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ALACHUA CHRONICLE: House passes bipartisan bill to end organ transplant discrimination against individuals with disabilities

Last week, the U.S. House of Representatives passed the Charlotte Woodward Organ Transplant Discrimination Prevention Act, a landmark, bipartisan bill that protects Americans with disabilities from being denied life-saving organ transplants solely based on their disability. This legislation, sponsored by Representatives Kat Cammack (R-FL-03) and Debbie Dingell (D-MI-06), ensures that disability is never used as a barrier to receiving critical medical care.

This bill upholds, clarifies, and builds upon protections established under the Americans with Disabilities Act of 1990, Section 504 of the Rehabilitation Act, and Section 1557 of the Affordable Care Act. It prohibits discrimination by covered entities–including hospitals, transplant centers, and insurance providers–in the organ transplant process. 

Specifically, the Charlotte Woodward Organ Transplant Discrimination Act bars the following actions solely based on disability: 

• Determining that an individual is ineligible to receive an organ transplant
• Denying an organ transplant or related medical services
• Refusing to refer an individual to a transplant center
• Declining to place an individual on a transplant waiting list
• Denying insurance coverage for a transplant or related services

“Baby Zion, a young infant with Down syndrome in Florida’s Third Congressional District, was denied a lifesaving heart transplant in 2021, and passed away. His life was worth saving, and we’re fighting to end discrimination in the organ transplant system so the same thing never happens again,” said Congresswoman Cammack. “I am honored to work alongside Congresswoman Dingell and my colleagues on both sides of the aisle in safeguarding the rights of those with disabilities.”

“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 Congresswoman 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 thankful to Rep. Kat Cammack for her partnership, and most of all, I’m thankful to Charlotte for her incredible energy, advocacy, and commitment to making a positive change. I’m glad to see it one step closer to becoming law. We need to get it done.”

About the bill: 

Named for Charlotte Woodward, an adult with Down syndrome who received a lifesaving heart 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 assist 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 legislation is Baby Zion Sarmiento, from Ocala, Florida. Zion was born with Down syndrome and a heart defect in June 2021. After spending 40 days in the NICU and enduring five open-heart surgeries, Zion passed away after being denied a heart transplant because of his disability.