Kirdar Ansari 23 September,2021 01:29 AM IST
every year, more than 100,000 people in the United States wait for an organ donation. More than a dozen people will die each day still waiting. Such is the brutal math and the necessary optimism required to work in the organ procurement world.
For the past several decades, a private network of now 57 organ procurement organizations (OPOs) have sprouted up, all broadly affiliated with UNOS, the United Network for Organ Sharing, a non-profit whose goal is to match donated organs with potential recipients.
Itâ€™s a unique facet of the medical world, and also one that is surprisingly more like a tech startup than might first meet the eye. From early beta products to a much more professional and modern tech stack, the network and its affiliates have strived to improve the speed and reliability of the organ transplantation process.
I wanted to look at some of the organizationâ€™s most recent initiatives, including improved logistics and planning infrastructure, while also exploring some of the more science fiction projects: xenotransplantation, drone-delivery systems, and organ viability platforms. So I interviewed several folks at both UNOS and two OPOs to hear whatâ€™s cutting edge, and what remains a dream for the future.
Joel Newman, the senior communications strategist at UNOS, where he has worked for nearly three decades, said that â€œtransplantation has always been unique in the sense that everybodyâ€™s got to collaborate and communicate in real-time â€” not always with people they know.â€ Perhaps surprisingly given the life-and-death stakes of organ transplantation, â€œa lot of those arrangements were shockingly informal.â€
They were so informal in the early years, that matching donors to recipients was operated out of a voicemail inbox.
Howard Nathan, the current president of organ procurement organization Gift of Life (and the longest-serving president of any OPO, having taken the role in 1984), said that one man, Don Denny, ran much of the collaboration infrastructure in the early years as organ transplantation became more viable in the 1980s.
Denny, who moved to Pittsburgh in 1977, created his status system for patients from one to four, with one indicating the most urgent organ needs (the rating system is the opposite today). â€œHeâ€™d record every day this messageâ€ on his voicemail, Nathan described, â€œand you listened to this recording.â€ From there, â€œyouâ€™d look at your donor in the ICU where you had permission from the family, and if itâ€™s a match, youâ€™d call.â€ Nathan says that Denny coordinated 2,700 transplants over 4.5 years, all from his recorded voicemails and phone calls.
UNOS was formed in 1977 and eventually incorporated in 1984. By 1986, it had developed more computerized systems to handle the organ matching process, using the latest communications technology: faxes. Rick Hasz, who is today vice president of clinical services at Gift of Life and will succeed Nathan as president in 2022, said that the technology wasnâ€™t all that reliable. â€œWhen I started we had thermal paper faxes,â€ he said. â€œIf you didnâ€™t allocate quickly, then that thermal paper dissolved and youâ€™d lose the list.â€
Unsurprisingly, UNOS has continued to evolve its technology over time with the needs of organ donors, donor hospitals, organ recipients, and transplantation centers. It relies on a web-based application and even has a mobile app now.
Amy Putnam, director of IT customer advocacy at UNOS, said that one big breakthrough came with a mobile app to reduce errors. â€œBack in 2012, we worked on a change called TransNet, and TransNet is a mobile application, itâ€™s built on iOS and Android, that allows the OPOs to electronically package and label organs,â€ she said. â€œAs you can imagine at three in the morning, most peopleâ€™s handwriting is not very legible, and you end up with a lot of data entry errors, and thatâ€™s where TransNet helped.â€
The real gain of building the system though was being able to work collaboratively with all of the organizationâ€™s OPO affiliates and refine processes based on feedback from all of its users.
Calls and communications are key for coordinating transplantations. Organ donations are typically sudden, can happen almost anywhere, and OPOs have just hours to get the organ from the donor hospital into a recipient patient at a transplant center. Not only that, but which patient waiting on a list has to be determined with extreme speed, with potentially dozens of transplant centers interested in a particular organ. Processing all those requests, in real-time, is the huge emphasis of UNOSâ€™ modern tech stack.
