Last week, U.S. Sen. Marco Rubio, R-Fla., unveiled a proposal “which would ensure that providers cannot discriminate against patients in need of an organ transplant solely on the basis of a disability.”
Rubio introduced the “Charlotte Woodward Organ Transplant Discrimination Prevention Act” on Thursday with U.S. Sen. Maggie Hassan as a co-sponsor.
“More than 25 states, including Florida, currently prohibit organ transplantation discrimination. However, discrepancies across state laws and delays in delivering relief to patients have 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,” Rubio’s office noted.
“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 Woodward said.
The National Down Syndrome Society is behind the proposal which was sent to the U.S. Senate Health, Education, Labor, and Pensions Committee on Thursday.
U.S. Rep. Jamie Herrera-Beutler, R-Wash., introduce the bill in the U.S. House back in February and she has reeled in 30 co-sponsors including U.S. Reps. Kat Cammack, R-Fla., and Greg Steube, R-Fla.