Celebrate with us the first-year anniversary of the OneNeurology Partnership and the One Voice For Neurology podcast with our host, Sam Pauly and her guests.
In this episode, we go over the developments and achievements made by the OneNeurology partnership in the last 12 months. We will discuss what we can gain by addressing neurology as ONE, why the WHO Global Action Plan is a game changer, and what comes next.
Celebrate with us the first-year anniversary of the OneNeurology Partnership and the One Voice For Neurology podcast with our host, Sam Pauly and her guests.
In this episode, we go over the developments and achievements made by the OneNeurology partnership in the last 12 months. We will discuss what we can gain by addressing neurology as ONE, why the WHO Global Action Plan is a game changer, and what comes next.
INTRO:
Welcome to the One Voice for Neurology Podcast, a series of podcasts exploring why it's time to make neurology a priority, how that can be achieved with a global and uniform response, and what that could mean for the future of neurology and those living with a neurological disorder. I'm Sam Pauly, and you're listening to episode 10, the birthday edition.
Sam Pauly:
Hello, and a very warm welcome back to the One Voice for Neurology Podcast. So much progress has been made since we first launched in Brain Awareness Week 2021, and now we're back with a new series this Brain Awareness Week. Over the next three episodes we'll once again, be bringing together voices from the world of neurology, from doctors, scientists, and policy makers, to people living with neurological disorders, and those fighting for better conditions of those affected today and in the future. Now, at least one in three people of all ages will have a neurological disorder in their lifetime, so this is relevant to us all, no matter where in the world we may live. In this series, we'll be bringing you up to date with the latest from the OneNeurology Initiative, hearing where we're at with the global action plan, and looking at what happens next and what impact this could have.
We'll also be hearing from voices around the world on the various challenges that exist and hearing more about needs and possible solutions. We'll be case studying one region, where we'll look at the differences in Europe and how a regional framework there could be bridge the gap from global down to national. But that's enough from me. Let me start bringing in some of our guests. Shortly we'll be bringing you up to date on the initiative and the global action plan, but first we wanted to look at why with over 400 neurological disorders, teaming up can help make neurology a global health priority. And to do that, I'm delighted to welcome Dr. Orla Galvin from EFNA, one of the founding partners of the OneNeurology Initiative, and Dr. David Dodick, another partner, the International Headache Society Global Patient Advocacy Coalition, or IHSGPAG. Orla and David, a very warm welcome to you both. Thank you for joining us.
Dr David W. Dodick:
Thank you. It's a pleasure to be back with you.
Dr Orla Galvin:
Thanks Sam. It's great to be here speaking with you today and to be joined by David again this year.
Sam Pauly:
Orla, let me start with you. How many people live with neurological disorders across the globe, and what does this mean for people and societies?
Dr Orla Galvin:
So to pick up on your own introduction, to those who are listening into you today, if I could ask them to think about themselves, look to the person to their left and look to the person to their right. One in three people in their lifetime is going to be affected by a neurological disorder. And in terms of more stats and facts and figures, we know that approximately 9 million people died from neurological disorders in 2019, and this is rapidly increasing. This is an increase of 40% over the previous 30 years. We know that 80% of this burden is in low and middle income countries. We also know that neurological disorders are the leading cause of disability.
So to use a little bit of jargon, when we talk about disability, we talk about it in disability, adjusted life years, so dailies, and we know that 12% of all dailies across all disorders are attributed to neurological disorders. On a more personal and human level, we know that there are a huge number of common issues around discrimination, stigma, isolation, and this really means a massive impact on human rights. So when it comes to societies, there's a huge amount of work that can be done there around the lack of a awareness and the real need for true understanding of what it means to the people and families affected by these conditions.
Sam Pauly:
David, it's 12 months since the launch of the OneNeurology Initiative, and now with over 400 different neurological disorders, from a medical and scientific perspective, tell us why it's important to speak in terms of OneNeurology?
