A Roanoke Rapids couple has led the charge to have legislation enacted that would uphold the rights of qualified organ transplant candidates who have a disability.
The bill — HB 642 — was introduced by state representatives Michael Wray, Pat McElraft, John Bradford and Donny Lambeth, and is called the Down Syndrome Organ Transplant Nondiscrimination Act.
(A PDF of the bill can be found at this link)
The bill, which was introduced Wednesday, seeks to prohibit discrimination against individuals based on their disability when seeking an organ transplant.
This legislation would uphold and enforce rights established in the Americans with Disabilities Act of 1990.
Christina Reaves, a Roanoke Rapids native who is director of the North Carolina Down Syndrome Alliance, said the organization applauds the introduction of the bill.
The effort to have the bill eventually be turned into law was led by Roanoke Rapids residents Justin and Robin Matthews, the parents of Bethany Matthews.
Bethany, 3, has Down syndrome. “The family made it their mission to end organ transplant discrimination with the help of the NCDSA and their State Representative Michael Wray.”
Reaves said if passed, the Down Syndrome Organ Transplant Nondiscrimination 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 healthcare providers make policies, practices, and procedures accessible to qualified recipients with disabilities. We recently witnessed the call-to-action for the North Carolina Department of Health and Human Services to follow the CDC’s recommendation to prioritize vaccine distribution to people with Down syndrome. Organ transplant discrimination is just one more example of how people with Down syndrome and other intellectual disabilities continue to be marginalized.”
Federal legislation — the Charlotte Woodward Organ Transplant Discrimination Prevention Act — HR 1235 — was introduced in the 117th Congress on February 23.
The bill is named for Charlotte Woodward, an advocate with Down syndrome and member of the National Down Syndrome Society 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.
Sixteen states have passed state-level legislation similar to the Down Syndrome Organ Transplant Nondiscrimination Act enforcing non-discrimination policies for organ transplants: California, Delaware, Florida, Indiana, Iowa, Kansas, Louisiana, Maryland, Massachusetts, Missouri, New Jersey, Ohio, Oregon, Pennsylvania, Virginia and Washington.