ORGANized with Greg Segal | Crooked Media
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September 13, 2022
America Dissected
ORGANized with Greg Segal

In This Episode

Organ transplantation is one of the miracles of modern medicine. And yet the system that we use to manage is anything but miraculous. Organs are damaged or lost, and people die because of it. Abdul talks about the logistics underneath so much of what we do in healthcare, and then he interviews Greg Segal, co-founder of Organize, an advocacy organization focused on reforming the broken organ donation system.

 

TRANSCRIPT

[sponsor note]

Dr. Abdul El-Sayed, narrating: The Biden administration announced a plan for annual COVID 19 boosters beginning this fall. The president has also requested $74 billion dollars from Congress, which has yet to pass a new line of COVID funding to support the first tranche of new boosters this fall. Juul laboratories will pay a $438.5 million dollar settlement to 34 states and territories for explicitly marketing its product to children. This is America Dissected. I’m your host, Dr. Abdul El-Sayed. [music break] Today we’re talking about organ transplantation and the outdated broken system that manages it in the United States. But first, I want to explain a juxtaposition. There are literally two moments during my medical training that took my breath away. The first was the first time I saw a living brain. I was observing a craniotomy, an open brain procedure. And after they removed the skull, I saw a pulsating brain. That’s right. The brain pulsates in the skull as blood pumps in and out of it. But that’s just a cool story. The second moment is actually the subject of our show today. I got to participate in a heart transplantation. The patient was a relatively young man with a genetic form of heart failure. His failing heart struggled to pump blood through his body, meaning that it often backed up into his lungs, leaving him lethargic, short of breath, even after a quick walk. His fingers were clubbed, a telltale sign of chronic lack of oxygen. He’d been on the organ transplant list for years. And this. This was his day. Our surgical team had been in constant contact with the team that was flying his new heart in from a nearby town. It had previously belonged to a young man in his mid-thirties that had died of blunt trauma to the head in a motor vehicle accident. He wasn’t wearing a helmet. That’s one of those eerie things about a transplant. There’s an asterisk on it, while a new organ can save a life. It also means that another was lost. A brutal reminder of just how tenuous our existence can be. Our patient was prepped and ready. His chest opened just as the new heart made its way to our operating room in a cooler. That’s right. A living heart packed in a cooler. We connected the patient to a cardiopulmonary bypass that would act as his heart and lungs all at once as we drained and removed his diseased heart. After a few cuts, the old heart was out. The new heart was put in and connected to our patients great arteries. The blood was slowly drained out of the bypass, into the new heart. And then it was shocked back into rhythm. Just like some plumbing. The whole system was checked for leaks. And just like that, our patient had a new heart. It was literally the closest thing I’d ever seen to a miracle. The fact that we can do that safely, routinely, consistently is a remarkable feat of human ingenuity and the will to live. But today we’re not talking about the miracle. We’re talking about all the bureaucratic work, all the waiting the young man did before we could transplant his new heart into his body. Because despite our technical prowess at performing organ transplantation, the system that procures, allocates and delivers organs in our country is deeply broken. 33 Americans waiting for transplants die needlessly every single day because of the inefficiency of the system. Back in the 1980s, Congress passed a law that offered contracts to a system of organ procurement organizations, all managed through a broader organization, the United Network for Organ Sharing. But those organizations were given government monopolies, singular contracts that, in effect, shielded them from any requirement to meet standards for effectiveness, efficiency or safety without any competition and shielded from any real oversight they’ve stagnated and Americans are suffering for it. I wanted to understand more about the system that manages organ transplantation in the U.S., how it started, why it’s broken, and what lawmakers and activists are doing about it. So I reached out to Greg Segal, co-founder of Organize, an advocacy organization dedicated to improving the organ donation system in the US. Here’s my conversation with Greg Segal. 

 

Dr. Abdul El-Sayed: All right, we’re recording. Um. Let’s do this. All right. Can you introduce yourself for the tape? 

 

Greg Segal: I’m Greg Segal and the founder and CEO of a patient advocacy nonprofit called Organize. 

 

Dr. Abdul El-Sayed: Greg, how did you how did you get into this work? 

