People with disabilities currently face discrimination on organ transplant lists. Despite federal protections, people with disabilities still do not receive equal consideration for organ transplants. NDSS is working to pass legislation at the federal and state level that will uphold the rights of qualified organ transplant candidates who have a disability.
The Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235)
Introduced by Congresswoman Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) the Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235) prohibits discrimination by health care providers and entities associated with organ transplant against individuals seeking an organ transplant based on their disability. This legislation would uphold and enforce rights established in the Americans with Disabilities Act of 1990.
If passed, the Charlotte Woodward Organ Transplant Discrimination Prevention Act will ensure that a person’s capacity to comply with post-transplant treatment requirements is not a significant reason to deny them a transplant procedure. Furthermore, this bill requires that health care providers make policies, practices and procedures accessible to qualified recipients with disabilities.
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 nearly nine years ago. Since then, she has advocated tirelessly to ensure others with Down syndrome and other disabilities have the same access to transplants.
Because of a lack of federal enforcement, there is a demonstrated need for state action to ensure the rights of people with disabilities including Down syndrome. Currently, these states have laws in place that prohibit this discrimination:
- California (1996)
- New Jersey (2013)
- Maryland (2015)
- Massachusetts (2016)
- Oregon (2017)
- Delaware (2017)
- Kansas (2018)
- Ohio (2018)
- Pennsylvania (2018)
- Washington (2019)
- Louisiana (2019)
- Indiana (2019)
- Virginia (2020)
- Iowa (2020)
- Missouri (2020)
- Florida (2020)
- Arkansas (2021)
- Oklahoma (2021)
- Wyoming (2021)
- Nevada (2021)
- Minnesota (2021)
- Tennessee (2021)
- Texas (2021)
- Montana (2021)
- Colorado (2021)
- Georgia (2021)
Currently, there is legislation pending in the following states:
- North Carolina
- New York
- Rhode Island
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:
- The Charlotte Woodward Organ Transplant Discrimination Prevention Act (H.R. 1235) One-Pager
- NDSS and Other Disability Organizations Send Letter of Support to Capitol Hill for H.R 1235.
- 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)
- Sample Fact Sheet from Massachusetts
- Sample Fact Sheet from Maryland
- Sample testimony from Massachusetts
- Sample coalition testimony from Maryland
- Charlotte Woodward of NDSS testimony in the Virginia State Senate
- 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.