Neurology is a truly global challenge, with the low- and middle-income countries carrying the heaviest burden.
This episode is about the challenges facing people living with neurological disorders in different regions of the world, and how governments, healthcare professionals and patient advocates can help turn things around.
Tune-in and join Sam Pauly and her international guests in the debate.
Neurology is a truly global challenge, with the low- and middle-income countries carrying the heaviest burden.
This episode is about the challenges facing people living with neurological disorders in different regions of the world, and how governments, healthcare professionals and patient advocates can help turn things around.
Tune-in and join Sam Pauly and her international guests in the debate.
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 on 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 11, The Global Picture.
Sam Pauly:
Welcome to the One Voice for Neurology podcast, and thank you for joining us today. We are delighted to have you with us. Today, we're going to be hearing from voices around the world as we look at the global picture concerning neurology. Later on in the episode, we'll be having a round table discussion to hear about different situations and needs from three very differing countries, Nigeria, Italy, and India. We'll also be hearing from someone living with epilepsy in Uganda, and on our answerphone message we'll find out what's being done in the pharmaceutical industry to advance the situation of people in different global regions.
But first, I'll be speaking with Dr. Tarun Dua, head of the WHO Brain Health Unit. We'll be looking at some of the various challenges and situations around the globe. Dr. Tarun Dua, a very warm welcome to you and thank you so much for being with us. It's great to have you, and of course so much has happened since we last spoke 12 months ago.
Dr Tarun Dua:
Indeed. Thanks, Sam, and thanks for having me here today. A pleasure to speak again with you and to all the audience who are listening in.
Sam Pauly:
In a moment, I'd like to look at some of the various challenges and situations around the globe. But first, let me just ask you about the global action plan. It's expected that the WHO's Intersectoral Global Action Plan on epilepsy and other neurological disorders will be adopted at the World Health Assembly in May. How much of an achievement is this, and what do you think the global action plan will aim to do?
Dr Tarun Dua:
Indeed, the action plan will be presented to the World Health Assembly in May with the recommendation from the executive board that they adopted. I would say it's a big achievement for everybody who has contributed towards the development of this action plan. This includes experts around the globe. This includes us as the WHO secretariat, but more importantly, people with lived experience, their families, their carers who have contributed all across the process, more than a year long process, where they reviewed various tracks, participated in various focus group discussions and shared their experiences with us. The action plan, which has provided us a unique opportunity for all of us, all different stakeholders, to come together, to speak in one voice. Then it provides the roadmap for coordinated action, so that we all work together to decrease the burden associated with the neurological disorders across the globe. So congratulations to all of us for reaching where we are today.
Sam Pauly:
It really is a fantastic achievement and our congratulations to you all as well. Now, moving on to look a little bit more about the global picture, according to the WHO 70% of the global burden from neurological disorders is low to middle income countries. Can you paint us a picture of the different challenges and situations being faced by people living with neurological disorders in the different regions around the globe?
Dr Tarun Dua:
We all know that the burden due to neurological disorders is very high and especially high in low and middle income countries, where majority of people with these [inaudible 00:03:54] live. Giving you some facts and figures to tell us the high burden. So for example, if there are 50 million people living with epilepsy, majority, 80% of them, live in low and middle income countries, as you were saying. But out of these people, living in low income countries, only one in four people will receive treatment, so leading to high treatment gap for many of these neurological disorders. There are many reasons for the high treatment gap that we see across the world, especially in low and middle income countries, but one of them is lack of specialized workforce, lack of health workforce, for example, neurologists. There is inequity across low and middle income countries and high income countries. So, for example, if there is high income countries and the average have one million population has 71 neurologists, in low income countries it is only one neurologist per a million population.
There are many other reasons for high treatment gap and one of them is lack of access to essential medications. So, for example, a simple cost effective, inexpensive medications for Parkinson's disease, for epilepsy, they are not available at primary healthcare. So clearly this requires an action by the countries at policy level, at service delivery level so that the treatment gap get reduced.
Sam Pauly:
Tarun, you said that 80% of the people who are living with epilepsy are in low to middle income countries. Why is that?
Dr Tarun Dua:
So one, majority of world's population is in low and middle income countries. So 80% of the world's population is there. But the other reason is also, there are many preventable causes of epilepsy, such as infections or epilepsy that is secondary to poor newborn or child healthcare. So these preventable causes of epilepsy they are much more common in lower and middle income countries. Therefore, while at one time we are asking, and it is important that we get these treatments and the other hand, we need to promote brain health. We need to prevent these causes of neurological disorders like infection, trauma, environmental causes so that much of the burden can be averted.
Sam Pauly:
One of the themes that seemed to come through a lot in our previous episodes was stigma. How much of a problem is stigma around the globe?
Dr Tarun Dua:
So earlier I was talking about many of these issues, which are supply side issues, but then there are demand side issues. Stigma, discrimination are important reasons that many a time, a person may not know that they have a condition and just because of stigma, they may not come to the health facility for treating them. Then there is also poor awareness in the health workers, for example, who are working at primary healthcare facility. They may not know that anything can be done about these conditions. Then, of course, the discrimination that happens. Children with epilepsy are not allowed to go to school, or people with many of these conditions are not offered employment in an equal manner. That leads to poor quality of life for many people who are living with these disorders and also for their families.
