But...why?

Why? That was the question most people were asking at AOPO. Why is Organize doing this? What do they want out of it? What is the end game of the Propaganda Machine, inane metrics, outdated rank and yank system and the strange undoing of UNOS? Is it about money??

The answer I am starting to see is that “they” want different things.?

Greg already has money, and as one of my wise informants observed, “I don’t think Greg wants to work.” What rich boy does? But Greg is more than a rich boy. He is a rich boy with a genetic heart condition.?

I think Greg is legit worried about what is going to happen if and when he needs a transplant. The more he can feel in control of the system, the more he can feel in control of his fate. I don’t think Greg will ever have enough power to get himself a heart over someone else, I hope not, but I don’t think he can leave his life to a list. Even a list that worked for his dad.

My guess is that Jenna wants to feel like she is doing some good in the world. She was roped into this escapade by Greg and brought her contacts to the table. These two kids grew up in powerful circles and they were very smart to go directly to the White House with their cause. They were able to open this door by leveraging their relationship with Jennifer Erickson, a prolific Organize spokesperson whose lies were most recently amplified by NPR, giving her even wider reach and increasing the number of people who are pulling themselves OFF their state donor registry.?

And then…well you know the drill:?

• Organize customized a narrative based on faulty data?
• Written by Bridgespan as a white paper?
• Using Arnold Foundation money (which is Enron money, which is Jenna’s family)
• To execute a multi-million dollar PR and lobbying campaign?
• That looks like it is driven by “patients”?
• And blames OPO performance for the shortage of organs?

This build up was designed to convince the Senate Finance Committee and red state Senator Grassley, who is all about taking on mismanagement and fraud, to take on the OPO’s as the “problem.” It gave cover to politicians on the left and right, and to both Presidents Trump and Biden, to “modernize” in a way that is actually designed to crush the very foundation of the best donation system in the world.

Why? Because the OPOs hurt Greg’s feelings and he unleashed a kind of revenge and disruption where anything is justifiable and any tactic is valid.?

When Greg came knocking on our doors in 2016, the men in charge told him no. No, you can’t create a national donor registry that monetizes donation and mines the data to sell. They said, that is actually kind of shady and you seem a little weird and we don’t want to come to your AOPO cocktail party. They slammed the door in the face of a person with powerful friends, and failed to offer him a constructive path for his passion to transform the transplant system.?

I honestly believe that if any of the amazing women (because it is mostly women) who run the volunteer programs at their OPO’s had been in the room with Greg at the onset, all of this would have turned out differently.?

Hear me out. As the creator of OneLegacy’s Ambassador program I became highly adept at engaging activist recipients, and their families. I knew how to turn someone’s not so great idea about how to do things “better” into an action plan that would actually make a difference to donation. I talked more than one passionate recipient, fresh from their transplant and filled with prednisone, off the ledge and worked with them to design a strategy that put their contacts and talents to use for the cause.

But the boys in charge made Greg feel small, so he got angry. Now Greg is out to show us.?

He is going to show us that he is not small and he does not have bad ideas. He has connections. He can get Lenny Bernstein to write whatever he wants. He can push OIG investigations (that turn up nothing). He can get OPOs to turn on each other. He runs in circles that we do not. He has the political acumen we lack. Greg can puppeteer HRSA because he convinced the White House of his bullshit.?

And we need to remember that these regulations come from the White House.?

As much as I give HRSA a hard time, I almost feel sorry for Suma because she has to deal with this brat who has friends on high. But then I remember that Suma’s boss Carole Johnson worked for the Senate Finance Committee. Carol bought into the original bullshit and now Suma, who I think is a smart woman with a solid career of service, is spreading it far and wide. She could stop it, but she doesn’t…so I don’t feel sorry for her, or let her off the hook.

I think there are other people in the Organize gang who want other things out of this whole shake-up. We should all watch carefully to see who HRSA contracts with for OPTN Board Oversight, or whatever they are calling it. It’s a small contract compared to the IT one, about $2 million, but it is already having undo control over the workings of the current OPTN board.?HRSA has stopped the press on several board initiatives, leaving the poor government staffers completely unsure what to say other than, “I know this is really frustrating, we’re sorry.” For a “modernization” effort that uses the word “transparency” a million times it all feels very stealthy and secretive.?

So we might see names we recognize as part of that contractor relationship with HRSA. I think we might also see some familiar names placed within the government because I know at least one Organize operative who would love to have a high-level policy position within a major agency. Another theory, something that Jenna actually floated, is to create a new government entity that oversees donation and transplant and gets rid of the current HRSA/CMS/OPTN structure. That entity could have more than one Organize name controlling it.?

And even as OPOs are focused on their own fight for survival, I hope we are all keeping an eye on the OPTN. That is the place where the rules are made for who gets transplanted. Yes, there is going to be a new multi-million dollar contract for a fancy database system but the deep problems that arise with transplant are not because of an antiquated computer system. A new database will not fix a damn thing.?

The real work is in the committees and with the hundreds of volunteers who are surgeons and OPO professionals, patients and living donors. They give their time to deal with the complicated issues around who gets listed and how people get matched. And now that they have split from UNOS and don’t have an organization to belong to, they also don’t have protection to not get sued. This means it could be harder to get volunteers to want to do this tedious and tremendous work. Plus HRSA keeps putting up their secretive blockades and the board contractor looms large with the potential of a fresh new hell.?

But the original question was…why??

Here’s what I have come up with…Because of a deep fear that a heart won’t be available. Because of an ax to grind. Because of power. Because of a cushy government job. Because of a real belief they are doing good.

Maybe someone will make a buck on the whole thing - one person I spoke to posited that the financial winners of this whole thing might be DaVita and Fresenius who could take over the service areas of decertified OPOs - but sometimes the why is deeper than money.?

And does it even matter why at this point?

Knowing the why can help us speak into the listening of others and get to the heart of the matter. But if the real “why” is that we hurt Greg’s feelings and didn’t create a productive outlet for him to use his talent and resources to help a cause that is close to his heart, is there anything we can do about it? Is there an olive branch within reach, or are the wheels churning too quickly to stop?