Dr David W. Dodick:
Well, Sam, our brain and the health of that brain affects every aspect of human life. Our brains control our movement, our thoughts, our speech, our memories, our ability to communicate with one another, like we're doing right now. Our brain is responsible for our ability to solve problems and experience joy in life. So there's no aspect of human life that isn't reliant on or dependent on the health of our brain. Our brain also exerts control over the rest of our body. Our lungs, our heart, our gut, our hormonal, our immune systems. So in essence, the health of our brain underlies our ability to live a productive and meaningful life. So because many neurological diseases and disorders are often comorbid, there's a biological underpinning that links many diseases and disorders, or they can coexist in the same individual. It's important that a body like OneNeurology be responsible for advocating for people with all neurological disorders, because there's so much that we can accomplish as a coalition and together then we can individually or singly.
So bringing advocacy organizations that represent individual diseases together to advocate for the health of our brain and all neurological diseases in general, I think is really the only way we're going to make meaningful impact across the globe. And as Orla said, 70 to 80% of the impact of brain diseases and neurological disorders occurs in low and middle income countries. So we really do have to come together from a health equity standpoint to make sure that access to care and rehabilitation and treatments and medicines are equitable across the globe. It's it just so happens that, I think, six and a half billion of the seven and a half billion people that live on this planet live in a lower middle income country, so health equity is critical and making sure that whether you live in Manhattan or Mumbai, you have access to high quality evidence based standard of care for brain and neurological diseases.
Sam Pauly:
And are there additional commonalities, for instance, in terms of the challenges that people living with varying different neurological disorders might face, or even in terms of the solutions?
Dr David W. Dodick:
Well, absolutely. I mean, as we'll get to talk about in a moment, the Intersectoral Global Action Plan for Epilepsy and Other Neurological Disorders that was launched by the World Health Organization, the goal of that really is to detect, prevent, care, treat, and rehabilitate people with epilepsy and other neurological disorder, because the burden of all of these disorders, and the insufficient access to both services and support for these diseases are pervasive and very similar. So if there's a population having difficulty accessing care for, let's say, Parkinson's disease, it's very likely that they're going to have difficulty accessing care for epilepsy or for migraine or for any other neurological disease or disorder. And we know that there are precious few neurologists across the globe to be able to care for people with neurological disorders. So one of the things that we have to do as a community is increase both at the undergraduate and postgraduate level training for both neurologists, but also for other clinicians, be they primary care or what have you, train them up so that their ability to care for people with neurological disorders as frontline practitioners is at the highest level possible.
Sam Pauly:
Orla, I know we're going to be talking with you and Alexandra Heumber-Perry later on in the episode, and I suspect we'll talk about this a little bit then as well, but whilst we're discussing this commonalities and discussing OneNeurology, some may be concerned that talking about OneNeurology could detract from the work being done within individual disorders. How would you address that?
Dr Orla Galvin:
A well known phrase is that a rising tide lifts all ships, and that is very true for those working in the neurology space. What we see and what we are continuing to strive to achieve through OneNeurology is that added benefit of working together, not at all to detract from any of the condition specific or region specific activities, but rather to position all neurology in a strengthened, favorable position to leverage policy makers, to take action on those common goals, such as access to care rehabilitation services and supports, for all neurology patients, regardless of the condition or region that they are in.
Dr David W. Dodick:
And if I can just play off on that, Orla, I would say there's a saying that teamwork divides the tasks and multiplies the success. So I believe a coalition like this can complement the work of individual advocacy organizations and professional societies by sharing resources, networks, materials, and best practices, and can complement what's happening at the local level for neurology in general, but individual diseases in particular.
Claudio Bassetti:
Hi, I'm Claudio Bassetti, professor of neurology from Bern, Switzerland, and president of the European Academy of Neurology, and you are listening to the One Voice for Neurology podcast.
Sam Pauly:
I'd like to ask you both the next question. Of course the ultimate group to impact on is people who are living with disorders and their carers. Have you any examples of where this bundled more politically driven approach is already really working and really making a difference? David?
Dr David W. Dodick:
Well I guess in my own world, I happen to share the International Headache Societies Global Patient Advocacy Coalition, coalition being the operative word here, because we brought together over 40 different organizations, including professional societies, regulatory agencies, patient advocacy foundations, and we brought them together for the single purpose of drafting a blueprint for success when it comes to advocating for the more than 3 billion people with migraine and other headache disorders on the planet. Our first initiative was to create a workplace initiative for people in the workplace with migraine. Last week, we just had a major press conference around an initiative that we launched within a global employer that has 175,000 employees, over 25,000 of whom have migraine, and it was a tremendous success with over 91% participation rate of the employees in that company.
