Sept. 21, 2026

Episode 473: The National MS Society -- A CEO Briefing with Dr. Tim Coetzee

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Key Takeaways

Dr. Tim Coetzee highlights that the MS community is currently experiencing one of the most promising periods in history for accelerating research and clinical care.
The National MS Society's strategic plan focuses on shortening the diagnostic timeline from years down to mere hours or days through frontline education and digital medical record insights.
A major shift in the MS field is underway, moving away from rigid phenotype labels toward a precision medicine approach that understands MS as a biological continuum.
The International Progressive MS Alliance is actively funding innovative clinical trials, including testing neuroprotective properties of GLP-1 medications to preserve brain health.
Achieving a future where cures exist and MS is ultimately ended requires coordinated collaboration, resources, and bringing all key stakeholders—including patients, researchers, and the FDA—to the table.

Show Notes
Transcript

RealTalk MS is celebrating our ninth anniversary, and we're marking the milestone with a special guest! Dr. Tim Coetzee, President and CEO of the National MS Society, returns to the show for a candid, forward-looking conversation about why today represents one of the most promising moments for advancing MS research and transforming clinical care.

Dr. Tim Coetzee

We're taking a hard look at the game-changers on the horizon: what it will take to shorten the diagnostic journey from years down to mere hours, why it's time to retire outdated disease labels in favor of true precision medicine, and the surprising science behind testing GLP-1s for neuroprotection.

From unlocking massive clinical data sets to fighting for research dollars on Capitol Hill, Tim pulls back the curtain on the Society's strategic plan to end MS once and for all. Pop in your earbuds and join us in celebrating nine years of community and conversation!

We have a lot to talk about! Are you ready for RealTalk MS??!

This Week: Dr. Tim Coetzee briefs us on the National MS Society's strategic priorities and shares his vision of the future of MS care :18

Download the new RealTalk MS app for your iOS and Android smartphone and tablet 1:56

We gave the RealTalk MS website a glow-up! 2:37

Check your congressional representative's grade in the Congressional Healthcare Access Report Card 3:07

Dr. Tim Coetzee discusses the MS Society's strategic priorities and shares his vision of the future of MS care 3:46

Share this episode 37:04

Next week 37:24

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RealTalk MS Episode 473
Guest: Dr. Tim Coetzee

Privacy Policy

Frequently Asked Questions

Who is Dr. Tim Coetzee?

Dr. Tim Coetzee is the President and CEO of the National Multiple Sclerosis Society, where he has spent decades driving research breakthroughs and strategic priorities for the global MS community.

What is the National MS Society's goal for the MS diagnostic timeline?

The National MS Society aims to dramatically shorten the diagnostic journey from the current average of months or years down to mere weeks, days, or even hours through early symptom recognition and biomarkers.

Why is the MS community moving away from terms like relapsing-remitting MS?

Researchers and clinicians are shifting toward understanding MS as a biological continuum rather than rigid categories to better align care with true precision medicine and underlying disease biology.

How are GLP-1 medications being studied in relation to multiple sclerosis?

The International Progressive MS Alliance is funding clinical trials to explore whether specific GLP-1 drugs possess neuroprotective qualities that can protect brain cells and prevent progression.

WEBVTT

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It's September 22nd, and we have something kind of special to talk about today.

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Nine years ago this week, I launched this podcast with a single clear mission.

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To cut through the noise, break down all the scientific jargon,

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and bring the latest in MS research, clinical care, and advocacy directly to

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the people who need it most, in plain, easy-to-understand English.

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Over hundreds of episodes, we've covered groundbreaking clinical trials,

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we've tracked major legislative wins and losses in our nation's capital,

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and shared conversations with the world's leading neurologists and MS researchers.

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But none of that happens in a vacuum. It happens because of a global community

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dedicated to changing what it means to live with multiple sclerosis.

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So I'd like to say thank you to every one of the hundreds of scientists and

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clinicians who have taken time out of what I know are incredibly busy schedules

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to talk with me and share their work with you.

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But most of all, I want to thank each of you for making Real Talk MS the most

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listened-to podcast for the MS community.

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Whether you're a longtime listener or you just found Real Talk today,

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thank you for listening, and thank you for making this podcast a real conversation.

