peers without IDD to be evaluated for transplant (odds ratio, 0.46; 95% CI, 0.43-0.50) and 62% less likely to receive a kidney transplant (odds ratio, 0.38; 95% CI, 0.34-0.42). Among matched cohorts of kidney transplant recipients, rates of perioperative complications, readmission, and graft failure were similar for adults with and without IDD.

Conclusions and Relevance Using the largest cohort of adult kidney transplant recipients with IDD to date, the study team found that rates of evaluation and transplant were lower despite yielding equivalent outcomes. These data support consideration of adults with IDD for kidney transplant and underscore the urgent need for antidiscrimination initiatives to promote the receipt of equitable care for this population.

Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

Sophie Putka at MedPage Today:

Despite similar kidney transplant outcomes, adults with intellectual and developmental disabilities (IDD) were less likely than the general population to be evaluated for transplant and less likely to receive one, a propensity-score matched analysis found.

In the cohort of more than 21,000 end-stage kidney disease (ESKD) patients on Medicare, multivariable analysis showed that patients with IDD were 54% less likely than those without IDD to be evaluated by a transplant surgeon (OR 0.46, 95% CI 0.43-0.50) and 62% less likely to receive a transplant (OR 0.38, 95% CI 0.34-0.42), according to researchers led by Brittany Hand, PhD, of The Ohio State University School of Health and Rehabilitation Sciences in Columbus.

Among the subset evaluated by a transplant surgeon, about a fourth of the patients included overall, those with IDD had 51% lower odds of receiving a transplant (OR 0.49, 95% CI 0.43-0.55), the group reported in JAMA Surgery.
...

Only some states have passed laws that explicitly prohibit discrimination against people with disabilities in transplantation, they noted, adding that there's a need for strong evidence to back new policies -- like a bill at the federal level that would prohibit healthcare providers from denying someone access to an organ transplant because of a disability.


"We echo the authors' assertion that there is an urgent need to address bias and curb discrimination against this vulnerable patient population," said Melissa Chen, MD, and Alexander Toledo, MD, both of the University of North Carolina at Chapel Hill, writing in an accompanying editorial.

Organ Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

A release from Senator Maggie Hassan (D-NH):

U.S. Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act (S.3301), which would ensure that providers cannot discriminate against patients in need of an organ transplant solely on the basis of a disability. Congresswoman Jamie Herrera-Beutler (R-WA) introduced companion legislation in the U.S. House of Representatives earlier this year (H.R. 1235).

More than 25 states, including Florida, currently prohibit organ transplantation discrimination. However, discrepancies across state laws and delays in delivering relief to patients has made enforcement difficult. The legislation would set a baseline for states by clarifying that providers must comply with the protections afforded to patients with disabilities. The bill would also expedite injunctive relief through federal courts for patients and families that experienced discrimination due to a disability in the transplantation process.

The bill is named after Charlotte Woodward, an advocate with Down syndrome who received a heart transplant nine years ago and has fought to raise the issue of organ transplant discrimination in various states, including her home state of Virginia. Recently in Florida, Zion Sarmiento, who was born on June 15, 2021 with a congenital heart defect and Down syndrome, was denied a heart transplant and tragically passed away on October 8, 2021.

“It is heartless to discriminate against someone in need of an organ transplant because they have a disability,” Rubio said. “Zion, a 16-week old baby with Down syndrome, passed away because he was denied an organ transplant. Zion’s story is not only devastating, it is unacceptable. This legislation would honor Zion’s life and help ensure that what happened to him never happens to anyone else.”

"People with disabilities are too often overlooked and in being denied full inclusion can encounter hurdles that many of us cannot even begin to imagine, including when it comes to receiving the life-saving care of an organ transplant," Hassan said. “All individuals should be guaranteed quality of care, and that’s something I’ll always fight for. I’m proud to help lead this effort with Senator Rubio to make sure that discrimination has no place in medical care."

“As someone with Down syndrome who has had the opportunity to receive a life-saving heart transplant, I am so very, very grateful that this bill will give others the same,” Charlotte said.

