Voiceover: 

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

I’m Rohan Greenland, I’m the CEO at MS Australia, and this is the Raw Nerve. Today I’m delighted to have with me the Chief Executive of the MS International Federation, Dr Lydia Makaroff.

Lydia’s a guest of ours in Australia. She’s been CEO at the international body for MS organisations for six months.

Lydia, a big welcome to Australia and we’re really delighted to have you as the Chief Executive of the MS International Federation, representing 46 member organisations across the globe.

And we’re doubly delighted because you’re doing such a great job in your first six months, but also because you’re actually an Australian.

Tell us a bit about, first of all, your connections with Australia and growing up in Canberra.

Dr Lydia Makaroff

Thanks, Rohan.

Yeah, it’s great to be back in Canberra, my hometown. So, yeah, I grew up here, went to high school and university here, studied medical research at the Australian National University, looking at autoimmune diseases, why the human body decides to attack itself instead of protecting us from disease, which it’s supposed to. And it was a wonderful basis for my work now, which is at the MS International Federation.

So now I live in the UK, but it’s, it’s always wonderful to be back in Australia and hearing the sounds and smelling the smells that are my childhood.

Rohan Greenland

That’s fantastic. And in fact, I think you grew up in the suburb I live in, Aranda, so a very close connection. That’s absolutely fabulous to have you here.

And how have you found the first six months? Six months in, it’s a challenging role and bringing a very diverse group of organisations together to fight for the MS community. And how have you found it? And what have been the chief challenges that you’ve found so far?

Dr Lydia Makaroff

Yeah, so I’ve certainly learned a lot from so many people around the world in these first six months.

And I think one of the things that I’ve really been impressed with is the resilience of the MS organisations around the world, no matter what they look like. I see that all of our MS organisations really rely on volunteers, no matter how big or small. And it’s really the dedication and ingenuity of the volunteers that make all the difference.

And a learning that I’ve had is how valuable people have found peer learning and hearing what other MS organisations around the world are doing and learning from that and saying, oh, perhaps in some ways we’re more similar than we are different.

So we’ve learned from virtual communities in Lebanon, awareness campaigns in Iceland, podcasts in Uruguay, and these member organisations have been able to share with other member organisations around the world and we’ve really all been able to learn from each other.

Rohan Greenland

One of the great pieces of work that MSIF does and continues to do has been looking at global prevalence of MS. Before the MSIF pulled together the Global Atlas of Ms, there really was very poor data around MS prevalence worldwide. In Australia, we every two or three or four years Commission a prevalent survey.

We’ll be releasing new data here in Australia at our conference in Brisbane in December, and we feed that into the global Atlas too.

How important is that work and when are we going to see the next iteration of that global prevalence work?

Dr Lydia Makaroff

It’s, it’s so important because we really need to know how many people are affected by MS because we can’t advocate for better treatment, faster diagnosis if we can’t describe what the population is that’s affected. And I think one of the challenges as well is under diagnosis and misdiagnosis as well.

So the first step is to capture globally how many people are diagnosed with MS. And we see that it’s around 2.8 million, 2.9 million people with MS that have been diagnosed.

Rohan Greenland

And that’s likely to be probably an underestimate because only looking at the places we actually have data and looking at the number of people who have been diagnosed. So that we know there’s probably a much large number of people living with MS globally and that the figures we do have are a significant underestimate.

Dr Lydia Makaroff

Yes, exactly. So this doesn’t capture misdiagnosed or undiagnosed people. And so we’re hoping to publish more of that data at the end of the year, also looking at what sort of diagnostic tests are available in each country, as well as what disease modifying therapies are available. And what we’d really love to do is help more countries do better epidemiology studies. So how to count people better and how to make sure that we’re really getting these accurate studies so then we can more accurately estimate the global burden of disease.

Rohan Greenland

And from an Australian perspective, you know, our data has shown that there’s been a very significant increase in prevalence in recent years.

And we have seen data from some other countries in Europe and North America, which indicates they’ve got an increase in prevalence too.

Are you seeing that globally? And you know, particularly where we’ve had data over a sustained period of time and other concerns about what’s happening with MS globally in terms of increases in prevalence rates.

Dr Lydia Makaroff

So I think we’re very lucky to because we can learn so much from the Australian data because you have really, really robust studies with fantastic methodology. And so when we look at studies like Australia, we can say, yes, this doesn’t seem to be a shift from undiagnosis to diagnosis, but there’s really seems to be an increase in prevalence, an increase annually in the number of people who are actually having MS and then being diagnosed from us from MS.

