I trained in and work adjacent to the transplant and I think Ben tackled a tough task here in trying to introduce the complexities and shortcomings of the transplant system. I've been in the rooms where academics from around the country debate and argue about it and it can get very heated. Change to this system often involves winners and losers - and thus people using whatever influence on it, making improvements even harder at times.
The main critique I have is this: There are a lot of areas where if we could simply get the worst performing groups to perform at the highest level, there would be amazing improvement in the system. But it would be nice if wonkery moved past this to good faith efforts at trying to understand why the lower performing groups are lower performing.
The US transplant system does more transplants than anywhere else in the world, and almost leads in per capita transplants, despite a much larger and less dense geography, more complex health care system, and larger disparity in resources. While you can find examples in this (and any) system of a few bad actors, most of the people working for these organizations truly care and have vested interests in doing more transplants. It can and needs to be improved, but we should recognize that it's already actually good.
It's hard to find one-size-fits-all solutions to the highly variable densities, resources, and disparity levels across the country. I think technology will help - new organ perfusion techniques means organs can last longer and travel farther. But I think one systemic change that would help is to place more emphasis on the total outcomes of the people referred/evaluated in a system (number transplanted, survival, etc) instead of just the outcomes of the people who actually received transplant. With severe penalties for those who do not have good post-transplant outcomes, there's an incentive to take an overly selective approach to transplant despite the financial incentive to do more transplants.
As someone who has to sometimes triage OR resources after hours, I've definitely noticed perfusion pumps have reduced the 3am conflicts. I agree with using list-level outcomes, though I could see some networks trying to cherry pick patients to list. In California, the two SoCal and two NorCal OPOs are close enough geographically to be quasi-competitors and have at least heard rumor of shenanigans.
I have worked at a bad center before. They were being highly non-selective because they weren't doing enough. And then they almost got suspended for having bad outcomes because they were bad at surgery and taking on too many marginal cases (partially because a better center was also cherry picking). They eventually found someone competent to turn things around, but it's pretty ugly seeing evidence that there just might not be enough quality peformers out there to meet demand.
Thanks for this piece, Ben. My younger sister (mother of three) was diagnosed with Type 1 diabetes after her first pregnancy and lived with it for decades (including many years of dialysis) before finally obtaining a pancreas-kidney transplant 3 years ago when she was on the verge of total kidney failure. The years of waiting, uncertainty and lack of "supply" pre-transplant are painful and depressing ...
But the successful transplant has been miraculous for her, for her children and for the rest of the family. I would support any and all measures on your list that could help bring this result to thousands more patients every year.
Wonderful article! Thanks, Ben, for writing this. My mother-in-law had a liver and kidney transplant five years ago. We are very thankful that she was able to work her way through the transplant process, but it wasn’t very easy. There are so many other obstacles than the inefficiencies in procurement and matching process. If those were magically fixed and the supply of organs increased, there would be challenges with the infrastructure of completing additional procedures. We don’t have enough facilities, surgeons, and doctors. Many on the transplant list are very sick and have conditions that would risk the ability to successfully recover from the procedure. And then there is money. A transplant is extremely expensive and increasing the volume of them would drive up cost to the insurance system, and many on the transplant list are on Medicare or Medicaid. Unfortunately, the reality is that these procurement inefficiencies are somewhat of a feature of the current transplant process.
I have a transplant surgeon friend who told me that she spends at least a week a month traveling to procure organs herself, and that this is common for transplant surgeons. I don’t know how this interacts with OPOs, but the reason she gave me was “I’m 10x more likely to successfully procure a donor organ than the services that provide them to hospitals, so when we find a donor match ourselves, we jump on a plane”.
I've heard that from transplant surgeons too. There's some OPO guy who supposedly always cuts the kidney vessels too short or something. But that's what surgeons say about med student sutures so I have no idea how much merit their complaint has.
Why are they waiting until 2026? Why don't they just decertify the bad OPOs now? Giving them the opportunity to improve is something you might indulge if someone deserves it and you owe it to them, but OPOs are supposed to serve the public not the other way round - plus it sounds like the competent OPOs are ready to expand.
