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- [00:05]
A
It's Cheryl Akison. Welcome to another edition of Full measure. After Hours today, dead or alive. With a million dollars per body in play, some in Congress are asking whether some authorities are too quick to declare an organ donor to be dead. You're in for another fascinating topic this week. Since 1988, more than a half million US organ donors have made 1.1 million transplants possible. 170 million Americans are registered donors, yet more than 100,000 people still wait. Organ procurement organizations, OPOs are non profits kind of middlemen tasked with managing removal and transfer. But major investigations and insider whistleblowers have exposed some disturbing cases involving the gift of life. Take the alarming case of TJ Hoover. In 2021, Hoover was declared brain dead after a drug overdose in the hospital. As an organ donor, he was prepped for organ donation but repeatedly showed signs of life, according to a whistleblower then with the Kentucky organ donor affiliates. This was in Kentucky. The Kentucky organ donor affiliates are coda. TJ Woke up during a process, the whistleblower says, the process of checking his heart for suitability for donation. He was paralyzed and sedated when he woke up, taken back to icu and the family never told what happened, never told that he woke up. TJ Hoover was still pushed toward organ removal, according to the whistleblower, during that honor walk that you may see sometimes on video, where organ donors are wheeled through the hospital on their way to the procedure. During his honor walk, TJ Says the whistleblower woke up even more, was more responsive, tracking with his eyes, looking around. But the family was told by the representative with the Kentucky Organ Donor Affiliates, or cota, that this was just reflexes. The whistleblower said that's not true. He was waking up, she says, when they got him to the or, TJ Was pulling his knees up to his chest, crying, trying to pull out his tubes, visibly upset and aware of what was going on. What happened then? She says doctors administered morphine to calm him down and there were moves to go ahead and continue. Well, the procedure to take T.J. hoover's organs was finally halted. You'll be glad to hear, when doctors refused to continue, supposedly to the dismay of the organ donation coordinating group, who is said to have wanted to find other doctors who would, quote, finish the case. No doctor did finish the case, and TJ Hoover survived. As of this day, about five years later, though, he remains disabled. As for the organ donation group coda, now called Network for Hope, they insist all protocols were followed. They say accounts by whistleblowers or what's been reported in the news greatly misrepresent the case. But the group has announced reforms, and they say they are committed to transparency and rebuilding trust. Meantime, federal investigations by HHS and Congress concluded that Kentucky organ donor affiliates acted improperly and flagged broader issues, including inadequate assessments, poor communication and other problematic cases. In fact, there was a shocking review released July a year ago by the federal government. They found one in three cases, about 30% handled by the Kentucky Organ Donor Affiliates. One in three cases, donors showed signs of life after organ removal began, such as giving responses to pain, crying or gasping. All of this causing the procedures, thankfully to be aborted. Did you know that this whole system is highly profitable? Even though organs aren't technically sold? A single patient can reportedly generate hundreds of thousands of dollars worth of tissue with total value per body sometimes exceeding a million dollars. The transplant recipient or taxpayers, through Medicare and Medicaid, well, we all pay dearly. Intermediaries, providers, hospitals and surgeons, they benefit. But donors and their families, they get nothing. In today's podcast, we dig into some of this in an interview with Senator Ron Wyden, who spotlighted these issues in a bipartisan investigation. Here's Senator Wyden.
- [04:57]
B
If you could, before we dig in, synopsize some of your concerns in just a paragraph. With the organ system that we have today. What would you say are your greatest concerns?
- [05:09]
C
What we have to do is modernize the system and make it more efficient. We have to do it in a way that protects the patients. For years and years, the field was dominated by a monopoly, one of these Alphabet soup kind of names. And the important thing is the monopoly was out of date, didn't really work for the current economy in the private sector, and was anti competitive and anti innovation with the help, because we have always done this in a bipartisan way, the help of Senator Grassley. We had important hearings in 2022, and we worked on a groundbreaking law, and we're implementing it now to basically break up the monopoly and create a new system.
- [05:58]
B
What is the monopoly and what would the new system look like?
- [06:01]
C
The monopoly basically was run for decades with just a few insiders. My own feeling is it was riddled with conflicts of interest. Now we have a smaller, leaner system. We encourage a variety of nonprofits and hospitals are 250 hospitals that do transplants. And I think it's going to make a lot more sense for the consumer. Now, understand we've got a long way to go, but it wasn't very long ago when you saw organs lying around Airport hangers, and they were in bags and they were run over with tire tracks. So we're making progress. We got a long way to go.