But MS is such a tricky disease in terms of risk factors that it we perhaps, yes, are seeing an increase in the general popular, a general prevalence. And we’re also going to see the global population increase as well. So that will also be another factor.

So it’s, it’s quite complex modelling global prevalence of a disease like MS because it’s got so many different risk factors.

And so the more better quality data that we can get from countries like Australia that gives us a lot of insights and lets us extrapolate into what’s happening globally.

Rohan Greenland

One of the great pieces, another great piece of work that the MSIF organ as an organisation coordinates around the world is that focus on diagnosis. And we know in a lot of low and middle-income countries that have poor resources and struggle, may have one neurologist or one MRI machine.

You know, how can we expect good data from countries like that? And one of the good things you do is also help build capacity in some of those smaller emerging member organisations.

Can you tell us a bit about firstly capacity building and then about the focus on diagnosis?

Dr Lydia Makaroff

Yeah, absolutely. So part of our role is a convening role in organisational development and movement building.

So we recognise that all of our member organisations and all MS organisations around the world, they know the situation in their country a lot better than we do.

So we learn from them, we listen to them, and then we ask them, for example, what sort of training do you need in your region, in your country that would help you do better?

So for example, in the Middle East and North Africa, we worked with the University of Cairo to develop our project training and grant running training because that’s what our members in that country and that region said that they needed.

And So what we did is we had leaders from 8 countries, many of them living with miss themselves, and they had experts in their region, experts from Egypt and around the region telling them and practising how to write grant proposals.

And so for example, we had some of our members in Morocco and Syria saying that they had never actually been taught how to write a proposal before a grant proposal.

And they felt a lot more prepared than to, to write grants. And now they can work more on diagnosis within in their region. They know the barriers and enablers to diagnosis in their region. And now they can, you know, more effectively run projects and write grants to improve diagnosis in their country.

Rohan Greenland

Wow, that’s fantastic. World MS Day, here in Australia ,we had a wonderful function at Government House with the Sam Mostyn, our new Governor General.

It was a fantastic opportunity to bring the MS community together, but the theme has had a strong focus on the importance of diagnosis and early diagnosis, and we know that early diagnosis can lead to early intervention and much better outcomes across the life course for people with MS.

Tell us a bit about the work that MSIF is doing in the diagnosis space.

Dr Lydia Makaroff

Yes, there’s so much changing in diagnosis and we’re really seeing momentum around making it easier and more effective and more precise to diagnose people with MS and differentiate it from other diseases that might look a little bit like MS.

And so indeed the theme this year and next year will be diagnosis for World MS Day, which is on the 30th of May.

And once again, it’s about enabling and facilitating our members to do the best work in their country that they can. So we’ve got a lot of fantastic animations that explain what is an MRI machine, what is lumbar puncture, so they can translate.

And we can work with them to translate that to their local context, as well as a social media tool, a poster maker, where individuals in those countries can share their personal diagnosis journey.

And then we’ll also have data from the Atlas of MS. So it’s that combination of storytelling and data that we find is really effective to enable change nationally and internationally.

Rohan Greenland

This year, World MS Day featured some unique Australian work. Here at MS Australia we support the Menzies Centre at the University of Tasmania who have produced the most wonderful Understanding MS course.

It’s called a MOOC course, a massive open online course on understanding MS. But they’ve done something special for you this year.

Dr Lydia Makaroff

Yes they have. They have produced an Understanding MS diagnosis course.

So first, can I say that I did the big Understanding MS course as soon as I became chief executive of MSIF and it really gave me a fantastic bird’s eye view of MS. So I found it incredibly useful and a wonderful resource.

And then for World MS Day this year, we’re lucky enough to feature a diagnosis-specific course where people could really delve into what the diagnostic process was for MS.

And whether you’re an allied health professional or a person living with MS, or have someone in your family living with MS, or perhaps you’re starting to get some signs and symptoms and wondering if you have MS.

It was an incredibly accessible online course that we were so proud to partner with you and the other partners to offer worldwide and we’re very, very grateful for the collaboration.

Rohan Greenland

One of the most, I think, significant developments in the world of MS has actually been broader.

It’s been the development by the World Health Organisation of an intersectoral global action plan for neurological conditions. Here in Australia, I chair the Neurological Alliance Australia, which brings together 40 neurological groups to advocate on behalf of the 7 million Australians living with a neurological condition.

