One danger of a culture that doesn’t value the lives of those in the womb who are diagnosed with disabilities is that sometimes that lack of value becomes apparent outside the womb. This became the case for a patient with an intellectual disability who needed a heart transplant and was denied a place on the transplant list at the University of North Carolina (UNC) Health Care system. According to a Department of Health and Human Services press release, “a doctor on staff at UNC Health Care determined that [a patient was] not a good candidate for heart transplant because of their developmental learning disabilities and because they do not live independently. The complainant asserted that without the transplant, they would eventually die.” The patient filed a complaint with the Office of Civil Rights at the U.S. Department of Health & Human Services (HHS). The complaint resulted in the hospital reversing the policy. HHS reports:
In September 2018, OCR received a complaint alleging that an individual with an intellectual disability was in need of a heart transplant… OCR used the Early Complaint Resolution (ECR) process to achieve a successful resolution of this matter. ECR is a facilitated negotiation between the parties to an OCR complaint with the goal of achieving a resolution that quickly provides a remedy to the individual that has been allegedly discriminated against as well as securing additional measures that can be implemented to reduce the likelihood of future incidents of alleged discrimination.
Last month, HHS, added, UNC agreed to change the patient’s medical records to make the patient eligible for placement on the transplant list, adding that the HHS civil rights office “will provide technical assistance to UNC Health Care in the development of their transplant eligibility policy.”
HHS Office of Civil Rights Director Roger Severino said, “Every life is precious and no one should be blocked from access to an organ transplant because of stereotypes about persons with disabilities. It is also against the law.”
Disability Scoop reports that the medical center denied any wrongdoing. The center said:
“While we cannot comment on individual patients, UNC Health Care has not denied any patient access to transplant because of that individual’s disability status, nor was there any finding by OCR that we did so…. Information to the contrary is a mischaracterization….”
However, a story on the situation in The Mighty points out that incidents like this are not uncommon, noting:
This incident of discrimination against people with intellectual and developmental disabilities is not uncommon when doctors consider organ transplants. According to an Autistic Self Advocacy Network (ASAN) report, 85 percent of pediatric transplant took intellectual disabilities into account when making decisions. The report also found that “46 percent of heart programs indicated that even mild or moderate cognitive impairment” was enough to disqualify patients from the organ transplant list.
While the hospital has placed this patient on the transplant list, it is important that people stay alert and advocate for all life, taking nothing for granted in a culture that equates value of life with level of ability or disability.
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