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ASAN Releases Policy Brief on Organ Transplant Discrimination; Meets with Senior HHS Leaders

Posted Apr 04 2013 5:29pm

The Autistic Self Advocacy Network (ASAN) issed a policy brief last month on the subject of organ transplant discrimination. Over the past year a few cases of denial of organ transplants on the basis of disability made the news. Many more did not.

ASAN met with people in the Department of Health and Human Services (HHS) to present their brief and urge an end to discrimination in organ transplants based on disability.

The brief is:

Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps Ari Ne’eman, Autistic Self Advocacy Network
Steven Kapp, University of California, Los Angeles
Caroline Narby, Autistic Self Advocacy Network

Here is the ASAN statement:

This week, the Autistic Self Advocacy Network (ASAN) released a new policy brief on discrimination against people with intellectual and developmental disabilities in organ transplantation. In the twenty-three years since the passage of the Americans with Disabilities Act, people with disabilities have achieved much progress in securing our rights in a wide variety of settings. Unfortunately, the field of medical decision-making remains too often immune from civil rights law. In few places is this as evident as in the context of organ transplants, where our policy brief outlines widespread discriminatory practice. Many people with I/DD fail to even make it to the evaluation process, and those who do are frequently denied access to transplants on the basis of their disability. Eighteen years after the landmark Sandra Jensen case in California, it is long past time for action on this issue.

On Tuesday, ASAN, the National Disability Rights Network and Not Dead Yet met with senior leadership in the Department of Health and Human Services to urge the federal government to issue new guidance addressing discriminatory practices in organ transplantation. Our brief provides comprehensive documentation on this issue and offers next steps for regulators, legislators, funders and activists. Produced with the generous support of the Special Hope Foundation, this will be the first of several policy briefs produced by ASAN this year examining the issue of access to health care for people with intellectual and developmental disabilities.

We invite you to download a copy of Organ Transplantation and People with I/DD: A Review of Research, Policy and Next Steps on our website by clicking here. Help us spread the word about discrimination in organ transplants – together, we can achieve equal access for all of us.

Produced with support from the Special Hope Foundation


By Matt Carey


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