Because that's when the contract period for OPOs is over. I think there'd be some legal battle if they pulled bad OPOs before the contract. Also CMS is worried there isn't enough infrastructure yet to cover the regional territory of the decertified OPOs.
MY is a high-profile dissenter from progressive orthodoxy who cannot be easily "invalidated" by calling him a white supremacist or a tool of the Christian Right. He must, therefore, be destroyed before anyone listens to him and judges him to be reasonable.
In unrelated news, what respect I had for Ross Douthat of the NYT just went poof in the wake of his new opinion piece on how it's important to remember that Both Biden and Trump Are Bad, Ackshully. /barf, vomit
Fun fact I learned when i started working in an ICU. Most organs aren't eligible for transplant. The patient has to be on a ventilator, and presumably kept alive only by our machines. We take them down to a room next to the OT turn of the ventilator, and see if they die within a few hours. Those are pretty much the only people we can harvest from. If they don't did on their own in the set time we can't take them, if they die of really any other causes we can't use anything (other than cornea, some skin and such).
Those sound more like DCDs and not brain death (DBD) donors. Donors with certified brain death just remain on the vent with various infusions until time to procure. They are transported to OR with RT and all their infusions. They may be removed from the vent for a few minutes for an apnea test to initially certify brain death but I think that's it.
Can I just make a plug for more people becoming living organ donors? It really is not that big of a deal for the donor at all, and there are structures and safeguards in place to address the questions of “How do ai take this time off work?” and “What if my family member needs it some day
As a nondirected donor, I know that my
family members would go to the top of the list to get the best possible match available if they ever need a transplant, (and so would I), which is actually better assurance than I could have given them by just holding onto my extra kidney
> I know that my family members would go to the top of the list to get the best possible match available if they ever need a transplant, (and so would I),
Wow, thanks for telling me that, I would feel pretty upset if they follow through with that change, given that this promise is made to every NDD, and certainly plays a role in our willingness to move forward with confidence.
Lung transplant is very difficult. Very few centers can do it (might be fewer than heart) so it's easier to manage. I don't think the finall continuous distribution algorithm for kidney will end up undoing the promise made to living donors. They'll probably end up akin to second in line. The real question is whether they'll get an organ before going on dialysis, and that's a harder one to answer.
I mean, only if you need one, but yes. According to another poster, that might be changing, but at the time I donated, I was able to put five family members on a special list. If one of those people or myself needs a kidney someday, they are prioritized.
As someone who will be on the transplant list in the future, I don't even know where to start to advocate for such changes. This kinda feels like one of those things that matters a lot but will never make it to the desk of anyone who will do anything.
The National Kidney Registry (donation chain) has become a very effective complimentary piece of the puzzle. It only allocates live donations but seems to be doing pretty well at sidestepping the issues around paying donors.
Switching to a presumed consent (opt-out) from an explicit consent system would probably help the diseased donor supply some, evidence from other countries shows it's not a panacea. We have also seen extended criteria donors, where older patients can get lower-quality organs because an organ doesn't have to last as long due to life expectancy.
I don't want people to get the impression that there's no innovation happening. It's just a really tough and complex issue. There's still some low-hanging fruit but the bulk of the problem is going to be a slog.
I trained in and work adjacent to the transplant and I think Ben tackled a tough task here in trying to introduce the complexities and shortcomings of the transplant system. I've been in the rooms where academics from around the country debate and argue about it and it can get very heated. Change to this system often involves winners and losers - and thus people using whatever influence on it, making improvements even harder at times.
The main critique I have is this: There are a lot of areas where if we could simply get the worst performing groups to perform at the highest level, there would be amazing improvement in the system. But it would be nice if wonkery moved past this to good faith efforts at trying to understand why the lower performing groups are lower performing.
