Individuals with intellectual disabilities are being rejected for organ transplants frequently enough that "their rights are a rapidly emerging ethical issue in this corner of medicine," Lenny Bernstein writes for the Washington Post's "To Your Health."
According to Bernstein, while more transplants were provided in the United States in 2016 than any previous year, available organs are still in short supply, and there are more than 118,000 U.S. residents waiting for a transplant. Many of the people waiting for an organ have to wait for several years, and 22 people die each day waiting for a transplant, Bernstein writes.
Transplant teams' wide discretion in assessing candidates
According to experts, "Deciding who is eligible for an organ can be a wrenching process for the transplant teams at each medical center," Bernstein writes.
In addition to medical issues, the 815 transplant teams in the United States review several other factors that could influence the transplant's success, including alcohol use, smoking habits, family support, ability to pay medical bills, and the patient's likelihood of being able to adhere to medications. However, aside from some regulations in the Americans With Disabilities Act (ADA), transplant teams have autonomy to decide how to account for neurocognitive disabilities, such as autism, when making a determination.
As a result, some transplant teams consider psychological and mental conditions heavily while others do not, Bernstein reports. For instance, a 2008 survey of 50 pediatric heart, kidney, and liver transplant programs found that 39 percent rarely or never considered neurodevelopmental delays when determining transplant eligibility, while 43 percent always or usually did. The researchers wrote, "It does appear that the programs use this psychosocial criterion to distinguish among candidates, although consensus does not exist within the field to guide its usage."
And while experts have cautioned that individual decisions are often more complex than they appear—given that transplant teams see personal information that isn't available to bystanders—"human bias is inevitable," Bernstein writes. For instance, in one ongoing study, researchers are assessing adult and pediatric transplant programs, and they've already found significant differences in eligibility decisions based on genetic disorders, such as Down syndrome, and intellectual disabilities—as well as on factors like HIV status and immigration status.
Despite the potential for bias, Bernstein notes that available data show people with intellectual disabilities generally do as well as non-disabled transplant patients after surgery.
Legislative and policy efforts
According to Bernstein, lawmakers at the state and federal level have recently started to pay more attention to this potential for bias in organ transplants for patients with intellectual disabilities.
Last October, 30 members of Congress in a letter to HHS' Office for Civil Rights asked for the office to issue instructions stating that discrimination in organ transplantation violates the ADA. The lawmakers also want the agency to specify that transplant teams should account for the support system an individual with disabilities has when assessing whether the individual will be able to follow a postoperative care regimen—a factor that many transplant teams currently take into consideration when evaluating a potential patient, Bernstein writes.
In a statement, an HHS spokesperson said the agency is working "to clarify the obligations of covered entities participating in the transplant process and to provide equal access to their programs to individuals with disabilities."
According to Bernstein, lawmakers in four states have approved legislation that includes similar regulations. And Pennsylvania Sen. John Sabatina (D) has introduced legislation aimed at banning discrimination in transplant decisions. That proposed law, Bernstein writes, is called "Paul's Law," named after a young man, Paul Corby, who was recently denied a heart transplant in part because of his autism diagnosis.
Samantha Crane, director of public policy for the Autistic Self Advocacy Network, said people with intellectual disabilities have to fight the bias that their lives are somehow less meaningful than the lives of non-disabled people—a bias that she said can tie into transplant decisions. "[People have] often been steeped in a very medicalized view of disability, in which they see people with disability having a lower quality of life," Crane said. "And that's not true."
Separately, Scott Halpern, an ethicist at the University of Pennsylvania medical center that denied Corby's transplant request, said, "As a society, we want individual transplant centers to maintain discretion about putting people on their list or not." However, he added, "Having said that, the current system lacks the accountability that we might wish it to have. There are virtually no checks and balances on the decisions that transplant centers make" (Bernstein, "To Your Health," Washington Post, 3/4).
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