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I respond to every email and voicemail I receive, And it's your suggestions

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that really drive future episodes of the podcast.

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So from the bottom of my heart, thank you for being part of our listener community.

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To mark our ninth anniversary, I have some special announcements.

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First, today we're releasing the Real Talk MS app for your iOS or Android smartphone.

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The app makes staying informed about the latest developments in MS research and care easy.

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The Real Talk MS app will automatically download the latest episode of the podcast.

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You'll be able to save your favorite episodes, and it has a great search function.

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You know, with close to 500 episodes, you need a great search function.

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And I'll be sharing bonus content that will only be available on the app.

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You can download the Real Talk MS app in the Apple App Store and the Google

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Play Store, and you'll find those links in today's show notes.

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I'll also invite you to visit the Real Talk MS website. We've given it a major

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glow up, and I can't wait for you to check it out.

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You'll find all our past episodes, the independent special series we produced,

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like Real Talk MS clinical trials and the MS caregiver conundrum.

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There's video interviews, coverage from all the major MS research conferences,

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and something I'm really excited about, but it's only going to be around for the next 50 days.

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Heading into the midterm elections in the United States, I think it's important

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for you to know how your congressional representatives and senators voted on

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major legislation impacting access to health care.

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So be sure to check out our Congressional Health Care Access Report Card.

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All you have to do is enter your state and you'll see how well your congressional

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representatives and senators did when it came to supporting the health care

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issues that affect you and your family.

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It's an easy way to help you make an informed decision when you cast your vote.

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You'll find all this at the new and improved realtalkms.com.

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You know, I wanted to make sure we had a special guest join me for our ninth anniversary.

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So I invited an old friend of the podcast who first joined me in episode number

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four and has returned several times over the years.

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So I'm devoting this entire episode to my conversation with someone who,

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throughout his decades-long career at the National MS Society has truly been

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a difference maker for the global MS community.

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The president and CEO of the National Multiple Sclerosis Society, Dr. Tim Cutsey.

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And in a moment, we'll get to my conversation with Tim.

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Dr. Tim Kutzee is the president and CEO of the National MS Society,

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and I couldn't think of a better guest to have join me on the ninth anniversary of Real Talk MS.

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Welcome back to the podcast, Tim.

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Jon, it is great to be with you. I didn't realize we were talking about the ninth anniversary.

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You're just reminding me that you and I spoke very early on in that early season.

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Thanks for reminding me that I'm nine years older. Appreciate that, John.

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I'd like to think of it as you being nine years better,

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But to each their own. I'll take that. You'll be very kind. Thank you.

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This past year, we've seen the society adopt a new strategic plan centered around

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intervening at critical moments across an individual's MS journey

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to reduce their fear and feelings of isolation while expanding their sense of empowerment.

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What sort of inputs shape these priorities and what does this shift look like

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in day-to-day operations?

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That's a great question and maybe I can step back and first of all thank you

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for the opportunity to join you today and before getting to your question really,

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get at maybe the moment we're in so I think that.

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It's not overstating things to say that we're in, I think, what is one of the

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most promising periods in the history of MS.

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And as you say, our focus as an organization, this is our 80th anniversary of

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our founding by Sylvia Lowry.

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And our focus is evolving from helping manage a disease that we didn't fully understand to one where,

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it's really a completely different era, where it's, we've got a research community

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that's focused, we've got incredible insights around biology,

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more treatments than ever.

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An incredible amount of innovation, which is what's also shaping the focus of

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the National Mass Society going forward, as your question alludes to.

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And my focus, our focus, isn't just about faster science.

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That is certainly true, but it's ensuring that when you have that faster accelerated

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science that leads to innovations, that those innovations get to the person

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who needs them, that they can access their care, they have the support they need, and,

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that gets us to what I think, I believe we can confidently say is seeing on

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the horizon, truly seeing on the horizon, not over the horizon,

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the notion that we can end MS, which is what really is what animates,

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my work as the CEO of the National MS Society.

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So maybe if I were to step back, I would say that the inputs were looking around

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at the world and asking the question, if we want to end MS.

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What would be the attributes of that world? And what would we need in order to get to that world?

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And for me, I have these four pillars that have anchored how we think about

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that world. And that world is a person can be diagnosed in hours rather than

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the months or years that has characterized things.

