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RealTalk MS
Episode 442: The 2026 ACTRIMS Forum (Part 2) with Dr. Jeffrey Cohen, Dr. Daniel Ontaneda, and Kristine Werner Ozug
00:44:41
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- [00:01]
John Strum
I'm john strum and this is real talk, mississippi.
- [00:18]
Podcast Host / Narrator
It's February 17th and we have a lot to talk about in part two of our coverage of the 2026 Actrooms forum. You'll hear from two world class experts who were both presenters at the ACTROMS Forum, and you'll also get the perspective of someone living with Ms. So we're going to dive right into these interviews. First, I'll remind you that this episode of Real Talk Ms. Is sponsored by ABLE now, a Tax Advantage savings program for people with disabilities. If you're living with multiple sclerosis, this is important news. Expanded federal rules mean more adults with disabilities, including many people with ms, can open an ablenow account. ABLE NOW lets individuals save and invest money without affecting their eligibility for certain public benefits such as SSI or Medicaid. For many of you, it can be an essential financial tool. To learn more and understand if you're eligible to open an account, visit ablenow.com and you'll find that link in today's show. Notes each year the Actroms Forum opens with the Kenneth P. Johnson Memorial Lecture. Dr. Ken Johnson was one of the world's leading innovators in Ms. Research and treatment. His career spanned more than four decades and more milestones than I could possibly name, and in 1995, Dr. Johnson spearheaded the foundation of Actromes. This year, Dr. Jeffrey Cohen delivered the Kenneth P. Johnson Memorial Lecture, titled AHSCT Current Status and Remaining Questions. Now, AHSCT is shorthand for autologous Hematopoietic Stem Cell transplantation, and it's a subject of significant interest on the part of clinicians and people living with Ms. I had a conversation with Dr. Cohen about AHSCT, and in a moment we'll hear that conversation.
- [02:23]
John Strum
Doctor Jeffrey Cohen is a neurologist at the Cleveland Clinic's Mellon center for Multiple Sclerosis Treatment and Research, where he also serves as the Director of the Experimental Therapeutics Program and the Director of the neuroimmunology fellowship program. Dr. Cohn has held any number of roles across multiple clinical trials developing new therapies for MS, and he has 300 publications focused on the immunologic, clinical, and research aspects of multiple sclerosis. And it's good to see you again, Dr. Cohen.
- [02:53]
Dr. Jeffrey Cohen
Likewise, it's good seeing you.
- [02:55]
John Strum
The theme of this year's ACTROMS Forum is Ms. At a Crossroads. And perhaps apropos that you opened the meeting by delivering the Kenneth P. Johnson Memorial Lecture, titled AHSCT Current Status and Remaining Questions. People Living with Ms. Often hear AHCT described as rebooting the immune system. In simple terms, how is this different from the high efficacy medications many patients are already taking?
- [03:25]
Dr. Jeffrey Cohen
So the way I like to think about AHSCT is that it's a very potent immune therapy. So it works by eliminating the diseased immune system and then allowing it to recover with a more normal, with more normal characteristics. So it does some of the same things that some of our medications do. It just does it more potently.
- [03:53]
John Strum
That really leads me to my next question. Someone with active relapsing Ms. Who might be considering this procedure today. To them, what does success look like? Are we talking about fewer relapses or the possibility of stopping medication entirely for several years perhaps?
- [04:12]
Dr. Jeffrey Cohen
Well, part of the reason why there's a great deal of interest in AHFCT is that in many of the studies that have been published, there's been very potent elimination of relapses and MRI activity, sometimes lasting for 5, 10, 15 years in some patients without the need for disease modifying therapy. So that's what we hope for. What's been a little bit less certain is how well that approach works for progression. And so that's the sub of some ongoing studies. And then the other issue with AHSCT is that it is a pretty rough procedure. The therapy's built around high doses of chemotherapy which eliminate the immune system. And so there's a lot of side effects during that stage of the procedure. So people have to be aware that although it can be a highly effective approach, it does have some risks.
