Charlotte Woodward Organ Transplant Discrimination Prevention Act Passes House

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View the original release here.

WASHINGTON, D.C. (September 23, 2024) — Today, Congresswoman Kat Cammack's bill, H.R. 2706, the Charlotte Woodward Organ Transplant Discrimination Prevention Act, passed the House of Representatives.

 

The bill is named after Charlotte Woodward, an adult woman with Down syndrome who received a lifesaving heart transplant over 12 years ago. Congresswoman Cammack's introduction of the bill was inspired by 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.

 

"This is a monumental day for all of us," said Rep. Kat Cammack. "I want to thank Charlotte, Bobbi and Josh Sarmiento, and all of the advocates who have worked hard to get this bill to this point. We're inspired by your stories and will continue to fight for this issue so no other American experiences what the Sarmiento family—and so many others—did.

 

"I'm grateful to my colleague, Rep. Debbie Dingell, for her partnership and work on this bill and to Senator Rubio for his leadership on this issue in the Senate. Finally, I extend my thanks to Energy & Commerce Committee Chair Cathy McMorris Rodgers for her leadership on this issue and so many others affecting this community," she added.

 

The legislation prohibits discrimination against people with disabilities in the organ transplant system by upholding, clarifying, and building upon rights established in the 1990 Americans with Disabilities Act (ADA). Additionally, it prohibits covered entities from determining 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.

"It's unthinkable that people with disabilities are passed over for life-saving transplants based on discriminatory and subjective assumptions about their ability to comply with post-operative care," said Rep. Debbie Dingell. "This bill takes important action to ensure that all Americans, regardless of disability status, receive equitable access to the care they need. I'm glad to see it one step closer to becoming law."

"No one should be denied a life-saving organ transplant solely because they are living with a disability. I commend Rep. Cammack for her leadership on this important bill that will ensure all patients are treated fairly in the organ transplant system," said Energy & Commerce Committee Chair Cathy McMorris Rodgers.

 

"The passage of the Charlotte Woodward Organ Transplant Discrimination Act by the House of Representatives marks a monumental step towards ensuring that discrimination based solely on disability is eradicated from our organ transplant system" says Kandi Pickard, President and CEO of the National Down Syndrome Society (NDSS). "NDSS is proud to support this critical legislation, named after NDSS staff member and self-advocate, Charlotte Woodward, and thanks Congresswomen Kat Cammack and Debbie Dingell for their steadfast leadership in the House of Representatives. Discrimination against individuals with Down syndrome and other disabilities has no place in a system that is designed to save lives."

 

Congresswoman Cammack spoke about the bill this afternoon on the House Floor. View her remarks here and read an excerpt from her speech as prepared for delivery below.

 

"Baby Zion deserved the same chance at life as any other American but was denied a heart transplant by three doctors because he had Down syndrome and they decided 'they couldn't waste a heart.' Couldn't—WASTE—a heart.

 

The tragic story of Baby Zion, the courage of his parents Josh and Bobbi, and the drive of so many incredible advocates have led us today to H.R. 2706, the Charlotte Woodward Organ Transplant Discrimination Prevention Act, would prohibit health care providers and other entities from denying or restricting an individual's access to organ transplants solely based on an individual's disability."

 

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