Down Syndrome Organ Transplant Discrimination

Despite existing civil rights protections, individuals with Down syndrome and
other disabilities continue to face both willful and unintended discrimination in
organ transplantation which threatens their ability to access health care when
they need it most.

A 2019 report from the National Council on Disability (NCD),
an independent federal agency that advises Congress and the executive
branch on disability policy issues, found that people with disabilities, especially
intellectual disabilities, have been denied access to organs because of
subjective judgements about the value of a life with a disability, assumptions
about their quality of life, and misconceptions about their ability to comply
with post-operative care. Furthermore, the report found that some organ
transplant programs have policies which exclude people with disabilities as
candidates for a transplant – some with categorical exclusions based on
disability, refusing to even evaluate a person’s medical suitability for an organ
transplant because of their disability.

There have been several instances in which members of the Down syndrome community were unable to get the lifesaving transplants they needed and
tragically passed away. This bill would ensure that individuals with disabilities
have access to an organ transplant system free from discrimination.
Furthermore, the bill provides those that feel they have been discriminated
against the recourse they need to seek life-saving relief in a timely manner.

States (or districts) that have not passed legislation: 

• Alaska 
• Connecticut 
• Washington, DC 
• Hawaii 
• Idaho 
• Maine 
• Nebraska 
• New Hampshire 
• New York 
• Utah 
• Vermont 

My daughters deserve a fighting chance regardless of their disability. Help me bring attention to this legislation and change our perspective on individuals with disabilities and their quality of life.

Thank you

Joseph Neri