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.
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And you know this, you and I have talked about this, is that words also do matter.
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And that if one is going to propose shifting from terminology that is very sticky,
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as the marketers would call it, things like relapsing or progressive, are sticky terms.
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If you're going to say, we're going to not use those, you've got to replace
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them with something else that is just as sticky, and also.
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Understand what are the implications for the people living with MS who organized,
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everything according to this terminology.
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And it is really important to me that when we talk about evolving our language,
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we do it with an understanding of what will it mean for the person living with the disease?
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What will it mean for their family to introduce this and to have a very methodical
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approach that takes us towards what we need,
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but also brings us back and anchors to the person at the center,
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right? So those are some of what we're doing.
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And I'll say the National Mass Society is very involved with driving that work
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internationally, bringing the community together.
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But at the end of the day, we're about people. And this is about how it affects people.
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You know, when it comes to updating the way that MS is described,
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it's something that's going to impact a lot of major stakeholders,
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including the pharmaceutical companies, insurance companies, the FDA,
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Medicare, the clinician community,
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the research community, and the patient and caregiver community.
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Making a change affecting any one of those stakeholder groups would by itself be a heavy lift.
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So how do we get everyone to the table?
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And what do you see as a National MS Society's role in this work?
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Yeah. So I think, to your point, we need to have all of the interest holders at the table.
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Part of our work was to convene a working group that you were part of to really
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think through what would be the roadmap for change, what are the things that
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need to be preserved, what needs to change, how do we evolve towards this future work.
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And so we've had this group of leaders working together. We just published our
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latest paper that outlined a roadmap for evolving from where we are today to where we need to go.
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And now the next phase is to say, okay, we have this roadmap.
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Now we need to start convening the community, working together,
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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
All of those are critical to our ability to approach the challenge of life with
00:29:38.150 --> 00:29:41.590
MS holistically, which is what I think we want for everyone.
00:29:42.440 --> 00:29:46.330
Having breakthrough therapies isn't helpful if patients can't access them.
00:29:46.900 --> 00:29:52.000
So what steps is a society taking to eliminate disparities in diagnosis and
00:29:52.000 --> 00:29:57.260
access to comprehensive specialty care across underserved and rural communities?
00:29:57.980 --> 00:30:01.660
Yeah, so those are all part of an overarching agenda within our advocacy and
00:30:01.660 --> 00:30:03.220
healthcare access team.
00:30:03.220 --> 00:30:09.140
And it's part of our work to, one, highlight the challenges that people encounter
00:30:09.140 --> 00:30:12.260
in accessing their treatments or getting access to a doctor.
00:30:12.260 --> 00:30:16.960
So every year as part of our advocacy agenda, we're highlighting the importance
00:30:16.960 --> 00:30:19.030
of affordability, access to treatment.
00:30:19.300 --> 00:30:22.600
There's no point in having treatments if people can't access them or can't afford
00:30:22.600 --> 00:30:25.690
them, but they also need to be able to have access to doctors.
00:30:26.010 --> 00:30:30.270
And so we invest in training doctors to get MS specialists.
00:30:30.550 --> 00:30:34.820
Over the last few years, we've been partnering with a great partner,
00:30:34.820 --> 00:30:40.150
Genentech, on a project looking at neurology deserts and understanding what
00:30:40.150 --> 00:30:44.790
it looks like for MS to be delivered in rural settings and understanding,
00:30:45.660 --> 00:30:49.970
how do people in parts of America that don't necessarily have a neurologist
00:30:49.970 --> 00:30:55.110
as close to them as, say, in large or more urban areas, navigate this disease.
00:30:55.330 --> 00:30:59.020
And also understanding that sometimes you even can have care deserts within
00:30:59.020 --> 00:31:00.670
a highly dense urban area.
00:31:00.940 --> 00:31:04.330
You could have no neurologists within an hour of someone, or it could be two
00:31:04.330 --> 00:31:09.000
hours by multiple to get to a doctor, which can exhaust people.
00:31:09.330 --> 00:31:14.590
And so understanding the geographic landscape of where are the doctors,
00:31:14.590 --> 00:31:21.220
how long does it take for people to get them has been part of our work to really then begin to hone in on.
00:31:22.220 --> 00:31:26.490
How does one address the systemic challenges that get in the way?
00:31:26.930 --> 00:31:30.400
And it's not as simple as saying more doctors shouldn't go to rural America.
00:31:30.700 --> 00:31:33.450
That is, yes, a desirable goal.
00:31:33.820 --> 00:31:37.430
Challenge we have is we're not producing enough doctors in this country where
00:31:37.430 --> 00:31:40.920
people aren't choosing neurology as a specialty in this country.