- [05:10]
John Strum
And that approach has been described as highly effective for people, as you said, with relapsing Ms. Patients with progressive Ms. Sometimes often feel left behind. What remaining questions still need to be answered before this might be a viable option for them?
- [05:27]
Dr. Jeffrey Cohen
Well, so I suspect that this is not going to be a good option for progressive Ms. One of the things that I talked about in my presentation this morning was what aspects of Ms. It seems to be useful for and which it seems to be less consistently useful for. So I'm actually more hopeful about several other therapies for that aspect of the disease. We had hope that the BTK inhibitors were going to pan out. We're still waiting to see about that. But I think the other approach that shows some promise for that aspect of the disease is CAR T because it does many of the same things that the B cell deplet monoclonal antibodies do, for example, ocrelizumab and some of the other ones. But it does that more potently. It Eliminates those cells more deeply within the tissues, including within the nervous system. So I suspect that hematopoietic stem cell transplant will be potentially a very effective treatment earlier in the disease for people that are still having relapses and active MRI despite medications, but that other things will be better for progressive Ms.
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John Strum
I was about to ask you whether there was a sweet spot when it comes to timing for that procedure. Is there a point where it's actually too early in a patient's journey to consider this kind of a procedure?
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Dr. Jeffrey Cohen
Yeah, so much of the research has talked about the opposite, which is when it may be too late, unfortunately. And when we have discussions with people that are considering it ahsct, we sometimes have to say that the likelihood of harm for them outweighs, weighs the likelihood of benefit. Now the other question with the one that you actually asked is should we be considering it earlier in the disease course? And I think that's probably true. Like many of our therapies, it works earlier in the disease. The difficulty is identifying those people for whom it's warranted and to do that somehow before they've already accumulated disability.
- [07:39]
John Strum
Even with the science where it is today, the cost of AHSCT is a massive barrier for many people. On the other hand, the cost savings of being able to discontinue an extraordinarily expensive disease modifying therapy, well, those savings are very real. Given these two financial realities, are we getting closer to making insurance companies see this as a standard treatment rather than an experimental last resort?
- [08:05]
Dr. Jeffrey Cohen
Right, so you're exactly right that it is an expensive therapy, but when weighed against the cost of disease modifying therapies, it probably becomes cost effective within two to three years. Unfortunately, currently many of the payers take a sort of short sighted view of things. So that was one of the purposes of the trial that I talked about today, the Beta Ms. Trial, which was among other things to show that it's not only highly effective, but it's cost effective in addition, because. So we're looking at some very detailed pharmacoeconomic analyses to try to show that. Because the underlying purpose of the trial is to make if it turns out to be, if the results turn out to be what we anticipate to make it a somewhat more mainstream treatment.
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John Strum
So given the BDMS trial, what's the one thing that trials should tell a patient who might be debating between a drug like Ocrevus or QSIMTA and a full stem cell transplant?
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Dr. Jeffrey Cohen
So I think the way to think about it is that we still don't know the answer, whether a transplant is better than those drugs and for whom it's better and in which ways it's better. So it's still an open scientific question. So someone considering going on one of those treatments whose Ms. Places them at risk for future disability, they should consider the trial. The transplant's paid for in the trial. But conversely, if they end up being allocated to the medication arm, we don't just watch them get worse and worse year after year. We keep a very close watch on them. And if their therapy needs to be changed, we can do that. And including whether we, if we need to consider transplant, that's an option.
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John Strum
And somebody who may be considering those options, where can they find more information?
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Dr. Jeffrey Cohen
So they can go to the BDMS website, then that'll take them, that'll gather some preliminary information just to make sure that it's an appropriate trial for them to consider and then that'll be sent to actually my team at the Cleveland Clinic where we will contact them and evaluate them further. And if it looks like the trial is appropriate for them, we'll hook them up with one of the sites.