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Often, that person can get the right treatment at the right time for wherever

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they are in their MS journey.

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They can have the support and guidance of a community around them.

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And then the last pillar being that this MS diagnosis isn't anything that they

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fear because cures exist to that.

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And what we've been doing is looking at the world, understanding it,

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thinking at these pillars, and then organizing our work,

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around this kind of transformational change, looking at great outcomes today

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while we pursue the cures for tomorrow, moving beyond just managing the disease,

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but to truly changing lives and changing what it means to live with MS,

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both now and the present and the future.

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We've learned that early intervention makes a real difference in long-term quality of life.

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And a major goal of the strategic plan is shortening the diagnostic timeline

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from months or years down to hours or days.

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Are there initiatives underway to equip primary care providers and general neurologists

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to recognize clues for MS, like early-stage biomarkers or even prodromal signals?

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Yeah, so the short answer is yes. That's part of our agenda.

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And I will say, we have seen that getting the diagnosis is getting faster.

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So it used to be, could be three, four years on average for a person to go from

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that first symptom to a diagnosis.

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Now, depending on where you live, and if you're seeing an MS specialist,

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and you have a sort of an average case of how MS shows up, odds are you could

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be diagnosed within three to six months, which is much, much better than years, certainly.

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But we got to do better than that. Weeks to hours is what I'm going for.

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But a key component in that in our healthcare system are those frontline providers.

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The primary care doctor that sees a person has come in because they've been

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dragging their leg or...

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The optician who sees someone who thinks that their eye problems are they need

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to do glasses, but it turns out that there's inflammation that they see.

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They are seeing the earliest clues of MS.

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And so part of the work that we're doing through our health care access team

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and other areas is leveling up the education,

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leveling up those early signs and symptoms so that people understand what are

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those earliest signs and symptoms that point to a person potentially having MS.

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And then beyond that is actually beginning to lay the groundwork for the other

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part of your question is are there ways that we could even pick up clues of MS before,

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the person is even got that clinic what we call a clinical symptom optic neuritis

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or potentially a loop you know having difficulty walking foot drop that's what

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your term prodrome means it's

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are there signs and symptoms of the disease before people even know it.

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And I actually think that we have the clues to that in the electronic medical

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records and in the, in the records from where people are seeing different doctors.

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And there's research to validate this research in Canada, here in the United States and in Germany.

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That has looked at groups of people who go on to get MS and compared them to

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groups of people who don't get MS.

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And if you look at the medical records of those people, you see that the people

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who develop MS start showing these signs. They go to the doctor more frequently.

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They're more frequently touching the healthcare system.

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And this is telling us that there's something going on.

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We don't quite know what the signal is other than they're seeing the doctor

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more, But that's a sign that something's happening.

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And I think long term, the ability for us to then be able to figure out data

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at scale, to be able to say, is there a signature that says that this person, something is going on?

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And the family practice doc says, you've got a few combinations here of things.

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Let's get you with a neurologist and do a screen and see what's happening.

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We're not at that world at this moment in time.

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But I think that's what we're driving towards through our strategic plan.

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The MS field is increasingly moving away from describing MS in rigid phenotype

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categories like relapsing-remitting or secondary-progressive MS

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in favor of understanding MS as a biological continuum driven at least partially

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by compartmentalized neuroinflammation and progression that occurs even in the

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absence of new lesions or relapses.

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How is a society aligning its research funding and clinical guidance with this

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emerging biological perspective?

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Yeah, so that's a really good question. And I think that, let me underscore

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a few things, that this isn't just about changing words or labels.

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You got at it that what we want is to create a future where the care that a

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person is receiving is tailored to what is happening inside their particular body.

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The doctors would call this a precision medicine approach where,

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okay, let's try this treatment for this situation for this amount of time,

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and then we'll measure whether or not it's effective by ordering blood tests

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or images, and we'll see how it goes, and,

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if we need to tweak and tailor, we do this with another combination. Yeah.

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Other diseases, particularly cancer treatment, are seeing this really make a big difference.

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So we're aiming towards that in the context of MS. And as you said,

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our understanding of the biology that's underlying MS disease activity in a

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particular person has become very sophisticated.

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But the words we use to describe MS haven't evolved with that.

