Rep. Cammack's Charlotte Woodward Organ Transplant Discrimination Prevention Act Passes Energy & Commerce Committee

WASHINGTON, D.C. — Today, Congresswoman Kat Cammack (R-FL-03) and Congresswoman Debbie Dingell (D-MI-06)'s bill, the Charlotte Woodward Organ Transplant Discrimination Prevention Act, passed through the Energy & Commerce Committee. 

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.

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. 

Rep. Cammack's inspiration for introducing the bill is 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.

The bill has received the endorsement of 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.

The next stop for the bill is consideration before the full House of Representatives.

Read the text of the legislation here and watch Rep. Cammack's remarks during today's hearing here.

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