 

Greg Segal: Uh. I got into it by accident and for reasons I wish I never had. My father, uh who we had believed was otherwise, otherwise healthy. Uh got uh from one day to the next, he went out for a jog and he collapsed. And it turned out that there was an underlying uh heart issue, uh which we’ve subsequently learned is a genetic issue, and it has affected other family members and likely will affect even more family members going forward. But he was out for a jog and he collapsed and we took him to the emergency room and uh they basically said a version of good thing you came in tonight, he would have died overnight. Uh. He needs a heart transplant. Um. So, you know, it was really sort of the 0 to 60 uh experience, which taught us a couple of things. Uh through the process really learned how broken the organ donation system is uh and also learned that none of us ever get to ignore my dad again and think that we will ever hear the end of it. He. You know, he’d been complaining, he didn’t feel well, and I don’t think any of us took him seriously enough, but, uh you know, was thrust into it by accident. Wish I’d never been here, but trying to make the best of uh the experience that we’ve had to to drive reforms. 

 

Dr. Abdul El-Sayed: And how long did your dad have to wait for? For a heart? 

 

Greg Segal: So it was about five years from uh going to the emergency room that first day to ultimately uh getting his transplant. Uh. There were a lot of ups and downs. He wasn’t necessarily, uh you know, quote unquote, “on the waiting list the whole time”. There were three open heart surgeries and there were periods uh in his journey when he was too sick for a transplant. So it’s a fluid process, but it was it was five years end to end. 

 

Dr. Abdul El-Sayed: And is that is that usual? Uh. How long do people generally have to wait for a heart transplant in America these days? 

 

Greg Segal: Uh it’s not unusual, uh you know, it varies a bit state by state and certainly varies. You know, in our family, there’s heart issues. Uh if you need a kidney, it could take you ten years, you know, in some states. And, you know, that also obscures the fact that a lot of people who need transplants never get a transplant at all, uh which is to say a lot of them don’t even reach the waiting list. It’s not necessarily true that if you would benefit from a transplant, you reach the waiting list because supply demand issues, a lot of people need transplants. My aunt needed a transplant. She died, unfortunately, in need of a transplant, uh but never was on the waiting list. So, you know um, it can be a little bit fuzzy when you say how long somebody uh waits, but five years, certainly. You know, I consider him lucky to wait five years and get a transplant. A lot of people never get one at all. 

 

Dr. Abdul El-Sayed: And to your point, first, I’m really sorry to hear about uh your aunt’s. Um, to your point, though, there are going to be a lot of folks who are waiting on a transplant list. They meet the requirements to get a transplant and then either they pass away uh for need of that new organ on the list or they deteriorate to the point where um they’re no longer candidates. How often is that happening uh to people in our country? 

 

Greg Segal: So 33 people die every day who had already reached the waiting list, either because they died while they’re on the waiting list, or they were removed from the waiting list for what it is technically termed as being too sick to transplant, uh many of whom are going to die subsequently. Uh. So that’s 33 people a day. Uh. Which of course then also obscures the you know, point I made before is that so many people, my aunt included, need a transplant. But because uh if you have no chance of getting it, uh transplant centers don’t list everybody for transplant. They, you know, there’s 500,000 Americans on dialysis today. Uh. Most of them would benefit from a transplant. You don’t put everybody on the transplant waiting list because there just aren’t enough organs to serve them. So 33 people die every day after having reached the waiting list. And of course, you know, repeating myself now, but many people never reach the waiting list at all. 

 

Dr. Abdul El-Sayed: As you think about your dad’s experience, the experience of other people uh in your family, what as you started to look into the system, did you start to learn about both the ubiquity of that experience and then more, more importantly, why it happens? 

 

Greg Segal: Yeah. So, you know, I’ve had two experiences uh here. One, uh just as a patient trying to be or as I should say a caregiver uh trying to, you know, my being my dad’s son while he was sick uh and then, you know, subsequently, uh after finding all the inefficiencies in the system or at least understanding that they almost certainly were a lot of inefficiencies, inefficiencies in the system. I started uh Organize as a patient advocacy nonprofit, and we were um awarded a position in the Secretary’s Office of Health and Human Services uh in the Obama years from 2015 to 2016. So I got to understand that first what it’s like to be a patient uh and then, you know, subsequently got to, I guess, graduate into uh understanding, you know, what are all of the policy problems that are causing this this wait. But what I can say from the patient experience is, you know, as much as I’m sure I could give feedback and I’m sure this varies uh hospital by hospital and certainly by people’s race and ethnicity, uh you know, and who they are and where they come from. People, of course, are treated differently. Um. There’s a lot of things I could tell you could have been improved. But fundamentally, what my dad needed was a heart. If you told me everything else about the patient experience would be uh worse, you know, qualitatively but my dad would have gotten a heart sooner, I’d take that, I’d take that trade, no pun intended, in a heartbeat. Uh. And then so if you understand, you know, understanding that what a patient’s need is the organs. The question then is why are there not uh nearly enough to go around? And that started to be uh not just my passion project, but uh, you know, turn in to my professional life uh and a lot of the work that we advocate for. 

