The Autistic Self Advocacy Network (ASAN) applauds Representatives Katie Porter (CA-45) and Jaime Herrera Beutler (WA-03) for their reintroduction of the Charlotte Woodward Organ Transplant Discrimination Prevention Act. This bill, which evolved from ASAN’s model legislation to prohibit organ transplant discrimination, would clarify the rights of people with disabilities to be free from discrimination when seeking life-saving organ transplants.
Historically, people with disabilities – including people with intellectual, developmental, and mental health disabilities – have been denied organ transplants due to bias by healthcare providers. Providers may believe that people with disabilities have lower quality of life, or that our lives are less worthy of saving than people without disabilities. They also may deny transplants to people who need assistance to follow post-transplant care instructions, or to people who need help making medical decisions. Although this discrimination violates the Americans with Disabilities Act, medical providers often are unaware of their nondiscrimination obligations in this context. This bill would make it clear that disability-based discrimination in organ transplant decisions is discrimination–period.
“We are thrilled to see federal legislation to ban discrimination in organ transplantation,” said Sam Crane, ASAN’s Legal Director. “We’re especially pleased that, like our model legislation, the Charlotte Woodward Organ Transplant Discrimination Prevention Act recognizes the importance of making modifications to discriminatory eligibility criteria and of recognizing supported decision-making. This is the culmination of years of grassroots advocacy. ”
ASAN’s model legislation to ban organ transplant discrimination was first published in its 2014 toolkit on organ transplantation discrimination. ASAN’s model legislation formed the basis for successful legislation in multiple states, including Maryland, Massachusetts, Oregon, Delaware, and Kansas. These bills in turn formed the basis of Porter’s and Herrera Beutler’s federal bill. ASAN also worked with NCD to create a comprehensive brief on disability discrimination in organ transplantation.
For more information, please contact Sam Crane, Legal Director, at scrane@autisticadvocacy.org.
###
The Autistic Self Advocacy Network(ASAN) is a disability rights organization run by and for autistic people. ASAN believes that the goal of autism advocacy should be a world in which autistic people enjoy equal access, rights, and opportunities. For more information about the organization, please visit: https://autisticadvocacy.org