Federal government urged to address disability bias in organ transplants
Thursday, October 24, 2019
In a new report to the president, the National Council on Disability acknowledged that people with disabilities are often barred from receiving organ transplants even though federal law and some states specifically prohibit it.
“We live in a world where organ denials are based on disability, rather than suitability,” said Neil Romano, chairman of the National Council on Disability. “Receiving an organ to save your life should never be jeopardized because of fears, myths and stereotypes about disability. Especially not with so many federal laws making that practice illegal.”
The Council's report found that when people with a disability need a transplant, their disability generally has "little or no impact on the likelihood of the transplant being successful.” Further, with adequate support, disabilities should have limited impact on a person's ability to maintain a post-transplant care plan.
The report also says policies of the Organ Procurement and Transplantation Network and the United Network for Organ Sharing, the two organizations responsible for securing organ donations, allow people with disabilities to be pressured into donating their organs.
There's no federal standard for who is accepted as an organ donation candidate. Individual transplant centers make their own guidelines for whether to accept patients for transplant or placement on a national waiting list.
Each center evaluates potential transplant patient to determine if, according to its own policies and practices, he or she should be accepted for an organ transplant. Some centers' policies spell out contraindications that make it less likely that a patient will be accepted by the transplant center.
Some maintain "absolute contraindications" that dictate conditions under which a patient would never be accepted for transplant, along with "relative contraindications" indicating which characteristics would make a patient less likely to be accepted.
Though neither organ procurement network specifically says disability is a contraindication to organ donation, some transplant centers consider disabilities to be a relative or absolute contraindication to organ transplant.
Report authors write that the U.S. Department of Health and Human Services’ Office for Civil Rights and the Department of Justice should issue guidance that the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973 apply to each stage of the organ transplant or donation process.
“We call on HHS OCR to demonstrate leadership by issuing critical guidance in this area,” Romano said. “It simply cannot wait.”
Specifically, HHS and the Justice Department should make it clear that it is illegal to make assumptions about a disabled organ recipient's quality of life post-transplant. Additionally, given the time-sensitive nature of organ transplantation, report authors say the government should quickly review any claims of organ transplant discrimination brought on the basis of disability.
The Justice Department says it is “working with HHS OCR to determine what, if any, next steps are appropriate with respect to issuing such guidance.” The HHS Office for Civil Rights said the report was “exceptional work” and said it was taking the National Disability Council’s recommendations “under advisement.”
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