Welcome to The Raw Nerve, the official podcast of MS Australia, a conversation space for all things multiple sclerosis.
Join us for news and views on the latest research, treatments and advocacy efforts, as well as candid and informative interviews with our community, those living with MS, and their families and carers, together with leading clinicians, researchers, and advocates.
ROHAN GREENLAND:
Welcome to the Raw Nerve. And today, we’ve got a really exciting episode that’s going to focus on a globally significant and potentially important milestone in the history of multiple sclerosis research. I’ve got with me today, Tim Coetzee. Tim is the Chief Advocacy, Services, and Science Officer for the National MS Society. It’s a long title, but a very, very important job. And also joining us today is our Head of Research, Dr. Julia Morahan. So, a big welcome to you both. And today, we’re really going to focus on a major summit that is going to take place in New York in early May, and also talk about this important document that has the agreement of a very large number of globally important MS research organizations, and that’s Pathways to Cures.
So, I’m going to start by inviting Tim to tell us a bit about his role with the NMSS. The Americans, of course, are the largest of the MS societies in the world and pump more money into research than anyone else. They’re the powerhouse of MS research, but also have provided extraordinary strategic leadership in this space, working very closely with the other major players around the world, including the Australians. And we’re delighted to have you here, Tim. Tell us a bit more about your specific role.
TIM COETZEE:
Certainly. Thank you, Rohan. It’s great to be with you and Julia and your guests and your audience, I should say. So, my role at the National MS Society in the United States is to provide the leadership, as you describe it, for several of the important functions that we have as an organization. And that’s in advocating for public policies for people to have better access to services and healthcare and ensuring that they can get the treatments they need. Providing supportive services through educational programs, and really meeting people where they are and the needs they have in terms of living and managing through MS. And then obviously, the scientific role in terms of guiding the global research programs at the National MS Society has actually had, almost since our founding in 1945, we funded our first research grant in the late 1940s, I believe it was 1947, and have funded science consistently since then.
TIM COETZEE:
And so have been proud to be a part of many global initiatives, including with MS Australia on a number of programs. My background is I originally was an MS researcher studying quite a bit of the structure and function of the myelin that’s involved in MS. And so being on a show talking about the raw nerve is very close to my heart because that’s what I focused so much on my research on before I came to the Society a couple of decades ago now.
ROHAN GREENLAND:
No, that’s fantastic. And now we’re going to go to this important meeting in May. Tim, why now? What’s it all about?
TIM COETZEE:
So, it’s a great question. So, one of the things I’ll note to your audience is that here in 2023, really it’s an important milestone in the MS movement because it means that for 30 years we’ve had disease modifying treatments for MS. So, the first disease modifying treatment beta serum was approved in 1993. It’s 2023, it means 30 years. And when you look across the landscape of MS, you can see that there are at least 20 what we call name brand treatments available on the market, multiple generics. Really a treatment landscape that has changed fundamentally in neurological diseases. And there are very few neurological diseases that have had the same level of progress as we’ve seen in MS. And what’s happening in May is we’re bringing the world together. And leaders, including yourself, Julia, and many others to New York to have a conversation about, where do we need to go in MS research to continue this incredible transformation that we are seeing in MS?
TIM COETZEE:
And that’s not to say that we don’t have a lot of big challenges. We absolutely have enormous challenges. But if you look back over the last, I’d say 20 or so years, we have seen some important milestones. We are able to diagnose MS a lot faster in 2023 than we were in 1993, or even 2003. We’re able to get individuals started on disease modifying treatments sooner with more effective options than have ever been available before. We still have a lot of access challenges, as I know you have in Australia. The medications cost way too much in the United States. I’m just on record. And there are many parts of the world where individuals just simply do not have access to even half of the disease modifying therapies that we have available to us in the more developed countries.
TIM COETZEE:
And so there are enormous challenges. But when you look at the landscape of MS, a lot has changed and a lot has moved. And now it’s time for us to actually start focusing on, how do we stop this disease before it really becomes even more present than it is? How do we restore people to what they’ve lost? So how do we repair? How can we regenerate? And then can we get to a point where we actually can conceptualize a world where, when we say we have a world free of MS, it means there’s no more new cases of MS? And that is the-
ROHAN GREENLAND:
Oh, it’s actually very important then because, is it the beginning of the end of MS?