“People with disabilities are no less deserving of life-saving organ transplants than people without disabilities,” National Down Syndrome Society President and CEO Kandi Pickard said. “We need a federal law to protect the rights of members of our community and to honor the value they bring to society. Charlotte’s bill reflects the interstate nature of the organ transplant system, recognizes the need for expedited review when access is denied, and establishes a legal framework for individuals and providers to seek truth and reach meaningful resolution.”

Curbing Discimination in Organ Transplants

 In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

Sara Reardon at NBC:

Denying organ transplants to people with intellectual and neurodevelopmental disabilities like Down syndrome or autism is common in the United States, even though it is illegal under the Americans with Disabilities Act.

According to a widely cited 2008 study, 44 percent of organ transplant centers said they wouldn't add a child with some level of neurodevelopmental disability to the organ transplant list. Eighty-five percent might consider the disability as a factor in deciding whether to list the child.

In Montana, a bill called "Griffin's Law" would address the problem. 

If the bill passes the state House and is signed by the governor, Montana would become the 17th state to ban such discrimination. Similar bills are pending in seven other states and in Congress. Some experts doubt that such laws will be enforceable enough to eliminate discrimination.

...
Sam Crane, legal director of the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said some bills — including Montana's — address the concern about post-transplant care. They would ban transplant centers from basing their decisions solely on people's ability to carry out post-transplant requirements and require investigations into sources of support to help patients comply.

Crane said physicians could still come up with pretexts to avoid adding disabled people to the transplant list if they believe people without disabilities would benefit more from receiving organs.

"It's very difficult to prove discrimination in that sort of situation," she said.

A similar nondiscrimination bill has been introduced in the U.S. House, but Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the Americans with Disabilities Act and other federal laws already prohibit that kind of discrimination, making federal legislation unnecessary. Gallegos said states could also enact stricter requirements than the federal government's and fit them to their specific medical systems.

Ending Discrimination in Organ Transplantation

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

A release from Rep. Jaime Herrera Beutler:

U.S. Representatives Jaime Herrera Beutler (WA-03) and Katie Porter (CA-45) today reintroduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which will prohibit using an individual’s mental or physical disability as the sole basis of determining their eligibility for an organ transplant.

The bill, named after Charlotte Woodward, an advocate fighting against discrimination who has Down syndrome and received a heart transplant in 2012, clarifies that doctors, hospitals, transplant centers and other health care providers are prohibited from denying access to organ transplants solely based on a qualified individual’s disability.

“If an individual needs access to a life-saving organ transplant, they shouldn’t be denied based on their disability – either physical or mental,” Herrera Beutler said. “I’m proud to reintroduce this important legislation today named after Charlotte Woodward, a relentless advocate against discrimination who has Down syndrome, to help ensure people with disabilities receive the same treatment and access to life-saving organ transplants.”

“A patient’s disability status shouldn’t stop them from getting the care they need, including a lifesaving organ transplant,” Porter said. “I’m proud to renew my push with Congresswoman Herrera Beutler to prevent discrimination against Americans with disabilities in getting necessary transplants. Discrimination has no place in our healthcare system.”

“As one of the very few people in the world with Down syndrome who has had the opportunity to receive a lifesaving heart transplant, I am so very, very grateful that people with disabilities will have the same opportunity as I in the future,” Charlotte Woodward said. “In the past, too many precious lives were lost due to discrimination in organ transplantation. I am so very, very thankful for the generosity of my heart donor and that of her loving family. Her gift has allowed me to live my life to the fullest and to go on to advocate for others to be able to do the same. The passage of this bill will be a monumental step towards a more just world, and I am proud to play a part in it.”

Herrera Beutler and Porter previously introduced this legislation in the 116th Congress.

American Academy of Pediatrics on Disability Discrimination in Organ Transplants

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities.   A number of posts have provided details on discrimination in organ transplantation.

From the American Academy of Pediatrics:

AAP: Scarcity of transplant organs does not justify excluding children with disabilities
Mindy B. Statter, M.D., M.B.E., FACS, FAAP and Garey H. Noritz, M.D., FACP, FAAP
April 20, 2020 AAP Policy

The demand for transplantable solid organs far exceeds the supply of deceased donor organs. Like the debate as to which patients will receive lifesaving interventions during the coronavirus disease 19 (COVID-19) pandemic, individual transplant programs must make eligibility determinations based on the principle of utilitarianism — doing the greatest amount of good for the greatest number of people.

