RealTalk MS – Episode 442: The 2026 ACTRIMS Forum (Part 2)

Theme & Purpose Overview

Main Theme: In Part 2 of RealTalk MS’s ACTRIMS Forum 2026 coverage, host Jon Strum explores pivotal topics and breakthroughs in multiple sclerosis (MS) research and care, interviewing world-class clinicians and a patient advocate. The discussions focus on autologous hematopoietic stem cell transplantation (AHSCT), redefining MS treatment strategies, advances in imaging diagnostics, the promise of remyelination, and the drive toward more nuanced, personalized MS care—reflecting the forum’s theme: MS at a Crossroads.

Key Segments and Topic Breakdown

1. AHSCT: “Rebooting” the Immune System—Dr. Jeffrey Cohen (02:23–10:41)

Dr. Jeffrey Cohen’s Expertise:

• Neurologist at the Cleveland Clinic’s Mellen Center for MS Treatment & Research.
• Focused on experimental therapeutics and clinical trial leadership.

Key Discussion Points:

• What is AHSCT?

  • Potent immune therapy that eliminates a patient’s diseased immune system using high-dose chemotherapy, then allows it to recover—effectively “rebooting” it. (03:25)
  • “It does some of the same things as some of our medications... it just does it more potently.” — Dr. Cohen [03:35]

• Effectiveness & Use Cases

  • Highly effective at stopping relapses and MRI activity in relapsing MS for up to 5–15 years, often allowing suspension of other MS medications. (04:11)
  • Less proven for progressive forms of MS: “I suspect that this is not going to be a good option for progressive MS.” — Dr. Cohen [05:27]
  • Emerging therapies like CAR T are more promising for progressive MS, especially given ability to target tissue-based immune cells.

• Timing and Patient Selection

  • Earlier intervention after failed disease-modifying therapies (DMTs) likely yields best results, but identifying candidates early is a challenge. (06:55)
  • “Much of the research has talked about the opposite, which is when it may be too late…” — Dr. Cohen [06:56]

• Financial & Access Issues

  • High up-front cost, but becomes cost-effective in 2–3 years compared to ongoing DMTs. (08:05)
  • Insurance restrictions remain; trials like BetaMS aim to prove both efficacy and cost-savings.

• BetaMS Trial Insights

  • Directly compares AHSCT with high-efficacy DMTs like Ocrevus and Kesimpta; still an open scientific question which is best. (09:12)
  • Patients interested can find information via the BDMS website, leading to screening and possible enrollment at Cleveland Clinic sites. (10:07)

Notable Quotes

• “It’s a pretty rough procedure... built around high doses of chemotherapy… so people have to be aware... it does have some risks.” — Dr. Cohen [04:40]
• “We still don’t know the answer... whether a transplant is better than those drugs... It’s still an open scientific question.” — Dr. Cohen [09:13]

2. Early, Aggressive Treatment & Rethinking MS Categories—Dr. Daniel Ontaneda (11:46–28:03)

Dr. Daniel Ontaneda’s Expertise:

• Neurologist & DeliverMS co-principal investigator at Cleveland Clinic.

Key Discussion Points:

• Escalation vs. Early High-Efficacy Therapy

  • DeliverMS trial pits traditional “escalation therapy” (start low, increase if needed) against hitting MS hard, early with potent drugs.
  • Recent consensus shift: most MS centers now favor high-efficacy meds for new diagnoses.
  • “If you talk to most MS centers, people will generally say, we advocate the high efficacy medication.” — Dr. Ontaneda [13:13]
  • Both randomized clinical trials and real-world observations favor early aggressive treatment, but DeliverMS aims to resolve ongoing uncertainties.

• Measuring Treatment Success Beyond Lesions

  • Study uses brain volume loss (atrophy) as a key outcome, as it predicts future disability better than relapse/lesion counts. (15:29)
  • “If you’re preserving brain volume, you’re probably going to do better in the long run.” — Dr. Ontaneda [16:34]

• Lifestyle’s Impact on Outcome

  • Holistic approach advocated: medication adherence, healthy diet, exercise, stress management—all critical to optimal outcomes. (17:07)
  • “Treatment of multiple sclerosis... involves everything we do in our lives.” — Dr. Ontaneda [17:10]

• Rethinking MS Labels and Monitoring

  • Relapsing-remitting, secondary progressive, and primary progressive may be outdated as categories; focus shifting toward describing underlying disease processes (e.g., inflammation, progression) and using biologic markers. (19:07)
  • “Do I care about the label? No, not so much. I care about if a person has demonstration of inflammation...” — Dr. Ontaneda [19:33]
  • Need to “look below the waterline” for progression independent of relapse (PIRA).