TIM COETZEE:
That’s what I’m shooting for. I’m aspiring for the beginning of the end, which is consistent with what our founder, Sylvia Lawry, aspired to. And all of this is architected around what we call our Pathways to Cures roadmap, which was a vision that we brought researchers together, an international group of researchers, to outline if we were going to get to a cure for MS, ending MS, you point, the beginning of the end of MS, what would we focus on and where would we pour our energy? And that comes into the three words you heard me say, stopping progression, stopping the disease in its tracks, restoring what’s been lost, getting people back to full recovery and engagement in their community, and then ending the disease forever through some sort of strategy that’s about preventing the disease before its onset. And I’m optimistic that we can actually achieve all of those because of the progress we’ve made in developing new treatments, repairing, repairing, nervous system repair, which just 20 years ago nobody would’ve said that we would even be imagining trials for nervous system repair.
TIM COETZEE:
When I started in the MS field in the mid-1990s, I was in the myelin research field, and nobody talked about repairing myelin. It was just not even conceivable. And then just about 10 years later, the National MS Society and our colleagues in France hosted a scientific workshop focused on the topic of myelin repair. This was in 2002. And at that time, the clinicians said, “We can’t imagine doing a clinical trial.” Uniformly said, it’s not feasible. But now, just a few years later, we’ve had several trials. They have not yielded the positive results we’ve held, but you have to start somewhere. And before we had our first disease modifying treatments, there were a number of trials that didn’t work, so you have to start. So that’s what I’m optimistic.
TIM COETZEE:
And what excites me about the Pathways to Cures roadmap and the meeting that we’re bringing the world together in May is that, I mean, the MS Australia, another 29 organizations have joined us in saying, “Stopping the disease, restoring what’s been lost, ending the disease, we have to rally around that,” each contributing in our own way. So that’s what we’re going for. I’m excited. It’ll be a couple hundred people coming together. And for me, what it means is this is the continuation of what we do in the MS community, which is we declare where we want to go, we bring be people together, we develop a roadmap, and then we get to work. And then we come back together to say, “What have we done? Where do we need to go?” And we just keep doing that over and over again and we’re going to solve the disease.
ROHAN GREENLAND:
Julia, we’re very excited about going to New York. Tell us a bit about what we expect as MS Australia to get out of the New York meeting. I know from my perspective we’re really excited to be part of a great opportunity to better align global research efforts and to focus on some key priorities, and perhaps even establish some global platforms. We have our national platforms here in Australia around issues like genetics, AHSCT, vitamin D, but the potential to hold perhaps or develop some global platforms would be exciting. Tell us what your expectations are, Julia.
JULIA MORAHAN:
Yes, thank you. So, I think, as Tim has beautifully outlined, we have this lovely Pathways to Cures strategy that has three pillars of stop, restore, and that fit very nicely with the three pillars that we have at MS Research Australia in our research strategy of looking for repairing remyelination cures, better treatments, and also prevention. So, I think part of the conversation that we have been having and would love to continue in New York is how we can align more closely with everybody that are thinking about these kinds of three different streams of research and how we can work better together. So as Rohan mentioned, we do this quite well in Australia with our national collaborative platforms to try and bring people together around different topics that we feel are better tackled as a collective. And we’re really hoping to replicate some of that in our Pathways to Cures work. Because, in some respects, we don’t really mind where the answers come from. And we want the smartest people all thinking about these very hard questions together so we can avoid duplication and make sure we get there as quickly as we can.
ROHAN GREENLAND:
Also, I think there’s a lot of excitement about this end game. Tim has articulated this incredibly well, and it’s something that resonates with me. Can we perhaps end MS effectively by finding people at high risk of going on to develop MS before they have clinical symptoms in that prodromal phase? Maybe we’ll go back to Tim. Tim, tell us more about, does this really hold the potential to put an end to MS?
TIM COETZEE:
I think it does. And I think we saw the first signs of that at the recent ECTRIMS Congress in Amsterdam that I know you and Julia were at, where on the last day a very important clinical trial was reported on. And a group of patients that have a syndrome or disease, we call it Radiologically Isolated Syndrome. It goes by the shorthand of RIS. And in effect, what that is is these are individuals who, for one reason or another, had an MRI. They don’t have MS. They don’t have any of the signs of MS. They haven’t had optic neuritis or difficulty walking or any of the clinical indications that they have MS. But when the doctors look at their brain, they have lesions that are consistent with what is known as MS, but they don’t have any of the clinical signs. And so, they don’t have MS because they haven’t shown what by the diagnostic criteria you have MS that they have the disease.