 

Dr. Abdul El-Sayed: So to that to that point, why are there not enough to go around? I mean, there’s the obviously the number of hearts that can be transplanted is a function of the number of people who pass who have healthy hearts to to give. But then there’s all kinds of noise and inefficiency in the system. And my sense is that, you know, as a as an organizing entity, um your goal at Organize is not that there should be more people with healthy hearts who die. Your goal is that um the majority, as many as possible of those hearts can be harvested and extend lives. So can you can you tell us a little bit about how that system works, why it is so inefficient and um how you guys are thinking about it? 

 

Greg Segal: Absolutely. And I’ll start by just scaling this for people is there’s research that shows a fully efficient system. You could fully service the existing waiting list for hearts, lungs, and livers, and, you know, of course, in our family it’s hearts. But uh I, you know, um clearly I care passionately about people that need other organs as well. You can entirely service that waiting list within a couple of years. 

 

Dr. Abdul El-Sayed: Wow. 

 

Greg Segal: So to know that my dad, you know, um if the system had been well run, maybe you know would have waited a few weeks rather than five years. And I can’t stress enough he was lucky to go through everything he went through and still get it after five years. Uh uh truly the uh for many, many people the system doesn’t work. My dad was, as awful as it was, was one of the lucky ones. And there’s some survivor biases as you hear people’s stories about this. But the reason why there’s such an inefficiency, I started to talk about organ transplants of people or organ donation and I see everyone pull out their driver’s license and they’re so proud to show me that they’ve registered and they’ve at the DMV and they have the heart on their license. And I sincerely hope that a lot of people do that, or at least consider if they want to do it. But what most people don’t understand is there is a grossly inefficient of uh network of government monopoly contractors who are responsible for if you die in an organ donation eligible way. And that’s maybe 3% of deaths and it’s strokes and traumas, and opioid overdoses. Uh there’s something called an organ procurement organization and there’s these government contractors monopolies. Uh OPO is the is the acronym that’s used. They’re responsible for responding to all cases and then working with the family uh either to if I had registered as an organ donor to work with my family to, you know, go ahead, hopefully and proceed with my wishes. Uh. Or if I wasn’t a registered organ donor legally, my family can still authorize that. And the biggest predictor of whether people become organ donors or not is really the strength of how well their their local OPO, their, you know, uh local OPO is run. And there’s huge variability uh which stems from a lot of monopolism uh and, you know, a lack of accountability for for severe failures. 

 

Dr. Abdul El-Sayed: I want to unpack that a little bit. So what you’re saying is that there are regional monopolies organizations. So, you know, one of a kind organizations that exist to procure um eligible organs for transfer and there’s really no um competition. Now, do you feel like it’s the competition that’s the issue or it’s the inefficiency of those OPOs or it’s the lack of standards that that force them to uh to adhere to, to maintain that monopoly? 

 

Greg Segal: Yes. It’s you know, it’s a lot of compounding problems. OPOs at least legislatively, has have existed since 1984. They preceded that. But the legislative infrastructure has been around since. It’s called the National Organ Transplant Act or NOTA, which was passed in 1984. And since then opposed, of course, you know, we keep saying that there are monopolies, uh geographic monopolies, which is true. So they have no competitive pressures uh to perform well. Uh. But the thing that is, you know, just truly mind blowing is uh OPOs until actually this month is the first time they’ve gone into effect uh have operated in a system where the metrics by which their performance was evaluated were not legally enforceable, which is to say no matter how poorly an OPO performed, it could not lose its contract. Uh and OPOs are also the only major program in health care that still operate in what’s called a cost reimbursement uh basis, which means 100% reimburse for all costs, regardless if they perform well or performed poorly, or whether the money is spent on patient care or not. So there’s no there’s been no pressures on OPOs at all uh to perform well uh or even to perform adequately. And that’s why you can have uh an America where 90% of Americans say they support organ donation and this grossly uh inefficient and often conflicted uh set of contractors. It’s about 30%, 35% of potential donors that they recover. And that’s why you have this huge gap that can be 28,000 more people receiving life saving transplants every year if you had accountability in the system. 

