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Friday, September 21, 2012

Transplant Update

Last week, representatives of the National Disability Leadership Alliance (NDLA) met with senior staff at the HHS Division on Transplantation to discuss organ procurement and transplantation policies and how they impact people with disabilities of all kinds. NDLA, a national coalition of organizations run by and for people with disabilities, was represented by ASAN President Ari Ne’eman, National Council on Independent Living (NCIL) Kelly Buckland and Not Dead Yet President Diane Coleman. Among the issues discussed were ensuring meaningful consent in organ procurement efforts and addressing discrimination against people with disabilities in accessing organ transplants. ASAN staff raised the recent cases of Amelia Rivera and Paul Corby, youth with developmental disabilities denied access to transplant waiting lists, and urged HHS to issue strong and unequivocal legal guidance to prevent such acts of discrimination.