The US transplant system does more transplants than anywhere else in the world, and almost leads in per capita transplants, despite a much larger and less dense geography, more complex health care system, and larger disparity in resources. While you can find examples in this (and any) system of a few bad actors, most of the people working for these organizations truly care and have vested interests in doing more transplants. It can and needs to be improved, but we should recognize that it's already actually good.
It's hard to find one-size-fits-all solutions to the highly variable densities, resources, and disparity levels across the country. I think technology will help - new organ perfusion techniques means organs can last longer and travel farther. But I think one systemic change that would help is to place more emphasis on the total outcomes of the people referred/evaluated in a system (number transplanted, survival, etc) instead of just the outcomes of the people who actually received transplant. With severe penalties for those who do not have good post-transplant outcomes, there's an incentive to take an overly selective approach to transplant despite the financial incentive to do more transplants.
As someone who has to sometimes triage OR resources after hours, I've definitely noticed perfusion pumps have reduced the 3am conflicts. I agree with using list-level outcomes, though I could see some networks trying to cherry pick patients to list. In California, the two SoCal and two NorCal OPOs are close enough geographically to be quasi-competitors and have at least heard rumor of shenanigans.
I have worked at a bad center before. They were being highly non-selective because they weren't doing enough. And then they almost got suspended for having bad outcomes because they were bad at surgery and taking on too many marginal cases (partially because a better center was also cherry picking). They eventually found someone competent to turn things around, but it's pretty ugly seeing evidence that there just might not be enough quality peformers out there to meet demand.
Loved this post! This level of research/attention to policy details is what makes Slow Boring special
Thanks for this piece, Ben. My younger sister (mother of three) was diagnosed with Type 1 diabetes after her first pregnancy and lived with it for decades (including many years of dialysis) before finally obtaining a pancreas-kidney transplant 3 years ago when she was on the verge of total kidney failure. The years of waiting, uncertainty and lack of "supply" pre-transplant are painful and depressing ...
But the successful transplant has been miraculous for her, for her children and for the rest of the family. I would support any and all measures on your list that could help bring this result to thousands more patients every year.
Really interesting post, Ben. A welcome bit of education this Saturday morning.
Close the pancreas loophole, dammit!
"Close the pancreas loophole...."
Everybody knows the Islets of Langerhans are just off-shore tax-havens.
Is *that* why weird financiers sometimes get to control the price of insulin?!
Today I learned that "insulin" got its name from the Islets. I wonder why that had never occurred to me before.
I had no idea but of course it must be right!
Wonderful article! Thanks, Ben, for writing this. My mother-in-law had a liver and kidney transplant five years ago. We are very thankful that she was able to work her way through the transplant process, but it wasn’t very easy. There are so many other obstacles than the inefficiencies in procurement and matching process. If those were magically fixed and the supply of organs increased, there would be challenges with the infrastructure of completing additional procedures. We don’t have enough facilities, surgeons, and doctors. Many on the transplant list are very sick and have conditions that would risk the ability to successfully recover from the procedure. And then there is money. A transplant is extremely expensive and increasing the volume of them would drive up cost to the insurance system, and many on the transplant list are on Medicare or Medicaid. Unfortunately, the reality is that these procurement inefficiencies are somewhat of a feature of the current transplant process.
Wanted to share this profile of work: https://nymag.com/intelligencer/article/blueprint-polling-reid-hoffman-biden-trump.html
I have a transplant surgeon friend who told me that she spends at least a week a month traveling to procure organs herself, and that this is common for transplant surgeons. I don’t know how this interacts with OPOs, but the reason she gave me was “I’m 10x more likely to successfully procure a donor organ than the services that provide them to hospitals, so when we find a donor match ourselves, we jump on a plane”.
I've heard that from transplant surgeons too. There's some OPO guy who supposedly always cuts the kidney vessels too short or something. But that's what surgeons say about med student sutures so I have no idea how much merit their complaint has.
Why are they waiting until 2026? Why don't they just decertify the bad OPOs now? Giving them the opportunity to improve is something you might indulge if someone deserves it and you owe it to them, but OPOs are supposed to serve the public not the other way round - plus it sounds like the competent OPOs are ready to expand.
