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 everyone to the MS Australia podcast. And today we have two of our esteemed research team, including Dr. Julia Morahan, the head of research. And a former president of MS Nurses Australasia, and our clinical platform manager, Dr. Therese Burke. So welcome to you both.
Today we’re going to discuss something really important that has just happened. The world’s largest MS research conference has just taken place in Amsterdam. It’s the first time it’s been in person since the pandemic commenced back in 2020 and it attracted 7,000 delegates. It was an amazing event, which took place over three days in late October, but there were some critical issues that were discussed. And today, we’re going to talk to Julia and Therese who are both at ECTRIMS this year. And we’re going to start by talking to Therese about MS nurses. And in fact, MS Australia was really pleased to be a co-host of a major workshop on MS nurses and a critical role they play in improving outcomes for people with MS. Therese, what was the workshop all about?
Dr Therese Burke:
So we produced a report, which is called the MS Nurse Care in Australia Report, which has outlined several things that we didn’t know before. And these have become very important on the international stage. So it was great that we could present this data at ECTRIMS and we had people internationally coming up to us in droves to say that they were having the same issues in their own country. So it’s great to see Australia at the forefront supported by MS Australia. But a few significant things came out of the report. The first one is the work force and access to MS nurses across Australia. The report identified that a huge, 30% of people living with MS don’t have access.
Rohan Greenland:
This is really terrible because my understanding is that in fact, we should have at least 150 MS nurses in Australia, but we’re down to around 80 or less. Why is this? Why are we losing nurses here when they perform such a wonderful role?
Dr Therese Burke:
There’s several compounding factors, I think Rohan. The pandemic hasn’t done us any favors because nurses as we know have been at the forefront of that and have been through an awful lot. And it probably, there’s a high level of burnout at the moment and we haven’t had that support for the nurses, to keep them going and to ease their workloads. So we’ve lost some really incredible MS nurses with a lot of experience, particularly in the last couple of years. But we also haven’t built on the workforce that we have. So as we already know, the cases of MS are increasing and they’re the type of patients that will stay in a clinic setting or under care for a long time, for their whole lifetime to look after their MS. So more patients accumulate, but we haven’t had a corresponding increase in MS nurses and we really need to get everyone who needs access to an MS nurse that access.
Rohan Greenland:
And the report suggests that it would only cost $5 million a year, which in terms of health expenditure is virtually nothing. So if governments invested just $5 million a year, that would employ an additional 50 nurses? How do we get governments to invest in this outcome? Because as the report says, we actually get a much better return on government investment. It’s not just a cost effective, it’s cost dominant. So how do we get governments to do the right thing?
Dr Therese Burke:
Yeah, that’s what we’ve put a working group together for, Rohan. So that we’ve got people from all different stakeholders involved at the moment in a very serious working group, which is supported by MS Australia to get the answers to this. So that it’s not just knowing the results of the report, it’s actioning them and following through with the recommendations. And that’s what we’ll be doing particularly in the next 12 months to drive this forward.
Rohan Greenland:
And one ray of sunshine, I think we discussed when we were addressing the MS nurse’s conference recently in Melbourne, was the fact that the assistant health minister is a nurse herself, Ged Kearney. Do you think Ged would be receptive to the voice of MS nurses pleading for action to improve the MS nurse situation in Australia?
Dr Therese Burke:
Oh gee, I hope so, Rohan. What we need is a champion. We need someone in government who really understands the grassroots level and what it’s like to live with a chronic disease. So somebody with a nursing background like Ged would be an ideal champion. We just have to get those audiences and catch their ear. But this is the way to do it. We’ve got really strong, solid data. I mean, the outcomes from people who had MS nurses were just incredible. And this is an area where government needs to look at because it’s going to be long-term savings down the road. We saw people with an MS nurse or with access to an MS nurse had slower progression of their disease. That’s an incredible outcome. Meaning, a lot less money spent down the line. Less levels of disability, reduction in all of their symptoms scores, less depression and anxiety. And we know that the mental health toll can be a very expensive toll on the government as well and a greater quality of life. So it just seems like it’s really a no-brainer to get all of that together and fill these gaps.