Now, not all 91%, of course, had migraine, but that's the point. We were advocating for disease and part of advocating for disease is to raise awareness and an understanding among those who don't have the disease, so they'll appreciate the burden that their coworkers, colleagues, partners, friends, family members are going through. So in that way, as Orla alluded to earlier, you reduce the stigma associated with that disease, and that then enables you to effect policy changes, both with employers and both at the public policy level. So that at a micro example of what we've done in the migraine world, and I think the OneNeurology is just a macro of that representing all neurological diseases.
Sam Pauly:
Orla, do you have any examples yourself of where this bundled approach is really working and already making a difference?
Dr Orla Galvin:
I think we can already see it through the OneNeurology Partnership. When we think about the global action plan, we already have evidence to show that we had really united, consolidated response of the consultation of the plan with the WHO. So again, there we can highlight the fact that we're not specifying which neurological condition, because there will be different priorities in different regions, but together we have that ask and need and policy action within the plan that was consulted on as a partnership across a broad spectrum of partners and conditions to really unite the needs of those who we are advocating for. So I think that's already a really, really good achievement to date. And we'll see more of that in the future.
Sam Pauly:
David, of course you joined us 12 months ago for our first series of podcasts when the OneNeurology Initiative first launched. Can you give us a view on the last 12 months? Has anything changed from your perspective that you've observed?
Dr David W. Dodick:
Yes. One thing has changed and it's made a major impact on the World Health Organization's IGAP initiative. One thing that's changed is this group has come together as a cohesive unit working very closely and collaboratively together. So over the course of the year, each of these different organizations within OneNeurology have developed personal relationships and professional collaborations and have worked together beautifully. And one of the ways in which they've worked together is on IGAP, or this Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders, by coming together, reviewing the IGAP document, and weighing in as individuals, societies, and individual members, of thinking of the whole, if you will. To watch everyone come together on behalf of all neurological diseases and disorders, and really make measurable changes in IGAP that seems to have been implemented in the final resolution was really very gratifying and really a remarkable achievement by an organization that came together just in time, just in the nick of time to have that kind of impact.
Sam Pauly:
I'll just finish by asking you both a final question as well. It's expected that the WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders will be adopted in May at the World Health Assembly, as we were saying. So, in a nutshell, what's the report all about and why is it such a milestone for the neurology community?
Dr Orla Galvin:
Well, it positions neurology in a location that it's never been before on the world stage, so that, number one, is fantastic. The overall goal would be to reduce the burden and impact of neurological disorders. But if you're to think of it as having particular aims or objectives, it's broken down in into four categories, really. Number one would be to prioritize and strengthen the governance around neurological disorders and epilepsy. To provide effective and timely and responsive diagnosis, treatment, and care for all of the conditions therein. And to implement strategies to promote brain health as a whole and develop strategies for the prevention of neurological disorders. And then finally, what we always need to remember, whatever the current situation is, we always need to foster research and innovation for future generations as well to come. So it really is all encompassing in that sense.
Sam Pauly:
David, would you add anything? Why you feel this is such a milestone for the neurology community, if indeed you do?
Dr David W. Dodick:
Well I absolutely do, for a couple of reasons, I suppose, and really just to complement what Orla said, or maybe even repeat what Orla said. But this was unanimous among member states, that they recognized the burden of epilepsy and other neurological diseases, and that they came together to launch this plan. So this is the first time in the history of the World Health Organization, that neurological disorders and brain health have been captured as a distinct field, and then enveloped in a global framework of actions and measurements, measuring the impact of those actions. So it represents a watershed moment and a unique opportunity to build an integrated response to neurology and neurological diseases across the lifespan and within healthcare systems to essentially improve the lives of people living with neurological disorders worldwide.