• Imaging Innovations—Central Vein Sign and Rim Lesions

  • Central vein sign increases diagnostic accuracy, shortens time to confirm MS, and may help avoid misdiagnosis. (23:05)
  • Rim lesions as markers of chronic, aggressive MS; hope for new BTK inhibitor therapies targeted here. (24:32)
  • “The more rim lesions they have, it’s more likely that their MS might worsen over time.” — Dr. Ontaneda [24:44]

• Remyelination & Repair: The Next Frontier

  • Several drugs heading into trials to actually repair myelin, with optimism for early intervention strategies. (26:10)
  • “Remyelination therapy will be a reality soon.” — Dr. Ontaneda [27:44]

3. The Patient Perspective—Christine Werner Ozug (29:03–43:14)

Christine Werner Ozug’s Experience:

• Patient advocate, RealTalk MS team member, ACTRIMS Forum attendee.

Key Discussion Points:

• “MS at a Crossroads”—What It Means for Patients

  • Shift away from merely treating relapses toward holistic, person-centered care, neuroprotection, and prevention of disease progression for the entire lifespan and spectrum of MS. (29:39)
  • “We can see that research is moving in this direction of no longer treating MS relapses, that the science is evolving to look at things like neuroprotection and stopping progression and trying to stop it earlier.” — Christine [29:44]

• MS Continuum and Course Descriptors

  • Need for new ways to describe and track MS, integrating MRI, blood (serum), and CSF biomarkers with patient-reported experience.
  • Disconnection between MRI findings and patient perception: “I know you’re saying my MRI is okay… but I feel like I’m getting worse.” — Christine [32:09]

• Challenges in Tracking Progression

  • Acknowledgement of complexity: overlaps between inflammatory (relapsing) and degenerative (progressive) processes, influence of age and neuroplasticity. (35:13)
  • Discussion of emerging biomarkers (serum neurofilament light, etc.)—not yet ready for routine use, but promising.
  • “We’re moving toward… being able to track progression and also maybe start looking at is somebody starting to progress. So we can start to treat that and open up new therapeutic targets...” — Christine [36:44]

• Hope and Innovation

  • Personalized medicine is on the horizon—identifying and treating the individualized biology of every patient. (38:19)
  • “We’re on the cusp of a lot of really, really good things.” — Christine [40:10]
  • Notable new therapies: Fruxalumab trial update (early but promising), Phenobrutinib Phase 3 data (first meaningful new option for progressive MS in a decade; 12% risk reduction in disability). (41:33)
  • “It was a very brave trial, a landmark trial, that they tested that BTK inhibitor against Ocrevus and they had good outcomes... That was a big takeaway for me and the hope for people that live with primary progressive MS.” — Christine [42:28]

Notable Quotes & Timestamps

• AHSCT as “Immune System Reboot”
  “It does some of the same things as some of our medications... it just does it more potently.” — Dr. Jeffrey Cohen [03:35]

• Patient Priorities
  “I know you’re saying my MRI is okay… but I feel like I’m getting worse.” — Christine Werner Ozug [32:09]

• Measuring What Really Matters
  “If you’re preserving brain volume, you’re probably going to do better in the long run.” — Dr. Daniel Ontaneda [16:34]

• Old Labels, New Science
  “Do I care about the label? No, not so much. I care about if a person has demonstration of inflammation, whatever they were labeled with, I think they probably would benefit from one of these anti-inflammatory medications.” — Dr. Daniel Ontaneda [19:33]

• Hope for Progressive MS
  “That was a big takeaway for me... and the hope for people that live with primary progressive MS.” — Christine Werner Ozug [42:28]

Timestamps for Key Segments

• AHSCT and BetaMS trial (Dr. Jeffrey Cohen): 02:23–10:41
• Early treatment, imaging, and remyelination (Dr. Daniel Ontaneda): 11:46–28:03
• Patient perspective on research and innovation (Christine Werner Ozug): 29:03–43:14

Summary Takeaway

The 2026 ACTRIMS Forum, as reflected by this episode, reveals a field in rapid evolution—stepping beyond managing relapses to preventing and personalizing interventions against disease progression. Boasting breakthroughs in stem cell therapy, imaging, and emerging repair-focused drugs, the MS community, from world-class clinicians to patients themselves, remains unified in hope and advocacy for more tailored, effective, and life-affirming treatments.