Rohan Greenland:
Well, we know that access to an MS nurse is going to greatly improve outcomes and the quality of life of people with MS. But I think people would be pleased to know that MS Australia’s working very closely with MS Nurses Australasia and also with the member organizations of MSA to help take that campaign forward. And we look forward to talking to you more about that in future podcasts.
Going back to ECTRIMS, another thing that MS Australia was really closely involved with and it was a presentation of a major study, clinical trial involving vitamin D. Julia, tell us about the PrevANZ study and the results that MS Australia and the researchers were able to release at ECTRIMS.
Dr Julia Morahan:
Yeah, so this is one of the most important and exciting pieces of work that MS Australia has ever done. It’s our most expensive platform. And the idea behind it, called PrevANZ was to see whether or not supplementation with vitamin D could potentially prevent the development of clinically definite MS in people that were at high risk. And so we’ve got a lot of circumstantial evidence that vitamin D is important in terms of the risk of development of MS, but it was never going to be a clinical trial that industry was interested in sponsoring.
And so MS Australia put our hands up and we ran the clinical trial because it was a question that needed to be answered. And so we ran it. We looked at a range of different doses of vitamin D in people that have clinically isolated syndrome. So they’re people that have had one attack but not two attacks of MS and ran them against people that had no vitamin D at all. And the really interesting result out of this was in fact that the vitamin D supplementation did not make a difference to people developing clinically definite MS. Which is really interesting for us because there’s been all of this other evidence around vitamin D and sunshine and other factors that makes us think that it might be important.
Rohan Greenland:
So what this study really does is raises more questions, I guess. At least we know the answer to one question, but what else do we need to do to really understand the impact of and the importance of ultraviolet light and vitamin D?
Dr Julia Morahan:
So I think one of the things that we potentially learned from the PrevANZ results is that the vitamin D story is not necessarily about supplementation. And as you rightly say, it’s possibly more of a sunshine or UV exposure situation. So not necessarily the vitamin D through capsules or tablets. It’s about what are the other things that sunshine or UV exposure doing to the immune system that is potentially suppressing that risk of MS. The other important thing to say about the PrevANZ results is that the people that were enrolled in this clinical trial already had CIS.
And so it doesn’t answer a whole range of other really important questions about whether supplementation potentially in childhood for example, or before people have any symptoms at all, may in fact have a reduction in risk. And also to note that there were very, very few people that were in this study that were actually vitamin D deficient. So for those people that are potentially at risk of MS, we would still recommend that you have tests from your doctor and make sure that you do have sufficient vitamin D because this trial is not at all ruling out the importance of vitamin D for people who are deficient.
Rohan Greenland:
And I also understand that there’s another French study of similar design that’s still being compiled and will be released, well, we expect soon. Tell us a bit more about that and will this… Well, we don’t know what it will say yet, but it’ll be very interesting to know whether it will confirm the results of our PrevANZ study.
Dr Julia Morahan:
So we’re very, very interested in this French study. It’s known as D-LAY and they’re looking at a slightly different design where they’re giving people huge doses of vitamin D to see whether or not they can prevent MS. And we’re very interested in potentially collaborating with that group once the results are finalized from their study to potentially pull the data and see what we can find out from a larger sample size. So we are expecting that clinical trial to read out next year and we’re waiting to see what happens with that population.
Rohan Greenland:
Thanks, Julia. And in fact, the exposure to ultraviolet light and vitamin D. You know, the questions about whether it’s important in earlier in life and adolescence and childhood, brings me to another topic that was very prominent at ECTRIMS this year and that was about pediatric onset MS.
Therese, tell us about the opening address and what people were talking about in this space at ECTRIMS.
