How to save 28,000 organs and $40 billion

7 critical gaps in the current organ donation system

Mar 10, 2024

Organ & Body Donations - John Oliver - South Florida Media — Last Week Tonight on HBO

Organ donation has come up in many conversations with friends in and around healthcare circles in recent months. For some, it was in reaction to John Oliver’s episode of Last Week Tonight that aired in early December. Others are still making sense of recent tailwinds from the passing of a bipartisan bill that aims to overhaul the organ transplant system by making it more transparent, competitive, and accountable.

And my favorite of all — donors and recipients who have reached out to share their personal stories, anecdotes, and hopes for the future.

Transplantation might just be one of the most exciting frontiers of kidney innovation, period. Last week I shared good news that we surpassed 150 companies we’re now tracking in the Kidneyverse, which includes 28 teams across life sciences, biotech, perfusion, storage, transport, logistics, surgery, and care coordination to name a few.

But for every bit of good news coming out of this space, reality pulls us back to why we’re here. 17 people die waiting for an organ transplant every single day. And in the time it takes you to read this article, 2 or 3 more will have been added to the waitlist.

Imagine you need an organ and manage to join the 109,000 people on the waiting list – which in itself can be a challenge. Once you’re over the hurdle of getting on the list, you have only a 50% chance of receiving the organ you need within the next 5 years.

My goal today is two-fold: (i) to highlight critical gaps we need solved as soon as possible; and (ii) to briefly outline the causes and potential solutions for those gaps.1

Visual Ecosystem

Let’s take a few moments to digest the flowchart above. Just focus on the flow and color groupings for now, you can always refer back to it later as we walk through it.

Starting in the top-left section, you’ll see a series of colorful circles (the key players) connected by colorful arrows. These are separated into the three phases of the organ transplant journey: procurement, matching, and transport.

We’ll explore each of these three phases in order below, highlighting 7 critical gaps where organ losses occur in today’s system — and how we might fix it with better data, transparency, accountability, training and technology.

Gaps & Phases

As the 2020 report points out, “Along the organ recovery process there are several drop-off points where organs that had the potential to be transplanted are not. These drop-off points are sometimes due to clinical reasons, but more often than not, are because of ineffective practices, processes, communication, and technology.”

This is where we focus our time today, starting with the moment the “gift of life” becomes a possibility.

Phase I: Procurement

During this phase, OPOs are coordinating with donor hospitals to procure organs from deceased donor patients who meet clinical criteria for donation.

Gap 1. If the referral is not made in a timely manner, or at all.

This first step is critical because it’s the first domino that must fall to start the entire organ recovery process— and it depends on the OPOs working effectively with donor hospitals. A missed referral means a missed opportunity to save up to 8 lives.

Causes: Lack of mandated standardization; poor training and working relationships with donor hospitals.
Potential fixes: Standardize clinical triggers nationally; leverage technology to make referrals less dependent on busy staff; better education for donor hospital staff; and institute feedback loops.

Gap 2. If OPO decides to not pursue a potential donation.

When referrals come in from donor hospitals, it is evaluated and triaged to figure out if the OPO should pursue the donation. Not all referrals are clinically able to become donors — OPTN estimated OPOs are recovering one-fifth of true donor potential. In 2018, 1.07 million referrals were reported, ultimately resulting in 10,721 deceased donors and 29,676 transplants.2

Causes: third party call-center deficiencies; ruling out for non-medical reasons; and inadequate staffing for onsite follow-up.
Potential fixes: improved technology and data on what happens to referrals; limit discretionary rule outs; pursue expanded criteria donors; improve accountability; and better OPO coordinator staffing and support.

“We’re constantly finding ourselves behind the eight ball…By the time these families decide to withdraw care, they’re done, they’re emotionally and physically exhausted. And now we’re asking them to wait 2.5 hours for us to get there to talk to them.”

Gap 3. If family does not authorize donation.

Family authorization rates vary widely from one OPO to another. Multiple studies found rates ranging from around 63% to as high as 90%.3 Here’s the catch: OPOs self-report their rates. Regardless, this gap is seen as highly fixable because 80% of families report they they would have donated if they had been approached correctly.

