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Advocates Call For End To Transplant Discrimination

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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.”

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Comments (4 Responses)

  1. Stephen Drake says:

    Not only does this article leave out fully half of the agenda of the meeting with HHS, it’s written so that your readers won’t have a clue there was more than the one topic discussed. Inexplicable and inexcusable.

  2. ZAN THORNTON says:

    OOPS? NOT DEAD YET was left out. Was this intential?
    I am a member Not Dead Yet [GA]. Was NDY the only group NOT named?
    As a news source for the “whole” community, I think an apology and update should be made now.
    Nothing About Us Without Us-does not mean without NOT DEAD YET!

    NCIL stated: ” Kelly Buckland, the Executive Director of the National Council on Independent Living (NCIL), was one of the participants and NCIL published a brief report on the meeting on September 19:…

    Also in attendance at the meeting were ASAN President Ari Ne’eman and Not Dead Yet President Diane Coleman. The NDLA representatives urged HHS to “issue strong and unequivocal legal guidance” on these issues. NCIL will continue to advocate strongly against policies that have recently resulted in clear cases of disability discrimination in life or death situations.”

  3. Rachel Douglas says:

    I want to know what other groups and people were there so I will know who was NOT there. Some of “our advocates” aren’t.

  4. Rosalind Alexander-Kasparik for David Rector says:

    My loved one is severely disabled due to a massive stroke. Two hospitals have refused to place him on the transplant list even though I’ve offered to donate one of my kidneys. The first “world renowned” surgeon called our transplant request a potential “waste of a good kidney.” The most recent transplant nephrologist literally told us, “We don’t do transplants for people who are quadriplegic anymore because they skew the stats demonstrating our success.” It’s shocking to see medical professionals so oblivious to their own prejudice. It’s maddening to watch them dismiss our lives so cavalierly. Heaven help us all.

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