Juicebox Podcast #1787: "Cured? Patient 9 Speaks"

Host: Scott Benner
Guest: Katie Beth Hand (Patient 9 in the ELODON Trial)
Date: March 2, 2026

Episode Overview

This episode features a detailed conversation between host Scott Benner and Katie Beth Hand, who is Patient 9 in the landmark ELODON trial—a study aiming for a functional cure for type 1 diabetes (T1D) using donor-derived islet cells and the investigational drug Tegaprobar(t). Katie shares her personal diabetes journey, her experiences before and after the transplant, the science behind the trial, and her reflections on what this emerging “functional cure” means for people with T1D.

Key Discussion Points & Insights

Katie's Diagnosis and Early Life with Diabetes

• Diagnosis Experience (04:44–08:31)

  • Diagnosed at age 26 after presenting with typical T1D symptoms misattributed to the flu. Initially misdiagnosed as type 2, then rapidly redirected to ER for DKA.
  • “I went in ... the day that I got my diagnosis. And so he actually came back in ... he was like, so actually, plot twist. It’s diabetes.” – Katie [05:20]
  • Her diagnosis was traumatic, leading to “a very, very hopeless time.”

• Support Structure and Self-Management (08:31–10:29)

  • Managed her diabetes independently from the start. “Managing my diabetes has always been me ... that learning curve is one I took on and did myself.” – Katie [09:01]
  • Took multiple years before diabetes became “just another part of the day.”

• Physical and Emotional Adjustments (10:42–13:29)

  • Faced severe body image changes post-diagnosis (rapid weight gain, hair loss).
  • Early CGM adoption was a “game changer.”
  • Developed strategies to minimize diabetes’ impact on daily life.

The ELODON Functional Cure Trial

• Trial Overview (16:43–18:20)

  • ELODON trial is based at University of Chicago, testing transplantation of cadaveric islet cells into the liver and using Tegaprobar(t), a targeted immunosuppressant.
  • Tegaprobar(t) (TEGO) is an anti-CD40 ligand medication that targets immune response without broad immune suppression.

• Why Tegaprobar(t) Is Exciting (18:20–20:54)

  • Tacrolimus, the standard immunosuppressant, has significant side effects and toxicity, while Tegaprobar(t) has “zero side effects”—“I don’t feel bad, I don’t have headaches ... I don’t have any of those side effects.” – Katie [19:43]
  • Because of its selectivity, TEGO is a potential game-changer for enabling islet transplants on a larger scale.

• Procedure & Post-Transplant Life (24:33–27:29)

  • Katie received her islet cell transplant on January 12, 2026, with ongoing IV TEGO infusions every 21 days.
  • Was off basal insulin just one week after the transplant; currently in transition, using minimal insulin to allow islet cells to “rest” as they establish.
  • “To come home and take my basal insulin and just like, toss that whole pen in the trash was a very cool moment.” – Katie [26:09]

• How the Therapy Works (27:26–34:08)

  • It takes about three months for islet cells to become "fully mature."
  • Early meal challenge tests already show her new islet cells controlling blood sugar autonomously.
  • Only limited insulin coverage now—protocol designed to minimize stress on new cells.
  • “I drank this shake ... watched my blood sugar start to go up and then ... my islet cells pulled that back down to 81 and just sat there ...” [27:34]

Safety, Logistics, and Selection for the Trial

• Safety Profile and Logistics (22:26–23:35, 62:08–63:09)

  • TEGO infusions can safely be delayed (“window is closer to two or three months”), and missing one isn’t catastrophic.
  • No notable side effects post-infusion: “There are none. I could not tell you ... it could be saline in the IV for all that.” – Katie [62:08]

• Selection & Candidacy (31:36–34:08)

  • Rigorous screening: questionnaires, interviews, extensive medical workups, and exclusions (e.g., diabetic retinopathy, high daily insulin requirements).
  • “It was a very ... detailed phone interview ... they make sure you’re not completely nuts ...” [31:46]

Reflections on Disease Identity and Newfound Freedom

• Living Without Diabetes (38:10–41:29)

  • Emotional dissonance about not having lows anymore: “The craziest, most unexpected part ... not having lows anymore.”
  • Still feels attachment to the CGM for “a sense of control.”

