High-Impact Growth: Shared Episode from System Catalysts

Episode Title: Why are Thousands of Donated Organs Thrown Away Each Year?
Hosts: English Saul (System Catalysts), Shared by Dimagi’s Amie Vaccaro
Guests: Greg Segal (Founder, Organize), Jennifer Erickson (Senior Fellow, Federation of American Scientists)
Release Date: May 22, 2024

Overview

This episode takes a deep dive into the deeply flawed U.S. organ donation system, spotlighting why tens of thousands of donated organs are discarded annually—even as patients die waiting for transplants. Host English Saul, herself a double lung transplant recipient, interviews two leading change agents: Greg Segal and Jennifer Erickson.
Their candid conversation explores how data and persistence uncovered systemic issues within "organ procurement organizations" (OPOs), the hidden government contractors at the center of this crisis, and how bipartisan policy change became possible despite bureaucratic inertia and monopoly power.

Key Discussion Points & Insights

Personal Connections to Organ Donation

• English Saul recounts her own life-saving double lung transplant at 19, revealing the gravity and inefficiency of the process.
  • “Every day, 17 people in the US die waiting for a transplant, while at the same time, organs are thrown away, damaged in transit, or simply left behind. And those responsible are not being held accountable.” [01:05]
• Greg Segal shares his family’s struggle: his father survived multiple surgeries before a heart transplant, and two aunts’ experiences highlight the system’s shortcomings and stakes.
  • “It's been a failing system and, as a result, 33 Americans—disproportionately patients of color—are dying every single day; much if not all that death, completely preventable if we can make the right system improvements.” [05:30]
• Jennifer Erickson also lost her father to organ failure, emphasizing the urgency and personal nature of their advocacy.
  • “If you see something affect someone you love, then you start thinking, okay, is that an 'N of one' or is this a bigger problem?” [06:56]

The Shocking “Aha Moment” – Where the System Fails

• Massive public support isn’t enough:
  • 95% of Americans support organ donation; the majority register, yet only a fraction of potential donors become actual organ donors due to systemic breakdown. [07:48]
  • “I didn't realize how much of the rest of [the system] was broken… inefficiency is too soft of a word.” —Greg Segal [08:53]
• OPO performance is the bottleneck:
  • Only 1 in 5 suitable organ donors have their organs actually recovered and transplanted.
  • “It literally polls higher than puppies and ice cream. And yet...the system is only recovering one out of every five organ donors.” —Jennifer Erickson [09:09]
  • Rough numbers: 28,000 organs go unrecovered and untransplanted annually—17,500 kidneys, 7,500 livers, 1,500 hearts, 1,500 lungs. [10:02]

The Role of OPOs—Hidden, Unaccountable, and Inequitable

• OPOs have geographic monopolies, no competition, little regulation (until recently).
  • “The single biggest predictor of whether organ donation rates are high, middling or low in any part of the country is—Is that OPO good at its job?" —Greg Segal [11:36]
• Documented racial inequities:
  • “Only half as likely to even respond if it’s a black donor versus a white donor. ...They spend less time with black families, answer fewer questions, exhibit less compassion.” —Greg Segal [13:12]
• Failures in logistics and accountability:
  • More than 8,000 kidneys (1 in 4) were discarded last year—often damaged, delayed, or lost in transit.
  • “It is 15 times more likely to lose or damage a human organ in transit than an airline is a suitcase.” —Jennifer Erickson [15:37]

Systemic Barriers and the Path to Change

• “Secret Congress” and the Power of Data:
  • Greg recounts how working below the public radar enabled bipartisan collaboration:
  • “The less people are politicizing an issue, that’s actually where you can find lots of bipartisan compromise...Just the facts, ma’am.” —Greg Segal [17:33–19:39]
• Bipartisan Action:
  • Years of Senate and House investigations and multiple hearings brought rare, unanimous support to change legislation:
  • “Congress unanimously passed a law to break up the national organ monopoly. Unanimously. The last thing that passed unanimously before that...is Tony Bennett Day.” —Jennifer Erickson [23:25]
• Successes and Frustrations:
  • Strong new regulations passed (2020), estimated to save 7,000 lives a year, but bureaucracy means results are slow to materialize.
  • “We thought we had our big moment...That was four years ago. And we still don’t know for sure that we have every reason to believe it’s going to work. But you don’t have it yet.” —Greg Segal [21:47]

Lessons in Systems Change

• Measuring Impact:
  • Must use hard data, specific regulatory benchmarks, acknowledge long timelines, and recalibrate constantly. [23:23]
• Persistence is Non-Negotiable:
  • “You have to be prepared to sprint marathons and just realize that you can never congratulate yourself too much until it’s done.” —Jennifer Erickson [25:41]
  • “You’re going to get kicked in the teeth and the question is, do you keep going?” —Greg Segal [26:38]
• Advice for Changemakers:
  • Greg: Try to “talk yourself out of it”—if you still persist, you likely have what it takes.
  • Jennifer: “If you can’t say what you’re doing on one page and what you specifically, specifically want whoever’s reading it to do, then you haven’t done your homework.” [26:49]

Notable Quotes

• The Scale of the Crisis:
  • “This is absolutely horrifying. It is 15 times more likely to lose or damage a human organ in transit than an airline is a suitcase. It happens literally every week.” —Jennifer Erickson [15:37]
• On Uniting Bipartisan Support:
  • “Let me tell you something else. Taxpayer funded monopolies are even worse. It’s like the fever dream of everything wrong. That’s why Republicans and Democrats have united to try and fix it—because there just quite simply is no accountability at all.” —Jennifer Erickson [14:27]
• On the Need for Relentless Focus:
  • “If you really want to honor organ donors, if you really want to help patients, then again, it’s not marketing, it is numbers. It’s who did the job.” —Jennifer Erickson [19:49]
• Lasting Wisdom for System Catalysts:
  • “Movements move when they move without you.” —referenced by Jennifer Erickson [25:41]
  • “If they know exactly who to forward that email to or exactly the question, they can say, ‘Hey, can we do this? Is this person right?’ Then you might really be cooking.” —Jennifer Erickson [27:00]

Noteworthy Timestamps

• 00:38–02:37: Host’s personal story; setting the urgency and stakes
• 05:30–09:09: Guests’ personal motivations; introduction to OPO system
• 09:09–11:36: The scope of the crisis; statistics on unrecovered organs
• 11:36–14:13: What OPOs are and why they’re the system’s weak link
• 14:24–17:09: Data on inequities; how racial disparities manifest
• 17:33–20:56: The surprising advantage of low public attention; bipartisan ‘secret’ reform
• 21:47–23:23: Reflections on policy wins and continuous vigilance
• 25:41–27:00: Advice for changemakers; the long haul of systems reform

Overall Tone & Takeaways

Driven by a combination of personal passion, hard data, and unflagging persistence, the conversation is urgent, candid, and solution-oriented. The speakers mix dark humor and hope, urgently calling for continued scrutiny and action. The episode closes with practical advice for anyone tackling entrenched systems: Be relentless, let data lead, stay humble, and make your one-pager count.