IN THE NEWS- DISABILITY & TRANSPLANTS

This story is from Disability Scoop...

Members of Congress are pressing the Obama administration to issue guidance clarifying that life-saving organ transplants should not be denied because of a person's disability.

30 members of the U.S. House of Representative urged the U.S. Department of Health and Human Services' Office for Civil Rights to address what they called "persistent" organ transplant discrimination.

"Unfortunately, many transplant centers and surgeons continue to refuse to provide access to transplant registries and transplantation surgery to qualify people with disabilities,"reads the letter sent to the department from members of Congress.

"No one should be denied their right to life simply because of their intellectual and/or developmental disabilities," the lawmakers wrote.

In recent years, a handful of high-profile cases have highlighted the disparities faced by people with disabilities needing organ transplants.In 2012, a 3-year -old girl , who was diagnosed with Wolf-Hirschorn syndrome, was initially denied a kidney transplant, but doctors reversed course amid public outrage. In a separate case later that same year, a little boy with autism was turned down for a heart transplant.

The lawmakers noted in their letter that several states including California, Maryland and New Jersey have passed laws prohibiting discrimination in the organ transplant process.

The letter, which includes signatures from both Democrats and Republicans in Congress, calls for guidance clarifying that denying an organ transplant based on a person's disability would violate the Americans with Disabilities Act. What's more, the lawmakers said that an individual's support network should be considered when determining how a patient with disabilities would handle postoperative procedures.

"This is discrimination that has life or death consequences," said U.S. Rep. Mike Honda, D-Calif.,who worked with Rep. Jaime Beutler, R-Wash., to spearhead the effort to reach out to the Obama administration.

"Such discrimination directly violates the Americans with Disabilities Act and does not abide the American values of fairness and inclusion that we hold so dear as Americans, for all our communities," Honda said.

A coalition of 14 disabled advocacy groups called on similar guidance four years ago. A spokesman for the HHS Office for Civil Rights said that the agency is looking  into the issues raised by the members of Congress, and plans to respond to the members directly.