TIM COETZEE:
And so one of the companies, Biogen, actually subsidized a clinical trial where they took a group of these individuals and actually treated them before they had any symptoms of MS with the drug called Tecfidera, one of the disease modifying therapies, and asked the question of, do these individuals who receive the treatment compared to those who don’t receive the treatment, do the people who… basically, the question was, do the people who don’t get the treatment develop MS faster than the people who are treated? The answer was, actually, the treatment actually slowed down the number of people who converted from RIS to having the first signs and symptoms of MS. And that, for me, is the first indication that if we can identify individuals early in the process before the clinical signs are as big as what they are when a person gets diagnosed with MS, that we can intervene and stop this disease in its tracks.
TIM COETZEE:
And if we can do it with that population, which have had the first signs of what we call the biological onset of MS, that means we just have to take one step back to then say, “Okay, what were the attributes of these individuals? Did they have a genetic makeup? Were they exposed to a virus? Did they have something happen in their life? And can we then intervene at that point before there’s any biological onset of MS, as we call it?”
TIM COETZEE:
That prodrome, as you called it, I’ve taken to calling it when the MS is below the surface that we can’t see it, because we can’t spot it. There is now more research, particularly from our friends in Canada as well as in Germany, looking at, are there indicators that can tell us what’s going on about a person that’s at risk? And what they have found in their studies is that if you look at a group of people in a cohort of patients, and look at the people who had MS, because of the healthcare system they have, they can actually look at what was happening to that person before they were diagnosed with MS.
TIM COETZEE:
And what they found is that people who develop MS start interacting with the healthcare system at much higher rates than people who don’t get MS. Now, there’s not a pattern that we can see yet to those interactions, but what it does tell us is that something’s happening in those individuals’ bodies that is indicative that something downstream is happening. And so, we need to do a lot more work to try to understand, what’s the pattern? But what it tells me is that there are markers, there are landmarks that we can start looking at. And if we can get enough of those landmarks, we can then begin to try to identify, are there interventions? Could a vaccine strategy, could some sort of preventative strategy be put in place? The holy grail obviously of… I’m sorry, go ahead.
ROHAN GREENLAND:
Yeah. I was just going to say, is it really a question of identifying those people at high risk? How do we do that? And is there a population-wide approach here?
TIM COETZEE:
So, I think identifying who’s at risk, the place we’re going to have to start with doing those studies is people who are first degree relatives of another person who lives with MS, because they’re the ones that have either the son or daughter or a brother, sister of someone who has MS. They’re at the highest risk. And so, what we can start doing is looking and asking, is there something that identifies them? That could then be to what I think you were anticipating, the holy grail question. Is there’s some sort of population-wide preventative strategy? Would vaccinating the population against Epstein-Barr virus reduce the number of new cases overall? Would combining that with say a vitamin D strategy, which I know is something that you’ve been really focused on and that we’ve been proud to be part of the PrevANZ study, would that combination of factors be?
TIM COETZEE:
And then do you introduce other population health approaches such as helping people sort of manage weight and exposure to smoke and a variety of other aspects, which could be in combination triggers? That’s the grail I would say that we’re all sort of going towards. But to get to that, starting as you say, “Who’s at risk? Who’s at the highest risk? Can we intervene there?” I mean, to me, those are the building blocks that get us to the population-wide future. And I’d say your audience may be wondering, what’s the timeframe on that? I’d say certainly a population-wide prevention study is probably quite a few years out, maybe a couple decades, because we need to develop those methodologies and tools. But getting to who’s at risk, I think that’s much sooner. I really do.
ROHAN GREENLAND:
Yeah, that’s great.
TIM COETZEE:
And that’s, to me, what’s been transformational, I’d say, about the last decade in MS.
ROHAN GREENLAND:
Julia, I think the need for this approach, this real global focus on the things that are going to be the big drivers of change and the end game, that’s really exciting stuff for us. We released in Australia new prevalence figures yesterday. And these prevalence figures show a very sharp upturn in the prevalence of MS in Australia. We’ve gone from 25,600 people living with MS in Australia from the 2017 data to 33,335 based on the latest data, which is 2021 data sources. Julia, does this really highlight the urgency of working collaboratively at the global level in a much better and productive way?
