Sunshine Bodey had to struggle to get her autistic son a heart transplant.
At The Washington Post, she describes the barriers:
Transplant programs are given wide latitude in deciding whether to take a patient’s disability into account. According to a Post article published in March, the 815 transplant programs in the United States may take into account neurocognitive disabilities when making decisions about lifesaving organ transplants. Whether programs do so varies. A 2008 study by the Stanford Center for Biomedical Ethics found that 43 percent of the 50 pediatric heart, liver and kidney transplant programs surveyed always or usually considered neurodevelopmental delays, while 39 percent rarely or never did.
This discretion creates an opening for ingrained stereotypes and false assumptions to influence decisions. Some transplant teams might assume that people with disabilities are incapable of making it through the rigors of a grueling marathon of medical procedures involved in a transplant, or that they’re unable to care properly for themselves post-surgery.
While the Americans With Disabilities Act explicitly prevents discrimination in medicine, there is no mechanism for enforcement. This leaves states on the front line of not just ensuring the prevention of the discrimination but also giving families an effective and time-sensitive path of recourse outside of adjudication. Our state, Oregon, in June joined California, New Jersey, Maryland, and Massachusetts in the fight. More states should adopt these policies prohibiting discrimination.
