In the wake of two high-profile cases of people with disabilities allegedly denied organ transplants due to their special needs, advocates are urging federal officials to step in.
A national coalition of 14 advocacy groups all led by people with disabilities is asking the U.S. Department of Health and Human Services to issue legal guidance to the nation’s organ transplant facilities regarding their responsibilities under disability rights law.
The group is also urging families to file civil rights complaints with HHS if they feel that they’ve been wronged by transplant decisions.
The efforts were spurred by two recent cases where discrimination allegedly colored transplant decisions involving patients with developmental disabilities. Earlier this year, then-3-year-old Amelia Rivera made national news when her parents said she was denied a kidney transplant because of her intellectual disability. The hospital later reversed its decision.
In August, the family of Paul Corby, 23, came forward to say that Corby’s autism diagnosis was cited when he was turned down for a heart transplant.
“This is clearly a very grave civil rights issue,” said Ari Ne’eman, president of the Autistic Self Advocacy Network, who along with other members of the coalition known as the National Disability Leadership Alliance met with top officials from HHS’s Division on Transplantation late last month to ask that the agency take action.
The coalition also includes ADAPT, the American Association of People with Disabilities and the National Council on Independent Living, among other organizations.
“We’re talking about discrimination that is grounded in no medical justification. This is based on subjective decision making about quality of life,” Ne’eman said.
Under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act, health care providers are barred from discriminating against patients based on disability, members of the alliance say. However, the group of advocates is concerned that many providers may not be aware of the law.
HHS officials were receptive to the idea of issuing guidance and a secondary meeting on the issue is expected in the coming weeks, Ne’eman said.
The health agency’s press secretary, Fabien Levy, would not comment on specific plans but said, “we are committed to ensuring that health care providers who receive federal funds do not discriminate in the services they provide.”