Causes: poor timing / poor interaction; poor training and support for requestors; poor coordination with hospital staff; and not utilizing data.
Potential fixes: better training for requestors; spending more time with donor families; hiring appropriate OPO staff; coordination with hospital staff on approach; and strong leadership and use of data.

“In 2017, the South Carolina OPO hired a new CEO and saw a 40% increase in donors, and San Francisco, California, increased donors by nearly 30% within 1 year after a new CEO was hired.”

Phase II: Match and Recovery

This phase includes matching the procured organ(s) with a patient on the waiting list to receive that organ, and overseeing surgical recovery of the organ(s).

Gap 4. If testing finds that organ is not viable.

Though this appears to happen less frequently than the other gaps, this is important because there is a lot of discretion at this stage. Each OPO can have its own definition of viability when they start this testing.

Causes: primarily clinical reasons; and poor clinical donor management.
Potential fixes: measures to make organs more transplantable; and better training on clinical donor management.

Gap 5. If OPO does not place organ while it is still viable.

OPOs are responsible for going down the match list of kidney recipient candidates on the waitlist to manage organ offers until an offer is accepted. Ideally every organ from a donor would have an accepted match before it is surgically removed, but that is often not the case. OPOs end up running against the clock when that happens — in 2018, 19% of kidneys were recovered but not transplanted.

Causes: bad organ offer technology; ineffective use of time working through the match list; and national placements through UNOS
Potential fixes: better organ offer technology; more comprehensive testing done earlier; virtual crossmatching; and more persistent matching & placement.

“You are effectively incentivized to discard [the organ] or not pursue. Working hard to place the organ with a transplant center that will take it is not rewarded. The frustrating thing is you can spend hours justifying expedited placement, whereas just walking away is not questioned.” — OPO CEO

Gap 6. If OPO fails to recover organs in a timely manner or an organ is found to be non-viable after recovery.

The gap between when an organ offer is accepted and when it is actually transplanted there are still failure points. Though they are less frequent, they are still avoidable.

Causes: Failure to secure OR and surgeon in time; and mistrust for remote recovery.
Potential fixes: Hospital agreements and setting family expectations; and local recovery teams.

Phase III: Match and Recovery

This phase centers on transporting the recovered organ to the transplant center in sufficient time so that it can be transplanted successfully.

Gap 7. If organ is not received and accepted in a timely manner, or if the organ is unsuitable for transplant on arrival.

Because of the lack of transparent data, we don’t know how often organ damage from transportation occurs across all OPOs. But it should never happen and can be mitigated. A KHN study found that between 2014 and 2019, nearly 170 kidneys could not be transplanted and almost 370 endured ‘near misses,’ with delays of 2+ hours after transportation problems.

Causes: Lack of standardization, communication, and data; poor logistics and routing.
Potential fixes: Capture data to improve routing and transparency; utilize modern technology and better communication.

“Logistics is not a core competency of OPOs, even though one of their core responsibilities is getting organs to transplant centers.”

Discussion

I know many of you have personal stories and work to share on this topic, so I’d love to hear from you. Please share your takeaways, current thoughts and hopes for what’s next in this space. Feel free to use the prompts below as a guide.

Which of these gaps have you seen or experienced?
How do you think these gaps will be addressed in the next 5 years? 10?
What was not covered in this post that should have been?
Which technologies or data might change how we think about this system?

The central structure and graphic in this post come from an outstanding report titled The Costly Effects of an Outdated Organ Donation System, first published in 2020 and updated in August, 2023. Please refer to the full report for more data, insights, and recommendations for system stakeholders.

Israni A.K., Zaun D., Hadley N., Rosendale J.D., Schaffhausen C., McKinney W., Snyder J. J. & Kasiske B.L. OPTN/SRTR 2018 Annual Data Report: Deceased Organ Donation. Am J Transplant 2019; 20 (Suppl 1): 509–541. doi: 10.1111/ajt.15678

Donor authorization rate studies here, here, and here.