- [10:33]
John Strum
Dr. Jeffrey Cohen, thank you for all you continue to do to improve the lives of people living with Ms. Thanks so much for taking a few minutes out of a busy day to talk with me.
- [10:41]
Dr. Jeffrey Cohen
No, I enjoy talking with you.
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Podcast Host / Narrator
Dr. Daniel Antoneda is a neurologist and professor of neurology at the Cleveland Clinic's Mellon center for Multiple Sclerosis. And he's the co principal investigator of deliver MS, an important clinical trial whose results will certainly influence Ms. Treatment plans for years to come. Dr. Antoneda and I had a wide ranging conversation that included the Deliver Ms. Trial. We discussed how incorporating new imaging biomarkers in the way that Ms. Is diagnosed will make it far easier to get a confirmed, reliable Ms. Diagnosis. We talked about whether the current labels for Ms. Still make sense when it comes to patient care. And Dr. Antoneda explained how patients living in the real world can sometimes be quite different from what we see reflected in clinical trials. In just a moment, you'll meet Dr. Daniel Antoneda.
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John Strum
Doctor Daniel Antoneda is a neurologist and professor of neurology at the Cleveland Clinic's Mellon center for Multiple Sclerosis. And he's the co principal investigator of the Deliver Ms. Trial which tackles one of the biggest questions for people who are diagnosed with Ms. Should we start treating Ms. With the most powerful drugs immediately or escalate as needed? It's good to see you, Dr. Antoneda.
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Dr. Daniel Antoneda
It's great to See you.
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John Strum
John, you've described liver Ms. As a test of two different philosophies rather than just two drugs. For someone who's newly diagnosed today, what's the most compelling piece of evidence that you've seen so far that might suggest we should hit hard and hit early?
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Dr. Daniel Antoneda
Yeah, that's a great question. And I think it's something that almost every day I see in clinic. And I think people who have been recently diagnosed with ms, one of the first things we talk about once we confirm a diagnosis is, well, how are we going to treat the disease? And the reality is that we've got over 20 medications and it's a little bit complicated. And I think for people recently diagnosed with ms, it can be really confusing and sometimes it's easy to break it down. And I think the trial breaks it down and you just broke it down yourself, which is you can do a stepwise approach where you start with low efficacy medications and only if you need to do you move on to the more powerful medications. And the overlying phenomenon there is that maybe if you use lower efficacy medications, perhaps you have a little fewer risks initially when using the medications versus high efficacy may be associated with some increased risk. Now, I think the Ms. Field has changed. When we started the study, I would say things were probably 50, 50, even at Ms. Centers where people said, well, I'm not really sure what I should be using, escalation approaches or highly effective approaches. Now I think that if you talk to most Ms. Centers, people will generally say, we generally advocate the high efficacy medication. And that's based mainly on two sources of information. On the one side, it's actually randomized clinical trials where people are either, you know, randomized, flip of a coin, exposed to a low efficacy medication and that's compared with a high efficacy medication. And when you do that, it's clear that people on the high efficacy medication do better. Now you have to understand that that's a trial and that many times in clinical practice we're not just leaving patients on the low efficacy medication. That is, we're escalating quickly. And so it doesn't really exactly capture what people do in practice. And then that gives us to the second piece of data, which is observational data. So here in observational data, it's not a randomized clinical trial. We just take people out of our practices and perhaps out of registries and we compare people who started escalation approaches versus those that started highly effective approaches. And generally that data shows that the people who are on the high efficacy medications tend to do better. But the problem is that it's observational data. So on the one side, we have clinical trials that are imperfect. On the other side, we have observational studies that might have some bias associated with them. And so I think really, to answer the question definitively, we need randomized clinical trials. And that's what deliver Ms. Is doing. Although we did the study because we think people on high efficacy are probably going to do better, that's what we're trying to demonstrate. And at the end of the day, the trial could go either way. And to be honest, I wouldn't be super surprised one way or the other. But the reality is that the most important thing is that patients start on some medication and that they monitor and make sure that it's working for them and that it's safe for them.