- [06:43]
B
Why would organs be. Just to give us the backstory of that, why would organs be sitting at an airport waiting?
- [06:49]
C
Because they were being shipped and they got lost in a system that really didn't do enough to protect an important asset to the country, these organs, life saving for people who are waiting. There are 100,000 waiting. And we basically said, this ought to wake everybody up to how serious the problem is.
- [07:19]
B
Can you give any concrete examples of conflicts of interest that existed or might exist within the system?
- [07:26]
C
Well, the old system was basically one big conflict of interest. And there were people that did various things that didn't seem to go right to the mission, which is to modernize the system and protect the patients. And even now, as we implement the law that we passed in 2023, we have some really staggering things. The monopoly still holds hostage some of the reforms. There's an organ matching algorithm, which again reflects the times and opportunity to use tools to help patients and also do it in a cost effective way. The old guys, the old network are still holding it hostage. By the way, the algorithm system is being paid for by taxpayers. So I've got a bill coming up and we're going to find some ways to get rid of that hostage.
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B
If nonprofits are by and large controlling the system, how does somebody have a conflict of interest? Are there for profit people serving on the nonprofit boards that are maybe influencing decisions? Who's making money on this?
- [08:34]
C
It seems that everybody sees it as a profit center in theory, but then they create incentives that just do so much damage that everybody loses out. For example, we've seen something called the pancreata loophole. And this was based on trying to find a way to address the rating system and show that you were giving good quality. And basically all it has done is create skepticism and cynicism that because it's made the system less functional.
- [09:09]
B
For people like me who don't understand beyond organs that there is tissue, there are other parts of the business involved. What is the pancreata aspect of it?
- [09:20]
C
Well, we all know what a pancreas is, and there were ratings being given. And because nobody really thought through the implications of the ratings, there was a whole new set of people procuring the organs. And it worked very poorly. It didn't do what we wanted, which was to encourage a better pancreas for patients. But it also spread cynicism about how the system worked.
- [09:50]
B
There have been some whistleblowers and investigations looking into the possibility, as some claim, that sometimes people's organs are harvested before their time. Are you concerned about those stories and what have you learned?
- [10:02]
C
Very much so. And even one of those incidents is too many. And we're looking at how we might include a way to have more enforcement against those kinds of practices. And I'll have some more to say about that before long.
- [10:19]
B
When you first heard about a story like that, even if it's just one or it could be more, what were your thoughts? Because when I first was reading stories about this, including recently saw some coverage on social media, it was shocking and shocking to hear a nurse in one example say this was not uncommon, that this had happened before when she was in an operating room.
- [10:41]
C
This was slap your forehead kind of stuff. I mean, you say to yourself, how can it be? Because most of the people who work in this field are good and caring, but there are some bad apples. There hasn't been enough enforcement. And there has been certainly in these kinds of situations. You describe a lack of training and safety.
- [11:02]
B
What do you think moving forward from today needs to be done now, in addition to whatever's already been passed?
- [11:09]
C
Well, I will take the 2023 law and basically put in place new measures to deal with conflicts of interest, better enforcement and a real dose of transparency and accountability. Under the old system, it's called unos, they were the monopolists. There really wasn't any accountability and they basically pushed everybody out of the way for decades and decades. And Senator Grassley and I, and we had great support, bipartisan support in the Finance Committee, said we're going to make that situation part of the past and we're on our way. We've got more to do. You've just highlighted three or four things that people have a right to to say. How in the world can that go on? And we're going at it.
- [12:02]
A
More on all of this on my television program Full Measure on Sunday, May 5th. You'll also hear from a key whistleblower, someone who told the story of T.J. hoover. And you'll hear about other shocking cases involving people headed toward organ transplantation who weren't really ready and who ultimately survived when the procedures were aborted. To find out how to watch Full Measure, go to cherylakkeson.com and click the Full Measure tab for a list of stations and times. Or you can always watch online at FullMeasure News. On Sunday, we feed the program live at about 11am Eastern Time and for replays if this happens to be after the fact, you can find this story and others on our unadvertised YouTube channel under full Measure with Cheryl Akisson. I hope you enjoyed this week's podcast and that if you did, you'll leave a great review, subscribe and share it with your friends. Give a listen to my other podcast, the Cheryl Akison Podcast, and to support independent journalism, go to cherylakisson.com and click the Store tab to check out some exciting items designed exclusively for independent thinkers like you and the people you're close to. Proceeds support independent reporting causes such as the ION Awards and the Brechner center for Freedom of Information. Do your own research. Make up your own mind. Think for yourself.