Given the scarcity of solid organs for transplantation, allocation to those most likely to gain the most benefit takes into consideration both medical and psychosocial factors. Children with intellectual and developmental disabilities (IDDs) historically have been excluded as potential recipients of organ transplants.

A new AAP policy states that denying transplantation to people with disabilities on the basis of their disability and supposed lower quality of life may constitute illegal and unjustified discrimination.

The policy, Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients from the AAP Committee on Bioethics and Council on Children with Disabilities, is available at https://pediatrics.aappublications.org/content/early/2020/04/16/peds.2020-0625 and will be published in the May issue of Pediatrics.

Facts, ethical issues

The decision to initiate transplant must include consideration of both the individual’s quality of life with the diseased organ and the potentially improved quality with the transplanted organ.

The notion that children with disabilities have a lower quality of life than children with typical development is both incorrect and ethically problematic in decisions regarding organ transplantation (Albrecht GL, Devlieger PJ. Soc Sci Med. 1999;48:977-988).
Transplant success rates in patients with disabilities are as good as in the general population, so care must be taken to ensure that medical and psychosocial factors that may affect the transplant outcome are not confused with judgments of an individual’s social worth (Galante NZ, et al. Nephrol Dial Transplant. 2010;25:2753-2757).

The presence of an IDD is relevant but should not be the determinative factor.
Children without disabilities have no more claims to scarce resources, such as organ transplants, than do children with disabilities. In adhering to the ethical principles of respect for persons, utility and justice, children with IDDs should not be excluded from the potential pool of recipients and should be referred for evaluation as recipients of organ transplants, according to the policy statement. Deceased children with disabilities can be organ donors and contribute to the supply of solid organs, so it would be unfair to categorically exclude them as organ transplant recipients.

Recommendations

Patients should not be excluded from consideration for solid organ transplant solely on the basis of an intellectual or developmental disability.

Transplantation programs should standardize the definition and assessment of intellectual disability so that transplant decisions can be individualized, equitable and transparent. The transplant team should consider the individual’s cognitive and adaptive skills. There should be concordance among the respective solid organ transplant programs within an institution in defining IDD to avoid biases.

The transplant evaluation is a collaborative process that should occur in person rather than by medical record review. It should include caregivers such as therapists and developmental specialists who can demonstrate the patient’s degree of function, as well as professionals with expertise in the evaluation and management of individuals with intellectual disability.

Drs. Statter and Noritz are lead authors of the policy statement. Dr. Statter is a member of the AAP Committee on Bioethics. Dr. Noritz is a member of the Council on Children with Disabilities Executive Committee.

Organ Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

The National Council on Disability reports on discrimination in organ transplantation:

Physicians may also fail to recommend standard therapies or treatments to people with disabilities that they would recommend immediately to patients without disabilities. For example, the NCD research team interviewed Jessica Sunshine Bodey, the mother of Lief O’Neill, an 11-year-old boy in critical need of a heart transplant. While the family was informed that Lief was being denied a transplant because he had autism—a decision they found discriminatory—Lief’s medical team also did not inform them that bridge therapies were available to extend his life while he waited for a transplant. The bridge therapy in question, a left ventricular assist device, or LVAD, is considered a standard “bridge therapy” on the way to receiving a transplanted heart.50 Lief ultimately needed four consecutive LVADs to survive. 

... 

In 2018, Kansas and Ohio both passed similar nondiscrimination laws. Recently, and after years of debate, Pennsylvania did likewise. John Sarbatina, a Pennsylvania state
senator, first introduced “Paul’s Law” in 2014, named after Paul Corby, a man with autism who was denied a heart transplant. The law, like those that passed in other states, seeks to prohibit discrimination on the basis of disability, and prevent individuals with “‘an adequate support system’” from being denied transplants due to an inability to comply with postoperative regimens. Note, however, that Pennsylvania’s bill lacks the detail of many of its predecessors. The bill provides only that discrimination solely on the basis of disability is prohibited, and that unless “following an individualized evaluation” a disability is deemed to be “medically significant,” individuals who have a “necessary support system” should not be rejected for an inability to comply with the postoperative regimen.

