A bipartisan group of 30 legislators from the US Congress petitioned the Department of Health and Human Services in October to "issue guidance on organ transplant discrimination with regards to persons with disabilities", according to a new opinion piece in the New England Journal of Medicine.
The legislators' request follows several highly publicised cases in which people with intellectual disabilities have either fought to receive a transplant or have been outright denied a place on a waiting list, said co-author Dr Scott Halpern. He's an associate professor of medical ethics and health policy at the University of Pennsylvania's Perelman School of Medicine.
The waiting list
Around 120,000 people are waiting for a donated organ that's needed to save their lives, and every 10 minutes another person is added to the list, the US Department of Health and Human Services says.
Every day, 22 people on the waiting list die without receiving a new organ, according to federal statistics.
Because of the constant shortage, the nation's system of organ banks – the Organ Procurement and Transplantation Network, managed by the United Network for Organ Sharing (UNOS) – has to be stringent about who is given a place on the waiting list, Halpern said.
"It's very well established that transplant centres can and should deprioritise patients whose own conditions or social supports make them less likely to promote the viability of the organ by adhering to complicated medical regimens following transplantation," he said.
"That would constitute a waste of an organ that would not allow it to benefit the person to whom it was allocated and would deprive someone else who could have benefited," Halpern explained.
In recent years, transplant centres have struggled with whether an intellectual difficulty should prevent a person from receiving a donated organ, the authors noted.
The story of Amelia Rivera
A 3-year-old New Jersey girl named Amelia Rivera made headlines in 2012 when she was denied a kidney transplant because she has Wolf-Hirschhorn syndrome, a genetic disorder that caused severe intellectual impairment, the authors said. Following an online campaign that drew more than 50,000 people to her cause, she received the transplant.
That same year, a 23-year-old Pennsylvania man with autism named Paul Corby was permanently denied a heart transplant. His hospital group, Penn Medicine, denied the operation "given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on his behaviour", according to a letter from the hospital.
The debate revolves around two main questions, Halpern said.
First, the decision to transplant an organ into a patient with intellectual disabilities will often mean that another patient with no such impairment will die for lack of a transplant. Halpern doesn't think much of that argument, however.
"Clinicians ought not to be making decisions about the quality of lives of patients," he said. "Those are value judgments that patients and family members have the authority to make."
Noted medical ethicist Arthur Caplan agreed. "I think we need to be generous in terms of where we draw the line," said Caplan, founding head of the NYU Langone Medical centre's Division of Bioethics in New York City.
A trickier question involves whether intellectually disabled people can care for themselves properly following the transplant, so their donated organ isn't wasted.
Transplant recipients must participate in postoperative recovery programmes and take complicated regimens of immune-suppressing drugs to keep their bodies from rejecting the new organ, Halpern said.
"There are reasonable concerns that patients with cognitive impairment may be among those for whom adherence to medical regimens would be suboptimal, but there is a real paucity of data to support those concerns," Halpern said.
National studies have shown that children with intellectual disabilities fare just as well as other kids following a transplant, but those children have parents or caregivers on hand to make sure they stick to their treatment, the authors said.
There have been no solid studies of transplant outcomes among adults with mild intellectual disability, for whom concerns about adherence to treatment would be better founded, the article stated.
The next step
Halpern said UNOS needs to beef up the available evidence by requiring that more data be reported on transplant patients with intellectual disabilities.
He also called for the establishment of regional review boards to examine the evidence on "edge cases" and provide guidance to transplant centres.
"That's not to say the review board should have the authority to tell a transplant centre what to do," Halpern said. "The virtue of an independent regional review board would be to provide some objective guidance for transplant centres to consider in a listing decision."
Caplan disagreed with the idea of a review board, arguing instead for the creation of clear lines that would define who is and isn't eligible for a transplant.
"I'm not very excited about handing this off for a new kind of committee," Caplan said. "I think this is going to have to be a policy issue for UNOS and they're not going to be able to punt it over to another committee."
UNOS declined to comment on the article.
Existing federal anti-discrimination laws likely will "push toward inclusion in a way this piece doesn't cover," Caplan predicted. "I think the law and Congress are both pointing in that direction.
"Hopefully the editorial will prod movement," Caplan concluded. "It's just been kicked around with a lot of saber-rattling in terms of lawsuits and finger-pointing. Patients and their families deserve clear guidance."