 

[AD BREAK]

 

Dr. Abdul El-Sayed: So what in your mind um is the solution around uh the frankly gross inefficiency of these OPOs? Should there be more competition? Should there be more enforcement uh in terms of uh meeting certain requirements? How how should we solve this? 

 

Greg Segal: Yeah, so it’s a good question. And there was new regulation that was finalized in November of 2020 and then again in in March of 2021, that for the first time will hold OPOs accountable for um objective standards. As government contracting works, it didn’t go into effect immediately, it actually starts to go into effect now uh this month and then it’s a four year contract. So it’s actually not until 2026 uh that any OPOs that are failing will lose their contracts. Uh. But that is fundamentally a really important first step. Uh. And the the next very important thing that the Biden administration can do uh is they need to, you know, strongly enforce the standards that they’ve already finalized. There’s a massive counter lobby from the OPO industry where they’re trying to, you know, uh weaken the standards that were in place. And it’s really important that the Biden administration enforce the rule they’ve already put in place and then to go above and beyond uh what they’ve done already with additional transparency standards. And if I could, another just sounds like a buzzword, but to unpack it for a second, America is the only of all international transplant programs, which are programs. Only America doesn’t have the transparency that would allow you to see how many eligible deaths were referred to each OPO and how many they responded to. And one of the reasons that’s important isn’t just the basic evaluate OPO performance, but OPOs are far less likely to respond to the same uh case if it’s a Black donor versus a white donor. There’s a lot of inequities in the service, which isn’t just a disservice, of course, to the donor families. But because same ethnicity matches matter if you’re recovering fewer organs from communities of color on the donor side, there are just far fewer organs available for those same communities on the recipient side. 

 

Dr. Abdul El-Sayed: Hmm. So walk me through this. Let’s say an OPO loses its contract. They’ve operated as a monopoly for so long that there probably aren’t other organizations waiting in the wings to take their place. And so what would happen in that situation? Who would step in to organize uh the procurement if the one OPO that’s been doing this for 37 years, doesn’t it no longer meets the requirements for its contract? What would step it in in in the void? 

 

Greg Segal: So legislatively, it’s a closed field, which is to say, think of the smartest ten people you know. If they wanted to launch a startup uh OPO and enter the market, they can’t. So uh it’s confined to existing OPOs. That said, there is uh what would technically happen is uh an OPO in any area if it when it gets decertified or if and when it gets decertified. Uh. Any of the other, there are currently 57 OPOs, any of the other 56 in that case are allowed to take over their uh service area uh which you know well I said what’s before is true. No OPO has ever actually been decertified for for uh poor performance. Uh. That’s different from saying no OPOs ever merged. Merged. There used to be 128 OPOs and just through natural you know, over the course of decades for any number of reasons OPOs had decided to merge with each other. Technically, that’s what would happen if an OPO gets decertified, you know, a neighboring or other OPO might take it over. Uh. That’s happened 71 times in history. It’s a well-trod path. So that is what it would happen if you, you know, just pick any geography you could think of and just imagine the OPO next door uh expands into its territory. And, you know, that’s the way it works. And there’s there’s no reason to believe that wouldn’t be a good path going forward. 

 

Dr. Abdul El-Sayed: But if you follow that down the line, you end up in a situation where you have like OPO consolidation, which just increases the monopoly power and their ability to counter lobby. How do you know that the OPO that um takes its place doesn’t then you know, as it tries to scale, um replicate some of the same issues that the first one did. And I guess the question that I’m getting to is what is the role of competition? Because the other side of that is, you know, back in the day, there used to be this this this really interesting and really perverse uh ambulance competition between different ambulances that would try and uh pick up someone who was ill. And it would create this, like, really perverse sort of situation where you had monster ambulance traffic all going to one call and trying to pick up that body. And it wasn’t always the best for the person uh who was trying to be picked up. So I guess my question is, what is the role for for competition, if there is one? And then how would you coordinate that if there were to be one uh in this space? 

