Griffin Dalrymple, 7 years old, loves going to school in Eureka, Montana and is described as a “ball of fire” by his mother Jayci. Two years ago, that “ball of fire” faded as Griffin was hospitalized for two weeks with severe bacterial pneumonia.
At that time, Jayci was worried if Griffin had needed a lung transplant, he could have been refused because he has Down syndrome.
“It was terrifying knowing that they could deny him certain lifesaving services,” she said.
Denying organ transplants to people with intellectual and neurodevelopmental delay disabilities (NDD) like Down syndrome or autism is common in the US, even though it is illegal under the Americans with Disabilities Act (ADA).
According to a widely cited 2008 study, 44% of organ transplant centers said they would not add a child with some level of NDD to the organ transplant list. Eighty-five percent said they might consider the disability as a factor in deciding whether or not to list the child.
Due to Jayci bringing the issue to the forefront, the Montana legislature has proposed a bill, nicknamed “Griffin’s Law,” that would ban physicians from denying organ transplants based solely on patients’ disabilities. Last month, the bill passed the state Senate 50-0.
Montana does not have any transplant centers of its own, however, advocates hope the bill will pressure physicians to see that they are, indeed, making discriminatory judgements. Andrés Gallegos, chairman of the National Council on Disability (NCD), said he hopes legislation will inspire “a change of heart so people understand that they are discriminating.”
If the bill passes the state House and is signed by the governor, Montana would become the 17th state to ban such discriminatory practices. Similar bills are pending in seven other states and in Congress.
More than 100,000 people are on the waiting list for organs nationwide. Average wait times for some organs extend three to five years, so physicians frequently have to make difficult decisions about which patients are likely to benefit most from a transplant.
According to a 2019 report from the NCD (National Council on Disability), many physicians and organ transplant centers feel that a patient with an intellectual or neurodevelopmental disability is more likely to have co-occurring conditions that would either make a transplant dangerous or that there would be no remarkable improvement in the patient’s quality of life as a result of the transplant. Others believe patients with these types of disabilities may not have the cognitive ability needed to follow post-transplant requirements, such as taking immunosuppressive drugs.