Overview
NDSS supports the reintroduction of the Charlotte Woodward Organ Transplant Discrimination Prevention Act in the 118th Congress. The bill is named after Charlotte Woodward, an advocate with Down syndrome and member of the NDSS staff who received a life-saving heart transplant 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. NDSS supports this legislation because it would prevent discrimination based solely on disability in the organ transplantation process and provides additional legal recourse to people with Down syndrome and other disabilities should they experience discrimination.
Until a federal law is passed, NDSS will continue to work to protect people with disabilities from discrimination in organ transplantation at the state level. Currently, 36 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.