Newman explained some of the intricate work that is involved. â€œKidneys can often be transplanted within about 24 hours. Once they are recovered, obviously shorter is better and probably most of them go in 12 hours or less,â€ he said. â€œWhen youâ€™re looking at livers and pancreas, itâ€™s probably ideally less than eight hours. Hearts and lungs go down to about four to six hours.â€ The time that an organ is viable after losing blood supply is known as the ischemic time.
Over the past few years, UNOS has developed much more elaborate tracking systems to understand where organs are. Julie Kemink, a chief clinical officer at LifeSource, an OPO, said that â€œwhat you see now is similar to what you might see with an Amazon packageâ€¦ you see that it is shippedâ€¦ but you donâ€™t necessarily knowâ€ where precisely it is, she said.
However, new updates to UNOSâ€™ infrastructure are starting to deliver real-time location information for every organ. â€œNow itâ€™s more like an Uber â€” you can see where it is physically at all times,â€ she said.
Adding GPS coordinates for each organ sounds like a simple proposition, but required immense coordination. Since donor hospitals, organ procurement organizations, and transplantation centers are all different entities, defining a universal standard for the location was challenging. Furthermore, since organs tend to arrive quite randomly, having the right equipment and trackers on hand in every part of the country proved its hurdle.
Now with better logistics information, transplant surgeons can get real-time updates on organ arrival times. If an organ is traveling by plane in the cargo hold and the plane arrives at an airport early, doctors can be notified that itâ€™s running ahead of schedule and prep a patient earlier. Similarly, if vehicle traffic is delaying an organâ€™s arrival, transplant centers can push back a patientâ€™s pre-op procedures.
With more data available, UNOS is now exploring a â€œtravel appâ€ or what Putnam dubbed a kind of â€œExpedia for organs.â€ She said, â€œIt allows the OPOs or transplant hospitals to enter in some specific information about the donor hospital [and] the recipient center, and it will give them options, it will show them flight options, it will show them travel time if theyâ€™re going to travel by car.â€ She said the app, which is entering a pilot phase, could eventually allow organs to be fully ticketed right in the app experience.
That infrastructure is critical because UNOS has been updating how it defines distance for organs. For decades, the organization and its OPO affiliates used a regional boundary system â€” organs in, say, Minnesota would be given first to recipients in Minnesota, and then if none could be found, they would be offered to nearby regions and so on.
That was a simple system, but one that could be taken advantage of, particularly by the wealthy. More than a decade ago, a controversy erupted when Steve Jobs received an organ transplant in Tennessee, despite not living in the state. He did so through a process then known as â€œmultiple listingâ€ â€” for those with the means, a recipient could register on as many regional organ donor waiting lists as possible. If a match was found anywhere nationwide, the recipient could quickly charter a private plane to wherever the organ was and essentially cut the time they waited on a list.
Now, UNOS uses a distance algorithm thatâ€™s based on the actual radius, and not just arbitrary regional boundaries. That still leads to some incongruities. Kemink of LifeSource, which is the OPO serving the Minneapolis regional area, said that â€œbeing in Minnesota â€” we are in proximity to both coastsâ€¦ so we do have opportunities to place organs throughout the country.â€ Thatâ€™s unlike the options available for the coasts. â€œIn California, getting a heart from New York is impossible,â€ she noted.
In addition to better logistics, UNOS has optimized its platform for integration. â€œAs you could imagine, most people hate having multiple usernames and passwords, they hate multiple solutions. So the biggest thing was integration, give us integration,â€ Putnam said about recent upgrades.
Part of that integration story was adding more ways to upload patient data and imagery files. Now, doctors can â€œupload and see the coronary angiography to see that [a heart] is the right match for a recipient,â€ Kemink said. That improves decision times on offers and ultimately increases the viability of an organ transplant.
As organ transplantations have become more frequent â€” 39,000 were conducted in the United States according to government data â€” there are increasingly large datasets available to finely tune the networkâ€™s allocation strategy and ultimately improve the number of organs that are successfully transplanted.
â€œRight now, weâ€™re working on a project to introduce predictive analytics into the organ offer process, and looking at some analytics related to what is the probability of survival if they were to accept this organ,â€ Putnam said. If they decline an organ, then â€œwhatâ€™s the probability and the timeframe until they will get a similar or better organ?â€ UNOS is currently working on a pilot to get feedback from its clients on these changes, and also ensure that the explainability of the algorithm is extremely clear given the highly sensitive nature of organ donations.
