The National Council on Disability reports on discrimination in organ transplantation:
Physicians may also fail to recommend standard therapies or treatments to people with disabilities that they would recommend immediately to patients without disabilities. For example, the NCD research team interviewed Jessica Sunshine Bodey, the mother of Lief O’Neill, an 11-year-old boy in critical need of a heart transplant. While the family was informed that Lief was being denied a transplant because he had autism—a decision they found discriminatory—Lief’s medical team also did not inform them that bridge therapies were available to extend his life while he waited for a transplant. The bridge therapy in question, a left ventricular assist device, or LVAD, is considered a standard “bridge therapy” on the way to receiving a transplanted heart.50 Lief ultimately needed four consecutive LVADs to survive.
In 2018, Kansas and Ohio both passed similar nondiscrimination laws. Recently, and after years of debate, Pennsylvania did likewise. John Sarbatina, a Pennsylvania state
senator, first introduced “Paul’s Law” in 2014, named after Paul Corby, a man with autism who was denied a heart transplant. The law, like those that passed in other states, seeks to prohibit discrimination on the basis of disability, and prevent individuals with “‘an adequate support system’” from being denied transplants due to an inability to comply with postoperative regimens. Note, however, that Pennsylvania’s bill lacks the detail of many of its predecessors. The bill provides only that discrimination solely on the basis of disability is prohibited, and that unless “following an individualized evaluation” a disability is deemed to be “medically significant,” individuals who have a “necessary support system” should not be rejected for an inability to comply with the postoperative regimen.
According to Ms. Bodey, Lief only survived because a young doctor argued strenuously in their favor to Lucile Packard Children’s Hospital at Stanford, which finally did accept Lief. During the meeting with doctors at Stanford, Stanford saw Lief typing to communicate and, “at the 11th hour,” accepted him. Lief was quickly flown to Stanford where he received an LVAD.
Ms. Bodey explained in her interview that upon her arrival at Stanford, she was told by the doctors that the transplant was unprecedented because they had never transplanted a heart into a child with autism as “severely affected” as Lief. Ms. Bodey noted that the very fact that Lief’s transplant was seen as so revolutionary by Stanford meant that few children like Lief had ever been provided with a heart transplant before.
Lief’s road to transplantation was still difficult even after he was accepted at Stanford.
According to Ms. Bodey, his LVAD failed three times. In other words, Lief had to have five separate open-heart surgeries: four to insert LVADs, and one to transplant the heart.
Nonetheless, Ms. Bodey reported Lief handled the surgeries extremely well, enduring a year in the hospital, when prior to his hospitalization, he had been unable sit in a restaurant for more than a few minutes. Lief himself attributed his endurance to the knowledge that his life was at stake.
Mr. Corby, as of yet, has not received a heart transplant. His mother reports that his
condition is stable, but that because of previous rejections following evaluation, he does not wish to undergo any further evaluations unless he is guaranteed placement on the transplant recipient list. As a result, he and his family are not seeking further evaluations by transplant centers at this time.