.
..
According to Ms. Bodey, Lief only survived because a young doctor argued strenuously in their favor to Lucile Packard Children’s Hospital at Stanford, which finally did accept Lief. During the meeting with doctors at Stanford, Stanford saw Lief typing to communicate and, “at the 11th hour,” accepted him. Lief was quickly flown to Stanford where he received an LVAD. 

Ms. Bodey explained in her interview that upon her arrival at Stanford, she was told by the doctors that the transplant was unprecedented because they had never transplanted a heart into a child with autism as “severely affected” as Lief. Ms. Bodey noted that the very fact that Lief’s transplant was seen as so revolutionary by Stanford meant that few children like Lief had ever been provided with a heart transplant before.

Lief’s road to transplantation was still difficult even after he was accepted at Stanford.
According to Ms. Bodey, his LVAD failed three times. In other words, Lief had to have five separate open-heart surgeries: four to insert LVADs, and one to transplant the heart.
Nonetheless, Ms. Bodey reported Lief handled the surgeries extremely well, enduring a year in the hospital, when prior to his hospitalization, he had been unable sit in a restaurant for more than a few minutes. Lief himself attributed his endurance to the knowledge that his life was at stake.

Mr. Corby, as of yet, has not received a heart transplant. His mother reports that his
condition is stable, but that because of previous rejections following evaluation, he does not wish to undergo any further evaluations unless he is guaranteed placement on the transplant recipient list. As a result, he and his family are not seeking further evaluations by transplant centers at this time.

Ohio Bill Would Forbid Transplant Discrimination

In The Politics of Autism, I discuss the  civil rights of people with autism and other disabilities. 

People with autism and other disabilities face discrimination when they need organ transplants.

At WKEF/WRGT, Kelly May reports on Jackie Ward, a Shelby County mom who is pushing to change Ohio law after her daughter was denied a heart transplant, doctors said, because of her Down Syndrome.

Currently, Ohio law is silent on the issue, there's nothing that says either way that developmental disabilities can play a role in deciding who gets an organ transplant.

House Bill 332 would make it illegal to make developmental disabilities a deciding factor.

...
i n Ohio there's no law that says people with developmental disabilities should have equal medical access to organ transplant.

Miamisburg Representative Niraj Antani (R - Directict 42) is a primary sponsor of the bill and said, "They're told that they won't be able to follow the post operation regimen, their body won’t be able to handle it, or that its implied that their life is less worthy and that's wrong."

The bill passed unanimously in Ohio's House of Representatives this week.

"To most people it's shocking that this is even something that we have to pass a law about," Jackie said.

Thankfully, after Ellie was denied the transplant, she defied the odds and survived the risky heart surgery, but Jackie says that doesn't mean she won't need a transplant in the future.

Transplants and Discrimination

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

Sunshine Bodey had to struggle to get her autistic son a heart transplant.  At The Washington Post, she describes the barriers:

Transplant programs are given wide latitude in deciding whether to take a patient’s disability into account. According to a Post article published in March, the 815 transplant programs in the United States may take into account neurocognitive disabilities when making decisions about lifesaving organ transplants. Whether programs do so varies. A 2008 study by the Stanford Center for Biomedical Ethics found that 43 percent of the 50 pediatric heart, liver and kidney transplant programs surveyed always or usually considered neurodevelopmental delays, while 39 percent rarely or never did.

This discretion creates an opening for ingrained stereotypes and false assumptions to influence decisions. Some transplant teams might assume that people with disabilities are incapable of making it through the rigors of a grueling marathon of medical procedures involved in a transplant, or that they’re unable to care properly for themselves post-surgery.

While the Americans With Disabilities Act explicitly prevents discrimination in medicine, there is no mechanism for enforcement. This leaves states on the front line of not just ensuring the prevention of the discrimination but also giving families an effective and time-sensitive path of recourse outside of adjudication. Our state, Oregon, in June joined California, New Jersey, Maryland, and Massachusetts in the fight. More states should adopt these policies prohibiting discrimination.

Discrimination in Transplant Decisions

In The Politics of Autism, I discuss the civil rights of people with autism and other disabilities. 

Previous posts discussed Paul Corby, a young ASD man who did not qualify for a heart transplant at the University of Pennsylvania.