We think that the WHO Igap really helps shine the light on the lack of action around neurological conditions, including MS in Australia.

What does it mean globally?

Dr Lydia Makaroff

Yes. So I think it’s fantastic that finally we do have a global action plan for all neurological diseases that sets out a framework for action for all member States and emphasises the importance of intersectoral collaboration in that.

And it offers a tool for member organisations and national MS organisations to say to their national governments who have signed up for this action plan to say, say, look here is the global action plan for neurological diseases. Now it’s time for a neurological action plan in our national country to strengthen policy and to make sure that neurological conditions are, you know, they’re not forgotten, they’re prioritised. And it will actually save you money and increase productivity because you have actually boosted their health of your entire population.

Rohan Greenland

And I’m very grateful to you, Lydia, for joining me to go down to our Federal Health Department earlier today where we met with representatives from two important branches of the Federal Health Department, the Chronic Disease branch and also the International branch, which liaises with The Who on a very regular basis and organises Australia’s participation at the World Health Assembly every year.

There’s a few things happening around neurological conditions.

In fact, in September, the UN is going to hold its fourth high-level meeting on non-communicable diseases and for the first time they’re including neurological conditions. Is that right?

Dr Lydia Makaroff

Yes, absolutely. And it was due to work of alliances like One Neurology, which we’re very proud to be a partner of that made sure that neurological diseases are mentioned in this political declaration.

It’s in the draft. And we really, really hope that we will also see it in the final political declaration when that comes out in September. And we’re very impressed to see that there will be targets as part of this political declaration as well. So we can hold national governments accountable and make sure that they are really focusing on non-communicable diseases, including neurological diseases.

Rohan Greenland

And we’re really delighted that The Who has coordinated this work around neurological conditions. It’s really put a spotlight on the whole of the neurological disease groups.

And in Australia, you know, we’ve got this neurological alliance which really highlights the common challenges faced by the neurological conditions. But overall, it’s because in Australia, we have cancers, cardiovascular disease, mental health, all recognised and supported as major contributors to the burden of disease in Australia. So they get extra funding, extra resources, extra attention above and beyond what you would expect for individual elements of that disease group.

For neurological conditions, this certainly hasn’t happened.

And in Australia, neurological conditions are not recognised as being in the top four or five major contributors to the burden of disease.

And that’s the case, I think, globally as well, Yes?

Dr Lydia Makaroff

And I think it’s very impressive to see the work that MS Australia is doing and other MS organisations to make sure that governments and policymakers are not forgetting about people with MS and other neurological conditions.

And also centring the voice and the lived experience of people living with and affected by Ms.

And reminding governments that there are human stories and there are humans and individuals and families who are so affected by these neurological conditions and there are very concrete actions that governments can take to improve health outcomes and to improve the quality of life of these people.

Rohan Greenland

And I think one of the more encouraging things we heard this morning in our meeting at the federal health department was a very frank acknowledgement.

The neurological conditions are really under-recognised, under-counted, under under-supported and that gap has been very frankly admitted.

Dr Lydia Makaroff

Yes, absolutely.

And once again, it is charities like MS Australia that make the effort to go to Parliament, to go to the Department of Health to make sure that you have these meetings with the policy makers to really make sure that it’s visible; the impact the lives, the population of people living with MS and other conditions.

So you can make sure that they are high up on the agenda.

Rohan Greenland

With your 46 member organisations in 43 countries

Dr Lydia Makaroff

45

Rohan Greenland

45 countries. Obviously, their capacity to advocate is different. You know, we find in Australia that when you go to government and advocate on behalf of 33,335 people living with MS, you get recognised and heard to a certain degree. But when you go and say I’m representing 7 million Australians living with a neurological condition and you know your voice has, they pay much more attention. And what are you finding? Are other Ms organisations across the world working in a similar way with neurological alliances?

Dr Lydia Makaroff

Yes, they are. And it’s, it is interesting and there are different challenges in different countries because in some countries Ms is a rare disease and in some countries it’s a more common disease.

But we know as, as you’ve said, that there are many different neurological diseases that share perhaps diagnostic pathway or that are treated by the same sort of health professionals or who are treated in the same hospitals.

So I, we have learnt that by working more closely together, by forming these coalitions, whether they’re coalitions within our country or international coalitions, we can say what are our shared goals?

And then let’s work together to meet those shared goals, and we can support each other, and we can go further.

