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Representatives Debbie Dingell (D-MI), co-chair of the Bipartisan Disabilities Caucus, and Kat Cammack (R-FL) today reintroduced the bipartisan Charlotte Woodward Organ Transplant Discrimination Prevention Act.
 
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. 
 
The bill passed the House in September of last year after making its way through the House Committee on Energy & Commerce. 
 
"It's unconscionable that people with disabilities can be passed over for life-saving organ transplants based on discriminatory and subjective judgments and assumptions about their quality of life," said Rep. Debbie Dingell. "I'm proud to re-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."
 
"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."

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 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. Reps. Cammack and Dingell have been the bill's sponsors for the last several years. 

The bill is supported by the National Down Syndrome Society (NDSS), Autism Speaks, Autism Society of America, the National Down Syndrome Congress, the National Fragile X Foundation, Family Voices National, the Association of Organ Procurement Organizations (AOPO), and LuMind IDSC Foundation.
 
"I am so grateful that my bill is being reintroduced. We must ensure that all people with disabilities are given the same opportunity and access to organ transplantation that I had," said Charlotte Woodward, Programs Associate at the National Down Syndrome Society (NDSS) and the bill's namesake. "People with disabilities have inherent value and worth and should not be ignored in the organ transplantation process."

"For far too long, individuals with Down syndrome and other disabilities have been unfairly denied life-saving organ transplants due to outdated and discriminatory assumptions," said Kandi Pickard, President and CEO of the National Down Syndrome Society (NDSS)."The reintroduction of the Charlotte Woodward Organ Transplant Discrimination Prevention Act is a critical step toward ensuring that every individual, regardless of disability, has equal access to the care they deserve. We commend Congresswomen Kat Cammack and Debbie Dingell for their steadfast leadership and dedication to ending this injustice."

"We are grateful to Congresswoman Cammack and Congresswoman Dingell for their bipartisan leadership to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act," said Keith Wargo, President and CEO of Autism Speaks. "Autistic individuals deserve equitable access to healthcare; yet, too many people experience bias or discrimination due to their autism diagnosis when seeking an organ transplant. Charlotte's bill strengthens protections for autistic individuals, ensuring adequate supports and accommodations for a successful transplant evaluation, procedure and recovery."

  
Watch Rep. Dingell’s remarks on the bill last Congress in the Energy and Commerce Committee here.