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.
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.”
