Griffin Dalrymple is an energetic 7-year-old who loves going to school in Eureka, Montana. But two years ago, the boy described by his mother, Jayci, as a 鈥渂all of fire鈥� was suddenly knocked back by severe bacterial pneumonia that hospitalized him for two weeks.
As her son lay in the intensive care unit with a tube in his tiny lungs, Jayci began imagining worst-case scenarios. She worried that if Griffin ended up needing a lung transplant, he might be refused because he has Down syndrome.
鈥淚t was terrifying knowing that they could deny him certain lifesaving services,鈥� she said.
Denying organ transplants to people with intellectual and neurodevelopmental disabilities like Down syndrome or autism is common in the United States, even though it is illegal under the Americans with Disabilities Act.
According to , 44% of organ transplant centers said they would not add a child with some level of neurodevelopmental disability to the organ transplant list. Eighty-five percent might consider the disability as a factor in deciding whether to list the person.
After Griffin recovered, Jayci brought Montana lawmakers鈥� attention to the issue. Largely as a result of her campaigning, the state is considering a bill that would ban physicians from denying an organ transplant based solely on a patient鈥檚 disability. Last month, 鈥� 鈥� passed the Montana Senate 50-0.
Although Montana has no transplant centers of its own, advocates hope this bill and others like it will draw attention to the issue and pressure physicians to examine why they are making certain decisions. Andr茅s Gallegos, chairman of the National Council on Disability, said he hopes such legislation will inspire 鈥渁 change of heart so people understand that they are discriminating.鈥�
If the bill passes the state House and is signed by the governor, Montana would become the to ban such discrimination. Seven other states and the have similar bills pending, although some experts doubt such laws will be enforceable enough to eliminate discrimination.
With more than nationwide, and average wait times extending for some organs, physicians have to frequently make heart-rending decisions about which patients are likely to benefit most.
According to a , many physicians and organ transplant centers worry that patients with intellectual or neurodevelopmental disabilities are more likely to have co-occurring conditions that would make a transplant dangerous, or that these patients鈥� quality of life is unlikely to improve with a transplant. Others believe that these patients may not be able to comply with post-transplant requirements, such as taking immunosuppressive drugs.
But the report, which scoured research papers and medical reports, found that none of these concerns is universally true. Rather, disabled patients can benefit as much as any other patient, according to the NCD, an independent federal agency.
鈥淚f a determination is made to not include a person on the list only because that individual has a disability, that鈥檚 blatant discrimination,鈥� said Gallegos.
Many intellectually disabled patients and their families see this firsthand. When Joe Eitl was born in 1983 with a congenital heart defect, his mother, Peg, was told that Joe would never be a candidate for a new heart because of his Down syndrome. So, when his heart failed in 2019, eight hospitals refused to even consider a transplant for Joe, who lives with his mother in Philadelphia.
Peg Eitl conceded that Joe鈥檚 case was difficult, given he鈥檇 had prior reconstructive heart surgery that would complicate a transplant. She pleaded with transplant centers for more than a year and even considered suing them. Last October, Vanderbilt University agreed to perform the procedure. Joe came home Feb. 10 and is recovering.
鈥淚 think my greatest frustration was the value placed on someone with special needs,鈥� Peg Eitl said. 鈥淚t pains me that they鈥檙e discounted as being less than and not as worthy.鈥�
Bioethicist of Stanford University, who authored the 2008 study on the extent of transplant discrimination, said people like Peg Eitl shouldn鈥檛 have to prove that Joe would benefit from a transplant. Because people with disabilities are a protected class in the United States, he said, 鈥渢he burden is on people who want to discriminate.鈥�
But that doesn鈥檛 appear to be the case in practice. In September, Magnus a follow-up survey of more than 300 transplant programs. Of these, 71% said they would automatically disqualify an adult with an IQ under 35, which is considered severe intellectual disability, while 12% would disqualify a child at that level. Only about 20% of the institutions had formal guidelines regarding child patients.
Magnus suspects these numbers are low given that some physicians may be unwilling to admit to discrimination. He has not yet studied whether new state laws have affected physicians鈥� likelihood to discriminate against disabled patients.
But Magnus doubts that laws like Montana鈥檚 bill will be enforceable. Part of determining any patient鈥檚 eligibility for a transplant, he said, is whether they or a caretaker can comply with post-transplant requirements such as remembering to take immunosuppressant drugs. If a person with a disability can鈥檛 meet these criteria, that person might not be a good candidate.
鈥淎ll of these are terribly difficult judgments,鈥� Magnus said.
Transplant surgeons need to maximize the limited supply of organs and ensure they survive in the patients who receive them. If they don鈥檛, 鈥渋t鈥檚 taking an organ from someone who could have benefited from it,鈥� said Dr. Marwan Abouljoud, president of the American Society of Transplant Surgeons.
Abouljoud said institutions have differing standards for weighing the importance of an intellectual disability in a transplant decision. Ideally, he said, the committee that determines whether to list someone for a transplant will include social workers and behavioral psychologists, as well as program leadership, who can find ways to help the person comply.
On Feb. 12, the transplant surgeons鈥� society adopted a new supporting nondiscrimination and encouraging transplant centers to find ways to support these patients. 鈥淲e will be urging states to adopt local policies on this,鈥� Abouljoud said.
Sam Crane, legal director at the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said that some bills 鈥� including Montana鈥檚 鈥� address the concern about post-transplant care. They ban transplant centers from basing their decision solely on a person鈥檚 ability to carry out post-transplant requirements and require an investigation into sources of support to help the patient comply.
But Crane said physicians could still come up with a pretext to avoid adding a disabled person to the transplant list if they believe a person without a disability would benefit more from receiving an organ.
鈥淚t鈥檚 very difficult to prove discrimination in that sort of situation,鈥� she said.
Although a similar nondiscrimination bill has been introduced in the U.S. House of Representatives, Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the ADA and other federal laws already prohibit this kind of discrimination, making federal legislation unnecessary. Gallegos added that states can also enact stricter requirements than the federal government and fit them to their specific medical systems.
Under state laws, patients can appeal to local courts for an emergency injunction or restraining order. These hearings can be conducted quickly, allowing a judge to decide whether to compel an institution to add a person to the transplant list.
That speed is what Jayci Dalrymple hopes Griffin鈥檚 Law will achieve. 鈥淲hen you鈥檙e needing to stop discrimination, you鈥檙e racing the clock,鈥� she said.