- [15:14]
John Strum
Your study uses brain volume loss or atrophy as a primary way to measure success. Should a patient care more about their brain volume on an MRI than just the number of new lesions that MRI may show?
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Dr. Daniel Antoneda
Yeah, that's a great question. So when we were designing the study, we had a couple options. One option was we could focus on, for example, how many new lesions a person might develop on a treatment. And I think if you do that, you'll pretty much know what the answer's gonna be. The high efficacy medications will probably block the lesions a little bit better. And it's probably the same for attacks. And the reality is that attacks probably are gonna do better on high efficacy medications. What we were interested, though, was in a long term question. Not attacks, not MRI lesions, but what does a person's disability look like 10 years after they started a medication? We would have loved to do from the get go, a 10 year study or. But they gave us three years to do the study. And so in the span of three years, we said, well, what is the measure that is probably best at early on predicting how a person's going to do from a disability standpoint. And that's why we selected brain volume loss. We had to do a lot of work, and we got in rooms with people with Ms. And we asked them, do you think that brain volume loss, that is the rate at which the brain is slowly losing volume, do you think that is something important for people with ms? And the resounding answer was, yes. Care about this. You know, we think time is brain. We think, of course the brain is valuable. And it's natural to think that if you're preserving brain volume, you're probably going to do better in the long run.
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John Strum
You've looked at how drugs like ocrelizumab do in the real world compared to controlled trials. What's the one thing patients do in their daily lives that most impacts how well their medication actually works for them?
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Dr. Daniel Antoneda
Yeah, this is a great question. Also, whenever we talk about treatment of multiple sclerosis, we talk about not just medication. I think treatment of multiple sclerosis is something holistic and is something that involves not just a medication. It involves everything we do in our lives. And I think what we know is that people do the best when they combine an effective medication for Ms. And monitoring to make sure the medication is working. And at the same time, they're doing all the other things to keep their brains healthy. This is probably things that are important for everyone to do. However, when somebody is diagnosed with ms, we talk about it. So what does that include? That includes making sure that your diet is balanced. And we generally recommend a heart healthy, heart healthy diet, which is lots of fruits, lots of vegetables, don't eat a lot of processed food, don't eat a lot of food that has a high salt content, because we know that those probably don't help Ms. It also includes ecs, exercise, regular exercise. It also includes management of stress levels, which we know can be hard for all of us in our lives. And, you know, even more for those people who are stressed about our recent diagnosis of multiple sclerosis. So we provide tools for that. And I think if you combine these healthy wellness approaches with a medication that we think works and is monitored correctly, that will probably optimize your best response. And then, of course, we ask people to be cautious and make sure that they report any side effects with the medications, because we to know about those, to make sure that the balance between controlling the disease and the risks, sometimes that are associated with the medications is taken care of.
- [18:48]
John Strum
You and I have talked about this subject before, and you've suggested that the traditional buckets for Ms. Relapsing, remitting, secondary progressive, primary progressive, might be outdated. If we move away from these labels, how will that change the way a doctor decides which treatment is right for the patient in front of them?
- [19:07]
Dr. Daniel Antoneda
Yeah, that's a good question also. And I think what we need to try to do is stay away from the labels or the buckets and describe what are the processes that are present in a person's multiple sclerosis. And we know quite well that certain treatments are really good for certain processes that we find. And the very clear example here is, for example, the presence of new MRI lesions, the presence Of MRI lesions that are active, those are measures clearly of inflammation and those measures typically respond to an anti inflammatory treatment. And so you might ask me, you know, 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. As we're trying to develop medications that might target that more slow worsening, what we call progressive Ms. Or progressive biology, it stands to reason that when we're able to identify that, we should use medications that are effective for that. Do we have medications right now that are effective for that? We're still searching. There were some promising leads and I think the field is still undecided if medications are available right now. But certainly we have a very long list of potential therapeutics that might be targeting that slow worsening of Ms. And we have to test them. And once we identify something that works, then the idea is you treat what you can see biologically to that point.
