Heffernan Bill Bans Organ Transplant Discrimination

DOVER – Delawareans with mental or physical disabilities would not be denied organ transplants on the sole basis of a disability under proposed legislation from Rep. Debra Heffernan.

Transplant centers currently consider a variety of medical and psychosocial criteria when evaluating organ transplant candidates.

But people with disabilities and their families have reported discrimination early in the process, which has prevented them from being placed on the official transplant waiting list. A 2008 Stanford University survey found that 85 percent of the 88 transplant centers surveyed considered neurodevelopmental status as a factor in determining transplant eligibility at least some of the time.

Take Amelia Rivera, a toddler from New Jersey with a rare genetic disorder and intellectual disability. Amelia’s family was told by a children’s hospital that the child was not eligible for a kidney transplant as a result of her disability, according to a policy brief from the Autistic Self Advocacy Network.

House Bill 21 would prevent such discrimination and protect Delawareans with disabilities so they would not be deprived of transplant services or referrals, nor would they be barred from an organ transplant waiting list. However, the bill would not require referrals, recommendations or performance of transplants that are deemed medically inappropriate.

“All Delawareans have a right to health care. People should not be denied life-saving organ transplants on the basis of a disability,” said Rep. Heffernan, D-Brandywine Hundred. “There is the misconception that people with disabilities are unable to manage post-operative treatment plans and therefore are less likely to benefit from a transplant. That’s just not true. People with disabilities can live healthy, long lives after organ transplants with help from family and other support systems.”

Senate Majority Whip Nicole Poore, D- New Castle, will sponsor the bill in the Senate.

Similar legislation has passed in New Jersey and California. Pennsylvania and Massachusetts are working through measures, as well.

According to the United Network for Organ Sharing, 471 Delawareans were waiting for organ transplants as of Dec. 30, 2016. Nationwide, 119,168 people are in need of a life-saving organ transplant and, on average, 22 people die daily while waiting.

HB 21 has been assigned to the House Health and Human Development Committee. The General Assembly returns to session on January 10.