The network has also been piloting since last year a feature it dubs â€œoffer filters,â€ which transplant centers can upload to the networkâ€™s platform to automate more decisions around potential organ matches. Putnam said, â€œWhat we did is we looked at kidney acceptance data, historically, and said, â€˜Are there offers that we know thereâ€™s no way a transplant center would ever accept?â€™â€
Newman of UNOS said that â€œthere have always been some screening criteria that centers could put in, but this allows a little bit more filtering of, â€˜You know itâ€™s not like I would never accept a donor older than 70 years old, but if itâ€™s gonna be a donor older than 70 years old and itâ€™s gonna take more than six hours to get here, Iâ€™m not interested.â€ UNOS expects a national rollout sometime later this year.
As critically important as the organ procurement process is, much of the gains in the past decade have ultimately been a function of better IT applications and implementations. The big question a lot of startup founders and venture capitalists are interested in is the viability of â€œmoonshotâ€ ideas that can radically change organ availability for patients in need.
One project, using drones to deliver organs, has already been trialed. Nathan of Gift of Life said that â€œright now, the drone thing has been done â€” theyâ€™ve done one caseâ€ and also noted that â€œthere is another group in Maryland that is experimenting with it too.â€ Heâ€™s somewhat skeptical about the technology given the distances organs have to travel (potentially hundreds of miles) and the potential for damage to the organ itself. â€œYou donâ€™t want to put the organ at risk,â€ he said.
Then there are a set of technologies including cryogenics and warm profusion which are designed to increase the ischemic time (or eliminate it), giving organ procurement organizations more time to get organs to the patients most in need of them. Several devices and systems are running through FDA trials now, and are expected to arrive and be put into practice over the next decade.
Kemink of LifeSource pointed to blood-type matching and age as two criteria that could improve organ distribution with better organ viability technologies. â€œAB blood type is the most uncommon blood type, so there arenâ€™t that many patients who are waiting for that blood type,â€ she said. At any given time, â€œthere might not be a recipient that fits,â€ and so cryogenics could keep the organ â€œon iceâ€ until the right patient shows up who needs it. Similarly, donated organs need to match the size required by the recipient. â€œYou canâ€™t take a heart from a 12-year-old and put it in a 70-year-old,â€ she said since the sizes wouldnâ€™t match the bodies. â€œWe could preserve it until the person that needs it is there â€¦ that would be another tremendous advancement.â€
There have also been advances in procuring organs from patients who die from circulatory death, in what is known as DCDs, or donations after circulatory death. Nathan said, â€œthere are 2.8 million people who die every year in this country, [and] only about 20,000 of those people are medically suitable to be an organ donor.â€ Thatâ€™s one reason there is a huge wait time for organs.
Hasz noted that advances for procuring organs in these contexts have increased the likelihood that viable organs could be found. â€œUp until the last couple of years, nothing changed: it was quite limited to liver and kidneys,â€ he said. But â€œin the past few years, the opportunity of helping more people with heart and lung transplantsâ€ arose, and â€œ200 hearts have been used.â€ Ultimately with these new technologies, â€œwe think it can expand the donor pool by 30% for DCD hearts.â€
Finally, we get to what is known as xenotransplantation, or moving organs from animals to humans. Such experiments have gone on for decades, and progress has been somewhat elusive. Hasz said, â€œ10-15 years is always what you hear about xenotransplantation.â€ That said, he notes that new technologies like CRISPR have allowed for more progress in space in recent years, potentially opening a pathway for animal organs to solve the shortage of human organs available.
For all the changes and new technologies though, the basic equation of organs in the United States remains the same: people need to check yes for lives to be saved. â€œThe biggest thing that we need is more people to say yes to donations,â€ Kemink said. â€œNobody gets a transplant unless people say yes to donation.â€ Today, roughly half of Americans are organ donors, and solving that isnâ€™t about technology so much as about reminding people of the power of life â€” and what they can offer others.