JULIA MORAHAN:
Absolutely. And I think the timeframe of the change, so the previous figures that we collected on prevalence in Australia were only four years ago. So, the level of change that we’ve seen is an acceleration on our previous prevalence figures. So, to me, or to everybody that says that it’s got to be environmental factors or behavioral factors that are driving that change primarily, because genetics is not going to change in that timeframe.
JULIA MORAHAN:
So, in terms of what Tim is talking about and what we’re thinking about in terms of being able to identify potential patterns for people that are at risk or identify people that are more at risk, the converse of that is, what can we offer them and what can we give them in order to decrease their risk once we’ve identified? And so, this kind of prevalence work shows us that, in fact, we can potentially help them because it is things that are modifiable. So, it might be exposure to sunlight, for example, or behavioral factors such as obesity or overweight, or other things that we can actually intervene earlier and potentially change the trajectory of those people who are most at risk of developing MS.
ROHAN GREENLAND:
No. Thanks, Julia. I think there’s some really exciting conversations going to be had in New York. Tim, what could we expect, what could people living with MS in Australia expect to see as a result that comes out of this critically important summit?
TIM COETZEE:
Sure. So, I think a couple things that we’re driving towards. One piece is, as you and Julia know, we are working on developing a global scientific strategy that all of our organizations can rally around and come together to say that we will join forces. And, as we have done with the International Progressive MS Alliance, really shine a light on how we together can bring together our resources to drive and accelerate research progress. And so, we’re doing a landscape analysis to understand who’s investing what and where so that we can identify gaps in investment, shared opportunities, and also where there may be greater collaborations than we have even today. I can anticipate we’ll have a scientific paper coming out of it that will describe, what’s the progress that we’ve made in the Pathways to Cures roadmap since it was first released earlier this year? What do we see are the opportunities moving forward? How has the science moved forward?
TIM COETZEE:
Because the thing about MS in the last five years is it’s moving fast. And that’s great because we need to keep moving quickly. And then the third thing I would say is that out of that will come, I believe, new science that we’re going to be able to fund that we will be able to join forces. And that, for people with MS, it will mean shining a light on, what’s the innovation we can drive around stopping progression? What’s the innovation we can drive around restoring what’s been lost? And rallying the community. And not just the patient organizations, but we have professional organizations, we have all of the major scientists who will be there. A shared sense of common purpose about, can we get the tools to diagnose faster, treat faster, and also treat more effectively?
TIM COETZEE:
And so that, to me, is what I see is the shared vision coming out of this, and which relies very much on, I’d say, the global collaboration of organizations like ours. And this is one of the aspects of being as part of the MS community that I love, is that we are able to have collaborations between individual organizations and across multiple organizations. And that common sense of purpose is something that I would say today really comes through in how the MS community works together in such a much more dynamic and aggressive manner than we ever have in the past. It really excites me as someone who’s been in the field for more than a couple of years at this point, but just to see what’s happening.
ROHAN GREENLAND:
Well, Julia, we’re excited too about where this summit can take us. We really hope that it’s going to be a real milestone in the future. People will look back and see this is a really critical moment in the history of MS research and the history of really fighting this disease. Julia, what are your expectations for New York? Do you think it’s going to fulfill all our dreams?
JULIA MORAHAN:
I think, as I said before, the more smart people we have thinking about hard problems, the better it is. And I think it’s wonderful to be able to have the relationships that we do have internationally to make sure that we’re working as hard and as efficiently as we can for people with MS. I think we have a huge amount of momentum in MS. It does move incredibly quickly compared to other neurological diseases, but we still have so far to go. And so, from my perspective, we’re still looking at all of those people that are waiting for us to make sure that this is no longer something that affects their lives. And so really, we are very excited to be part of this. And I think it will define a new global way of thinking that can only be something that is faster and better than what we’ve had before.
ROHAN GREENLAND:
Well, thank you very much Tim. Thank you so much for joining us today all the way from New York, and Julia from Sydney, and from me, Rohan Greenland, the CEO at MS Australia. Thanks for joining us today.
TIM COETZEE:
It’s a pleasure to be with you today.
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