Move It or Lose It Podcast | Episode 137, Part 1

Guest: Dr. Joshua Katz
Host: Kathy Chester
Air Date: September 10, 2025
Theme: Disrupting Ideas About MS Treatment & Up-Close on HSCT Experiences

Episode Overview

This episode dives deep into innovative avenues for treating Multiple Sclerosis (MS), focusing on Hematopoietic Stem Cell Transplant (HSCT), new clinical drug trials, and the realities patients face navigating progressive forms of MS. Host Kathy Chester welcomes Dr. Joshua Katz, Director of the Elliot Lewis Center for MS, and guests Hannah and Jacob—both HSCT recipients—for an honest, practical, and science-driven discussion. The episode frames pressing questions: how are new therapies changing the MS landscape? Where does HSCT fit today? What are the complexities and lived realities behind these major medical decisions?

Key Discussion Points & Insights

1. Dr. Joshua Katz—Background and Current Research

• MS and Related Conditions: Dr. Katz's clinic primarily manages MS and related autoimmune demyelinating diseases like neuromyelitis optica and MOGAD.
• Practice and Patient Load: Dr. Katz estimates his and Dr. Bouley's practice serves upwards of 2,500 MS patients, blending hands-on clinical care with active clinical trials.
  “We work almost exclusively with ms, although I'll include neuromyelitis, optica, mug...and we also have clinical trials.” (01:56)

Cutting-edge Clinical Trials (02:00–03:33)

• Independent Research:
  • Long-term safety trials of anti B-cell therapy.
  • Experiments with steroid-free infusion regimens.
• Industry Trials:
  • Fraxalumab: Phase 3 trials for both non-active secondary progressive MS (placebo comparison) and relapsing MS.
  • Fenebrutinib (a BTK inhibitor): Compared against Ocrelizumab, showing promise in potentially treating progressive MS.
  • “One of these drugs might even become available at the end of the month.” (03:27)

Progressive MS: What Works?

• Progress in one progressive MS subtype (primary or secondary) often translates to the other. However, insurance coverage doesn’t always follow scientific logic.
  • “If it works for primary progressive ms, it should work for secondary progressive Ms. Because...those two things look exactly the same in terms of the biology.” (03:42)

2. HSCT—Promise, Complications, and Patient Testimony (06:01–29:30)

What Is HSCT? (07:24–09:06)

• HSCT isn’t a single treatment:
  • Non-myeloablative: Uses milder chemotherapy; fewer complications, but potentially less effective.
  • Myeloablative: Stronger chemo, deeper immune reset; higher risk but sometimes better efficacy.
• Comparisons with current therapies suggest stem cell therapy’s relative benefit is narrowing as “standard” options improve.
• FDA Status: Not an approved MS treatment; access requires a clinical trial or out-of-country, out-of-pocket care.

Real-World HSCT Experiences

Hannah’s Story (10:06–20:53)

• Background: Diagnosed with primary progressive MS in 2017; progression prompted search for alternatives.
• Route to HSCT: Chose Clinica Ruiz (Monterrey, Mexico) during COVID era in 2020, attracted by reported 75% success (halted progression) for PPMS and strong peer/patient reviews.
• Pre-transplant Status: EDSS 3.5, foot drop, tingling, bladder issues, no major mobility aids pre-treatment.
• Complications:
  • Became severely anemic (required two blood transfusions).
  • Suffered acute loss of vision—“blew both retinas”—but vision eventually recovered.
  • “I had a really bad headache and fever...I woke up and I had gray spots...turned out that I had blown both my retinas.” (17:22, Hannah)
• Post-HSCT Course: No immediate disease reversal; ultimately, progression accelerated. Five years later: EDSS 6.5, bilateral leg issues, increased reliance on rollator and scooter.
  • “Unfortunately it didn’t work because I’ve significantly progressed...” (18:56, Hannah)
  • “If I hadn’t got the treatment, who’s to say [if I] wouldn’t have progressed that way? I don’t quite know.” (20:53)
• Reflections: Despite lack of benefit, Hannah stands by her decision (“the right decision at the time”), underscores nuanced risk/benefit discussion for PPMS patients, and discusses how data for HSCT is less solid for progressive vs. relapsing forms of MS.

