Patients and Doctors Urge Action As Time Runs Short For Public Comment

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Jill Chadwick

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            “If the proposal in question had been enacted in 2009, I would not be alive to write this comment,” Gene Dorsey, liver transplant patient posted online in response to a United Network for Organ Sharing (UNOS) proposal that would change how livers are shared nationally. “The proposal as written is all about economics and does not address the human side of things. I do not support this proposal and if adapted may have to reconsider my current desire to be an organ donor.” 

            Dorsey made his comments at bit.ly/StopShare35 and he urges others go there too and tell UNOS to focus on organ donation instead of taking organs from here to give to other programs.  Dorsey developed a strong relationship with his donor family that continues today. “People agree to donate livers or other organs to help their friends and neighbors not strangers thousands of miles away,” Dorsey wrote. “How can donors and recipients get to know each other if they can't meet at their local coffee shop and provide comfort to each other? Has anyone thought through the fact that this proposal could actually result in fewer donations?”

            Dorsey is right.  Doctors with The University of Kansas Hospital transplant program predict at least 100 fewer transplants will happen if reallocation under the current proposal happens.  More and more organs donated here will fly greater distances putting organs and patients at risk.

            “If we neglect that foundation and fail to focus on doing what’s best for our donors we erode the whole foundation of transplant.” Timothy Schmitt, MD, director of transplantation said.  “All patients on the list are sick and will die, they all deserve a transplant. The reality is there are not enough people donating to impact the problem.”

            Dorsey agrees.  He said the tactics in the proposal remind him of the many Indian Reservation treaties that were broken when a natural resource was located on Indian land and the boundary was moved so the resource was no longer on the reservation. “Why doesn't the committee address and focus on increasing liver donations in the coastal areas where the greatest number of people live and where there is potentially more donors?” Dorsey asked.  “Is that too hard?”

            Both Dorsey and Dr. Schmitt urge the community to share their comments now before the public comment ends Oct. 15.

            In the interviews that follow, Dr. Schmitt explains more about the impact of broader sharing on the hospital program and patients.  Dorsey and his donor family talk about the bond they share now through organ donation.