Welcome by Parliamentary Friends of Multiple Sclerosis Co-chair
Senator Wendy Askew

Thank you very much for the opportunity to come along, to speak to you today. On behalf of the Parliamentary Friends of Multiple Sclerosis, and particularly my co-chair, Senator Deb O’Neill, it’s my pleasure to welcome you all here today. It is an amazing turnout. So lovely to see so many smiling faces in the audience and so many people that I’ve met in the past.

And so hello to everybody I have met, and to those I haven’t. Hopefully, I’ll catch up at some point. And I also wish to acknowledge my parliamentary colleagues in the room. There’s quite a few, so welcome to all of those. And also to the Assistant Minister for Health and Aged Care, who will be contributing throughout the afternoon. And also any members of our Parliamentary Friends of Multiple Sclerosis that may be here.

I’d like to extend a warm welcome to those living with neurological and neuromuscular conditions, many of whom I know have travelled great distances to be here today. So, thank you very much for taking the time and committing to the attendance. Your presence here is deeply valued and it’s the very reason. In fact, the only real reason that we are here today.

The relationship between MS Australia and the Neurological Alliance Australia is long standing, with MS Australia being among its founding organisations. About three years ago. MS Australia played a pivotal role in revitalizing and strengthening the alliance, which operates under the auspices of MS Australia and is so ably chaired by MS Australia’s Chief Executive Officer, Rohan Greenland and my friend.

Today marks some significant milestone in the work and focus of the Neurological Alliance Australia. The Alliance has long recognized the need for a national, coordinated approach to better support people living with neurological and neuromuscular conditions, rather than simply presenting government with a list of challenges and demands. The Alliance has taken a proactive and constructive path. This developed a blueprint for a National Action Plan for Neurological Conditions, which is a comprehensive and practical framework designed to guide meaningful change.

And I’ve had a great opportunity to look through that earlier today, and it’s evident that it offers government a well-defined, practical roadmap for action. So, congratulations to everyone who’s worked on that. It’s been strategically designed to drive meaningful impact, fostering improved outcomes and a brighter future for all those living with neurological conditions.

I acknowledge and commend the Neurological Alliance Australia for its leadership in advancing this significant initiative, and I look forward with anticipation to the development and implementation of the National Action Plan.

Welcome by Alexion Pharmaceuticals: General Manager Nicole Gaupset

Australia is very proud of the healthcare system that we have here. And underpinning that at the federal level is both the PBS and also Medicare. I think also, we’re also very proud of the scientists we have, our clinicians, our nurses, and all of the people that provide quality care, to everybody living in Australia.

And yet in saying that, we also know that we have gaps and that we can do better. So today, the launch of the blueprint, of a national action plan for the neurological conditions is both a milestone but also a call to action for the 7 million Australians living or potentially experiencing a neurological or neuromuscular condition in their lifetime.

Alexion AstraZeneca Rare Disease has been really pleased to be able to support the development of the blueprint. We’d like to congratulate and thank Rohan and David for their leadership throughout the whole process. Certainly, the blueprint is the result of life experiences shared both by individual patients, and also the patient groups. We hear often about the patient voice.

And here is a real experience of what it can do and what it can deliver. Alexion is a company that is committed to bringing new and innovative medicines for rare and ultra rare conditions. And so, we’re also incredibly pleased to see that, sometimes that unique journey and challenges of someone, somebody living with a rare neurological condition is also reflected within the blueprint.

I’d like to just take a moment to highlight two of the calls to action that would have a significant impact on people living with the rare disease. The first is the need for government, both at federal and state level, to really look to stimulate new models of care centres of expertise, where coordination of specialty services could be a real game changer for people living with the rare disease.

The other no surprise is PBS reform to ensure that faster and fairer access to new and innovative medicines, occurs. We know that there has been an HCI reform ongoing. We know last night; the Minister of Health also acknowledged a number of the recommendations. And I think now what we want to see is change at pace to accelerate that reform.

So, access to new and innovative treatments for people living with rare disease or neurological conditions, occurs particularly at a time when the government is looking to improve the productivity of the Australian economy. And I think there is a lot of data that would indicate smart investment in health care can really drive that productivity benefit. So today is an important step.

