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, which 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 a widely cited 2008 study, 44 percent of organ transplant centers said they wouldn't 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 child.
After Griffin recovered, Jayci brought the issue to Montana lawmakers' attention. Largely as a result of her campaigning, the Legislature is considering a bill that would ban physicians from denying organ transplants based solely on patients' disabilities. Last month, the bill — nicknamed "Griffin's Law" — passed the state Senate 50-0.
If a determination is made to not include a person on the list only because that individual has a disability, that's blatant discrimination.
Although Montana has no transplant centers of its own, advocates hope the 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, or NCD, 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. Similar bills are pending in seven other states and in Congress. Some experts doubt that such laws will be enforceable enough to eliminate discrimination.
More than 100,000 people are on the waiting list for organs nationwide, and average wait times for some organs extend three to five years, so physicians frequently have to 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 a patient with an intellectual or neurodevelopmental disability is more likely to have co-occurring conditions that would make a transplant dangerous or that the patient's quality of life would be unlikely to improve with a transplant. Others believe such 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 the 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," Gallegos said.
Many intellectually disabled patients and their families see that firsthand. When Joe Eitl was born with a congenital heart defect in 1983, his mother, Peg, was told that he 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 her son's case was difficult, given that he'd had reconstructive heart surgery that would complicate a transplant. She pleaded with transplant centers for more than a year and even considered suing them. In October, Vanderbilt University agreed to perform the procedure. Joe went 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 their children would benefit from transplants. Because people with disabilities are a protected class in the U.S., 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. Seventy-one percent said they would automatically disqualify an adult with an IQ under 35, which is considered severe intellectual disability; 12 percent would disqualify a child at that level. Only about 20 percent of the institutions had formal guidelines about child patients.
Magnus said he suspects that the numbers are low given that some physicians may be unwilling to admit to discrimination. He hasn't yet studied whether new state laws have affected physicians' likelihood to discriminate against disabled patients.
But Magnus said he doubts that laws like Montana's bill would be enforceable. Part of determining patients' eligibility for transplants, he said, is whether they or their caretakers can comply with post-transplant requirements, such as remembering to take immunosuppressant drugs. If someone with a disability can't meet those 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 that 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 different standards for weighing the importance of intellectual disabilities in transplant decisions. Ideally, he said, a committee that determines whether to list someone for a transplant will include social workers and behavioral psychologists, as well as program leaders, who can find ways to help the patient comply.
On Feb. 12, the transplant surgeons' society adopted a statement supporting nondiscrimination and encouraging transplant centers to find ways to support such patients. "We will be urging states to adopt local policies on this," Abouljoud said.
Sam Crane, legal director of the Autistic Self Advocacy Network, which has written model legislation adopted by several states, said some bills — including Montana's — address the concern about post-transplant care. They would ban transplant centers from basing their decisions solely on people's ability to carry out post-transplant requirements and require investigations into sources of support to help patients comply.
Crane said physicians could still come up with pretexts to avoid adding disabled people to the transplant list if they believe people without disabilities would benefit more from receiving organs.
"It's very difficult to prove discrimination in that sort of situation," she said.
A similar nondiscrimination bill has been introduced in the U.S. House, but Crane said advocates prefer to focus on state laws. Organizations like the autism group have taken the position that the Americans with Disabilities Act and other federal laws already prohibit that kind of discrimination, making federal legislation unnecessary. Gallegos said states could also enact stricter requirements than the federal government's and fit them to their specific medical systems.
Under state laws, patients can appeal to local courts for emergency injunctions or restraining orders. The hearings can be conducted quickly, allowing judges to decide whether to compel institutions to add people 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.