 

Greg Segal: Yeah. So a few questions. I’ll try to take them in turn. But um you know, the first most important point is, you know, I think what you’re alluding to is if you keep decertifying OPOs and consolidating them, do you get down to uh just a small number? And, you know, if what we’re trying to say is there’s too much monopolism, are you exacerbating uh the problem? I understand the spirit of that question. In practice, I think what’s really important is my hope is not that I’m afraid of OPOs being decertified, but the hope isn’t lets decertify a lot of OPOs. The issue is the way an OPO gets would get decertified over in current regulation isn’t some subjective, I don’t think you’re good enough, I’m going to take your contract from you. Uh. It’s the top 25% of OPOs set a benchmark, and every other OPO would have to be within a degree of statistical significance. There’s no reason that every OPO can’t keep its contract every cycle. And you know, I think the theory of the case here is that in a world where they’ve had no standards or accountability before, uh performance has been hugely lacking. And in a world where you impose standards, uh they will all be better. And just to you know give a a specific example here, there’s a 470% variability between the best and worst OPOs. That is not a variability you should except anywhere in health care. Uh. When you look at just a subset of Black donors, there is a ten x variability. Uh. And what you have in this country, you know, if you think of uh organ donation as a vital health care service, not just for the donors who you know and their families who want their wishes honored, their legally binding wishes, end of life wishes, but also the recipients where it’s literally life and death for them. There should not be this 500% variability and certainly not uh for Black donors, a, you know, ten X variability. Uh. And just by imposing these basic standards, the you know, what we’re trying to get to is a world where they can be reasonably as good as what the field is uh has already established as possible. So the hope isn’t let’s decertify all of them. The hope is that they all get better and they don’t have to be decertified. That being said, there’s no reason to fear decertification. And I think without the credible threat that you could lose your contract if you don’t perform well, that’s where you, you know, have all of these uh hugely deficient practices. 

 

Dr. Abdul El-Sayed: The other question that this raises is that there’s a lot of data sharing that is privileged and private data, and some of these organizations haven’t done a great job protecting that. Can you speak to some of the security concerns around OPOs and what it’ll take to um to address those? 

 

Greg Segal: Yeah. And there’s you know, uh you’re asking, particularly from the um uh tech security, uh which which I’ll come to, I also just want to make an important point which animated a recent Senate bipartisan Senate Finance Committee hearing uh and then actually got a corresponding front page story in The Washington Post. Uh OPOs. This is astounding to me, but you do not have to have any clinical training to work in an OPO. So there’s also a lot of patient safety issues. So I’ve never worked I’ve never gone to med school. I you know, I don’t even watch medical dramas. I could literally work for an OPO tomorrow uh and start managing donor cases. Uh deceased people are not legally considered people, so don’t have the same protections. Uh and that totally ignores uh the idea that depending on how an OPO manages the case, there is ultimately a downstream recipient who very much is a living person, uh and if a case is mismanaged, uh recipients can die or otherwise uh be harmed because of it. So I know your questions about IT security. I’m happy to talk about that too. But I think the, you know, one of the biggest threats to patients is the, you know, just the patient safety. 

 

Dr. Abdul El-Sayed: Surely, though, if you’re harvesting an organ, you have to be a surgeon, right? 

 

Greg Segal: Uh. Yeah. So they’ll contract with surgeons who don’t necessarily, are not necessarily transplant surgeons. And also, there’s a lot of management of the case, you know, before you even get to the uh organ recovery. And I’ll just give you one example. The South Carolina OPO misidentified, uh you know, a donor’s blood type uh and sent the organs out for transplant. Uh it turns it turns out uh that, uh you know, the the donor’s uh widow ended up suing and it turned out uh in discovering the case. The chief medical officer for the OPO was not licensed to practice medicine in the state of South Carolina uh and only spent, you know, uh just a few minutes reviewing the case. So, you know, what you have is, you know, these generally, well I should say in some cases, in the worst cases, you can have completely untrained people who are misreading, you know, reviewing blood work of people that have been uh hemodialyzed and maybe misread something. And if you don’t have the controls in place and you don’t have clinical professionals uh reviewing every case, uh there are gross patient safety issues that can occur. And The Washington Post did a front page story saying 70 people uh in just a seven year period uh died because of completely preventable errors. 