00:31:41.200 --> 00:31:45.310
Or it's not just enough to put an MS specialist inside a system.
00:31:45.710 --> 00:31:50.700
That MS specialist actually needs a supportive system that will support all the work they need.
00:31:50.950 --> 00:31:55.110
They need the MRIs, they need the nurses, they need to have the facilities to
00:31:55.110 --> 00:31:56.940
do infusions of the treatments.
00:31:57.380 --> 00:32:02.670
It actually takes an ecosystem to have an MS center. It's not just about having a doctor.
00:32:02.960 --> 00:32:08.050
And so I think all of those are part of a holistic approach that we're taking
00:32:08.050 --> 00:32:11.970
through our advocacy and healthcare access work and our medical affairs works
00:32:11.970 --> 00:32:14.660
to really understand the journey, understand,
00:32:15.680 --> 00:32:18.560
how systems need to evolve to get people better care.
00:32:19.220 --> 00:32:24.240
Speaking of advocacy, in this era of tight and unpredictable federal budgets,
00:32:24.240 --> 00:32:29.110
how is the society working to ensure robust funding for the National Institutes
00:32:29.110 --> 00:32:33.020
of Health and the MS Research Program at the Department of Defense?
00:32:33.720 --> 00:32:37.690
You're right. And there was some unpredictability last year when the MS Research
00:32:37.690 --> 00:32:42.960
Program was unilaterally cut as part of work with part of one of the legislation.
00:32:42.960 --> 00:32:46.810
And good news is we were able to restore that back to $15 million this year.
00:32:46.810 --> 00:32:51.140
So that was a real win for all of our advocates. And we're working very closely
00:32:51.140 --> 00:32:55.290
now with congressional champions to be able to do that.
00:32:55.600 --> 00:32:58.650
And I would say, John, it is the same tried and true work.
00:32:59.180 --> 00:33:03.580
It's about relationships, relationships, relationships. And so our advocacy
00:33:03.580 --> 00:33:09.710
team is building relationships with the key influential legislators on Congress up on Capitol Hill,
00:33:10.190 --> 00:33:14.630
but also our activists out in the field, engaging with their representatives
00:33:14.630 --> 00:33:18.040
to let them know how important it is to support MS.
00:33:19.030 --> 00:33:23.820
And it is a long game that we're playing here, and it's not like you get a win
00:33:23.820 --> 00:33:25.270
one year and you can just sit back.
00:33:25.650 --> 00:33:30.820
Being engaged in the political process, being engaged in keeping your priorities
00:33:30.820 --> 00:33:35.860
front and center is something you have to come back to every single year,
00:33:36.260 --> 00:33:39.430
every single month, because it's too easy.
00:33:39.430 --> 00:33:43.750
The minute you get complacent, something in our environment will come in and obscure it.
00:33:43.750 --> 00:33:47.380
And so we keep telling the stories, keep highlighting people,
00:33:47.380 --> 00:33:53.080
keep building relationships so that we can ensure that the agenda for solving
00:33:53.080 --> 00:33:56.400
MS is high on that over legislators.
00:33:56.750 --> 00:34:00.690
But also importantly, something that I'm really passionate about is keeping
00:34:00.690 --> 00:34:06.560
the agenda for the importance of discovery science, the blue sky work that NIH
00:34:06.560 --> 00:34:09.140
makes possible is so critical.
00:34:09.410 --> 00:34:16.020
So many of the advances that we take for granted today in medical care,
00:34:16.880 --> 00:34:23.480
had their origin in research that seemed a bit obscure, but led to a breakthrough
00:34:23.480 --> 00:34:26.170
that then had a transformational effect in care.
00:34:26.960 --> 00:34:30.200
And that's the challenge. You don't know what the thing you invest in today
00:34:30.200 --> 00:34:32.520
might be that transformational thing for the future.
00:34:32.910 --> 00:34:36.470
And that's why it's really important that we sustain NIH, that some of that
00:34:36.470 --> 00:34:43.220
blue sky innovation discovery work can make it possible and can become part of the future.
00:34:43.510 --> 00:34:46.930
You know, today's investments become tomorrow's cures. It's really that simple.
00:34:47.610 --> 00:34:51.510
Tim, when you look across the research pipeline, clinical advances,
00:34:51.510 --> 00:34:56.230
and community resources over the next three to five years, what gives you the
00:34:56.230 --> 00:34:59.910
greatest hope for what an MS diagnosis will look like in the future?