Because we can do better in terms of detection, diagnosis, caring, treating, and rehabilitating people with neurological diseases. But we can also do a lot better in preventing neurological diseases. When I started my training, I was told that 80% of the 800,000 strokes in the United States every year are preventable. Guess what? We still have 800,000 strokes in the United States every year. So we can be doing so much more by just bringing to bear all that we now know currently to all people who are at risk to prevent these neurological diseases from happening in the first place. So I think it's an incredible moment for the world of neurology, but most importantly, not for people like me, but for people who are suffering with one of these brain diseases
Sam Pauly:
And just to finish very quickly from you both, how do you see us working as a global community, as one global community, and how hopeful are you feeling for the future? Orla.
Dr Orla Galvin:
I think something like OneNeurology is so well positioned to act as a watchdog, if you like, from the implementation of the global action plan. Once it is hopefully adopted in May, we are in such a good position within the field of neurology to really, truly have that positive impact on the burden of neurological disorders. But it's on us, and it's our responsibility to ensure that plan is implemented. And I can only wish all of the partners and colleagues in the OneNeurology group and those working in neurology across the globe success and good luck in implementing the plan for the future.
Sam Pauly:
And David, how about you? How do you see the global community working as one and how hopeful are you feeling for the future?
Dr David W. Dodick:
Well, I'm an optimist at heart, but I'm feeling very hopeful for two reasons. One is this is too important to ignore. And what I mean by that is that, as you've said, and as Orla said, neurological diseases affect one in three individuals, but of the two of the three that it doesn't affect, it does affect indirectly. Who of us doesn't know of a family member or friend or colleague who's suffering with a neurological disorder. So it actually affects every one of us. So it's too big and important to ignore.
And if we do this right, we'll be too big to fail. And what I mean by that is OneNeurology is a coalition of many different organizations representing distinct brain diseases. But OneNeurology also has to partner with other major global coalitions, of which it's doing with the International Headache Society's Global Coalition, but also with groups like The World Health Organization, like the World Federation of Neurology, like individual neurological associations around the world. So it has to be too important to ignore, which it is, and too big to fail. And that too big to fail comes from partnerships and coalitions and working together in unison.
Sam Pauly:
Well, we'll leave it there, but thank you both so much for joining us. And Orla, I know that you'll be staying with us, thank you for that, to give us an update on the OneNeurology Partnership, when we'll also be joined by Alexandra Heumber-Perry from the initiative. But first let's hear now a personal account of someone living with a neurological disorder. From the start of our series last year, we've been asking people living with neurological disorders to record a diary of their experiences, challenges, and hopes, which we've featured throughout the series. One voice we heard from last Brain Awareness Week was Richelle Flanagan. She lives with young onset Parkinson's disease and is a co-founder at the Women's Parkinson's Project. Let's hear it now from Richelle.
Richelle Flanagan:
Hello. My name is Richelle Flanagan. I'm based in Dublin, Ireland. I'm married and I have two kids and I am a registered dietician for over 18 years. I was diagnosed with young onset Parkinson's disease shortly after the birth of my second child. I have been an advocate for Parkinson's ever since, particularly in the areas of nutrition and also in terms of women with Parkinson's disease, because the reality is that most people, when they think of Parkinson's, think of an older white males stooped over with a tremor, but we really need to rebrand Parkinson's because 46 out of every 100 people living with Parkinson's disease are in fact women, and 20% of those are under the age of 60, which is a prime time in life in terms of work and jobs and mortgages and kids, which puts a lot of pressure on women living with Parkinson's disease.
I suppose from my own point of view, my symptoms, I noticed that they worsened around the menstrual cycle and many of my counterparts of Parkinson's notice the same thing, so I've been advocating to drive better research to validate the fact that women are experiencing these issues, which can actually impact two weeks out of every month, due to the drop of estrogen affecting the drop in dopamine levels. And this interesting off actually impacts other neurological conditions like ADHD, migraine, epilepsy, Alzheimer's, and MS. So it'll be brilliant to see the OneNeurology Initiative actually bring women together to discuss this and to drive forward research initiatives that look at the differences between men and women in the different conditions, which would be lead to more personalized treatment, not only for women, but also for men.
In terms of the global action plan, whilst it's great to see the document published and I was part of the consultation process, I am a bit skeptical that it's not going to meet our needs in time. It's dated until 2031. The reality is that access to services are really bad today and they're just getting worse. So my hopes and dreams for the future are that perhaps the global action plan and OneNeurology can put a focus on women with neurology conditions and to drive research that is sex and gender based to help those of us who are living with the conditions.
