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.
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.
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.
I had a heart transplant five years ago. I'm in Minnesota and I go to the Mayo Clinic in Rochester -- it's amazing -- but I was on the transplant list for four years and I was only able to get a transplant by flying to the Scottsdale Mayo in AZ, where my mom still lives, and having the transplant over the summer when I don't teach. Four years is a long time to wait -- I had an LVAD those four years -- but the way they divide the country into regions for transplants was causing the delay: the Midwest doesn't have the population that California, Arizona, New Mexico has. When in Scottsdale, I waited a week for a heart. I understand that the regions are necessary because you have to fly the heart to the patient in time, but if you don't have the money to travel for a transplant or the resources to help you, that seems like a broken system.
I'm glad you got your transplant! I remember a time when using LVAD as long-term bridge to transplant wasn't viable. The large geography of the US really does matter. There is improving technology in machine perfusion to stretch organ viability. For hearts, the first using this tech was at Mayo Scottsdale in 2022 so hopefully the technical barrier is finally coming down. For hearts, 6 hours was about the max but this new tech can double that. It also could open the door for donors after cardiac death (i.e., preserving a naturally-stopped heart) which would increase organ supply within all regions.
Glad you're highlighting the organ gap and profound problems in the organ procurement "industry." Another issue is still person power. It takes special skills to convince families at the apex of grief to agree to donation (when there isn't a clear medical proxy etc). This 1988 profile I wrote about a former homicide detective who became an organ-procurement specialist in Brooklyn gives a pretty vivid look at the challenges: https://revkin.substack.com/p/organ-hunter
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.
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.
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),
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.
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.
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.
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.
The core problem is OPOs are not compensated on the right metric. Instead of cost plus they should be paid per successfully transferred organ.
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.
Loved this post! This level of research/attention to policy details is what makes Slow Boring special
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.
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.
I had a heart transplant five years ago. I'm in Minnesota and I go to the Mayo Clinic in Rochester -- it's amazing -- but I was on the transplant list for four years and I was only able to get a transplant by flying to the Scottsdale Mayo in AZ, where my mom still lives, and having the transplant over the summer when I don't teach. Four years is a long time to wait -- I had an LVAD those four years -- but the way they divide the country into regions for transplants was causing the delay: the Midwest doesn't have the population that California, Arizona, New Mexico has. When in Scottsdale, I waited a week for a heart. I understand that the regions are necessary because you have to fly the heart to the patient in time, but if you don't have the money to travel for a transplant or the resources to help you, that seems like a broken system.
I'm glad you got your transplant! I remember a time when using LVAD as long-term bridge to transplant wasn't viable. The large geography of the US really does matter. There is improving technology in machine perfusion to stretch organ viability. For hearts, the first using this tech was at Mayo Scottsdale in 2022 so hopefully the technical barrier is finally coming down. For hearts, 6 hours was about the max but this new tech can double that. It also could open the door for donors after cardiac death (i.e., preserving a naturally-stopped heart) which would increase organ supply within all regions.
Glad you're highlighting the organ gap and profound problems in the organ procurement "industry." Another issue is still person power. It takes special skills to convince families at the apex of grief to agree to donation (when there isn't a clear medical proxy etc). This 1988 profile I wrote about a former homicide detective who became an organ-procurement specialist in Brooklyn gives a pretty vivid look at the challenges: https://revkin.substack.com/p/organ-hunter
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.
Ben: Drug market, sub-market,
Sometimes I wonder why I ever got in.
Blood market, love market,
Sometimes I wonder why they need me at all...
Zydrate comes in a little glass vial.
Comment section: A little glass vial?
Ben: A little glass vial!
https://www.youtube.com/watch?v=qd7HXt6a78w (Sorry, I couldn't help myself)
It is beyond ridiculous that everyone profits from organ transplants except the person donating the organ.
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.
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/
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.
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.
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.
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.
Really interesting post, Ben. A welcome bit of education this Saturday morning.
Fantastic, thank you for focusing on the mechanism of realizing improvement!
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.