People with intellectual and developmental disabilities often face difficulty accessing needed organ transplants, but now a bill is moving through Congress that aims to address that disparity.
The U.S. House of Representatives approved what’s known as the Charlotte Woodward Organ Transplant Discrimination Prevention Act this week.
The measure, which was first proposed in 2019, bars discrimination against people with disabilities in the organ transplant system, ensuring that individuals are not denied a transplant, refused a referral to a transplant center, kept off a waiting list or declined insurance coverage for a transplant because they have a disability.
Advertisement – Continue Reading Below
In addition, the bill offers individuals with disabilities who file complaints of organ transplant discrimination access to an expedited review process through the U.S. Department of Health and Human Services’ Office for Civil Rights.
“It is unthinkable that people with disabilities are passed over for lifesaving transplants based on discriminatory and subjective assumptions about their ability to comply with post-operative care. With this legislation, we can take action and ensure that all Americans, regardless of their disability status, receive equitable access to the care they need,” said Rep. Debbie Dingell, D-Mich., a sponsor of the legislation.
Several families have spoken out in recent years accusing doctors of denying their loved ones needed organ transplants due to their intellectual or developmental disabilities. In 2019, the HHS Office for Civil Rights reached a resolution with the University of North Carolina Health Care system after a doctor there allegedly determined that an individual with an intellectual disability would not be a good candidate for a heart transplant because of the person’s disabilities and the fact that the individual did not live independently.
More recently, Rep. Kat Cammack, R-Fla., who is sponsoring the bill, said that an infant with Down syndrome in her district died in 2021 after he was denied a heart transplant.
A 2023 study found that these experiences are not uncommon. When researchers looked at adults nationwide with end-stage renal disease, they found that those with developmental disabilities were 54% less likely to be evaluated for a kidney transplant and 62% less likely to receive one. However, the individuals with developmental disabilities who received transplants ultimately had similar outcomes to those without such diagnoses.
In updated regulations issued last year, HHS clarified that disability bias has no place in decision-making about organ transplants, but advocates said that legislation remains necessary.
“While the HHS regulations issued last year under Section 504 were a meaningful step forward in addressing discrimination in the organ transplant process, they are vulnerable to reversal by future administrations and do not fully capture the intent or scope of the Charlotte Woodward Organ Transplant Discrimination Prevention Act,” said Michelle Sagan, director of communications and marketing at the National Down Syndrome Society. “Notably, the regulations omit the critical enforcement provisions at the HHS Office for Civil Rights, which are central to ensuring the timely and life-saving relief to individuals and families facing this form of discrimination.”
The bill is named for Charlotte Woodward, who has Down syndrome and received a heart transplant in 2012. She now works as a programs associate at the National Down Syndrome Society.
“It’s extremely significant,” David Card of the National Disability Rights Network said of the legislation, which is supported by many disability advocacy groups. “Too often the lives of people with disabilities are viewed as less than or not worth living. This legislation takes a step toward correcting that injustice by ensuring that people with disabilities are not discriminated against on the basis of their disability to be on the organ waitlist.”
The measure now heads to the Senate for consideration.