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And your audience knows about the terminology of relapsing remitting MS or relapsing

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MS as it's more frequently called now or primary progressive MS or secondary progressive MS.

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We've also got new terms like radiologically isolated syndrome creeping into the vocabulary.

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Words like smoldering MS are in the vocabulary.

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All of these are ways of.

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A clinician, which is why they were created, talking to the person in front

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of them saying, you've got MS, here's what it's appearing as,

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here's how we're going to manage the different aspects of the disease,

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and some of the labels apply in a certain context, and then a person might later

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on switch over to a different one.

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And it creates this illusion that somehow you've got different distinct types

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of MS. There isn't different types of MS. There's one disease,

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it's called multiple sclerosis.

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How it shows up is what varies within a person.

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And the thing is, as someone who lives in the world of words,

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words matter. Words are sticky. Descriptors are sticky.

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And the original descriptors, if I could just take each diversion into history,

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were created and were developed in the mid-1990s.

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This was work that was done by the National MS Society, because the doctors

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at the time were using a wide range of words to describe MS.

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And they were finding that one doctor described it one way, a different doctor

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could describe it another way.

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You had groups of doctors talking about it in the third or fourth way.

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And there was really a need, as we were entering an era, to design clinical

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trials and to do research to actually come up with a coherent.

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Paradigm or way of describing MS and not so much to create boxes,

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but to provide the vehicle by which a doctor could have a conversation with their patient.

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That was the original intent. And then they got adopted into approval statements

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by the FDA and designing clinical trials and a whole host of things downstream.

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And they have served their purpose in many respects when we did not understand

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the biology of the disease as we do today.

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But now, 30 years later, course descriptors were originally introduced in 1996,

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30 years later, our understanding of MS is much deeper.

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The description by which we talk about the disease is much, much deeper.

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There are ways of understanding the treatment and how treatment affects disease

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per course and progression. And there's an evolution of diagnostic standards.

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Our words haven't kept pace. And so now we have a need to be able to evolve

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how a doctor talks to a particular patient about their disease.

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But there's also an important thing that has to be respected.

00:16:03.160 --> 00:16:08.770
And you know this, you and I have talked about this, is that words also do matter.

00:16:09.210 --> 00:16:15.020
And that if one is going to propose shifting from terminology that is very sticky,

00:16:15.020 --> 00:16:21.110
as the marketers would call it, things like relapsing or progressive, are sticky terms.

00:16:21.110 --> 00:16:24.730
If you're going to say, we're going to not use those, you've got to replace

00:16:24.730 --> 00:16:28.540
them with something else that is just as sticky, and also.

00:16:29.470 --> 00:16:35.060
Understand what are the implications for the people living with MS who organized,

00:16:35.810 --> 00:16:37.720
everything according to this terminology.

00:16:37.720 --> 00:16:43.780
And it is really important to me that when we talk about evolving our language,

00:16:43.780 --> 00:16:48.290
we do it with an understanding of what will it mean for the person living with the disease?

00:16:48.810 --> 00:16:53.320
What will it mean for their family to introduce this and to have a very methodical

00:16:53.320 --> 00:16:56.650
approach that takes us towards what we need,

00:16:57.270 --> 00:17:02.510
but also brings us back and anchors to the person at the center,

00:17:02.700 --> 00:17:04.610
right? So those are some of what we're doing.

00:17:05.300 --> 00:17:08.350
And I'll say the National Mass Society is very involved with driving that work

00:17:08.350 --> 00:17:10.440
internationally, bringing the community together.

00:17:11.360 --> 00:17:15.730
But at the end of the day, we're about people. And this is about how it affects people.

00:17:17.570 --> 00:17:21.060
You know, when it comes to updating the way that MS is described,

00:17:21.060 --> 00:17:24.680
it's something that's going to impact a lot of major stakeholders,

00:17:24.990 --> 00:17:29.240
including the pharmaceutical companies, insurance companies, the FDA,

00:17:29.800 --> 00:17:32.250
Medicare, the clinician community,

00:17:32.250 --> 00:17:36.200
the research community, and the patient and caregiver community.

00:17:37.280 --> 00:17:43.020
Making a change affecting any one of those stakeholder groups would by itself be a heavy lift.