Dr Therese Burke:
This was one of my favorite talks at ECTRIMS, Rohan. I’ve got a deep interest in children and adolescents with MS. It was one of my favorite areas of practice. And Professor Brenda Benwell, an American pediatric neurologist, she has just been at the forefront of so much research and clinical care in peds and adolescents in the last few years. So it was amazing to have her there speaking. And in this opening lecture, and this gave rise to a lot of chit-chat in the room about what… She discussed, how it’s different it is for children these days that come into her office, for a visit compared to even five, six years ago. Where children, the only option for them were needle treatments. So they had to have injections into usually their tummy or their legs and some daily and some second daily and just how miserable their life was.
Dr Therese Burke:
And that would be their main concern when they came to see her. They just feared needle day. But now we’ve had some DMTs approved across the world, including in Australia for some of the newer, more highly effective treatments that are given orally or by infusion. And according to Professor Benwell, that’s just changed the quality of life for these kids so much. Now they come in to see her much happier and they talk about other things. They talk about soccer and school camps. I mean the thing to remember about pediatric and adolescent MS is its only a small proportion of people diagnosed with MS. It’s about 5%, some people say up to probably 8%. So it’s a small group, but it’s a really important group because in pediatrics there’s a lot of inflammation going on with MS, but the kids can generally cope with it really well because they’ve got a lot of neuroplasticity.
They’ve got these new brains that are growing and developing and they’ve got lots of reserves. So they can tend to cope with the relapses much better than adult onset MS. But that doesn’t mean that there’s no issues because Professor Benwell also discussed that we have to keep an eye on cognition. Which is thinking and memory and learning in these kids and make sure that they don’t fall behind. So that was one of her main messages.
And her other message, which I really loved from a holistic point of view, from a nursing point of view was that we’ve got to look after the whole family with pediatric MS. It’s not just the child. Recent studies have found that some mothers of children with MS are at a greater risk of depression than the general population. So she suggested that we sort of have a really holistic view of the whole family. So it’s great to hear that there’s, things are getting better for kids, we’re getting better at treating pediatric MS because we’re hoping that then we can take away the burden later in life.
Rohan Greenland:
That that’s really interesting. And I understand one of the other points that was made in that opening address was that whereas pediatric onset MS is quite uncommon, it’s very rare before the age of 12. And so it’s really in those teenage years that we start to see it. But it also is an interesting point too because people are talking a lot or talked a lot at ECTRIMS about the importance of detecting MS even before clinical symptoms occur.
And Julia, I was going to ask you, you attended some important meetings at ECTRIMS which was looking at how we might take the new Pathways to Cures global research roadmap forward. And one of the things in that roadmap was very much about the importance of finding MS before it shows, before it turns into CIS or clinical symptoms. And can you tell us a bit about the discussion at ECTRIMS around the importance of finding a cure by finding MS before it starts?
Dr Julia Morahan:
Yes, absolutely. So I think this discussion that Rohan is mentioning married really well with MS Australia’s research priority survey that we did last year. Which showed that while repair was still our number one priority, prevention of MS rather than better treatments had moved into second place. And I think when we talk to people in the MS community, we can talk about lifelong management and being able to have their disease under control, but that’s not the same as a cure. The way that we are going to cure MS so that no one ever has to think about it again, is through prevention.
And so the Pathways to Cures is a global research strategic framework that is looking at three different areas. And the pillar that I think is actually super exciting is this idea that we could potentially prevent MS in people before it begins. It’s going to require huge databases of people, samples from all kinds of different people. People that are at risk, people that have family members with MS and people with MS in order to be able to see if we can detect changes early enough so that we can intervene and maybe stop MS before it even begins.
Rohan Greenland:
That’s very exciting work and we’re really looking forward to discussing that in future podcast as well. One of the other major updates at ECTRIMS involved a new generation of disease modifying therapies, the so-called BTK inhibitors. I understand there’s four pharmaceutical companies that have products in stage three trials and two more in the wings. Julia, can you tell us what are BTK inhibitors, and why are we getting so excited about them?