- [20:37]
John Strum
We've heard a lot about progression independent of relapse, activity shortened to pira. How do we catch this progression earlier so patients don't wake up one day feeling they've lost ground despite having a stable mri?
- [20:52]
Dr. Daniel Antoneda
Yeah, good question. I encounter this almost on a daily basis with my patients. And the reality is we do an MRI every six months on people who are treated, sometimes every year, sometimes every two years. And we monitor for the presence of relapses. And many times we see no MRI lesions, no active inflammation on the mri, no attacks. But when you ask the patient how do you feel? Many times they notice that there is a gradual worsening. And that gradual worsening can occur in spouts. It occurs and then it relieves itself, and then they're stable and then it can worsen again. And so it's somewhat of a fluid process. And the reality is that you can't pick up that what we call progression independent of relapse activity unless you're looking for it. How can you look for it? Well, we can just ask people how they're doing. I think that's one technique. You can ask them with something called patient reported outcomes. And perhaps you can do even more detailed testing than we normally do. We think about detecting progression maybe by changes on something called the edss. And that probably will detect a small proportion of individuals who are worsening. But if we, for example, take a test based on a digital device that somebody is using that's measuring their walking speed or is measuring the distance they walk, or perhaps is Measuring some physiologic function that might be changing, we might be able to much more readily assess individuals who are worsening. And it's important to do that because you want to identify that worsening early, because we want to put them on something, we want to treat them symptomatically to improve the symptoms that might be worsening. So I think the bottom line is you have to look for it. And this is the analogy kind of of the iceberg. Right. And so what you see at the very tip is maybe kind of what historically we've considered worsening Ms. But the more you look, there's something that's below the waterline of that iceberg that might demonstrate some worsening.
- [22:49]
John Strum
As an imaging expert, you're a major proponent of using the central vein sign to make Ms. Diagnoses faster and more accurate. How does this tool help a patient avoid the familiar diagnostic odyssey of being told they might have Ms. For a period of years?
- [23:06]
Dr. Daniel Antoneda
Yeah, the diagnosis of Ms. Is sometimes very straightforward, but many times it's not. And many times you have individuals who might have spots in their brain that somebody has said these are suspicious for ms, and many times have to be followed over years before a diagnosis of Ms. Can be confirmed. The central vein sign is a special type of MRI tool because it allows us to identify if spots in the brain are related to multiple sclerosis or not. The presence of a vein in the middle of a lesion actually relates to the fact that those lesions occur around the blood vessels. That happens in ms, but it doesn't happen in other conditions that might mimic Ms. Migraine, small vessel ischemic disease, or small strokes. Other inflammatory conditions can have spots in the brain, but they typically do not have the small vein going through the middle of the lesions. So if at the get go, you can do an MRI and find these lesions, you can be pretty sure early on that it is indeed Ms. And that's in the new diagnostic criteria. Sometimes might save you from having to wait and do repeated MRIs. Sometimes might save you from having to do a lumbar puncture.
- [24:17]
John Strum
A lot of people are going to be very happy to hear that. For sure. We're hearing that rim lesions might predict a more aggressive disease. Course, if a patient sees this on their MRI report, should they be asking for a different treatment strategy?
