Not Dead Yet, with partners the Disability Rights Education & Defense Fund and the Patients Rights Action Fund, have assembled a total of 30 disability rights and racial justice organizations to support further regulatory action by the U.S. Department of Health and Human Services Office for Civil Rights. Specifically, the groups are urging the formal […]
This is a complicated subject. It impacts people with disabilities in multiple ways, both as organ donors and recipients. But the tone and recommendations of the proposal by the Ethics Committee of the Organ Procurement and Transplantation Network needed a response. Some excerpts follow. The organ transplant program saves lives, including some of our organization’s […]
On October 20, John Kelly submitted testimony on behalf of Second Thoughts Massachusetts and Not Dead Yet in support of H 3271, “An Act concerning nondiscrimination in access to organ transplantation.” Not Dead Yet is proud to follow the leadership of the Autistic Self Advocacy Network (ASAN) on this issue. Lydia Brown of the Boston […]
Christian Sinclair, a palliative care and hospice physician who writes on the Pallimed blog, caught the NPR story on the Organ Procurement and Transplantation Network/United Network for Organ Sharing (OPTN/UNOS) meeting earlier this week to issue new sweeping rules on “Donation after Cardiac Death.” Good news, for now, BTW. We have been informed that the […]
NPR’s Morning Edition included a segment on the policy debate regarding organ procurement taking place June 24 and 25 at the Board meeting of the Organ Procurement and Transplantation Network/United Network for Organ Sharing (OPTN/UNOS) in Richmond, Virginia. Not Dead Yet issued a press release on this subject last week: Not Dead Yet Urges Secretary Sebelius […]
There’s a potentially explosive lawsuit that’s gotten limited coverage so far. As near as I can tell, the first story on it was published in the New York Post on September 26 of this year. Here’s an excerpt from the news story in the Post: The New York Organ Donor Network pressured hospital staffers to […]
On September 14, three representatives of the National Disability Leadership Alliance (NDLA) met with the Health and Human Services (HHS) Division on Transplantation. Two major concerns were brought to the meeting. Kelly Buckland, the Executive Director of the National Council on Independent Living (NCIL), was one of the participants and NCIL published a brief report […]
I’m happy to share an update on a story we covered earlier this year – about a young girl – Amelia – who has Wolf-Hirschhorn syndrome. Back in January, her mother wrote about an awful meeting at the Children’s Hospital of Philadelphia about Amelia’s failing kidneys. They were told by the transplant surgeon that her […]
Action Alert: Procuring organs from people with disabilities Take Action! Comments on proposed rules due Friday, June 15! The United Network on Organ Sharing (UNOS) has issued proposed requirements for organ procurement from people who depend on ventilators or other life sustaining treatment, including people with upper spinal cord injuries and people with neuromuscular disabilities. […]
Today ( Feb. 21, 2012) in the Maryland legislature, the House Health and Government Operations Committee held a hearing on HB 449, a bill to grant health care surrogates the power to donate “non-vital” organs (a kidney or lobe of a liver) of a person diagnosed to be in a persistent vegetative state (PVS). I […]