Sam Pauly:
Richelle Flanagan there sharing her experience of living with young onset Parkinson's disease. Well, as you know, this is our birthday edition. It doesn't seem possible, but it's already one year since our first episodes of this podcast, which were launched in tandem with the OneNeurology Partnership. It might not feel like a long time, but I know that in that time, a huge amount's been happening with the partnership and the work that they've been doing. Not to mention that there's a global action plan on the horizon as well.
Now to bring us up to date on everything that's been happening, the achievements, and of course the next steps, I'm delighted to welcome back Orla Galvin, executive director of EFNA, and welcome to the podcast Alexandra Heumber-Perry. Alex is an independent consultant in public affairs at international and European levels, specializing in public health and patient's issues. She's worked with many patient groups developing and leading engagement and advocacy initiatives with a broad range of international stakeholders, including UN organizations, private companies, and governments. She's been contributing to the setup and development of the OneNeurology Partnership. Alex and Orla, thank you so much for being with us today. Very warm welcome to both.
Dr Orla Galvin:
Thank you, Sam. Thanks for having us today.
Alexandra Heumber-Perry:
Hello Sam. Thank you.
Sam Pauly:
Orla, let me start with you. It's 12 months since the launch of the OneNeurology Initiative, along with the European Academy of Neurology, the EAN. EFNA was one of the two founding partners. Now the partnership has really grown and I hear it's turned into a truly global partnership. What's the response that you've received over the last 12 months and how much has it grown?
Dr Orla Galvin:
Indeed, the partnership has grown. It is truly global. There are 12 partners in total, including the two initial founders you have mentioned. The partners are made up of international patient disease specific groups, and also regional umbrella organizations as well. In addition to that, the partnership has grown on many levels. There are 44 endorsers, so these are groups, not individuals, again, sharing the common goals and objectives of the partnership. And we also have 15 OneNeurology ambassadors. So these are individuals who act and operate at a local and regional level together with the OneNeurology Partnership. We also have four industry partners. So the representation is truly global and on many different levels.
Sam Pauly:
And you're pleased with the response you've been receiving, then?
Dr Orla Galvin:
Absolutely. What we've seen in the past few months, certainly, with the approaching World Health Assembly and the input and positivity around the global action plan is that there has been a ramping up of the frequency and the intensive of the collaboration within the partnerships. This response has been great.
Sam Pauly:
Alex, I know it's been a busy 12 months for the initiative. Can you tell us some of the key politically focused activities that the initiative's been up to? And can you tell us if there have been any concrete results?
Alexandra Heumber-Perry:
It's quite amazing. In almost less than one year, we managed to really come together and to address at political level, I mean, at the highest political level, at the WHO level, what it means to talk in one voice, what it means to address the commonalities of a neurological disorder in order to improve the prevention, the treatment, and management of all neurological disorders. So to go more precisely on the political aspect of it, OneNeurology Partnership managed to make two submission at the WHO. So it means we were capable to address the most important plan for the global action plan to really be meaningful for patients. And we did it in a very short time period, but all the partners, so 12 international group, agreed on some key points to make sure that the global action plan would be meaningful.
I think this is probably the most meaningful milestone that OneNeurology Partnership did. And if I can just finish on that, we became a principle interlocutor with the World Health Organization. World Health Organization, with the member states, has to elaborate and come with this global action plan that's going to be voted in May. By having one interlocutor that really addressed the most important aspect, for them, it's also much more powerful, it's much more meaningful. So this was important. This was a very important objective of OneNeurology Partnership.
Sam Pauly:
So Alex, is there anything that you can tell us about how the global action plan came into being, then?
Alexandra Heumber-Perry:
We have to remember that the global action plan actually was focused first on the epilepsy only, and during discussion, and it was actually the European countries that look to expand the global action plan to all neurological disorder. So we, the community, we were not together at the time. We had an opportunity, actually, to come together, because thanks to the epilepsy community, we have that opportunity to really address the overall neurological disorder policy issues. So I think based on that, we really started to develop the concept of OneNeurology, and then we also develop the concept of coming together, being partnership. And that's why in March, 2021, we launched the OneNeurology Partnership, but it was really thanks to the epilepsy community at the very beginning that we had neurological disorder on the table at WHO level.
