NYT investigation on transplant waitlists

[Oceansideup]

Just thought I would share what I saw this a.m. in the paper about organ transplant disparities.

nytimes.com/interactive/202...

[Bassetmommer]

Can't read this without getting a subscription.... no thanks

[Oceansideup in reply to Bassetmommer]

My apologies, did not realize posting a link required signing up

[LavenderRabbit]

can you please post a synopsis?

[WYOAnne NKF Ambassador in reply to LavenderRabbit]

Here is what my local Donor Alliance posted regarding the NYT article.

First, we want to make sure that you are aware of a story published by the New York Times last night. The article details organ allocation protocols, rescue pathways used to prevent recovered organs from going unused, and how individual players are implementing independent solutions to broad systemic issues. All members of the system – OPOs, transplant centers, the OPTN and federal regulatory agencies, namely HRSA – are held responsible. See attached.

While the story does not name Donor Alliance, it is concerning and difficult to read. It paints a picture of a system that is severely misaligned to the point of chaos. As The New York Times reports, tragically, organ nonuse continues to increase; as a result, the use of rescue pathways also is on the rise. This is a problem OPOs have been urging federal regulators to fix for years, with no response.

We are disappointed the story does not focus on the many attempts OPOs and transplant centers have made over the years to warn regulators about misaligned federal policies driving the rising rates of both organ non-use and rescue pathway use. It also did not detail the ways OPOs and transplant centers attempted to resolve the problem on their own in the face of federal inaction. We are also highly concerned this article will further impact the public's trust in organ and tissue donation.

However, we are equally hopeful that this in-depth examination of the system and its stakeholders will finally drive regulators to issue long-needed clarity and reform. Now, thanks to the inquiry from The New York Times, HRSA is acting, issuing a directive last week to explore solutions to organ non-use and rescue pathways. This is a major step in the right direction, and we hope HRSA allows the work of the Expeditious Task Force, which has been actively working to resolve these issues, to resume immediately.

On a brighter note, also airing today was an inspiring story on the Today Show that showcases the remarkable innovation and life-saving potential of organ donation. NBC's Kate Snow reported on a groundbreaking "domino transplant" procedure performed by doctors at Duke University that saved the lives of three young girls. This innovative approach allows one donor heart to benefit multiple recipients, as "one person gets a new heart, and then the heart that comes out has good valves in it so that we can split that heart into multiple recipients." Stories like these demonstrate the incredible progress being made in transplantation and highlight why our work remains so vital. You can watch the story here.

At Donor Alliance we remain focused on improving the national system while honoring the life saving and healing gifts from our organ donors and ensuring that organs go to the patients in the greatest need and that no organ goes unused. As a system, we have work to do ahead, but I encourage you not to lose sight of the fact that our team restores life and hope to thousands of people each year. The Today Show piece powerfully illustrates this hope in action. Our mission is of the utmost importance. Thank you all for making it possible.

[LavenderRabbit in reply to WYOAnne]

Thank you very much.

[CKD2-4]

I have read this article on another site and I am very concerned. I have a call out to my transplant center to ask more specific questions on their process for allocation. I do think if transparency regarding your place on the list and declined offers(by the transplant center) would decrease some of the frustration around the allocation process.