00:17:43.550 --> 00:17:45.940
So how do we get everyone to the table?

00:17:46.580 --> 00:17:50.380
And what do you see as a National MS Society's role in this work?

00:17:50.560 --> 00:17:54.860
Yeah. So I think, to your point, we need to have all of the interest holders at the table.

00:17:55.260 --> 00:17:59.480
Part of our work was to convene a working group that you were part of to really

00:17:59.480 --> 00:18:03.230
think through what would be the roadmap for change, what are the things that

00:18:03.230 --> 00:18:07.930
need to be preserved, what needs to change, how do we evolve towards this future work.

00:18:08.330 --> 00:18:12.780
And so we've had this group of leaders working together. We just published our

00:18:12.780 --> 00:18:19.470
latest paper that outlined a roadmap for evolving from where we are today to where we need to go.

00:18:20.020 --> 00:18:23.090
And now the next phase is to say, okay, we have this roadmap.

00:18:23.410 --> 00:18:27.240
Now we need to start convening the community, working together,

00:18:27.530 --> 00:18:30.640
identifying what's the first thing we would do, and then the second thing we

00:18:30.640 --> 00:18:32.220
would do, and then the third thing we would do,

00:18:32.630 --> 00:18:36.650
and understanding the implications for interest holders like the FDA,

00:18:37.030 --> 00:18:39.950
pharmaceutical companies, people affected by MS.

00:18:39.950 --> 00:18:45.160
And our ambition is to create a table where all of those voices and perspectives are reflected.

00:18:46.350 --> 00:18:51.600
And also helping foster the innovation needed to answer some of these questions.

00:18:52.080 --> 00:18:56.900
Because ideally, you'd like to have a series of easy to administer tests that

00:18:56.900 --> 00:19:00.770
would give you the data you need that can tell you, OK, a person is here and

00:19:01.080 --> 00:19:02.510
this is where they are on their journey.

00:19:02.510 --> 00:19:06.130
Let's try this you'd want to have another test that assesses things a little

00:19:06.130 --> 00:19:10.810
further on to give you a really holistic insight of what's happening inside the person.

00:19:12.040 --> 00:19:15.710
I'd love to tell you that we have those today. We have a couple.

00:19:16.270 --> 00:19:20.990
We don't. And so this is the kind of innovation that we, through the society

00:19:20.990 --> 00:19:25.060
and our collaborative partners, need to do is that when we see gaps,

00:19:25.060 --> 00:19:28.750
we start to foster the innovation needed in order to deliver that.

00:19:29.200 --> 00:19:34.260
And that's the work we're trying to do. It's like the International Progressive

00:19:34.260 --> 00:19:36.560
MS Alliance that I know you're very passionate about.

00:19:36.950 --> 00:19:41.880
It's hard work bringing lots of people to the table. It requires inordinate amounts of patience.

00:19:42.300 --> 00:19:47.670
Also, very frankly, it also needs money. It needs resources because at some

00:19:47.670 --> 00:19:51.220
point you need to start investing in the science, investing in the development,

00:19:51.220 --> 00:19:56.050
investing in the communications, and that all takes people and resources.

00:19:56.330 --> 00:19:59.780
And so that's also part of what we have to rally the community to say,

00:19:59.780 --> 00:20:01.120
let's make these investments.

00:20:01.760 --> 00:20:06.790
Progressive MS remains an urgent unmet need. Are there updates from the International

00:20:06.790 --> 00:20:11.260
Progressive MS Alliance or recent experimental medicine trials that give you

00:20:11.260 --> 00:20:15.290
confidence that we're closing in on viable new therapies for

00:20:15.640 --> 00:20:18.070
myelin repair or neuroprotection?

00:20:18.840 --> 00:20:22.520
Yeah, so great question. And as you say, progressive MS is near and dear to

00:20:22.520 --> 00:20:24.610
my heart, as I know it is to yours.

00:20:25.530 --> 00:20:29.860
I like to think about the moment we're in, as if you were to describe the first

00:20:29.860 --> 00:20:34.300
era of MS therapy development, it was always, it was focused very much on relapses,

00:20:35.320 --> 00:20:36.520
controlling information.

