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 "ball of fire" 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.
"It was terrifying knowing that they could deny him certain lifesaving services," 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 one widely cited 2008 study, 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' 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's disability. Last month, the bill — nicknamed "Griffin's Law" — 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. Andrés Gallegos, chairman of the National Council on Disability, said he hopes such 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 discrimination. Seven other states and the federal government have similar bills pending, although some experts doubt such laws will be enforceable enough to eliminate discrimination.
With more than 100,000 people on the waiting list for organs nationwide, and average wait times extending three to five years for some organs, physicians have to frequently make heart-rending decisions about which patients are likely to benefit most.
According to a 2019 report from the NCD, 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' 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.
"If a determination is made to not include a person on the list only because that individual has a disability, that's blatant discrimination," 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's case was difficult, given he'd 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.
"I think my greatest frustration was the value placed on someone with special needs," Peg Eitl said. "It pains me that they're discounted as being less than and not as worthy."
Bioethicist David Magnus of Stanford University, who authored the 2008 study on the extent of transplant discrimination, said people like Peg Eitl shouldn't have to prove that Joe would benefit from a transplant. Because people with disabilities are a protected class in the United States, he said, "the burden is on people who want to discriminate."
But that doesn't appear to be the case in practice. In September, Magnus published 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' likelihood to discriminate against disabled patients.
But Magnus doubts that laws like Montana's bill will be enforceable. Part of determining any patient's 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't meet these criteria, that person might not be a good candidate.
"All of these are terribly difficult judgments," 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't, "it's taking an organ from someone who could have benefited from it," 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' society adopted a new statement supporting nondiscrimination and encouraging transplant centers to find ways to support these patients. "We will be urging states to adopt local policies on this," 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 — including Montana's — address the concern about post-transplant care. They ban transplant centers from basing their decision solely on a person's 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.
"It's very difficult to prove discrimination in that sort of situation," 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's Law will achieve. "When you're needing to stop discrimination, you're racing the clock," she said.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.