People with physical and intellectual disabilities face discrimination on organ transplant lists. Despite federal protection, people with disabilities still do not receive equal consideration for organ transplants. NDSS is working to pass legislation at the federal and state level to ensure people with Down syndrome and other disabilities and uphold the rights of qualified organ transplant candidates who have a disability.
The Charlotte Woodward Organ Transplant Discrimination Prevention Act
Introduced by Congresswoman Jaime Herrera Beutler (R-WA) and Katie Porter (D-CA) the Charlotte Woodward Organ Transplant Discrimination Prevention Act 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 (AB 2861) (1996)
- New Jersey (SB1456) (2013)
- Maryland (SB 792) (2015)
- Massachusetts (Chapter 328) (2016)
- Oregon (HB 2839) (2017)
- Delaware (HB 21) (2017)
- Kansas (HB 2343) (2018)
- Ohio (HB 332) (2018)
- Pennsylvania (Act 90) (2018)
- Washington (HB 5405) (2019)
- Louisiana (HB 143) (2019)
- Indiana (SB 112) (2019)
- Virginia (HB 1273) (2020)
- Iowa (HF 2561) (2020)
- Missouri (SB 551)(2020)
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 Fact Sheet
- 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