 

Dr. Abdul El-Sayed: And then and then there’s the cybersecurity issue. Can you can you walk us through that one? 

 

Greg Segal: Yeah. So we’ve been talking about OPOs. There’s another uh organization at issue here and they’re actually the one that’s under investigation by the Senate Finance Committee called UNOS know, the United Network for Organ Sharing. And they’ve had they also have had a monopoly contract uh managing uh this since a contract was created legislatively in 1984. UNOS has had it uh since 1986. Uh I as not only a monopoly as they’ve had it, but they’re the only contractor to ever even not just win the contract and run the contract, but to even bid on the contract. Uh. And over those, you know, 40 years, uh you know, lack of competition, so many things have just completely ossified and and are just nowhere close to industry standard. So just to um put this in Technicolor and then I’ll answer your question about the tech security. Uh UNOS is uh, after an organ is recovered uh it’s sent to a transplant center, uh you know, for ultimate transplant, UNOS is 15 times more likely to lose or damage an organ in transit than an airline is your luggage. It’s just I mean, just so far beyond err to stay behind what’s been established as, uh you know, standard in so many different uh facets that, UNOS is uh charged with, but one of which is they have this uh technology system which, you know, to your question earlier about very sensitive patient data is stored in UNOS’s system about uh patients, you know, medical records and blood type and, you know, all sorts of issues. I the United States Digital Service, which is I don’t know if all uh listeners will necessarily be familiar, but uh is basically the top uh public sector technologists and they’re uh based in the White House, did a review of UNOS’s technology and they titled their ultimate report, which The Washington Post uh covered, lives are at stake. Government reports generally aren’t titled things called like lives are at stake. It certainly is, you know, sort of anodyne titles. But this was, I think, their way of just highlighting, you know, bolding just trying to call attention to how screaming of a problem this was. Uh. And when the Senate Finance Committee uh read this report, they ended up writing to writing a letter to uh Department of Homeland uh Security, talking about sort of urgent national security threats, uh as The Washington Post uh covered it, because of just huge insecurities and vulnerabilities uh in the system. Uh. And all of this just you know, coming back to the same point is when you don’t have any uh standards or competitive pressures for 40 years, this is what you end up with. Things just completely fall apart. 

 

[AD BREAK]

 

Dr. Abdul El-Sayed: And you know, just to put a fine point on this, the the issue here is that, you know, once you build a system, let’s say, in the eighties and nineties and there is no risk that you have to losing your contract, you just allow that system to persist and persist and persist. And there’s been a lot that’s changed um since the eighties and nineties about, you know, logistics and the ability to um to leverage the best of technology to improve efficiency and effectiveness in something as fundamental and critical as whether or not a organ that someone has willingly uh allowed to be harvested will go and save a life. And, you know, the point that you put on the probability of an organ being damaged or being lost uh in transit, I think is is newly has new relevance in a moment where, you know, we’re thinking about airlines right now and the challenge of flying or losing your luggage. And people have all had that experience of losing a piece of luggage. Now, imagine that piece of luggage isn’t just a couple of shirts and pants uh and a shaver or two. It’s it’s it’s a heart. And the difference between whether or not that person who’s waiting for one will get one or not. Um. And, you know, you then maximize and you think about the collective system that is that that creates this the sort of mind boggling, um mind boggling level of incompetence uh that we’ve allowed to persist. I guess, you know, we talked about OPOs and the consolidation that could happen if they were to lose their license. But UNOS, there’s only one of them. So how do you hold a singular organization with such a critical function accountable um when there really is no other organization like it? 

 

Greg Segal: Uh. So the one place I’ll push back is I don’t know that there aren’t other organizations like it. Uh. You know, if you think about what UNOS does, there’s a bunch of discrete functions which I guess are related thematically under the banner of it’s organ transplant. But there’s logistics and shipping organs, there’s, uh you know, technology, there’s oversight, there’s policy making. If you break this up in discrete functions, you know, I uh which I was, I think one of the most animating recommendations that’s so far come out of the Senate Finance Committee. I think discrete, you know, biddable uh discrete contracts. Uh. So many organizations uh would be better than UNOS at any of the individual functions. When you start to say does somebody want every one of these functions? You start to limit the pool a little bit. You know, I think if you ask any, you know, health tech organization, uh would they be better than UNOS at the IT component? And do they want it? I think you’d probably have a lot of bidders. If you start to say, do you also want all these other ancillary unrelated uh functions other than it’s you know, thematically transplant, that’s where you limit the pool. But one of the fundamental things from the administration, from Finance Committee, is you got to separate this contract and bid it out competitively. 