00:20:36.910 --> 00:20:40.240
But now our next generation needs to focus on progression, for sure,

00:20:40.240 --> 00:20:44.410
without question. And so that's where work like the Alliance and the MS organizations

00:20:44.410 --> 00:20:47.280
around it are really focused.

00:20:48.450 --> 00:20:52.860
And I will say, it's important that we take stock of the fact that we do have,

00:20:53.530 --> 00:20:58.300
treatments for progressive MS. We've got a couple that are approved for primary progressive MS.

00:20:58.860 --> 00:21:03.360
There's some excitement that there might be some additional ones on the horizon

00:21:03.360 --> 00:21:09.310
soon, potentially, that could be beneficial, that might be approved by the FDA

00:21:09.310 --> 00:21:11.650
soon. I know there's some that are already approved in Europe.

00:21:12.340 --> 00:21:18.240
And so we are making progress. And I often, when I get the question,

00:21:18.240 --> 00:21:22.780
what seems like in a very halting kind of progress, I will say the era of treating

00:21:22.780 --> 00:21:26.720
relapsing MS started with one treatment, beta-seron in 1993.

00:21:27.260 --> 00:21:31.520
And then we had successive treatment development after treatment development.

00:21:31.520 --> 00:21:32.480
So you got to start somewhere.

00:21:32.770 --> 00:21:36.360
We started with Ocrevus. We now have a few others on their way.

00:21:36.730 --> 00:21:40.680
So we're excited about that. And I think within the context of the Alliance,

00:21:40.680 --> 00:21:43.590
what we're continuing to focus in on is.

00:21:44.750 --> 00:21:48.970
What are the areas of unmet need? So you touched on one of the areas of unmet

00:21:48.970 --> 00:21:53.370
need of treating what we call neuroprotection, preserving the brain,

00:21:53.370 --> 00:21:55.060
preventing damage from happening.

00:21:55.600 --> 00:22:02.260
And we actually are excited that we're funding a clinical trial of a GLP-1 these

00:22:02.260 --> 00:22:06.490
days. Everybody knows what a GLP-1 is. GLP-1 and mRNA. Everyone seems to know

00:22:06.490 --> 00:22:08.730
what those two things are now.

00:22:09.020 --> 00:22:14.430
But it's a GLP-1 drug, not one of the ones that you see advertised, but another one.

00:22:14.940 --> 00:22:19.260
That was invented by another company. And we're funding a clinical trial to

00:22:19.260 --> 00:22:23.630
explore whether or not it has the ability to preserve and protect the brain.

00:22:23.930 --> 00:22:28.920
There has been biology that showed that, yes, GLP-1s work in the brain and that

00:22:28.920 --> 00:22:32.900
they're actually able to protect brain cells.

00:22:32.900 --> 00:22:37.050
And so we're actually evaluating that as part of our work within the context

00:22:37.050 --> 00:22:39.850
of the Progressive MS Alliance. So excited to share that.

00:22:40.210 --> 00:22:45.610
We're also exploring using different imaging tools to be able to identify how

00:22:45.610 --> 00:22:48.350
our treatment's working in the context of progressive MS.

00:22:48.710 --> 00:22:54.430
And then also importantly, using our platform to make resources available for

00:22:54.430 --> 00:22:58.930
the community to be able to accelerate research. And we recently were able to

00:22:58.930 --> 00:23:02.900
announce the establishment of what we call our Community Imaging Data Resource.

00:23:03.920 --> 00:23:07.800
And what this is, it's a unique collection,

00:23:08.490 --> 00:23:14.510
of MRI images and all the clinical data from the major MS clinical trials involving

00:23:14.510 --> 00:23:21.050
progressive MS, data from more than 14,000 people who participated in clinical trials.

00:23:21.050 --> 00:23:26.380
So an enormous resource because for each person, you have their MRI images,

00:23:26.380 --> 00:23:29.720
how they did on the treatment, all sorts of clinical information.

00:23:29.980 --> 00:23:35.000
It's a goldmine of data that can help us understand progression,

00:23:35.000 --> 00:23:38.830
help us understand imaging, help us figure out if we apply AI,

00:23:38.830 --> 00:23:41.970
can we develop tools to predict how a person is doing.