- [24:32]
Dr. Daniel Antoneda
Great question. I think the reality is that these paramagnetic rim lesions are a marker of perhaps a different type of biology in Ms. And it's the presence of what we call chronic inflammation. That's inflammation that isn't like the typical inflammation we talk about with new lesion formation. These are lesions that might already be there that have a rim of inflammatory cells around them. We think that that is different. And we know that people who have rim lesions, the more rim lesions they have, it's more likely that their Ms. Might worsen over time. I would love to have a treatment right now at my disposal that I could say, yes, you have rim lesions. I'm going to treat you with this medication. We had some initial signals on some medications within the BTKI family that appear to respond better in people who had REM lesions. Or there was. Actually, what was found was that the people who had REM lesions were the ones that most benefited from the medication. However, the overall status of that medication right now is still being discussed with the fda. I do think that in the future we will be able to identify a group of therapies that might be specifically good for this chronic inflammation. And then certainly I think presence of these rim lesions might be a way of picking who would benefit from that medication. So in the future. Short answer, John. I think it'll be with us soon.
- [25:54]
John Strum
While we're looking at the future, I've heard you call remyelination and repair the Next Frontier for 2026. What's one trial or technology you're hearing about that you think will finally move us from stopping damage to fixing damage?
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Dr. Daniel Antoneda
Yeah, well, I think the remyelination field right now is really grown and developed. There are a multitude of medications that right now are transitioning from what we call basic science, animal models of ms, moving into actually first in human studies, and some medications that are actually quite advanced. In terms of the clinical trial development, we've seen a lot of promise in this area. And this promise is based on developments in the basic science world where you can actually target cells called oligodendrocytes and see how medications might affect those oligodendrocytes. Oligodendrocytes are the cells that make myelin. And if we can promote these cells to produce more myelin, well, it's natural to think that if you use a medication like that in a patient, we perhaps can build up some myelin that might have been lost, so lots of different compounds. I think what we need to figure out right now is what's the best strategy to test these medications. There's different ways to do it. You can do it in. People have had Ms. For some time, and you look at them because they have a chronic lesion in their optic nerve, you might think about doing it in people who've been recently diagnosed with Ms. With active lesions. My personal opinion is that the earlier you try these therapies, probably right after an inflammatory attack, you'll probably get the most likelihood that you'll be able to potentiate for myelination. But these are all questions that are really good. I will say that I would remain very positive based on the number of medications and the pathways that we've actually discovered. I think that remyelination therapy will be a reality soon.
- [27:51]
John Strum
I always learn so much every time we talk. Dr. Daniel Antoneda, I want to thank you for all you do in the lab, in the clinic to help people living with Ms. Live better with Ms. And thanks so much for talking with me today.
- [28:03]
Dr. Daniel Antoneda
Yeah, thank you, John. It's such a pleasure always to talk with you. And I just have to reflect that the content that you create is so meaningful and impactful, not just for people with ms, but also for us as clinicians. And seeing how you connect is really special.
- [28:18]
Podcast Host / Narrator
One thing a meeting like the Actriums Forum, or really any Ms. Research conference is never short on is expert opinion. Some of the very best Ms. Research scientists and clinicians in the world are on hand to share their work. What is often lacking at Ms. Research conferences are people who are actually living with Ms. That's why I feel very fortunate that Christine Werner Ozug, a member of the RealTalk Ms. Team who lives with MS, was at the ACT Rooms forum. And after the final session, I wanted to get her perspective as a patient on the research that was most important to her. In a moment, you'll hear my conversation with Christine.
- [29:04]
John Strum
The best part of every conference we.
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Attend is when I get to sit down with Christine Werner Ozug, somebody who's part of the RealTalk, Ms. team, somebody who lives with MS, and somebody who has been here at the ACT Rooms forum going through all the sessions, meeting all of the experts. And I think it's always a great opportunity to get the perspective of someone who's living with ms, because frankly, at these conferences, for one reason or another, there are very, very few patients in the room. So, Christine, what did you see?