Dr. Katz’s Reflections on HSCT (23:05–32:20)

• High bar for HSCT “success”—complete halting of progression—is rarely achieved in progressive MS.
  • “The bar that they set for success...is an extremely high bar. We don’t really even have that bar when we put people on okrealismat.” (23:05, Dr. Katz)
• Efficacy appears higher for relapsing forms.
• Many patients, even after “failing” current treatments, reasonably consider HSCT. But Dr. Katz urges critical review—Clinica Ruiz’s results appear unusually optimistic compared to more rigorous trial data (e.g., Richard Burt’s research).
  • “The numbers that they quote [at Clinica Ruiz] are sort of unusually high and better than what you’re seeing with some of the more rigorous trials.” (27:46)
• Financial & logistical caveats: cost, choice of international clinics, necessity of good patient care.
  • “You’re...on your own dime. I mean, you got to pay for this. And so, you know, it’s a big ask...” (28:56)
• Advice: Always discuss HSCT with an MS specialist with research familiarity and a head for the latest statistics/regimens.

3. MS Progression, Candidacy for HSCT, and Pathophysiology (29:30–32:20)

• Length of diagnosis often correlates more with inflammation type (acute vs. chronic) than time per se.
  • _“It’s not necessarily how long you’ve had MS, but...with time, you’re going to have fewer relapses with time and fewer new MRI lesions...the longer you’ve had ms, the less frequent those things become. (30:19, Dr. Katz)
• HSCT is most effective for those earlier in the disease course and with active inflammation.
• Blurring the lines: modern research questions if primary and secondary progressive forms of MS are truly distinct or points on a spectrum—a shift in thinking that may impact future therapeutic choices.
  • “Maybe not even the difference between progressive forms and relapsing forms of Ms. It’s just a matter of what form of inflammation predominates.” (31:31)

Notable Quotes & Memorable Moments

• On trial progress:
  “These drugs are getting a lot of attention now because they look like they have the potential to treat progressive forms of Ms.”
  —Dr. Katz (02:20)

• On HSCT’s limits:
  “Our high [efficacy] treatments keep getting a little bit better, almost in line with HSCT.”
  —Dr. Katz (09:03)

• On the ambiguity of outcome:
  “You really never know when you’ve accomplished that goal because we don’t know the counterfactual of what would have happened...It could have been the same, could have been better, could have been worse.”
  —Dr. Katz (23:36)

• Raw patient perspective:
  “I knew it was the right decision for me at that time. I wanted to do something to see if it worked.”
  —Hannah (21:20)

• Practical advice:
  “My advice for anybody thinking about HSCT is make sure you’re seeing an MS specialist and ask them what they think.”
  —Dr. Katz (29:30)

Timestamps for Key Segments

• MS Clinical Trials & Innovations: [01:56] – [05:58]
• What Is HSCT?: [07:24] – [09:06]
• HSCT as a Patient Decision: [09:27] – [10:06]
• Hannah’s HSCT Experience & Complications: [10:06] – [20:53]
• Medical Commentary on HSCT Outcomes (Dr. Katz): [23:05] – [27:46]
• Advice for HSCT Seekers: [29:30] – [29:52]
• Progression & Disease Mechanisms: [30:19] – [31:57]

Tone & Flow

The episode balances hope, realism, and front-line patient experience. Dr. Katz’s approach is scientific but empathetic, acknowledging uncertainty and hard choices. Hannah’s testimony is open-hearted and present-tense, showing what it’s like to navigate treatment possibility, risk, and the evolving reality of living with progressive MS.

Conclusion & What’s Next

The episode wraps as a “part one,” promising that Jacob will share his HSCT journey in the next installment, and Dr. Katz will field more audience and host questions about where treatment could and should go next.

For listeners: This episode is an indispensable primer on the challenges, innovations, and tough decisions facing today’s MS community—grounded in both cutting-edge science and lived patient stories.