And we certainly share the hope of everybody in this room that both government and parliament will really run with this action plan and, deliver the reform that’s needed to improve the services and care given to people living with neurological conditions. Thanks very much.

Introducing the National Action Plan for Neurological Conditions
NAA Chair & MS Australia CEO, Rohan Greenland

Thank you. Thank you so much. And we meet today, as an alliance of more than 40 organizations. Only three years ago, three and a half years ago, I think we were 12. But we’re really gaining a lot of momentum. And we represent, some 7 million Australians living with some form of neurological condition from MS to MND, from Parkinson’s to Huntington’s, migraine to muscular dystrophy, dementia to mitochondrial disease, polio to epilepsy, stroke to spinal muscular atrophy. And these and many, many more.

Altogether, there are more than 600 neurological conditions, many of them rare diseases, low in prevalence., they may be, but they’re often very high in impact. Many neurological conditions are progressive, degenerative and associated with high levels of disability and can be life-limiting when you consider neurological conditions, even with narrow definitions and counting, as the Institute of Health and Welfare has done lately, just 2 million of the 7 million affected.

Even then, the Institute of Health and Welfare places this disease group among the largest 4 or 5 disease groups, that have the biggest impact on our community and on health budgets, managed by the federal, state and territory governments through the burden of disease that they represent. So our message is crystal clear. We need all governments to provide the same priority, the same attention and the same support given to the other major disease groups.

In particular, cancers, cardiovascular disease and mental health have detailed action plans in place, comprehensive action plans and, quite rightly, to with clear goals and targets. They have comprehensive data sets and are backed by substantial funding, well targeted funding that’s commensurate with the burden of disease that these conditions cause.

We do have national action plans for cancer, for cardiovascular disease and mental health, but there is nothing yet for neurological conditions as a disease group. And that’s why we have, over the past seven months or so, worked tirelessly as an alliance, to bring together our blueprint, for a national action plan for neurological conditions.

The blueprint has been developed by members of the Neurological Alliance, working closely with people living with neurological, neuromuscular conditions, researchers, clinicians, industry, the World Health Organization, and many others. It’s not a national action plan in itself. Rather, it makes the case and sets out the key points that should be included in the National Action Plan, and that should be developed by the Australian government, working with all state and territory governments and co-designed with the Australian neurological community.

In other words, it’s one enormous prod, suggesting to the Australian government that it has an obligation and an economic imperative, to take action on neurological conditions as a disease group. But, there is cause I think, for optimism. And I’ll give you three reasons why I think the government will act. Number one, Australia has already signed on to the Global Action Plan in 2022.

Australia on the W.H.O. Global Action Plan for Neurological conditions, formally titled the Global Action Plan for the, I forgot it’s full title for epilepsy and other neurological conditions. But is essentially the global action plan, for, for all neurological conditions. And this plan calls, calls on member nations to implement, their own action plans or strengthen existing plans and policies.

Many countries already are taking action, including India, Italy, Germany, Norway, Poland, Scotland, Sweden, Switzerland, Uruguay, South Africa and yes, even Zambia. So if Zambia can do it, I’m sure we can too. And with three years into the Global action plan, and the plan I’m confident that Australia will want to be seen to be among the leaders, not the laggards, in this international push to address a disease group that’s been neglected for far too long.

And my reason for optimism, number two, an action plan will, if done properly, save governments money. Action to improve prevention, access to treatment and rehabilitation will curb costs, potentially saving the nation $7 billion a year. And high-level economic modelling commissioned by the Neurological Alliance from Lucid Health Consulting, sets out the economic case for an action plan building on work of the contained in the Economist Impact Report of 2022.

They looked at the US $4 trillion savings that could be generated across 11 countries by looking at ten neurological conditions over eight years through greater investments in prevention, better treatment and improved access to rehabilitation. So this needs to be part of the government’s economic and productivity reform agenda. And it really just makes sense.

Reasons for optimism number three, the Australian government is looking at taking a more comprehensive approach to chronic conditions. And I might say not before time. A bill to establish the Australian Center for Disease Control. The CDC or the academic across the public health movement beautifully refer to it was introduced to Parliament this week and we will, see the release later this year of the revised National Strategic Framework for Chronic Conditions.