Lenny Bernstein reports at The Washington Post:

When David Magnus, director of the Center for Biomedical Ethics at Stanford University Medical School, surveyed 50 pediatric heart, liver and kidney transplant programs in 2008, he found that 39 percent rarely or never considered neurodevelopmental delays in deciding whether to list someone as eligible, and 43 percent always or usually did. The results also varied depending on whether the disability was moderate, severe or profound and which organ was being transplanted.

“It does appear that the programs use this psychosocial criterion to distinguish among candidates, although consensus does not exist within the field to guide its usage,” the researchers wrote in the journal Pediatric Transplantation.

Some efforts are underway to change that. In October, 30 members of Congress called on the Department of Health and Human Services’ civil rights office to issue instructions that discrimination in organ transplantation violates the Americans With Disabilities Act. They also want the agency to tell transplant teams to account for a disabled person’s support system in deciding whether he or she will be able to stick to a postoperative health-care regimen, which is typically a factor in evaluating patients for a transplant.

An HHS spokesperson said in a statement that the agency is working “to clarify the obligations of covered entities participating in the transplant process and to provide equal access to their programs to individuals with disabilities.”

Four states have passed laws containing similar restrictions. In Pennsylvania, State Sen. John Sabatina (D) has introduced “Paul’s Law,” an attempt to outlaw discrimination in transplant decisions that is named after Corby. And Halpern suggested in the New England Journal of Medicine last month that regional panels should be established to adjudicate disputes over eligibility for a transplant.

Transplant Discrimination

Elizabeth Cohen writes at CNN:

"We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them," said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

"We absolutely know this happens. It's a huge problem," said David Magnus, director of the Center for Biomedical Ethics at Stanford University. "It's real people sitting in a room making these tough decisions, and it's not surprising their own prejudices and biases influence them."

He points to the case of Amelia Rivera, a New Jersey girl with disabilities who was denied a kidney transplant last year, and to a survey he conducted in 2008 showing that more than four out of 10 pediatric transplant centers say they always or usually consider a child's neurodevelopmental delays when making a transplant decision, even though studies have found children with these delays fare just as well medically after a transplant as other children.

...
Ari Ne'eman, president of the Autistic Self Advocacy Network, agreed that doctors sometimes "blow smoke" at patients with disabilities.

"Doctors give faux medical reasons. On further scrutiny, they don't stand up," said Ne'eman, who wrote a policy brief on the issue. "When someone with a disability is looking for a transplant, discrimination is the norm."

Transplant doctors said they don't discriminate against people with disabilities, but that disabilities need to be considered when making transplant decisions.

For example, Taylor, a heart transplant cardiologist at the Cleveland Clinic, said physicians must weigh whether a patient -- any patient -- is willing and able to follow complicated post-transplant medication directions. If the patient doesn't follow doctors' orders, the body could reject the new organ.

"If I were to go in front of the transplant committee, they'd want to stop and see if I'm some pompous doctor who's not going to listen to instructions," he said. "That has to be taken into account."

Organ Transplants and Paul's Law

The Philadelphia Inquirer reports:

Inspired by the case of a young man with autism who was denied a place on a heart-transplant waiting list, a Philadelphia legislator will soon begin gathering support for a state bill that would prohibit discrimination against people with disabilities who want organ transplants.

Rep. John Sabatina (D., Phila.) plans to introduce "Paul's Law" in honor of Paul Corby of Pottsville, whose mother, Karen, said doctors at the Hospital of the University of Pennsylvania refused to put him on the heart-transplant list because of his autism. Her petition on change.org protesting the decision has drawn more than 289,000 signatures.

The bill would let programs deny transplants to people with disabilities only if the disabilities are "medically significant" to the procedure. People with disabilities could not be denied because they cannot comply with complex post-transplant medical regimens as long as they have an adequate support system.

"It's the moral and correct thing to do," said Sabatina, who had a half-sister with an intellectual disability. He hopes for passage in 2014.

California has a similar law, and New Jersey passed one over the summer after Amelia Rivera, who has an intellectual disability, was turned away by Children's Hospital of Philadelphia's transplant program. The hospital later apologized and Rivera, 5, received one of her mother's kidneys in July.