Measure Stems from Stratford, NJ Family’s Troubles Securing Kidney Transplant for Disabled Three-Year-Old Daughter
(TRENTON) – Legislation Assembly Democrats Valerie Vainieri Huttle, John J. Burzichelli and Troy Singleton sponsored to prohibit discrimination against organ transplant candidates based solely on a physical or mental handicap was released Thursday by the Assembly Human Services Committee.
“Refusing to allow a viable candidate for an organ transplant to receive one, simply because they have a preexisting mental or physical disability that has no impact on their transplant suitability should not be allowed to occur,” said Vainieri Huttle (D-Bergen), the Human Services Committee Chair. “We wouldn’t allow discrimination based on race or religion, and we shouldn’t allow it based on non-medically relevant disabilities.”
The sponsors said their legislation stems from an incident involving the Rivera family, from Stratford, NJ. The Rivera’s three-year-old daughter, Amelia, who suffers from the developmental disability Wolf-Hirschorn syndrome, was reportedly refused candidacy for a kidney transplant by a doctor at the Children’s Hospital of Philadelphia due to her disability, despite it not having medical bearing on her eligibility as a transplant candidate.
“It sickens me to think that a doctor could look a mother and father in the eyes and tell them that their daughter wasn’t eligible for an organ transplant because of a medically irrelevant mental handicap,” said Burzichelli (D-Gloucester). “We need to make sure that this type of discrimination doesn’t happen again.”
“Discrimination of any kind is unconscionable, but discrimination in an organ transplant scenario literally gives the bigotry life or death stakes,” said Singleton (D-Burlington). “No New Jersey family should ever again have to experience the horrors and indignities the Rivera family faced.”
Individuals with mental or physical disabilities sometimes face discrimination in organ transplant scenarios because of assumptions regarding their quality of life or their ability to comply with complex post-transplant medical requirements, regardless of whether the individual has an effective support system in place to ensure compliance.
Under the bill (A-2390) any individual who is a candidate to receive an “anatomical gift,” or organ transplant, would not be deemed ineligible solely based on a physical or mental disability, provided the disability in question has been found by a physician or surgeon to have no medically significant impact on the successful receipt of an anatomical gift. If an individual has the necessary support system in place to assist with complying with post-gift medical requirements, the individuals’ inability to independently comply with said requirements would not be deemed medically significant. In all instances in the bill, the term “disability” has the same meaning as in the federal “Americans with Disabilities Act of 1990.”
The measure was released by a vote of 6 to 0. It now heads to the Assembly Speaker, who decides if and when to post it for a floor vote.