00:23:42.350 --> 00:23:45.790
And we were able to use the convening power of the Progressive MS Alliance to

00:23:45.790 --> 00:23:51.290
bring all the people that held those data sets together to put them into one

00:23:51.290 --> 00:23:55.330
place and then to make them available freely to the community.

00:23:55.330 --> 00:24:00.690
So very excited by what that means. And I will say the Progressive MS Alliance isn't standing still.

00:24:00.690 --> 00:24:04.690
We're in the midst of identifying and refining our scientific strategies.

00:24:04.690 --> 00:24:08.550
So hopefully in about six or seven months, I can rejoin your show and share

00:24:08.550 --> 00:24:11.810
a bit about the next set of directions for the Progressive MS Alliance.

00:24:12.600 --> 00:24:16.830
As we've seen evidence solidify around the role of the Epstein-Barr virus as

00:24:16.830 --> 00:24:22.050
a trigger for MS, how close are we to seeing viable EBV prevention trials?

00:24:22.310 --> 00:24:26.780
And what role is the society playing in advancing preventative science?

00:24:27.160 --> 00:24:32.520
Yeah, I agree with you. I think EBV as a potential trigger for the disease is

00:24:32.520 --> 00:24:37.020
certainly something that the data has really gotten strong and persuasive around.

00:24:37.670 --> 00:24:41.920
And we have actually started to have conversation thinking around how would

00:24:41.920 --> 00:24:47.760
you do a clinical trial, potentially a vaccine against EBV that prevents MS.

00:24:48.040 --> 00:24:52.160
And the thing about EBV is, Epstein-Barr virus, is this virus,

00:24:52.160 --> 00:24:59.140
besides causing mono, infectious mononucleosis, which college kids and soldiers and other people get.

00:25:00.080 --> 00:25:04.660
Which potentially that infection leaves one susceptible to MS, does other things.

00:25:04.660 --> 00:25:09.830
It causes some cancers. It has other impacts. So there is actually an interest

00:25:09.830 --> 00:25:15.600
in developing a vaccine against it because of its effect in these other areas.

00:25:15.810 --> 00:25:18.800
It's associated with a form of cancer called nasopharyngeal,

00:25:18.800 --> 00:25:25.010
cancer of the nasal passages. And so there is actually good reason and good interest around that.

00:25:25.550 --> 00:25:31.110
But the challenge around doing a trial of whether or not an EBV vaccine prevents

00:25:31.490 --> 00:25:35.180
onset of MS is you have to think about the time horizon.

00:25:35.740 --> 00:25:41.130
So if you were to give a vaccine to someone, say, before they go to college,

00:25:41.630 --> 00:25:48.050
so at the age of 18 or so, and then you'd have to follow them over a really

00:25:48.050 --> 00:25:50.090
long time to see, do they get MS?

00:25:50.090 --> 00:25:54.130
Don't they get MS? You have to do that on a sufficiently large enough population of people.

00:25:54.770 --> 00:25:58.320
If you do it the conventional way to be able to understand what matters.

00:25:58.320 --> 00:26:01.230
So that's a pretty daunting proposition, I would say.

00:26:01.230 --> 00:26:04.950
Even if you could figure out how to make a vaccine, figure out how to capture

00:26:04.950 --> 00:26:08.790
it, because that's the other tricky part for your audience is that building

00:26:08.790 --> 00:26:12.650
a vaccine requires a factory and a company that's prepared to do it.

00:26:12.650 --> 00:26:15.820
So there's some logistical hurdles that need to be overcome there.

00:26:15.820 --> 00:26:19.010
But let's say you figure out those logistical hurdles.

00:26:19.320 --> 00:26:21.780
There's still the design of the trial.

00:26:22.590 --> 00:26:25.630
And actually, my colleague, Bruce Bebo, our Chief Research and Medical Affairs

00:26:25.630 --> 00:26:29.520
Officer, partnered with the University of Washington School of Public Health

00:26:29.850 --> 00:26:31.140
to actually work on this.

00:26:31.140 --> 00:26:36.040
We published a paper that outlined our thinking around what would be required

00:26:36.040 --> 00:26:39.980
to do a clinical trial of a preventative strategy.

00:26:40.180 --> 00:26:43.350
And the good news is that there are ways to enrich it so that you can find the

00:26:43.770 --> 00:26:47.390
potential people who have higher susceptibility and follow them over time.

