Legislature passes bill to keep Kentuckians’ disabilities from being sole cause of discrimination in allocating organs for transplant

By Melissa Patrick
Kentucky Health News

A bill to ensure that Kentuckians with disabilities are not discriminated against when being considered for an organ transplant has passed both houses of the General Assembly and is on its way to the governor’s desk.

House Bill 238, sponsored by Rep. Wade Williams, R-Earlington, would prohibit a health-care provider from discriminating against an individual who has a disability, based solely on the disability, when determining their eligibility for an organ transplant.

Williams told the House Families and Children Committee March 2 that HB 238 doesn’t tell providers that they can’t consider the disability at all for an organ transplant, but that they can only consider it if it is “medically significant.”

The bill also directs health-care providers to consider a person’s personal-care support when making a decision about organ transplants. It also allows a person with a disability to file suit for relief via an injunction if they believe that a provider has violated the legislation.

On March 13, Morgan Elliston of Frankfort, told the Senate Families and Children Committee that her daughter Quinn, 11, has a rare genetic disorder, Wolfe-Hirschhorn Syndrome, that has caused  growth and intellectual disabilities, epilepsy and chronic kidney disease.

Elliston said Quinn’s kidneys are functioning at 30 percent and chances are slim that she will not need a kidney transplant in the future.

“All across the commonwealth, individuals like Quinn may someday need an organ transplant,” said Elliston. But as written, she said, current guidelines offer no protections for people with disabilities. She quoted from them:  “Allocation of a deceased donor organ must not be influenced positively or negatively by political influence, national origin, ethnicity, sex, religion or financial status — no mention of disabilities.”

Elliston said 37 states have passed similar legislation. “With the passing of House Bill 238, you will be giving individuals with disabilities the same rights as every other individual that needs a transplant,” she said.

The House bill passed the bill 98-0 March 7; the Senate passed it March 13 on the consent calendar, which is used for bills that are unanimously approved in committee.