An important and bipartisan bill has been filed in Congress to end organ-transplant discrimination against people developmental disabilities. Authored by Congresswoman Jaime Herrera Beutler (R., Wash.) and Katie Porter (D., Calif.), the Charlotte Wood Organ Transplant Discrimination Prevention Act (H.R. 1235) would:
A covered entity may not, solely on the basis of a qualified individual’s mental or physical disability—
(1)deem such individual ineligible to receive an anatomical gift or organ transplant;
(2)deny such individual medical or related organ transplantation services, including evaluation, surgery, counseling, and postoperative treatment and care;
(3)refuse to refer the individual to a transplant center or other related specialist for the purpose of evaluation or receipt of an organ transplant;
(4)refuse to place an individual on an organ transplant waiting list, or placement of the individual at a lower-priority position on the list than the position at which the individual would have been placed if not for the disability of the individual; or
(5)decline insurance coverage for such individual for any procedure associated with the receipt of an anatomical gift, including post-transplantation care if such procedure would be covered under such coverage for such individual if not for the disability of the individual.
This is an important issue of human exceptionalism. Each and every one of us is equal and should be treated equally. Developmental disability in and of itself should never be a bar to receiving proper medical care based on invidious notions of “quality of life,” or other such excuses for abuse or medical neglect.
But what if the patient would be unable to properly perform post-transplant care requirements? I mean Wesley, we don’t want organ transplants that fail, right?
The bill makes a provision for that potential. But it also provides that if the patient would have the needed assistance to provide that care, the disability cannot be the basis for disapproving organ-transplant eligibility.
A father of a child with Down syndrome explains why this legislation is necessary in Slate:
If my daughter’s heart had not healed when she was a baby, she could have been refused an organ transplant based on her intellectual disability. Currently, only 26 states have laws in place that explicitly prohibit this discrimination. Despite federal protections such as the Americans With Disabilities Act, there remains an alarming rift between what the law requires and what medical professionals practice.
In a study from 2008, 85 percent of organ transplant centers surveyed considered disability when deciding if a patient should be on an organ transplant list. Forty-four percent of centers said they would deny an organ transplant to a child with some level of neurodevelopmental disability.
In our profoundly divided era, it seems to me that this bill is legislation that people from all ideological perspectives can support. Yet, the bill is given only an 18 percent chance of passage. If that is true, it is a telling indictment on our country. But I believe that once people learn of the bill’s existence, chances of passage will increase exponentially.
I hope you will join me in urging your Member of Congress to support H.R. 1235.