Sam Pauly:
Let me just move on to that global action plan, then, because it's expected that the global action plan will be adopted in May at the World Health Assembly. How an important and opportunity is this, and what does it mean concretely for people that are living with disorders for their carers, for other people in the neurological field?
Dr Orla Galvin:
What it means is that there's concrete policies to call for action at national levels for all stakeholders, so for patients, for patient advocates, for caregivers, for those who are working in research and innovation, and for health systems and neurologists across the board. The action plan is a one stop shop for all of the community, and it really gives advocates the potential to hold government and policy makers accountable for the implementation of the political commitments really, and truly, and resourcing and results that are held within that action plan.
Sam Pauly:
Alex, a unique opportunity, would you say?
Alexandra Heumber-Perry:
I think if we want to really look at, from the patient perspective, what does it mean to have this policy framework? Sometime I find that it's often disconnected to the reality for patients. If I put myself in the shoes of the patients, I would say that it's a real unique opportunity in a way at its, for the first time, give a real hope that at every level, so not only at national level, but also at global level, there is an important call today that concrete action need to be taken by policy makers, but also by all the different stakeholders that are involved in improving prevention, treatment, and care for neurological disorder. When you look at the global action plan, it's not only WHO that has been asked to do something, but it's also the member state, it's also the patient groups. It's also patients as an individual, also.
For example, there is one concrete action in this global action plan is to make sure that there would be an advocacy awareness campaign at national level. Who is going to do that? It's going to be the patients. I think that would be the best place to really do those campaign at national and regional level. So, yes, it's a unique opportunity. We really have to say, and this is the message may be that OneNeurology Partnership can say today, that the whole community, really patient to neurologists, doctors, everyone, has an opportunity to make accountable their policymakers, to make sure they will deliver on the ground.
Sam Pauly:
Just for anyone listening just very quickly just to put this into perspective, how often do global action plans happen for other areas and things?
Alexandra Heumber-Perry:
It doesn't happen often. Actually, some communities have to do a lot of advocacy work, a lot of ONS work before seeing a global action plan being put in place for their disease. The other unique opportunity I think for the neurological field is for the first time, I think, it's such a transversal plan is being put in place across the overall neurological disorder spectrum. Before we used to have this specific national plan. Here we have an opportunity to address all the commonalities. So in one shot we can address several one at the same times, if I may say. What would be important for the member states and for all the stakeholders is to identify cost effective measures that would be able to be implemented rapidly and deliver also rapidly in term of impact for patients.
Sam Pauly:
And Orla just before we listen to some of our phone messages and take a break with our interview, let me just quickly pick up on that final point from Alex. Looking at all of the neurological disorders, and I know we've touched earlier, but just to reiterate, is this going to be at the expense of individual disorders?
Dr Orla Galvin:
Absolutely not. For OneNeurology and the messaging of the global action plan is to work in synergy and in parallel with the specific conditions. There are multi-fold benefits to working in a multi-stakeholder collaborative approach, such as the OneNeurology Partnership and Initiative, coupled with the global action plan. And what we see is that united the voice of the neurology community is then placed in a really promising and favorable position politically to advocate and access all of those targets that are held within that plan.
Alexandra Heumber-Perry:
If I can add on what Orla has said, the fact that there is a neurological disorder plan for all the neurological disorder doesn't minimize the other action plan that are being taken or was already adopted in specific disease. What it means really for member state, I think, is the fact that a minister of health has to establish some priorities and there are some budget constraints. So the fact of being able to adopt some actions that deal with several one at the same time, so for example, improving access to treatment can benefit different disease specific. So this is those commonalities that are going to be addressed and reinforced. So it won't interfere at all, or won't minimize national disease specific plans, but it'll reinforce on the other hand.
Sam Pauly:
Paula and Alex got lots more to talk about, but before we carry on our conversation, as always our One Voice for Neurology answerphone has been filling up with messages. Let's take a listen.
