Overview
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. Learn more about the heart and Down syndrome here.
The Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235 / S. 3301)
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.
State Legislation
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, 34 states have laws in place that prohibit this discrimination:
- Arkansas (2021)
- Arizona (2022)
- California (1996)
- Colorado (2021)
- Delaware (2017)
- Florida (2020)
- Georgia (2021)
- Illinois (2021)
- Indiana (2019)
- Iowa (2020)
- Kansas (2018)
- Louisiana (2019)
- Maryland (2015)
- Massachusetts (2016)
- Minnesota (2021)
- Mississippi (2022)
- Missouri (2020)
- Montana (2021)
- Nevada (2021)
- New Jersey (2013)
- North Carolina (2021)
- Ohio (2018)
- Oklahoma (2021)
- Oregon (2017)
- Pennsylvania (2018)
- Rhode Island (2021)
- South Dakota (2022)
- Tennessee (2021)
- Texas (2021)
- Virginia (2020)
- Washington (2019)
- West Virginia (2022)
- Wisconsin (2021)
- Wyoming (2021)
Toolkit
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:
- H.R. 1235/ S. 3301 One Pager
- NDSS and Other Disability Organizations Send Letter of Support to Capitol Hill for H.R 1235.
- NDSS comment responding to CMS Request for Information regarding Organ Transplants
- NCD Letter to Reps. Herrera Beutler & Porter – Charlotte Woodward Organ Transplant Discrimination Prevention Act
- Organ Transplantation and People with Disabilities: A Toolkit for State Advocates from the Autistic Self Advocacy Network (ASAN)
- Organ Transplantation Advocate Guide from the Autistic Self Advocacy Network (ASAN)
- Organ Transplantation Policy Brief from the Autistic Self Advocacy Network (ASAN) (March 2013)
- Organ Transplant Discrimination in Florida One-Pager
- Sample Fact Sheet from Maryland
- Sample testimony from Massachusetts
- Sample coalition testimony from Maryland
- Charlotte Woodward of NDSS testimony in the Virginia State Senate
- NCD Report: Organ Transplant Discrimination Against People with Disabilities
- The Arc’s policy agenda includes organ transplant discrimination. It states: “ensure that legislation, regulations, and policies addressing issues such as physician-assisted suicide, stem cell research, end-of-life care, organ transplants, and research on human subjects includes protections against abuse and discrimination on the basis of disability.” You can learn more about their agenda here.
Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235/ S.3301) Supporters