 

Dr. Abdul El-Sayed: That makes a lot of sense. So you could imagine a world where FedEx is the uh is the logistical shipper. Right. And they’d probably do a much better job than than UNOS does they do this every day, all day. Um. I want to I want to zoom in to a couple of issues here before we get to the ultimate conversation about the um Senate Finance Committee hearings and where we head from here. You talked a bit about the implications of of of this system for health inequities. You know, we do know that the risk of organ rejection goes up when you’re talking about cross ethnic or cross-racial uh organ transplant, which then suggests that you really want donors um who share as much as possible. And that’s why, you know, you can get a kidney donated, for example, from a living family member. That’s always the best approach. But the implications of of logistical failure is really quite profound when you think about smaller communities um for whom the chances of getting a donor and uh and matching an organ is so limited. Can you walk us through how communities of color have uh have taken up this mantle of have advocated around this issue and where the conversation is there? 

 

Greg Segal: Yeah. So, uh you know, there have, of course, been some terrific patient advocates and we’ve been talking about the Senate Finance Committee. There was also last year, the House Oversight Committee uh did an investigation uh or still doing an investigation. I last fall uh May did a hearing into OPOs and there were two uh incredible pertinent to this conversation, uh women of color uh who were in need of kidney transplants that were uh self advocating. I think what’s been really encouraging in the last couple of years has seen this uh seeing this go from not just patients, the word I used was self advocating, but to listen to see congressional leaders uh and other equity leaders really take up the mantle and start to advocate for them. So, you know, there’s been um leaders in the Congressional Black Caucus, uh Karen Bass, uh or I should say Congresswoman uh Karen Bass, when she was chair of the Congressional Black Caucus, was fantastic on this issue. Uh. Ayanna Pressley, Cori Bush. Uh Hank Johnson. There have been some really great uh CBC leaders who’ve been advocating for this. And, you know, one of the most, you know, vocal um leaders on and also from an [?] perspective has been Ben Jealous, who was a past president of the NAACP. But it’s been really great uh seeing this transition or I should say grow from not, you know, patients self advocating. I know that it’s great. What an unfair burden to put on to patient to also, in addition to managing their own care, have to self advocate for policy reform. And it’s been really great to see uh congressional and other equity leaders take up the fight for them. 

 

Dr. Abdul El-Sayed: And now to uh the question at hand in the Senate Finance Committee. Can you walk us through where the conversation is right now and uh what you’re hoping to see come out of the Senate Finance Committee hearings? 

 

Greg Segal: Yes. So, you know, they did a hearing in on August 3rd, a bipartisan hearing, and I’ll say Chairman Ron Wyden and ended the hearing with, you know, some version of, you know, letting everyone know investigation is absolutely uh just gaining steam from here. And they’re going to start looking at the government agencies that have uh been overseeing this for uh some number of years. And I think what’s really important is going from investigations, of course, as they do find things, uh then they inform recommendations. The question then is, do they get implemented? Uh. And, you know, it’s up to the Biden administration to enforce not just OPO transparency and accountability, uh but the contract that UNOS uh holds. It’s called the Organ Procurement Transplantation Network contract, the OPTN contract. Uh. That’s up uh for bidding next year. Uh. It’s really important that the Biden administration follow through on the recommendations that have come from come from the Senate Finance investigation uh and put out a competitive cycle uh for that for that contract. And just, you know, to really underscore, I know we’ve talked about this, but what the state of play is like, you know, I had mentioned the House oversight last year, uh hearing there was a fantastic whistleblower, an OPO CEO. And his line, just so everyone understands the status quo, his line is that OPOs and government contractors are getting blank checks and participation trophies while uh patients are getting death sentences. It’s just it’s truly, truly dire. Uh. And, you know, it’s long overdue uh that we, you know, government really lean in and put patients first. 

