Telling the NPR Tale.
Why now?
By Tenaya Wallace, CEO, Crowd Advocacy
October 24, 2024
My colleague at an eye bank posed this question as we discussed the recent tale told by NPR about a man who is, by all accounts, alive.
In a recent statement, AOPO wisely pointed out that the primary storytellers in the NPR tale – note that I refuse to call it a news story – were former employees who used none of the existing systems in place that provide OPO oversight.
If these former employees were really so horrified, why did they not tell anyone or take any action until three years later? Why was there no incident report internally? Why did UNOS, or HRSA or CMS, which all have oversight capacity, know nothing about it? Why did they wait to tell their tale at a congressional subcommittee meeting that was, essentially, an Organize dog and pony show?
I have a few more questions.
Why is Greg Segal quoted by a respected journalist who works for a respected news organization corroborating the story of people that he presumably doesn’t know? Why is his name a part of this at all? (I actually know the answer to this. Because Organize trolls OPOs for disgruntled employees and then gives them a platform to tell tall tales).
Why did Rob Stein report an amalgam of hearsay as news? Why did every other online story, of which there are dozen and dozens from around the world, simply repeat and report on the NPR story? Why has no publication taken any interest in questioning a case with a complete lack of evidence? A case that is so sensitive and explosive that it could destroy public trust in organ donation.
This is the story that people fear the most, and Organize knows that. This is the story that people already believe without needing any evidence, and now NPR has provided that evidence. Rob Stein has confirmed their fear.
And it is devastating.
In response, AOPO and every OPO has gone on lockdown from the news media. Hunker down and this will pass. But this will never pass. This genie has been let out of the bottle to cause chaos and destruction, promoted and placed by Organize.
This was Greg Segal seeing Rob Stein at a cocktail party and telling him about the congressional subcommittee hearing and this crazy story that needs to be reported. This is what Organize is so good at.
But back to the original question, why now? The answer is, because much to the chagrin of Organize, OPO’s are not failing.
There is absolutely no evidence to support the Organize Propaganda Machine. In fact, there has been a litany of peer-reviewed articles using scientific methodology showing that everything Organize has been telling Congress is a complete and utter lie. https://sidandt.org/the-science/peer-reviewed-science
And I think that CMS and HRSA are starting to catch on. They are waking up to the fact that they have been fed a tall tale by elitist gremlins who have been wreaking havoc on the world best organ donation system, for no apparent reason other than they are mad that they were told “no,” they couldn’t run a national registry and sell the data of people who are altruistic enough to give the gift of life. Seriously.
Why now? Because the Organize tactics are not working. So now they have to take it up a notch. They have to destroy the organ donation system, not by taking down the OPO’s with a faulty metric that CMS is realizing will be completely destructive, but by going after the public themselves.
And what better way to destroy public confidence in the organ donation system than to give them proof of their greatest fear. The fear that underscores every human’s consideration around organ donation. The fear that they might not be dead yet.
It is the most destructive tale of all and Organize just convinced NPR to tell that myth as if it were the truth. It is a myth that we in public education, and me as the founder of Donate Life Hollywood, have been trying for decades to eliminate. But with one tiny flick of his well-connected finger Greg Segal has generated a story with the power to decimate public trust.
The fact that Organize is willing to go to this length is proof that they do not care about the people waiting and dying on the transplant list. Anyone who cares about transplant would never purposely work to eviscerate support for organ donation.
So now, when donation rates plummet and people remove themselves from registries by the thousands, Greg gets to be right. The OPO’s are failing. Failing to get hospitals to work with them because frontline staff can’t answer questions about what happened in Kentucky. Failing to engage with the community who will not register to be a donor because they heard a story on NPR that someone wasn’t really dead. Failing when families of registered donors refuse to allow the donation to take place.
Greg gets to be right. And that’s all privileged little shitheads really want at the end of the day.
So to anyone who ever thought that maybe Organize was actually trying to do something good, this is proof that they are inherently destructive. Not for a greater good. Not disruptors of the Silicon Valley sort. Disruptors of the deeply disturbing sort.
To every single person who is working for an OPO right now, I want you to know that I feel the pain of this tall tale. I see the ramifications on front line staff. The impact on hospital perception. The impact on public education. The impact on morale. Every day you are trying to do some good in the world. You are trying to help grieving families leave a legacy. You are trying to be a force for humanity’s love and generosity. And Greg Segal just made your work exponentially more difficult.
I will never forgive him for this.
Destroying public trust is not a tactic, it is betrayal. I am devastated and welcome you to be devastated too. I’m also going to be in action and I welcome you to be in action too.
Your organizations may be paralyzed by fear and laws around what they can say right now, but each and every one of you touched by donation and transplant needs to take action. You don’t get to sit on the sidelines any longer. You don’t get to pretend that the Organize Propaganda Machine doesn’t impact you. And transplant centers I am looking at you with an eagle eye.
Here are three things you can do right now:
- Follow Science in Donation and Transplant on LinkedIn and Instagram. I know you don’t know much about them, but I promise over the next few weeks I will be sharing more about their work as I interview their incredible advisory board. https://www.linkedin.com/company/sidandt/
- Contact NPR. Say that you are deeply concerned about Rob Stein’s reporting. Tell them how many years you have worked in the donation and transplant community or if you are a patient or donor family. Let them know that you believe this story was concocted by Organize as part of their propaganda campaign to dismantle the best organ donation system in the world. Note that the story lacks facts and is devastating to public trust in donation. Tell them to contact me at tenaya@crowdadvocacy.net
- Use this form to contact Congressman Morgan Griffith, Chair, Subcommittee on Oversight and Investigations. https://morgangriffith.house.gov/contact/contactform.htm Say how you are connected to donation. Let him know that a story told at the Subcommittee hearing on September 11th has now been reported on NPR. It has no factual evidence and is part of Greg Segal’s propaganda campaign and can have a devastating impact on donation. Encourage him to review this document by Science in Donation and Transplant that provides facts to counter Organize’s outlandish charges. https://static1.squarespace.com/static/5f8f47a5cbac6853bf0785ca/t/66eb3f7e79c1fc197819d8bb/1726693247019/20240918-Subcommittee-Memo-v1.pdf
Tenaya Wallace is the CEO of Crowd Advocacy and has dedicated 20 years to organ donation, a decade in sustainability and has a background in public policy. She has designed lasting programs for the organizations she has served. These include Donate Life Blue and Green Day, Donate Life Hollywood, Donate Life Roses, Sustainable Works, and implemented RED Shirt Friday at Raytheon. She can be reached via email at tenaya@crowdadvocacy.net.