Rohan Greenland

That’s fabulous.

I think, you know, the MSIF bringing such diverse organisations together is, is so importan,t and one of the things I get out of being a member of the CEOS group as well as the board is, is exchanging ideas, information and approaches and collaborating more strongly.

One of the areas we collaborate very strongly with our international partners is around research.
And what role does MSIF play in the research agenda?

Dr Lydia Makaroff

Well, firstly, can I say as well, we’re so happy to have you on the board now as our newest Board member of MSIF and you’ve offered so much insight and expertise to the Board.

So we’re very, very grateful to have you as a volunteer for that.

And in terms of research, we like to see ourselves as a convener to really bring together the experts together and the experts from all around the world, because there is so much fascinating research also happening in low and middle-income countries as well as in high-income countries.

And we can all offer so many different perspectives and different types of research as well.

You’ve got translational research, you’ve got breakthrough research, you’ve got very early Preclinical Research where we’re trying to understand the molecules that really underlie Mississippi.

And we can see in different populations and different countries. We can learn so much from each other.

And if we can bring together that global research community and make sure as well that we acknowledge and celebrate the expertise of people with lived experience and we can improve our research questions and our research outputs by engaging the MS community as co-researchers and co-collaborators, then this huge global community is just going to come out with some fantastic insights and really have better treatments, better diagnosis, and eventually a cure for MS.

Rohan Greenland

Well, that’s fantastic. And you know, I’ve observed the wonderful work that MSIF does with people living with MS and how it embraces the global MS community in a very effective way. Tell us about how MSIF integrates the lived experience voice.

Dr Lydia Makaroff

Well, we integrate the lived experience voice at every level.

So on the board, we have many people living with and affected by Ms.

We also have our amazing expert group of people living with and affected by MS, with members nominated by all of the MS organisations that are part of MSIF.

And then we also make sure that all of our committees and all of our expert groups also have people living with and affected by MS on them.

And we really make sure that right at the beginning, when we’re setting our strategy, when we’re producing any of our documents, when we’re producing any of our materials, that we are listening to and engaging and have meaningful engagement from lived experience right at the beginning all the way through.

Because we cannot be the global voice of MS without the amazing insights that we get from the lived experience community.

Rohan Greenland

And while you’ve been with us, we also had the honour of taking you to MS Australia Brain Bank in Sydney. And as someone who’s done a lot of research, I think you found the Brain Bank a really fascinating place to be.

And also earlier today you participated in a session with our lived experience expert panel. And so we’re really grateful for that.

, I suppose one of my other questions really was, you know, how do you breach the scope between very small and emerging Ms organisations in countries like, I don’t know, South Africa and South America, maybe some in the Asia Pacific? We know our New Zealand colleagues are really a very small organisation with a huge mission.

And then you go all the way to the very big ones like the, the Americans and the Canadians.

And I, you know, the Americans have a huge challenge, almost a million people living with MS in America and I think it’s 120 or 150,000 in Canada. And they’re big organisations with hundreds of staff.

How do you manage to work across that huge contrast in between the smallest and the biggest of the MS organisations?

Dr Lydia Makaroff

Well, I have found that there’s actually a lot more similarities between the MS organisations than there are differences and some of the challenges between low resource regions and high resource regions, whether you’re looking rural or urban, whether you’re talking about stigma, what it is for family members, there are so many common themes.

And what we’ve found is actually some of these low resource organisations have had to be so resourceful that we can learn so much from them.

If you’re talking about, say you know, a local radio campaign that could be adapted, or if you’re talking about virtual support groups or virtual physiotherapy classes that we can learn so much from each other.

And sometimes they’re and there are cultural differences that need to be adapted. So it’s not certainly not one size fits all.

And it sometimes has been challenging, especially if you are one day meeting an organisation that has many hundreds of employees and the next day I’m meeting an organisation that is purely volunteer-led.

But I think the passion and the determination we all want to see as we see here, a world without MS and I think that vision guides us all, no matter where we come from.

Rohan Greenland

Now that’s a fabulous point to end our conversation. Lydia, thank you for joining us in Australia. I know you’ve visited now face-to-face 21 of your 46 member organisations in just six months. That’s incredible. You must be very tired. That would exhaust me just thinking about that. Thank you so much. MS Australia really appreciates the great work you’re doing. And I think the future for achieving our mission of a world without MS is brighter than ever. So thank you very much for joining us today.

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