 

Dr. Abdul El-Sayed: Greg, I really appreciate you coming on to our show to educate us about the uh organ transplantation system, the inefficiencies and ineffectiveness of that system. And in the effort to address it and of course, your work uh at the front lines of advocacy um to make sure that that happens. Our guest today was Greg Segal. He is the co-founder of Organize. Greg, where can folks go to learn more about your work to get involved? 

 

Greg Segal: Organize.org uh is our website and I hope to see a lot of traffic. 

 

Dr. Abdul El-Sayed: All right. Fantastic. Greg, thank you so much uh for your time. We really appreciate it. 

 

Greg Segal: Thanks Abdul. 

 

Dr. Abdul El-Sayed, narrating: As usual. Here’s what I’m watching right now. Take a listen to what Dr. Anthony Fauci had to say about the future of COVID 19 vaccines. 

 

[clip of Dr. Anthony Fauci] It is becoming increasingly clear that looking forward with the COVID 19 pandemic in the absence of a dramatically different variant. We likely are moving towards a path with a vaccination cadence similar to that of the annual influenza vaccine with annual updated COVID 19 shots matched to the currently circulating strains for most of the population. 

 

Dr. Abdul El-Sayed, narrating: As many of us had predicted, COVID vaccines will become annual boosters that we take for an updated bump of immunity in the highest risk season. Scientists will update the boosters like they do the flu vaccine based on the most common variants in that season. Don’t get me wrong, we’re not yet out of the pandemic era of COVID 19, but we will be. And this is what that looks like. Early in the pandemic, Republicans advocating against COVID mitigation compared COVID to the flu to minimize it. But COVID was then plugging up our hospitals, killing thousands every day, and we had no effective treatments or vaccines. It’s killed over a million Americans since. But as we approach a potential end of the pandemic, the highest probability and gain for COVID will be that it probably looks a lot like the seasonal flu. Which might I remind you, takes tens of thousands of lives every single year, and many of those deaths are preventable deaths. And that’s because so few people get their flu vaccines. And on that note, it’s never possible to know anything for certain, but it’s highly likely that this will be a pretty tough flu year. After all, most of the restrictions in place over the past few years that protected us from COVID were also protecting us from the flu. So consider this your annual reminder to get the flu vaccine alongside your forthcoming bivalent COVID booster. Despite the fact that the administration is rolling out a new booster. Congress has yet to fund the resources we’ll need for the fall. It’s not just funding for the vaccines. It’s funding for testing, for treatments, for hospitals. It’s funding that the administration has been asking for all summer. Last week, the administration renewed the request for $74 billion dollars from Congress. Though given the composition of the current Senate, it’s unlikely that it’ll get funded. Absent congressional funding the administration is hedging by trying to force the funding of new COVID vaccines onto the private sector through health insurance companies, in effect, asking them to pay for beneficiaries COVID vaccines, testing and treatments, where, of course, the federal government had been paying for this. But of course, the problem here is, well, not everyone in America is insured, which is, of course, another reminder that we really need Medicare for All. Finally, a few months ago, I talked to Lauren Etter, the author of The Devil’s Playbook, about the ways that Juul laboratories went from a smoking cessation tool to a whole generation of teens introduction to Nicotine addiction. To recap, after a round of venture capital funding and investment from Philip Morris, yes, that Philip Morris, in pursuit of profit, Juul looked for new customers beyond those looking to just quit smoking. Turning to influencer marketing and flavoring their pods, they got millions of teens hooked on their product with 28% of teens vaping by 2019. Well, this week, Juul is finally facing the consequences. They just reached a settlement with 34 states and territories that will have them pay $438.5 million for their malfeasance. This after the FDA banned them from the American market, though that ruling has been challenged in court. That’s it for today. On your way out. Don’t forget to rate and review the show. It really goes a long way. And if you love the show and want to rep us, help drop by the Crooked store for some America Dissected merch. We’ve got our logo mugs and T-shirts. Our science always wins sweatshirts and dad caps are available on sale. [music break] America Dissected is a product of Crooked Media. Our producer is Austin Fisher. Our associate producer is Tara Terpstra. Veronica Simonetti mixes and masters the show. Production support from Ari Schwartz and Ines Maza. The theme song is by Taka Yasuzawa and Alex Sugiura. Our executive producers are Sarah Geismer, Sandy Girard, Michael Martinez and me, Dr. Abdul El-Sayed. Your host. Thanks for listening.