00:35:00.560 --> 00:35:06.450
Yeah, so I think if we can develop some tools that can predict and can identify
00:35:06.450 --> 00:35:12.210
those earliest signs, let's say this person might be having MS,
00:35:12.870 --> 00:35:17.550
we can then get them into a doctor, get a specialist to look at them and diagnose,
00:35:17.550 --> 00:35:20.860
yes, you have MS or no, you don't, give you clarity, peace of mind.
00:35:21.510 --> 00:35:26.350
And then we can start talking about managing the disease over a lifespan.
00:35:26.350 --> 00:35:29.830
And this is where the good news is we have treatments today,
00:35:30.100 --> 00:35:33.560
but I believe we need to continue to focus on getting new,
00:35:34.060 --> 00:35:38.040
better, effective treatments that can manage this disease over a lifetime,
00:35:38.430 --> 00:35:44.620
which are also highly safe and effective such that it brings MS down to not
00:35:44.620 --> 00:35:47.660
even being a noticeable part of their life.
00:35:48.160 --> 00:35:52.260
Now, what I'm talking about is very future-focused. We also can't lose sight
00:35:52.260 --> 00:35:56.400
of the fact that there are people living today who will not have the benefit
00:35:56.400 --> 00:36:01.580
of some of those incredible advances and MS has robbed them of so much.
00:36:01.730 --> 00:36:07.430
And this is where our supportive programs, other types of medical interventions,
00:36:07.430 --> 00:36:10.430
restorative interventions also need our focus.
00:36:11.420 --> 00:36:15.410
Because there are people living with MS today for whom the disease has taken
00:36:15.410 --> 00:36:19.360
so much. So we cannot lose sight of that as we push towards this future.
00:36:19.820 --> 00:36:23.800
But to me, those are all the part of the portfolio of the work of the National
00:36:23.800 --> 00:36:28.230
MS Society that I believe supporters like you and so many others make possible.
00:36:28.520 --> 00:36:32.640
Taking that holistic approach will also mean that we bring cures to everybody.
00:36:33.450 --> 00:36:38.340
Dr. Tim Kutze, I want to thank you for all the National MS Society does in supporting
00:36:38.340 --> 00:36:43.020
clinicians, funding research, and keeping people living with MS and their care
00:36:43.020 --> 00:36:45.260
partners at the center of all its work.
00:36:45.800 --> 00:36:49.640
And thanks so much for joining me to celebrate nine years of Real Talk MS.
00:36:50.110 --> 00:36:52.330
Jon, thank you. It's great to be with you and your audience,
00:36:52.330 --> 00:36:54.910
and I look forward to getting with you again at year 10.
00:36:55.680 --> 00:37:00.100
That's going to wrap up this nine-year anniversary episode of Real Talk MS.
00:37:00.490 --> 00:37:05.750
Real Talk MS is powered by the National MS Society, and you can share this episode
00:37:05.750 --> 00:37:09.590
of the podcast by letting your friends or family members know that all they
00:37:09.590 --> 00:37:13.440
have to do is point their web browser at realtalkms.com slash
00:37:14.170 --> 00:37:16.160
473.
00:37:16.830 --> 00:37:21.000
You'll find that link in today's show notes so you can easily copy and paste
00:37:21.000 --> 00:37:23.380
it right into an email or a text.
00:37:24.240 --> 00:37:29.460
Imagine for a moment that you're recently diagnosed with MS and your symptoms are quite mild.
00:37:30.100 --> 00:37:35.240
But you're a single mom, and you want to be responsible when it comes to planning for the future.
00:37:35.990 --> 00:37:40.310
And you worry that if your MS progresses and you develop mobility issues,
00:37:40.620 --> 00:37:43.250
the home you're living in won't really work for you.
00:37:44.230 --> 00:37:48.730
So you decide to build a house that will be 100% accessible,
00:37:49.190 --> 00:37:52.540
because if you wait until you need that kind of accommodation,
00:37:53.000 --> 00:37:55.430
well, it'll be too late to do anything about it.
00:37:56.180 --> 00:38:02.900
Oh, and by the way, you're not an architect, and you know virtually nothing about building a house.00:38:03.670 --> 00:38:06.740
Well, that's exactly where Sarah Timmerman found herself.00:38:07.260 --> 00:38:10.640
So she launched the House That MS Built project.00:38:11.120 --> 00:38:16.200
Next week, as we begin year 10 of Real Talk MS, we'll meet Sarah.00:38:16.770 --> 00:38:20.050
She's a force, and you won't want to miss hearing her story.00:38:21.140 --> 00:38:27.630
I'm Jon Strum. Thanks for listening. Stay safe and make healthy choices.
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