One Voice for Neurology Podcast Answer Phone:
Hello, you've reached the voicemail of the One Voice for Neurology Podcast. Please leave your message after the tone.
Dr Tarun Dua:
Hello, my name is Tarun Dua, I'm head of Brain Health Unit in the World Health Organization. The last few months has brought all of us together, the WHO, the professional associations, the patient associations, people living with things, many of the neurological disorders, their families, and caregivers, towards the development of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders. It is providing us the momentum, a unique opportunity of make a difference. Making difference together is what we should strive for, work for, so that we are able to achieve the ambitious target that this action plan has. I look forward to working with everybody around the globe to make that happen.
Isabel Cerdá Marcos:
Hello, it's Isabel Cerdá Marcos calling from Lundbeck. As a neuroscience pharmaceutical company, we are dedicated to brain health so everyone can be their best. We really want to congratulate you on your achievements over the past year. The World Health Organization's current work on neurology is an unprecedented opportunity for all of us to join forces and improve the lives of those living with a neurological disorder, and that is exactly what the OneNeurology has enabled us to do. So thank you. Together we've been able to raise awareness of the prevalence and burden of neurological disorders. We've been able to educate decision makers, advocate for better policies, and strengthen the voice of those with lived experience. We're very much looking forward to continuing supporting the global neurological and brain health agendas with our OneNeurology Partners.
Monica Di Luca :
Hi, I'm Monica Di Luca from European Brain Council, and you're listening to the One Voice for Neurology Podcast.
Sam Pauly:
Orla, let me bring you back in first. According to the WHO, 70% of the global burden from neurological disorders is from low to middle income countries. Now, what should we know about people living with neurological disorders in these regions, and how can the partnership help bringing the action plan to their local governments?
Dr Orla Galvin:
So in low and middle income countries, we speak about the lack of data, the lack of access, and the urban and rural divide. But one key component particularly stands out for low and middle income countries is the issue around stigma, and many people don't present and come forward with their condition because of that. And we do know that globally 92% of people living with a neurological disorder report living with stigma as well because of that disorder. What we're already seeing with the OneNeurology Partnership is some insight, experience, and expertise being shared among disease specific groups, among different stakeholders. The frequency of the communication and collaboration is really ramping up to support the lower and middle income countries, to support the development and generation of the data that can be used for advocacy to call to action those governments to support low and middle income countries.
Sam Pauly:
Alex, would you add anything to that?
Alexandra Heumber-Perry:
I think the OneNeurology really has the capacity to liberate the awareness, because there we need a lot of awareness at regional and national level still to explain why neurology is a priority. In many countries it's not the case. Even though there would be a global action plan at global level, doesn't mean that at national country it will become a priority. So awareness is essential. I think one of the mission of OneNeurology Partnership now is to really continue leveraging that capacity at national and regional level, and at the same times, really continuing at global level because a priority one day doesn't mean it's a priority the day after. So it would be still important over the next 10 years to be present and vocal.
Sam Pauly:
Orla, one of the things that the OneNeurology Initiative has started doing is working with regional ambassadors to drive that regional awareness and impact, and you mentioned that at the start of our interview. Can you do tell us a bit more about them and what their role will be, and also, by the way, for anyone listening, we'll be hearing from some of them in our next episode.
Dr Orla Galvin:
The OneNeurology ambassadors are a mix of patients, of neurologists, of patient advocates cross-cutting many disease areas and all geographical regions across the globe. I would like to take the opportunity to say that the door is open for more ambassadors to join the OneNeurology ambassadors in their program of work, which is really to ensure that the global action plan has support at local and regional level. The ambassadors unite with others who are keen activists and advocates in their own disease areas and in their regional areas to support their governments, support their healthcare systems, to support other advocates in prioritizing the needs that are specific to them. This group works so positively together. The OneNeurology ambassadors are leading out on a paper to support the advocacy actions around the global action plan. This is a strategy that has been approved and agreed by the WHO Brain Health Unit, and recommended in fact, so it's great to see that the ambassadors are already doing what is being promoted and encouraged by the WHO in support of the global action plan.
