Governor Signs Heffernan Bill to Ban Organ Transplant Discrimination

DOVER – Gov. John Carney signed legislation Wednesday that makes Delaware the sixth state to ban organ transplant discrimination on the sole basis of a disability.

In the multi-colored atrium of Nemours/Alfred I. du Pont Hospital for Children, advocates and officials touted House Bill 21, which protects Delawareans with disabilities and addresses barriers to receiving organ transplants.

“Individuals with disabilities deserve the right to have access to quality healthcare and consultations. A disability should not be used as a tool for discrimination,” said Rep. Debra Heffernan, prime sponsor of HB 21. “With this bill in place, families will have peace of mind and know that their loved one with a disability has the right to be treated fairly when they are undergoing the extremely taxing process of pursuing a life-saving transplant.”

A variety of medical and psychosocial criteria can be used by transplant centers when evaluating organ transplant candidates. However without protections in place, people with intellectual and development disabilities and their families may face barriers to receiving a life-saving transplant and as a result may not be placed on a waiting list.

HB 21, championed by Rep. Heffernan, D-Brandywine Hundred, addresses that issue so people with disabilities would not be deprived of transplant services or referrals, nor would they be barred from an organ transplant waiting list. It does not require referrals, recommendations or performance of transplants that are deemed medically inappropriate.

“A true measure of the commitment of government to the people it serves is how well it addresses the needs of those who are living with disabilities,” said Governor Carney. “By signing this legislation into law, we are taking action to ensure individuals with disabilities have fair access to organ transplant procedures. Thank you to Rep. Heffernan and all members of the General Assembly for their leadership on this issue.”

According to the United Network for Organ Sharing, 447 residents of Delaware were waiting for organ transplants as of Sept. 10, 2017. Nationwide, recent data shows that more than 115,000 people are in need of a life-saving organ transplant, and every 10 minutes someone is added to the national waiting list.

“Discrimination is discrimination,” said Senate Majority Whip Nicole Poore, D-New Castle. “People with disabilities deserve fair treatment, and that’s especially true when it comes to health care. Unfortunately, that hasn’t always been the reality. Our society understands that equal access to housing, employment, and education are critical to people with disabilities’ wellbeing and quality of life. This legislation applies that common sense and decency where it matters most: medically appropriate, life-saving care.”

Medical professionals touted the benefits of the bill, which will help all children have better access to transplants and treatment.

"Nemours has always been a strong advocate for the rights of all children,” said Dr. Stephen Dunn, MD, Chair, Department of Surgery and Chief, Division of Solid Organ Transplant at Nemours/Alfred I. duPont Hospital for Children. “We fully support this legislation in Delaware, which further enhances our commitment to the health and well-being of all children and strengthens the opportunity for life-saving therapies to be available to all.”  

Added Melissa Stansell, a parent advocate and member of the Autism Delaware Board of Directors: “This legislation helps to even the playing field so all Delawareans will have access to organ transplants, not just those without disabilities. Post-transplant treatment plans are complicated, but medical officials should not work under the assumption that people with disabilities are incapable of following them. With the help of family and other support systems, people with disabilities can lead successful, healthy lives after organ transplants.”