Surgeons Sometimes Deny Organ Transplants for Disabled Patients. State Lawmakers Are Changing That.
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Twenty-nine states prevent doctors from considering a person's disability when determining eligibility for an organ transplant. Wisconsin could join them.
A proposed bill in Wisconsin would prohibit surgeons from denying an organ transplant based on a patient’s ability to comply with postoperative care instructions, a tweak to existing law that proponents say is necessary to prevent discrimination against people with disabilities.
“Current law broadly prohibits individuals with disabilities from being denied an organ transplant. Similar to other areas of the law, vague language allows for these instances to still occur,” state Rep. Mark Born, a Republican and the legislation’s lead sponsor, said at a committee hearing. “For example, medical professionals can deny an organ transplant for an individual with a disability if they believe the individual can’t comply with postoperative care.”
The bill seeks to clarify the state’s anti-discrimination law by explicitly preventing doctors from including a patient’s disability in deliberations regarding eligibility for an organ transplant, unless “the disability is medically significant to the receipt of” the organ.
Part of that deliberation typically includes an assessment of whether a patient can reliably take anti-rejection medication that helps the body accept the new organ, which the legislation says may still be considered but only if the physician also takes into account whether “the individual has the necessary support system in place” to assist.
Born said the idea for the legislation came from a constituent whose son was deemed ineligible for a heart transplant because he had Down syndrome. Historically, disability has factored into decisions regarding organ transplants, though it varies wildly across states and medical facilities. In a 2009 survey, for example, 43% of pediatric transplant centers nationwide said they “always” or “usually” considered neurodevelopmental delays when deciding whether to place patients on the transplant list, but nearly two-thirds said their process for doing so was informal.
The industry’s stance has evolved since then, most recently in February, when the American Society of Transplant Surgeons released a position paper stating that “any medically eligible patient, with sufficient support in place to allow for their adequate care following surgery, should be supported in their pursuit of transplantation.”
“If the patient has cognitive, physical, or financial limitations that would preclude them from being able to adequately care for themselves, then appropriate social supports or other compensatory mechanisms which would remediate the situation should be identified,” the association said. “If these can be found, then the patient’s candidacy for transplantation should be supported.”
If not, the association continued, the patient should not be considered automatically ineligible. Instead, the treating physician should postpone the evaluation “until the limiting issue can be corrected.”
At least 29 states have corrected existing laws to limit the practice, with three others (Michigan, New York and Wisconsin) considering legislation to do so, according to the National Down Syndrome Society.
All of which is excellent news, said Abby Nuoffer, a 17-year-old Wisconsinite with Down syndrome who testified in favor of the state’s proposal at a committee hearing in October.
“Your support of this bill is very important,” she wrote. “If I get sick and need a lifesaving organ transplant, I need to have equal access to the care I deserve. I am very popular and well-loved! People need me!!”
Kate Elizabeth Queram is a senior reporter for Route Fifty and is based in Washington, D.C.
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