- [29:40]
Christine Werner Ozug
So I'll start off by saying the theme of the conference is Ms. At a crossroads. And we kind of talked about what that means, and I thought about that, and to me, it means 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. And also looking at treating the entire person and not just what an MRI might show. And I also think that science is evolving to look along the entire Ms. Continuum and that in this conference it was particularly interesting because we saw presentations that were including pediatric onset Ms. All the way to looking at older adult onset Ms. So along the entire Ms. Continuum, but also across the entire Ms. Population, which I thought was really interesting.
- [31:08]
John Strum
We have.
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A lot of people who are sitting at home with relapsing, remitting, secondary progressive, primary progressive, and at least a few of them are probably wondering what do you mean when you say Ms. Continuum?
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Christine Werner Ozug
We had a whole session and panel discussion on the Ms. Continuum, if you will, or what we've been talking about these past couple of years or so are Ms. Course descriptors, which you just listed, or clinical course descriptors or what people know as these categories that they fit into. And the discussion today again brought up, are these still fit for purpose today? And the science, the more we find out about Ms. And the biology of it and the pathophysiology of it, and you know, different biomarkers, not only on mri, but also serum biomarkers, CSF biomarkers, and also taking into consideration what people like me are coming into their appointment saying like, I know you're saying my MRI is okay and but I feel like I'm getting worse. And so taking all of this into consideration, what would new clinical course descriptors look like and what would they include like biomarkers and such to track progression? And how would people fit into these new course descriptors and how would clinicians have those discussions with people like me?
- [33:01]
John Strum
I think the labels that get used today that have been used for the last 30 years, they really relate to clinical presentation. How someone physically is when they walk into that neurologist's office, how fast they can do their 25 foot walk, what their nine hole peg test looks like. All of these factors come into play to determine which bucket you're going to be included in. But as you just pointed out, there are other things happening, things that are happening in the central nervous system that may indicate a very slow but steady kind of progression. For instance, that maybe gets turned off so often and then gets turned back on so often. And that's wholly separate from the inflammatory activity that takes place that today's DMTs are very good at trying to manage. So yes, to your point, I think relapsing Ms. Can largely be managed. Secondary progressive gets really tricky because you only tend to see or to be able to Label secondary progressive Ms. Retrospectively after someone has exhibited a different set of symptoms, a worsening that they hadn't displayed before. So nobody can walk into their doctor's office and show them that they have secondary progressive ms, unless that doctor's been following them a long time, and then he or she can make their own determination. But it still comes down to sort of looking in the rearview mirror. And does that really offer the best kind of care for someone who's living with ms? I think the science is getting to the point where we can do better now. And that's why we've, I think, seen some of the presentations we've seen and heard some of what we're hearing lately about perhaps coming up with new ways to describe Ms. What else caught your eye here?
- [35:13]
Christine Werner Ozug
Well, for what you were just talking about, it just reminded me of two things. One, when Dr. Dan Anteneda presented, he kind of showed what you were talking about. We have this relapsing kind of inflammatory process that goes on, and then we also have this neurodegenerative kind of progressing process that goes on. And they can go on independently of each other, but they also can overlap and go on at the same time. So, like, both can be true. And that is, I think, the tricky part. And like you said, we have the DMTs to treat the one, but we're not so great at treating the other. And they're, and I think they're still trying to figure out why some people have one, not the other, or why some people can have both or, you know, is it also age that, you know, we saw some presentations on age and with aging comes reduced ability to be able to, you know, be able to remyelinate on your own and reduce neuroplasticity. And because I think all of these mechanisms and immunology becomes, you know, an issue as well, because all of these things are so complex. It's, it's, it's not so easy to get a biological and pathophysiological framework quickly. And we want to be able to measure. So what's the best way to measure these things? And that's where we talk about things like serum neurofilament, light chain. We've talked about the DFAP and there's other protein biomarkers that we heard about, but again, they're not ready to be used in the clinical setting. But this is all very exciting because we're moving toward, I think, being able to track progression and also maybe start looking at is somebody starting to progress. So we can start to treat that and also open up new therapeutic targets for progression, which is what our Brancic prize winner for innovation and Ms. Research, Manuel Frise, he was awarded that for his work on the inflammation processes in neurons and the impact that has on death or neurodegeneration. And that's very important for us to understand, because that's what really starts to drive progression.