00:26:47.820 --> 00:26:50.170
But it laid the groundwork for thinking around this.

00:26:51.130 --> 00:26:55.350
And the good news is that I know that there are different, larger companies

00:26:55.350 --> 00:27:00.090
in the sector that have an interest in vaccine strategies that are turning their attention to that.

00:27:00.090 --> 00:27:05.630
I won't name drop because these programs come and go, but I will say that there

00:27:05.630 --> 00:27:10.860
is considerable interest and we are very supportive around thinking through that with people.

00:27:11.180 --> 00:27:15.410
Because I think it would be remarkable if we could figure out how to prevent

00:27:15.410 --> 00:27:17.780
the onset of MS using a vaccine strategy.

00:27:18.540 --> 00:27:23.500
Beyond disease-modifying therapies, where does research on non-pharmacological

00:27:23.500 --> 00:27:27.910
interventions like exercise, diet, cognitive rehabilitation,

00:27:27.910 --> 00:27:32.410
and mental health, where do they fit into the society's strategic vision?

00:27:32.810 --> 00:27:37.360
So all an important part of our portfolio because, and I think this is one of

00:27:37.360 --> 00:27:42.630
the things that our approach to managing MS has evolved so much.

00:27:42.630 --> 00:27:46.300
We used to focus in on getting an early diagnosis, start a disease-modifying

00:27:46.300 --> 00:27:49.410
treatment, but things like diet, nutrition, exercise, comorbidities,

00:27:49.720 --> 00:27:52.580
mental health, we're all, yeah, those are some other things.

00:27:52.580 --> 00:27:56.360
Yeah, do them if you want, but there's not, wasn't necessarily a point of emphasis.

00:27:56.850 --> 00:28:03.480
Now, very much a point of emphasis. We know that nutrition is an important part

00:28:03.480 --> 00:28:05.970
of living well and ensuring that.

00:28:06.820 --> 00:28:09.720
Be able to be strong and healthy as one lives with MS.

00:28:09.930 --> 00:28:15.030
Addressing comorbidities such as smoking or other hypertension,

00:28:15.030 --> 00:28:20.250
other aspects that could also create illness in the body that could amplify,

00:28:20.750 --> 00:28:22.580
the challenges associated with MS.

00:28:23.150 --> 00:28:28.080
We also know that MS can have an impact on mental health and well-being.

00:28:28.340 --> 00:28:32.580
Depression and mental health comorbidities and mental health challenges are

00:28:32.580 --> 00:28:38.960
among the highest of the comorbidities and disease conditions that go alongside MS in the community.

00:28:38.960 --> 00:28:44.010
So managing those is really critical and investing in research and to address

00:28:44.010 --> 00:28:46.440
all those is all part of our portfolio.

00:28:46.840 --> 00:28:52.940
I see it as just as essential to invest in that as it is to try to get at the

00:28:52.940 --> 00:28:56.540
cause and figuring out the new treatments for say things like myelin repair.

00:28:57.060 --> 00:29:00.430
And it's really vital that we continue to grow and sustain that.

00:29:00.860 --> 00:29:05.120
It is part of our work within the context of the Progressive MS Alliance has

00:29:05.120 --> 00:29:08.610
been to grow the number of researchers and develop a pipeline,

00:29:08.610 --> 00:29:11.530
as we call it, of people working in this area.

00:29:11.970 --> 00:29:15.420
So it is a vital part, both of the science part of our equation,

00:29:15.420 --> 00:29:18.790
but also about how we support people through the journey of MS,

00:29:18.790 --> 00:29:21.560
because so many of these interventions,

00:29:22.280 --> 00:29:26.580
become really meaningful when a person can access them, being able to talk to

00:29:26.580 --> 00:29:30.590
a therapist, being able to participate in rehabilitative medicine.

00:29:31.490 --> 00:29:38.150

Episode 473: The National MS Society -- A CEO Briefing with Dr. Tim Coetzee

Key Takeaways

Frequently Asked Questions

Who is Dr. Tim Coetzee?

What is the National MS Society's goal for the MS diagnostic timeline?

Why is the MS community moving away from terms like relapsing-remitting MS?

How are GLP-1 medications being studied in relation to multiple sclerosis?

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