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After Being Denied, Person With Intellectual Disability Gets a Spot on the Transplant List

On Feb. 11, the U.S. Department of Health and Human Services Office for Civil Rights (OCR) announced the resolution of a complaint against the University of North Carolina (UNC) Health Care system after allegations that a doctor unlawfully denied an individual with an intellectual disability the opportunity to be placed on the organ transplant list on the basis of their disability.

The OCR first received the complaint in September 2018 alleging an individual with an intellectual disability was in need of a heart transplant, but a doctor at UNC determined they were not a good candidate because “of their developmental learning disabilities and because they do not live independently.” According to the complaint, without the transplant, the individual would eventually die.

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 Americans With Disability Act offers some protections against discrimination, according to a Washington Post report, organ transplant list decisions are made mostly at the discretion of individual doctors. This results in people with disabilities more frequently left off the list. Samantha Crane, director of public policy for ASAN, told the Washington Post often this is because of how doctors view disability.

“They’ve often been steeped in a very medicalized view of disability, in which they see people with disability having a lower quality of life,” she told the Post. “And that’s not true.”

The Washington Post also reported that while there isn’t a significant amount of research on how well people with disabilities do after a transplant compared to people without disabilities, based on the information we do have, there isn’t a significant difference in outcome following surgery — people with disabilities do just as well.

In January, after negotiations with the OCR, UNC Health Care agreed to amend the individual’s medical records to clarify they are eligible to be considered for placement on the United Network for Organ Sharing (UNOS) transplant list. As part of the agreed-upon resolution, federal officials say the university medical system will change its ways. The OCR will also provide technical assistance to UNC Health Care as they develop their transplant eligibility policy.

In a statement given to Disability Scoop, UNC Health Care has denied wrongdoing.

“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,” the statement said. “Information to the contrary is a mischaracterization. UNC Health Care continually reviews and updates policies to ensure all patients are able to access appropriate medical care.”

Roger Severino, director of the OCR, thanked UNC Health Care “for their quick action in responding to this complaint and resolving this discriminatory and potentially life-threatening issue” in a statement announcing the resolution.

“Every life is precious and no one should be blocked from access to an organ transplant because of stereotypes about persons with disabilities,” Severino added. “It is also against the law.”

The Mighty has reached out to UNC Health Care for a statement and has yet to hear back.

Getty image by whyframestudio