- [38:20]
John Strum
I think what Dr. Frieza really uncovered in his work is the new concept that when nerve cells are under attack from inflammation during an Ms. Relapse, for instance, they're not passive victims of that attack. Those nerve cells want to fight back against the demyelinating attack. And so I think, as you pointed out, that represents a new way of thinking about how to stop that inflammatory activity, how to beat that demyelinating attack and allow those nerve cells to survive, which means we limit the amount of damage, which means we limit the amount of progression, which means we limit the amount of disability. So, yeah, I think all these things, where they're headed, I think, is toward a more personalized approach, because as we can define Ms. By the different biological mechanisms that are taking place in an individual, you treat those processes, which may be different than what's happening to the next person who's in the waiting room in that neurologist's office. And so it opens the door to really creating personalized treatment plans that are going to stop Ms. For that individual. Slow progression. Stop progression. And in many cases, we're getting a little ahead of ourselves in the future, but the next step is myelin repair and being able to restore some of the function that's already been lost. Somebody described it to me today as we're on the cusp of a lot of really, really good things.
- [40:13]
Christine Werner Ozug
Yes. And that was also the thought I had about us being at this crossroads, or as when you and I were talking, is it more of an inflection point? Because we are on the cusp, I think, of so many things really converging at the right time to be able to make all of these exciting changes and treatments and, you know, with the course descriptors and the biomarkers and the new treatments to stop or slow progression. And I feel like we're just. We're almost there, and we can, you know, keep going with this work and just really make a difference in the lives of people living with Ms. And their families and everything. So it's. It's always very exciting to hear the work that's being done.
- [41:13]
John Strum
So you may have answered the question. I'm about to ask you, but you have a big takeaway from this conference.
- [41:20]
Christine Werner Ozug
I think that people are working very hard and they're working very hard on the right things. Everybody knows that progression is an unmet.
- [41:31]
Dr. Daniel Antoneda
Need.
- [41:33]
Christine Werner Ozug
And particularly with some results. We heard today at the end of the late breaking abstracts, we heard too, we heard an update on some results. They're not final on the Fruxalumab trial, which seems promising so far, but it's still early days. And then we did hear on the phenobrutinib trial, phase three for progressive primary progressive Ms. And you know, if that pans out, I mean, it's the first time in more than a decade that we could have a new drug for primary progressive Ms. Because right now we have Ocrevus. And I applaud that trial. It was a very brave trial, a landmark trial in my opinion, that they tested that BTK inhibitor against Ocrevus and they had good outcomes, 12% risk reduction in disability and another outcome that wasn't specifically a trial endpoint, but I still think a very good outcome. In the nine hole peg test they had a 26% risk reduction in progression compared to Ocrevus on the nine hole peg test, which is important for hand function and dexterity. So that was a big takeaway for me and the hope for people that live with primary progressive Ms. Well, it's.
- [43:15]
John Strum
Funny, your big takeaways are the same as mine. So I'll see you in a few months at the Consortium of Ms. Center's annual meeting.
- [43:24]
Christine Werner Ozug
That sounds great.
- [43:26]
Podcast Host / Narrator
That's going to wrap up this episode of Real Talk Ms. Real Talk Ms. Is powered by the National Ms. Society and you can share this episode of the podcast by letting your friends or family members know that all they have to do is point their web browser@realtalkms.com 442. You'll find that link in today's show notes, so you can easily copy and paste it right into an email or a text. I hope you're planning to join me next week on Real Talk Ms. When we unpack part three of our coverage of the 2026 Actrooms forum from I'm John Strum. Thanks for listening. Stay safe and make healthy choices.
- [44:29]
Dr. Daniel Antoneda
Sam.