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 […]
The LA Times is reporting that the death of a disabled 8-year-old boy in 2013 is currently under investigation by Los Angeles police and the DA office. Back in 2013, Cole Hartman’s father found his son with his head submerged in their washing machine. Cole went into cardiac arrest, but paramedics were able to resuscitate him. […]
Summary: Not Dead Yet, a national disability rights organization, is calling upon Health and Human Services Secretary Kathleen Sebelius and the Organ Procurement and Transplantation Network to adopt national standards prohibiting organ procurement staff from initiating organ donation discussions with individuals or family members before they have made a decision to withdraw life-sustaining treatment. The […]
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 […]
It’s become fairly clear over the past few years that two trends in medicine are in conflict, albeit mostly under the radar. On one hand, several promising research and clinical developments have given reason to be cautiously optimistic about the recovery potential of at least some people with significant brain damage, and has led to […]
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 […]
Recently, Diane Coleman wrote about new proposals to increase the pool of donor organs, and that have particularly disturbing ramifications in terms of the care and treatment of newly disabled individuals. We already know that organ transplant teams are more than willing to obtain organs from individuals with long-term disabilities, as highlighted by the case […]
