Measure Stems from Stratford, NJ Family’s Troubles Securing Kidney Transplant for Disabled Three-Year-Old Daughter
Legislation Assembly Democrats Valerie Vainieri Huttle, John J. Burzichelli, Troy Singleton and Craig Coughlin sponsored to prohibit discrimination against organ transplant candidates because of physical or mental handicaps was granted final legislative approval by the full Assembly on Monday.
“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 any 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.
“This sort of discrimination is simply mind-boggling,” said Coughlin (D-Middlesex). “One of the underlying tenets of the Hippocratic Oath taken by doctors is to refrain from any intentional injustice, but that’s exactly what was inflicted on little Amelia. From her unfortunate lesson, we need to make sure this doesn’t happen again.”
Under the bill (S-1456/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 approved by a vote of 77-0 and now heads to the Governor’s desk.