WASHINGTON, D.C. — Today, Congresswoman Kat Cammack (R-FL-03) and Congresswoman Debbie Dingell (D-MI-06) introduced the bipartisan Charlotte Woodward Organ Transplant Discrimination Prevention Act. Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) introduced the Senate companion on Tuesday.
The bill prohibits discrimination against people with disabilities in the organ transplant system. It upholds, clarifies, and builds upon rights established in the 1990 Americans with Disabilities Act of 1990, Sec. 504 of the Rehab Act, and Sec.1557 of the Affordable Care Act. Additionally, the bill prohibits covered entities from determining that an individual is ineligible to receive a transplant, deny an organ transplant or related service, refuse to refer the individual to an organ transplant center, refuse to place an individual on a waiting list, or decline insurance coverage for a transplant or related service based solely on the fact that the individual has a disability.
“I’m pleased to join my bipartisan colleagues on both sides of the aisle in introducing the Charlotte Woodward Organ Transplant Discrimination Prevention Act. Organ transplants and other lifesaving treatments should not be subjective,” said Rep. Kat Cammack. “In my district, a young infant with Down syndrome, Baby Zion, was denied a lifesaving heart transplant and passed away as a result in 2021. His life was worth saving and we’re fighting to end discrimination in the organ transplant system so the same thing never happens again.”
“It’s unconscionable that people with disabilities can be passed over for life-saving organ transplants based on discriminatory and subjective judgements and assumptions about their quality of life,” said Rep. Debbie Dingell. “I’m proud to introduce this legislation to guarantee that eligible individuals aren’t declined a transplant based on their disability, and ensure they have the support and services they need in post-operative recovery.”
“As Americans, we believe in the fundamental worth of every human being, regardless of their physical abilities. This bill will protect the rights of some of our most vulnerable citizens and ensure they are not discriminated against in their time of need,” said Senator Marco Rubio (R-FL). “I am proud to lead this effort with Senator Hassan and Rep. Cammack to ensure that all patients receive the same access to care, regardless of their disability status.”
Named for Charlotte Woodward, an adult with Down syndrome who received a lifesaving transplant over a decade ago, the bill also recognizes the importance of auxiliary aids and services, the ability of an individual’s support network to help with post-operative care, and the need for reasonable modifications to policies and procedures to make organ transplant systems and facilities more accessible to those with disabilities.
Rep. Cammack’s inspiration for introducing the bill is Baby Zion Sarmiento from Ocala, Florida. Zion was born with Down syndrome and a heart defect in June 2021. Following 40 days in the NICU and five open-heart surgeries, Zion passed away after being denied a heart transplant because of his disability.