And on top of that, the UN is having its fourth high-level meeting on NCDs, non-communicable disease, chronic disease later this month, with neurological conditions set to be specifically included in the global NCD Action Plan. So I think it’s fair to say, that this renewed focus on chronic disease is reflected, in the meaningful conversations that the Neurological Alliance has had with the federal health, the federal Department of Health, aging and Disability over the past 2 or 3 months.

And I really do want to thank officers of the department for that engagement. I acknowledge, the presence here today of several of them. And I think that is a very visible demonstration of the commitment to an ongoing dialog around, neurological conditions and the way they are, managed and treated by all governments. I’ve given you my three reasons for optimism, but I’m going to give you a fourth.

And that lies with, work that’s been done at the state, government level. And there’s not one, but two state governments of, that have committed to developing neurological action plans or strategies and that that is Queensland and Western Australia. And I want to congratulate the, the neurological activists, in, in those two states for working with their state governments to get action and traction on that front.

But the federal health Department, I’ve got to say, has, readily admitted that there are gaps in the current approach to neurological conditions. And, I think, it has certainly moved to address, at least in a preliminary, preliminary way, at least one glaring gap. And that is the lack of neurological data. We don’t have a national neurological data set.

And in 2025 it’s an extraordinary gap in Australia’s approach to major diseases. But we do have funding that has been provided to support the Institute of Health and Welfare to develop the first, elementary set of neurological data, which would be released later this year. So we’ve taken some small steps, but there are mountains still to climb.

We need comprehensive action to better detect, treat and care for people with neurological conditions. More investment in research and the infrastructure that underpins research, including support for brain and biobanks. And we need funding to promote brain health, helping to stop helping to stop disease, before it starts. So a funded neurological action plan, with clear goals and targets will save lives, improve quality of life, and bring substantial economic benefits for the entire nation.

And investment in research is particularly important. We know that, for many neurological conditions, we’re still seeking, some of those very first breakthroughs in multiple sclerosis. We next year will celebrate the 30th anniversary of the first use of an effective disease modifying therapy. And we’ve come a long way in those three decades. But for many neurological conditions, we’re still looking for that first really effective treatment.

And so research is utterly critical to really move forward. And, we know that the Medical Research Future Fund, is underspent by hundreds of millions of dollars. And we certainly urge, the government to uncap, spending, on medical research because medical research means hope it means, progress. It means better quality of life.

And that’s something that the Neurological Alliance strongly supports and joins many others in the research sector. So finally, I want to, extend my heartfelt thanks to all the NAA members who’ve dedicated their time, their blood, sweat and tears and expertise to shape the blueprint over the past seven months, including the two very engaging workshops that we’ve held, and also extend my thanks to the following for the intellectual, support and the funding support for the development of the blueprint.

Alexion Pharmaceuticals. Nicole. Gaupset, Trent Zimmerman. Libby Naughton and to Pharmacore’s Craig Joseph, UCB Australia’s Selina Clifford. Rupert Hugh Jones and Vanessa Stevens. Thank you. A very big thanks to Lucid Health Consulting for the work on the costings and the potential savings, that have been highlighted in the report. And a big thank you, particularly to George Papadopoulos who I think is here with us as well. The co-chairs of the Parliamentary friends of MS, Wendy Askew and Deb O’Neill. Wendy has had to leave it. Hopefully Deborah will be with us a bit later. And also their staff. Thank you to the MS Australia staff for their support and really importantly, to the many people living with neurological and neuromuscular conditions who are here with us today.

I also am really pleased. And part of the input in the blueprint has come, from engagement with a number of other organizations, which include, the Australia, New Zealand Association of Neurologists, Neuroscience Research Australia, epilepsy and other Neurological Diseases Alliance, the W.H.O. Brain Health Unit, and also the MS International Federation. So we need to make no mistake, there is global momentum underway to get neurological conditions the recognition, support and action they so badly need. And the neurological alliance here in Australia is growing rapidly. And I think that really reflects the need for change and the commitment we collectively have to work together to achieve change, to prevent disease, find those cures and improve the lives of everyone living with the neurological condition.

We’re stronger together. and our voice will be heard. And I’m going to close by quoting Paul, who lives with muscular dystrophy, who’s quoted in the Blueprint.

And he said, “taking the knee and prosecuting the case for more comprehensive, government wide approach to neurological disease is critical to ensuring the many of us who live with neurological conditions keep the hope alive and never feel like we are stuck in the shadows, but can thrive in the brilliant sunlight of, our lucky country.”

