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Legislature Paves Way for Organ Transplants for People with Disabilities

OHSU and Providence Health & Services stepped to the plate to make sure people with disabilities are not discriminated against when it comes to receiving a life-saving organ transplant.
June 5, 2017

The Senate on Monday unanimously passed House Bill 2839, which will protect Oregonians living with disabilities by preventing medical providers from discriminating against them for organ transplants.

The bill was then re-passed unanimously by the House on Wednesday to accept a consensus amendment from the Senate Health Committee, sending it swiftly to the desk of Gov. Kate Brown. Her signature would make Oregon just the fifth state to explicitly affirm the worthiness of people with disabilities for organ transplants, although three other states are considering similar legislation.

The American Disabilities Act already outlaws discrimination, but in 1996, two major hospitals in California tried to deny a heart transplant to a woman with Down syndrome, causing an uproar and leading to a state law protecting people.

Oregon has no such law, and providers may be unaware that disabled people are as eligible for an organ transplant as an able-bodied person.

That was the case for 14-year-old Lief O’Neill, a nonverbal, developmentally disabled teenager who was admitted to Oregon Health & Science University in 2012. The doctors told Lief that he needed a heart transplant to survive, but because of the severity of his disability, no facility would perform a transplant, and his parents prepared for him to die.

But even as the family and others had given up hope, one physician at OHSU doggedly pursued a transplant for him and persisted with the physicians at the Lucile Packard Children’s Hospital at Stanford University in California, until they accepted him as the first nonverbal, autistic patient to receive a heart transplant.

Five years later, he communicated with the aide of technology with the House Health Committee in February.

House Bill 2839 is a rare beast -- advocates brought forward the measure, and, rather than resist the measure, the providers most affected, including Providence Health & Services and Oregon Health & Science University, improved and supported the bill make the underlying policy work.

HB 2839 will clarify official state policy for hospitals and transplant centers around handling the cases of people with disabilities, and it will allow for an expedited judicial process to make a determination on whether a transplant should proceed. For OHSU, it allows a review process without the need for a tort claim.

“We think that discrimination was already illegal,” said Paul Terdal, an advocate for people with autism. “But if you sued under the ADA, you would be dead by your next birthday.”

The bill would still allow a person to be denied a transplant if their disability made the transplant unlikely to work. For example, a person with addiction to drugs or alcohol may be denied a liver transplant if they are not sober. If, however, they had a sustained recovery, they would be protected.

Reach Chris Gray at [email protected].