Because that's when the contract period for OPOs is over. I think there'd be some legal battle if they pulled bad OPOs before the contract. Also CMS is worried there isn't enough infrastructure yet to cover the regional territory of the decertified OPOs.
Exactly, immediate decertification would kick a bunch of patients off a transplant list. Even bad OPOs are still doing more than zero.
Why does FDB have such an enormous crush on MY? If Matt had pigtails Freddie would pull them.
MY is a high-profile dissenter from progressive orthodoxy who cannot be easily "invalidated" by calling him a white supremacist or a tool of the Christian Right. He must, therefore, be destroyed before anyone listens to him and judges him to be reasonable.
In unrelated news, what respect I had for Ross Douthat of the NYT just went poof in the wake of his new opinion piece on how it's important to remember that Both Biden and Trump Are Bad, Ackshully. /barf, vomit
Fun fact I learned when i started working in an ICU. Most organs aren't eligible for transplant. The patient has to be on a ventilator, and presumably kept alive only by our machines. We take them down to a room next to the OT turn of the ventilator, and see if they die within a few hours. Those are pretty much the only people we can harvest from. If they don't did on their own in the set time we can't take them, if they die of really any other causes we can't use anything (other than cornea, some skin and such).
Those sound more like DCDs and not brain death (DBD) donors. Donors with certified brain death just remain on the vent with various infusions until time to procure. They are transported to OR with RT and all their infusions. They may be removed from the vent for a few minutes for an apnea test to initially certify brain death but I think that's it.
Can I just make a plug for more people becoming living organ donors? It really is not that big of a deal for the donor at all, and there are structures and safeguards in place to address the questions of “How do ai take this time off work?” and “What if my family member needs it some day
As a nondirected donor, I know that my
family members would go to the top of the list to get the best possible match available if they ever need a transplant, (and so would I), which is actually better assurance than I could have given them by just holding onto my extra kidney
until someone maybe needed it.
> I know that my family members would go to the top of the list to get the best possible match available if they ever need a transplant, (and so would I),
It seems that status is at risk: https://www.statnews.com/2023/03/22/living-organ-donors-priority-status-transplant-waiting-list/
They are still early in the process for kidney and pancreas, but it's already been implemented for lung (which is very rare for living donors): https://optn.transplant.hrsa.gov/policies-bylaws/a-closer-look/continuous-distribution/
Wow, thanks for telling me that, I would feel pretty upset if they follow through with that change, given that this promise is made to every NDD, and certainly plays a role in our willingness to move forward with confidence.
Lung transplant is very difficult. Very few centers can do it (might be fewer than heart) so it's easier to manage. I don't think the finall continuous distribution algorithm for kidney will end up undoing the promise made to living donors. They'll probably end up akin to second in line. The real question is whether they'll get an organ before going on dialysis, and that's a harder one to answer.
I mean, only if you need one, but yes. According to another poster, that might be changing, but at the time I donated, I was able to put five family members on a special list. If one of those people or myself needs a kidney someday, they are prioritized.
As someone who will be on the transplant list in the future, I don't even know where to start to advocate for such changes. This kinda feels like one of those things that matters a lot but will never make it to the desk of anyone who will do anything.
I'm surprised you don't mention anything about presumed consent.
It’s a big issue! But yeah it’s a notable part.
The National Kidney Registry (donation chain) has become a very effective complimentary piece of the puzzle. It only allocates live donations but seems to be doing pretty well at sidestepping the issues around paying donors.
Switching to a presumed consent (opt-out) from an explicit consent system would probably help the diseased donor supply some, evidence from other countries shows it's not a panacea. We have also seen extended criteria donors, where older patients can get lower-quality organs because an organ doesn't have to last as long due to life expectancy.
I don't want people to get the impression that there's no innovation happening. It's just a really tough and complex issue. There's still some low-hanging fruit but the bulk of the problem is going to be a slog.