Thank you.

Jack Rowland
Lives with Becker’s Muscular Dystrophy

So thank you and hello, everyone.

So my name is Jack Rowland as has been mentioned, and yes, I do have a condition called Becker’s muscular dystrophy, which is a form of muscular dystrophy. And it’s a privilege to be here today with everyone here today advocating on behalf of the National Action Plan for neurological conditions.

I was first diagnosed at 12. And I did not think that I would be here today, so it’s really awesome to be here with you all.

But before I sort of advocate and explain why this plan, I kind of wanted to give you guys a bit of an idea of, you know, my journey and experiences.

So before I was 12, I thought my body was just like everyone else’s. I participated in soccer, AFL, cricket, swimming, all the sort of sports normal children would end up participating in. And after different bouts of physical activity, I would always have a lot of muscle pain, a lot of cramping, a lot of tightness and stiffness, which I thought was normal for most people.

And even when I described this to doctors, they would always tell me that I would eventually grow into my body. But that never really happened, and I was always waiting for it. And when I was 12, I was diagnosed, and I was basically told on the spot by a doctor that I had a chronic, degenerative muscle wasting condition.

And later that day, I asked my parents what any of that actually meant. I didn’t actually know what I was diagnosed with and what it actually meant for me. And I remember being very confused and disorientated and not really knowing what to do. And this experience kind of shows you that neurological conditions are something that don’t just affect aging Australians, they affect young people, they affect everyone.

And one of the vulnerable groups identified in the report are actually young people. So it’s definitely something to keep in mind. And when we are able to address neuromuscular and neurological conditions early on, it has a lot of positive effects on the person, but also less effects on the health care system. And despite all of these challenges of my condition, I am currently completing a Master of Public Health.

I work part time. I’m on a newly established council by Climate and Health Alliance Australia called The Youth Health, Climate and Health Leaders Council, and I’m also an intern at Muscular Dystrophy Foundation Australia, as to why I’m here today.

And the reason I’m able to do all these things because I am lucky. When I was diagnosed, my parents worked tirelessly to research my condition, make sure I was seeing the right specialists, making sure I was having really great food, and something that I don’t really tell people often because it makes you sound very spoiled.

But for the four years following my diagnosis, I actually had breakfast in bed thanks to my mother, so not anymore, thankfully. But yeah, so a lot of the big part is because of how much effort my parents put into it. But families should not have to fight this hard for their children to not only survive but thrive.

And this blueprint is really a perfect encapsulation of shifting away from a system that requires individuals and families to adapt to a system to one that adapts with them and meets their needs, and that society will ensure that those with neurological neuromuscular conditions are supported and empowered instead of feeling like they are invisible, as is mentioned before or left behind.

So that’s me. Thank you.

Closing Remarks
Rohan Greenland, Chair, NAA

Thank you, everyone, for coming today. We have a lot of work in front of us. We, as I said earlier, have taken some small steps. But we’ve still got mountains to climb. But, the alliance, is growing, getting stronger, our voices getting heard, causes incredibly just, 7 million Australians needing access to better treatments that better coordinated care, better investments and research and hope for the future.

We’ve got one other major thing we’re going to do this year, and that is with fortunately, due to some generous funders, we’re going to be able to do a major survey of service gaps in Australia around neurological conditions.

This will be, a really, globally significant survey building on the work. Those of you who were here at the summit last year will remember Georgina Carr., the neurological alliance UK CEO, told us about the survey work that they did on service gaps in the UK, and that’s led to some extraordinary actions around neurological conditions.

So we’re going to follow suit and do an Australian version of that survey. So that’s next up that we need all your help to get that survey out about to, to the neurological community. So, I think today’s been another milestone, as I say, small steps, a lot of work before us. But thank you so much for your engagement.

And, from, you know, our 40 member organizations. And, David, I think we still have even three more, seeking membership in the last week or two. So we’re growing at the rate of knots. We’ve got a lot of work to do. Thank you, everyone, for your presence here today. And, you know, I give you my, and our renewed commitment to, to keep our shoulders to that, grindstone. And, as I say, small steps so far, mountain to climb. But we’re geared up and we’re ready to go. Thank you all.