The Autistic Self Advocacy Network released a new report March 18 that calls for increased protections for people with disabilities when health care providers make life-saving organ transplant decisions.
Surveys have found that health care providers decline to refer people with intellectual disabilities for evaluations for organ transplants in nearly half of situations. Additionally, studies have found that many doctors automatically exclude people with disabilities from these evaluations based on “quality-of-life” considerations and are unaware that the Americans with Disabilities Act applies to these determinations.
“Many clinicians presume that, given the subjective nature of clinical judgment regarding organ transplantation decisions, disability civil rights laws may not be relevant or applicable. It is imperative that clear policy be provided that stipulates that this is not the case,” the report states.
The report comes on the heals of widespread public outrage in the cases of Amelia Riviera, a 3-year-old girl with Wolf-Hirschhorn originally denied a transplant due to her “mental retardation,” and Paul Corby, a 23-year-old man with Pervasive Development Disord who was denied a heart transplant.
In response to the Riviera case, the New Jersey Senate passed a bill outlawing disability discrimination in transplant determinations. The bill, modeled after a similar California law enacted in 1995, also passed an Assembly Committee in August 2012, but remains pending.
Earlier this month, officials from the U.S. Department of Health and Human Services’ Office for Civil Rights met with ASAN representatives to discuss the issue, along with advocates from the National Disability Rights Network, National Down Syndrome Society and Not Dead Yet, according to an article in Disability Scoop.
The report recommends that the federal government provide guidance to health care providers that federal law “clearly prohibits discrimination on the basis of a non-medically relevant disability” in organ transplant decisions. Additionally, the advocates calls on the DHHS to provide guidance clarify that the need for additional postoperative support services should place no role in transplant determinations.
The report further pushes for increased disability rights advocacy in the health care context and a concerted effort by the disability rights movement to “learn to effectively defends its interests in the bioethics realm.”
“No medical justification exists for these patterns of discrimination…little scientific data exists that might support the idea that intellectual or developmental disability would constitute a heightened risk of poorer outcomes in the aftermath of a transplantation procedure, provided necessary supports in postoperative regimen compliance were provided,” the report states.