• Does She Miss Diabetes? (40:15–41:29)

  • No, but the ingrained daily routine is difficult to unwind: “It is such a habit ... you can have my CGM when you pry it off my cold, dead body.” – Katie [40:49]

• Public Perception, Skepticism and Hopes (44:02–47:25)

  • Acknowledges skepticism from the diabetes community (“I respect it ... we've been promised a cure for years …”), as well as conspiracy theories about Big Pharma’s response.
  • Clarifies that this is a “functional cure” requiring ongoing TEGO, but “trading diabetes for another medication is a trade most type 1s would gladly make.”

Future Implications and Roadmap

• How Soon Could This Be Widely Available? (54:49–56:58, 65:00–67:11)

  • Functional cure is more complex than a one-time pill (“In a perfect world ...”). Scaling up and delivery (subcutaneous injections, wider access) will take time.
  • Current phase only for select patients; next phase includes those with kidney dysfunction.
  • “This is the most complete idea I’ve heard so far—and that’s exciting.” – Scott [67:11]

• The Broader Impact: Hope, Caution, and Realism

  • Urges people to keep managing diabetes carefully—widespread cure is not imminent.
  • “Don’t get too excited right now ... for the rest of you, you’re not getting Tego next week ... this is the beginning.” – Scott [66:44]

• Other Avenues in Diabetes Cure Research (68:17–69:47)

  • Discusses other innovations (lab-grown islet cells, porcine-derived, “eyeball” transplants).
  • Sees all research as “collaborative,” not competitive; different approaches contributing to eventual widespread cures.

Notable Quotes & Memorable Moments

• “I was like fat and bald, which was a real bummer. Fat and bald with a chronic illness, wear these devices all day. I was scared to exercise because it kept sending me low. … I felt, Scott, for those first, probably that first entire year for sure, like my body was not even my own.”
  — Katie [11:34]

• “The craziest part … not having lows anymore.”
  — Katie [39:33]

• “Controlling diabetes kind of turns you into a control freak. … My CGM, my Dexcom has been what has been keeping me alive for the last 13 years. ... You can have my CGM when you pry it off my cold, dead body.”
  — Katie [40:49]

• “I would go outside and beat up an old lady to give to my daughter … in front of a television camera … I’d be like: they’re telling me I have to beat up this old lady for my daughter to get this. So, sorry, Mama.”
  — Scott [47:49]

• “If you had asked me ... three years ago, do you think you’ll see a cure for type 1 in your lifetime? I’d have said no. ... And then here I sit, post islet cell transplant on this drug, feeling the best I’ve felt in a decade and a half ... Here I sit, functionally cured.”
  — Katie [56:07]

Important Timestamps

• 04:44 – Katie’s diagnosis story
• 10:29 – How long it took to feel “in control”
• 13:29 – On hunger and T1D after diagnosis
• 16:43 – Introduction to the ELODON trial and Tegaprobar(t)
• 18:42 – Why this approach is a big step forward
• 24:36 – Date of transplant
• 26:09 – Life immediately after transplant
• 27:34 – Early proof that new islet cells work
• 31:46 – How patients are selected for the trial
• 40:49 – Sense of identity & attachment to CGM post-cure
• 47:49 – Functional cure, and what the trade-offs are
• 54:49 – Why scaling up the therapy will take time
• 65:00 – Roadmap: new clinical trial phases, FDA approval
• 69:47 – Final reflections on hope, research collaboration, and the next generation

The Tone and Takeaways

Scott threads skepticism, humor, and realism throughout, balancing enthusiasm with caution for listeners—especially parents and people with diabetes—about the actual timeline and reach of these advances. Katie is upbeat, clear, and candid, conveying both her technical knowledge and emotional perspective. Their candid exchange makes the science accessible and highlights the lived experience of someone at the frontier of diabetes care.

Major takeaway:
The ELODON trial's combination of donor-derived islet cell transplantation and Tegaprobar(t) represents the closest thing yet to a “functional cure.” While not imminently available for all, it is a massive leap forward, with almost no side effects and significant lifestyle improvements for participants—offering unprecedented hope to the T1D community.

Looking Ahead

• Next Steps: Phase II trial with broader eligibility (including those with kidney dysfunction) anticipated this year.
• Future Features: Scott invites Katie and other trial patients back for follow-up episodes and expresses special interest in experimental approaches like the “eyeball” islet transplant.
• Realistic Hope: Advances are happening faster, and this generation of children with T1D may not face a lifelong diagnosis, but management remains crucial for now.

For More Information:

• Learn about the ELODON trial: [University of Chicago Medicine – ELODON Islet Transplant Trial]
• Follow Katie Beth Hand’s journey (TikTok, Instagram)
• For peer support: Juicebox Podcast Facebook group