Sam Pauly:
And I know if anybody is interested, they can go to the oneneurology.net website and find out more there and have a look and get in contact with the partnership through that platform. Let me just turn to what else is next. Obviously, the ambassadors is a really important part of that, but Alex, what do you think are the next steps?
Alexandra Heumber-Perry:
Well, the immediate one will be the preparation of the World Health Assembly. So in May, the last week of May, the global action plan, the draft global action plan on neurological disorder will be discussed for a final round and will be hopefully adopted. It could be some discussion by some member state that could decide to question the adoption or to question the scope. So we need to make sure that between now and May we mobilize our strength, we mobilize our contacts and the partners of OneNeurology Partnership are contributing to that, to talk with the member state, to talk with the different stakeholder, to make sure that the momentum is here, and every member state agree to adopt an ambitious and meaningful plan.
Sam Pauly:
Orla, lots there to do for the adoption of the global action plan. What other activities do you think are the next steps that need to happen?
Dr Orla Galvin:
As Alex has mentioned, we need to continue that push and that drive in support of the plan. But what we are seeing at regional level is the mobilization of neurology groups at national level to start fostering the collaboration that is needed for the implementation of the plan at national and regional level. So that's among neurologists, among different disease specific patient organizations and advocacy groups, and indeed among different brain councils at the local and regional level. It's great to see this, it's great to see the ambition and the drive, but we need more of this. And we need to ensure that there is a timely start to the implementation. We do have 10 years, but 10 years is a short amount of time for the huge amount of work that is needed to deliver on the targets.
Sam Pauly:
Well, we'll have to leave it there, but thank you both so much for joining us, and here is to the next 12 months. Well, it's been really fantastic to hear today about all the incredible work that's been going on, but before we finish, let me give the last word to the two founding partners, the European Academy of Neurology, or EAN, and, Joke Jaarsma, president of the European Federation of Neurological Associations, or EFNA. Do join us again for our next episode, when we'll be hearing from OneNeurology ambassadors from around the world, and Dr. Tarun Dua, head of the WHO Brain Health Unit. And of course you can stay up to date and join the conversation by following the hashtag #OneNeurology. Until our next episode, here are our final two answer phone messages.
One Voice for Neurology Podcast Answer Phone:
Hello, you've reached the voicemail of the One Voice for Neurology Podcast. Please leave your message after the tone.
Prof Matilde Leonardi:
Hello everybody, I'm Matilde Leonardi, I'm a neurologist from the National Neurological Institute Carlo Besta in Milan, and I'm also member of European Academy of Neurology International Liaison Group. I think we are living today in an incredible revolution for neurology, and from a neurology perspective, this is really something that we never believed in before. In fact, May 2022, the World Health Assembly is going to approve the global action plan of neurology and other neurological disorders, which is bringing neurology in the public health arena as one of the main area that needs investment for improving research, improving care, and improving also funding for all these actions that can help the health of people with neurological diseases.
We will also need a neurology booster in terms of education for neurological forces. I think that having neurology in the public health scenario is one of the main domains for which, with indicators, targets, and very precise action, we have to work for the next eight years, will give us more strength so as to improve the health of all neurological patients all over, not only in Europe, but in the whole world. I think that EAN, together with the other association in the world will work towards reaching the objectives that the global action plan is proposing to us. I believe that together with patients association and many other supplementary people dealing with neurology, we can really reach some of the objectives that are in the ambitious global action plan, feasible, and reachable, only if we were together. This we have been learning in the past months. This is what we're going to do in the future.
Joke Jaarsma:
Hello, my name is Joke Jaarsma, I'm the president of EFNA, the umbrella of pan-European neurological patient groups. As patient in particular, we have been anxiously waiting for more attention for and research in neurology for breakthroughs. Since the launch of OneNeurology, we have seen a number of major and significant developments in which the patient voice has been crucial. I do hope that the result of all the hard work that has been done and is going on will be a greater focus on all neurological diseases, the commonly known ones, and the less well known, often neglected ones.
Sam Pauly:
Thank you for listening to the One Voice for Neurology Podcast, produced on behalf of the European Federation of Neurological Associations and the European Academy of Neurology, the umbrella organizations representing patient organizations and neurologists in Europe, with active contribution from the European Brain Council. Produced and hosted by Sam Pauly.