Dr Julia Morahan:
Yes, absolutely. So BTK stands for Bruton’s tyrosine kinase and basically, it’s a molecule that occurs in some cells in the body and the inhibitors kind of block the function of that molecule. So at the moment, for all of our medications that we use for MS, they kind of either sweep away or dampen down the immune system, but they do it in a really non-selective way. It’s really broad. The BTK inhibitors on the other hand are actually very targeted and they’re very good at selecting out particular immune cells that we know are causing the damage in MS. So this is very exciting. The other reason that we’re super excited about this is because we know that the cells in the brain that are damaged directly in the brain and spinal cord, they’re known as microglia, are also targeted by BTK inhibitors. Which means we are now quieting down the immune system as well as quieting down the immune attack within the brain and spinal cord.
And basically, Rohan, if we can be more targeted in the way that we attack the cells that are doing the damage, rather than just blasting everything in your immune system, it means basically more effective treatment with way less side effects. So this is a super exciting area and we are really pleased to hear that we’re expecting those results to read out probably at ECTRIMS in 2023. So we’re all waiting with bated breath to see what happens there.
Rohan Greenland:
And we also understand that the BTK inhibitors may also be useful against progressive MS as well as relapsing MS.
Dr Julia Morahan:
Exactly. So it’s actually across relapsing forms of MS, secondary progressive MS and primary progressive MS. So there’s a number of trials running in this space. So absolutely super, super exciting time.
Rohan Greenland:
So it could be a big leap forward if the trials are good and have great results. And we’re anticipating some early results at ECTRIMS next year. Is that the case?
Dr Julia Morahan:
That’s right. We’re very excited. So yeah, we are. Everything crossed to see how this goes.
Rohan Greenland:
That’s terrific. And I’ll move back to Therese now because you do brilliant work for MSA in adaptive clinical trials. This was also a big topic at ECTRIMS. A lot of people were talking about how cost effective and the speed at which clinical trials can go if we take a more flexible approach to clinical trials. Rather than the traditional way of waiting five years, set up your trial, wait five years, look at the results. Tell us about adapter clinical trials and why everyone is looking at these as helping to get us down the path to cures faster?
Dr Therese Burke:
Thank you, Rohan. This is my baby, I’m working on this at MS Australia. So I was thrilled to have this on the table at ECTRIMS and for so many people to be talking about it and wondering about how we’re going to make this work. So what adaptive clinical trials are is a new way of looking at clinical trials. So instead of the patient being in a clinical trial for two to five years, waiting for the trial to finish and then working out if the drug’s been effective or not. We have a much more flexible approach. So rather than waiting till the end of the trial, their schedule looks at the data during the trial. And by doing that, we can pick up much sooner if the drug’s looking particularly good and we can increase recruitment into that arm of the study. Or on the other hand, if a drug isn’t working well, we can stop that much earlier than going on.
This is of course really important in MS because we want to keep as much functional brain and spinal cord tissue as we can. We don’t want to be waiting four or five years to know how someone’s going. So for patients it’s much better and hopefully we’re going to get to more effective treatments. Particularly for progressive MS, much sooner. The really good news for people to know in Australia is that MS Australia, this is like I said, been a baby of ours that we’ve been nurturing along for the last two years. And what we’re hoping to do is bring some adaptive clinical trials to Australia in coming years, particularly for progressive MS. And we’re really excited about that and the outcomes for people.
Rohan Greenland:
That’s fantastic. Thanks so much for that. And we’re very proud of the work that we do at MS Australia in this space and hoping to really supercharge that agenda in the years ahead. Now one last thing I was going ask you, Julia, about ECTRIMS too. One issue in the prevention space that came up quite a lot was with smoking. And we know that smoking is a significant risk factor for MS. What were people talking about ECTRIMS in this field?
Dr Julia Morahan:
That’s right. So smoking is quite a large behavioral risk factor for MS, and we know that the risk of MS is a combination of both genetic factors and behavioral and environmental factors. And so there’s always a huge amount of interest around those risk factors that people can potentially modify for themselves like smoking. And so it was really just so much overwhelming evidence now that smoking is just such an important part of that risk profile for people that go on to develop MS. We know that tobacco smoking increases the risk of MS onset by about 50%. And the really, really interesting thing for me is that also if you already have MS and you are a smoker, it increases disability progression by about 55%. So the message here is a pretty simple one. If you are a person with MS who is a smoker or you’re a person at risk of developing MS, essentially it’s never too late to quit.
