Bill preventing disability discrimination in organ transplants clears first hurdle

A bill which would ban organ transplant discrimination based on disability has passed the House Energy and Commerce Subcommittee on Health, clearing its first hurdle towards becoming law.

The Charlotte Woodward Organ Transplant Discrimination Prevention Act, or HR 2706/SB 1183, is a bipartisan effort to ensure people with disabilities aren’t denied life-saving organ transplants. Representatives Kat Cammack (R-Fla.) and Debbie Dingell (D-Mich.) in the House and Senators Marco Rubio (R-Fla.) and Maggie Hassan (D-N.H.) introduced the bill in both houses of Congress, with the support of the National Down Syndrome Society (NDSS). The next step will be for the bill to be voted on by the House Energy & Commerce Committee.

The bill was originally introduced by Rubio in 2021 after Zion Sarmiento, a baby born with Down syndrome, died when four hospitals refused to give him a heart transplant. Zion was just 16 weeks old. Reportedly, the family was told that it would be a “waste of a heart.”

That bill failed, but Rubio reintroduced the bill last year, along with Hassan, Cammack, and Dingell. “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,” Rubio said in a press release. “I am proud to lead this effort with Senator Hassan to ensure that all patients receive the same access to care, regardless of their disability status.”

Rep. Debbie Dingell

@RepDebDingell

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This year is Charlotte’s 12th heartaversary @NDSS ❤️ I’m honored to co-lead the Charlotte Woodward Organ Transplant Discrimination Prevention Act to guarantee no one is denied a transplant based on their disability. Charlotte’s strength and love continues to inspire so many.

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5:03 PM · Feb 13, 2024

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“No one should be denied a life-saving procedure or transplant because of a disability,” Dingell said in her press release. “The Charlotte Woodward Organ Transplant Discrimination Prevention Act will prohibit discrimination against people with disabilities in the organ transplant system. The bill is named for Charlotte Woodward, an incredible woman who was born with Down syndrome. It’s fitting that the hearing for her namesake bill was held on Valentine’s Day since Charlotte received a lifesaving heart transplant in 2012. She celebrated her 12th heartiversa[r]y last month and has dedicated her life to advocating for people with disabilities to receive equal access.”

A 2008 study from the Autism Self-Advocacy Network found that 85% of pediatric transplant centers take neurodevelopmental status into consideration when approving or denying transplants. Furthermore, a 2016 letter sent to the U.S. Department of Health and Human Services’ Office for Civil Rights included a statement from Dr. Arthur Caplan, director of medical ethics for New York University’s Langone Medical Center, which said, “If the potential recipient is severely intellectually impaired… I do not think it makes sense to consider that child for a transplant.”

Charlotte Woodward has been advocating for an end to this discrimination for years. “As one of the very few people in the world with Down syndrome who has had the opportunity to receive a lifesaving heart transplant, I am so very, very grateful that people with disabilities will have the same opportunity as I in the future,” she said in a previous statement. “In the past, too many precious lives were lost due to discrimination in organ transplantation. I am so very, very thankful for the generosity of my heart donor and that of her loving family. Her gift has allowed me to live my life to the fullest and to go on to advocate for others to be able to do the same. The passage of this bill will be a monumental step towards a more just world, and I am proud to play a part in it.”

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