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Reps. Jaime Herrera Beutler, Katie Porter Introduce Organ Transplant Legislation

Bill seeks to prevent disability-based discrimination of organ transplant recipients

U.S. Representatives Jaime Herrera Beutler (WA-03) and Katie Porter (CA-45) today introduced the Charlotte Woodward Organ Transplant Discrimination Prevention Act, which will prohibit using an individual’s physical or mental disability as the sole basis of determining their eligibility for an organ transplant.

The legislation, named after Charlotte Woodward, a vocal advocate against discrimination who has Down syndrome and received a heart transplant in 2012, helps clarify that doctors, hospitals, transplant centers and other health care providers are prohibited from denying access to necessary organ transplants solely on the basis of a qualified individual’s disability.

“There are misconceptions that people with disabilities can’t manage the treatment needed after an organ transplant or wouldn’t benefit from such an operation – and those claims are simply not true,” Herrera Beutler said. “Charlotte Woodward is a wonderful woman with Down syndrome who is also the namesake for this legislative solution. Charlotte has been sharing her experience of successfully receiving and managing a heart transplant in order to put an end to this discrimination and help more people receive the life-saving gift of organ donation. I’m proud to introduce legislation with my colleague, Rep. Katie Porter, to ensure that people with disabilities aren’t turned away when they’re in need of life-saving organ transplant.”

“Too often, discrimination stops Americans with disabilities from getting the lifesaving organ transplants they need,” Porter said. “I’m proud to partner with Congresswoman Herrera Beutler on critical legislation that bars healthcare providers from denying necessary transplants solely because an individual has a disability. These protections for Americans with disabilities and their families will save lives.”

“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,” Charlotte Woodward said. “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.”

According to the National Down Syndrome Society, a Stanford University study found that 85% of pediatric transplant centers consider intellectual or developmental disability (ID/DD) as a factor in their determinations of transplant eligibility at least some of the time.

Additionally, the National Working Group on Disability and Transplantation found that 52% of people with ID/DD receive a referral for a specialist evaluation, and 33% of those who are referred are never evaluated.