It’s never too late to stop smoking. People who smoke and have MS have much worse outcomes. We know they have lower quality of life, they have worse worsening symptoms of depression and anxiety. If you can potentially remove it from your life, you will generally have much better outcomes than if you continue to smoke. And MS Australia has funded a bunch of work in this area, particularly around the barriers to smoking cessation. Particularly for people with MS and how we can design programs that can help them overcome those barriers because we know the difference that could be made if people were able to stop smoking.
Rohan Greenland:
And we have some resources available through our website.
Dr Julia Morahan:
Yes, we do. So we’re very proud to be able to offer those through a collaboration with the University of Melbourne. And I think it’s just really important to have a program that’s been tailored, particularly for the MS community in order to give them the best possible chance that they can to quit.
Rohan Greenland:
It was a little bit disappointing, I guess, to see a number of delegates smoking out of the front door of the conference center at ECTRIMS. And I guess in some European countries where smoking rates remain high, I was also told that people living with MS still have high smoking rates and the fact that there may not be good effective counseling by neurologists in those countries or other healthcare professionals. But fortunately I think in Australia, we well ahead of the pack through our tobacco control measures and things are definitely moving in the right direction here.
I think one other behavioral risk factor that’s been discussed most recently at a forum up at Parliament House held by Research Australia was the increasing interest in overweight and obesity, particularly in childhood and as adolescents. And that as a potential risk factor that’s driving increasing rates of MS in North America and Europe. Was a discussion at that at ECTRIMS? And what’s your feelings, Julia, about the importance and the potential impact of that on MS prevalence moving forward? So that’s a risk factor that’s going the wrong way in this country.
Dr Julia Morahan:
So it’s a good question. I think we’ve known for a little while that obesity, particularly in adolescence, is a risk factor for MS. And as I mentioned before, you kind of need to have a range of risk factors or I always think of it as a threshold. So a range of different things that kind of join together to actually cause you to develop MS. So there is always this huge interest in the ones that we can potentially modify. So this is definitely a known risk factor for MS, particularly childhood and adolescent obesity really as a risk factor for MS. So genetics is something you can’t really change, you’re born with and you keep for your entire life.
But these other things like smoking, things like overweight and obesity are things that people can change. And we’ve found that that’s something that the MS community is really interested in order to be able to potentially take back control of some of that narrative around their risk of developing MS. So super important area and definitely something that we need to keep an eye on because we know that it’s an increasing problem both in Australia and around the world.
Rohan Greenland:
And Therese, your on that as a clinician and a researcher?
Dr Therese Burke:
Yeah, I think it’s one of the most commonly asked questions in clinic, Rohan, is what diet can I go on for MS, and what’s going to make it better? Because there is a lot out there. What we do know is that there is no one diet for MS and we recommend that people follow the Australian dietary guidelines for healthy eating. Because that sets you up for just a much better quality of life from nutrition. But as Julia said, the modifiable things that people can have control over and change can be really effective because if we can take away some of those risk factors, people are only going to do better. And that’s not just in childhood and adolescence, but later after diagnosis as well. So exercise, looking after mood, watching your weight, following the dietary guidelines, they’re all things that people can take control over and bring into their life. So it’s almost like another form of therapy to have those things well covered.
Rohan Greenland:
That’s fantastic. Thank you very much for listening to this our inaugural podcast. We thank you for your attention and we also invite you to nominate a topic, a theme or give us a question that we can address in a future podcast. Hop onto our website, msaustralia.org.au/podcast. We look forward to hearing from you. And thanks for listening.
Voiceover:
Thanks for listening to the Raw Nerve, the official podcast of MS Australia. To hear more, subscribe to our podcast today at msaustralia.org.au/podcast.
