Despite protections under current federal law, there are documented instances of discrimination against people with disabilities when they need life-saving organ transplants. NDSS is working to pass legislation at the federal and state level to prevent discrimination based solely on disability and to provide additional legal recourse to people with Down syndrome and other disabilities when they do face discrimination in the organ transplant process.
Introduced by Congresswomen Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) in the House and Senators Marco Rubio (R-FL) and Maggie Hassan (D-NH) in the Senate, the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235 / S. 3301) prohibits covered health care providers from discriminating against people with disabilities seeking an organ transplant because of their disability. If passed, this legislation will uphold, clarify, and build upon rights established in the Americans with Disabilities Act of 1990, Sec. 504 of the Rehab Act and Sec. 1557 of the Affordable Care Act.
The bill is named for Charlotte Woodward, an advocate with Down syndrome and member of the NDSS staff who received a life-saving heart transplant almost a decade ago. Since then, she has advocated tirelessly to ensure others with Down syndrome and other disabilities have the same access to life-saving care that she did.
Until a federal law is passed, NDSS will continue to work to protect people with disabilities from discrimination in organ transplants at the state-level as well. Currently, 30 states have laws in place that prohibit this discrimination:
NDSS has compiled the following resources to assist those who wish to bring a bill to their state legislature regarding nondiscrimination in organ transplantation for people with disabilities:
Being an Ambassador helps me to understand other people with disabilities and how I can help get more rights for people with Down Syndrome. I like to speak for others who don’t have a voice.— Mary Borman