So on one hand, we talk about having better policies and legislation. The other side, we need to have better awareness, better understanding and systems in place to address the stigma and discrimination. You would be pleased to know that the action plan has strategic objectives and action areas, providing guidance to what countries can do and what other stakeholders can do about these issues.
Sam Pauly:
I'd like to a little bit more about the plan in just a second, but before we move on from that situation around the globe, of course, we hope that we're seeing the end of the or coming through the global pandemic of COVID-19. Has the COVID-19 pandemic changed the global picture at all?
Dr Tarun Dua:
So the situation because of COVID-19 pandemic, if anything, has worsened, and I'll tell you why. One, we are seeing more and more neurological manifestations associated with COVID-19, for example, stroke. This was experienced in people who were being admitted to hospitals in intensive care. There is also this concern about post COVID-19 condition. We are seeing many of these neurological features and the concern about the long term effect this might have. The second point is that people who had preexisting neurological disorders, they had increased risk of getting severe infection or even die. Then we saw, for example, people living with dementia, getting worsening of their condition because of social isolation. Lastly, COVID-19 led to disruption of essential neurological services. But I see also a silver lining because of COVID-19. It has shown across the globe that if we come together much can be achieved. I hope we can carry the same optimism for neurological disorders that we can achieve together.
Sam Pauly:
Tarun, coming back to the plan, we talked about how it can start to bring real change for people living with neurological disorders. For different regions and nations, is there any support available to assist with the implementation of the plan?
Dr Tarun Dua:
The Intersectoral Global Action Plan is global. The point that I would like to make here is no one's stakeholder can do it at all. It requires coordinated action by WHO secretariat, by member states, by professional associations, by private sector, by philanthropic foundations, by patient associations. So all of us, we do work together. As WHO secretariat, we are committed to provide expertise or technical support across all the regions to all the countries to make it happen. The targets are very ambitious, but I hope that together we can achieve them.
Sam Pauly:
And do you sense that the will is there across all of the community?
Dr Tarun Dua:
I see the will definitely being there. We heard during the executed board from member states. We heard from many of the civil society organizations who made statements, and we are hearing through OneNeurology initiative, for example. That the commitment to make it happen, to come together to see that the action plan is implemented so that we are able to avert the burden that is due to neurological disorders and improve the functioning and quality of life for people living with these disorders, as well as supporting the families, the caregivers.
Sam Pauly:
This feels like a very important moment. Indeed, I think if I'm not wrong, it's the first time in WHO history that neurology is being looked at as a whole field and with a framework to be adopted. What's your hope for the future?
Dr Tarun Dua:
Indeed, this is the first time that we are going to have an action plan. We see this as a paradigm shift towards action happening in all the countries. My hope is that we all work together. That we invest in making sure the ambitious targets of this action plan are achieved. Moreover, that we are able to impact the lives of people living with these disorders and their family.
Sam Pauly:
Tarun, we'll leave it there, but thank you so much for joining us, for painting that picture and for talking about the future. It's been really fabulous to have you with us. Thank you. Now, let's hear from someone who is living with a neurological disorder. Nina Mago is living with epilepsy and she sent us this diary from Uganda.
Nina Mago:
Hi. I'm Nina Margo, a Ugandan living in the capital city, Kampala. I am the founder of the Purple Bench Initiative-Uganda, but I'm also an advocate and a public speaker on epilepsy and inclusion. I was diagnosed with epilepsy at six years old. I am in a daily battle with epilepsy, which causes me to have déjà vus, tastes in my mouth and funny sounds in my ears. Leads to my heart racing, I lose consciousness and fall to the ground. I will later wake up feeling dizzy and wondering what just happened. Epilepsy has surely affected me in several ways. I am plagued by fatigue, muscle aches, and hardly get a good night's sleep. This comes off as laziness to other people and it also means that I'll have long hospital visits most of which cause a lot of anxiety because all the tests, with any different change from what it used to be, would mean a drastic change in the medication that I'm taking and so on.
But also, I have had to rediscover myself after peeling back the layers that I thought made up the personality that I am, but rather was molded by effects of fear and stigma through the years. Living with epilepsy in Uganda is a nightmare. It is a dreadful experience, made worse by the unpredictability of the seizures and also the myths and misconceptions about the condition. But the realization that without your friends and family, you are vulnerable and alone is really what compounds the fear of living with a condition like epilepsy. For me, the global action plan spells hope. Hope for specialized care, hope for stigma free society and hope for a life lived with dignity.
Vladimir Hachinski:
Vladimir Hachinski. I'm professor neurology at Western University in London, Canada. You're listening to the One Voice for Neurology podcast. Thank you for doing so.
Sam Pauly:
Well now let's take a trip around the globe to hear more about the various challenges and needs that different countries and regions face. To do that, I'm delighted to be joined by three of our OneNeurology ambassadors, Dr. Bindu Menon, professor and Head of Department in the Department of Neurology at Apollo Hospitals in India and secretary of the Dr. Bindu Menon Foundation, a nonprofit organization which primarily focuses on spreading awareness and reducing the treatment gap of neurological disorders. Professor Mayowa Owolabi, Director of the Center for Genomic and Precision Medicine and Dean of the Faculty of Clinical Sciences at the University of Ibadan in Nigeria and lead co-chair of the World Stroke Organization-Lancet Neurology Commission on stroke. Professor Matilde Leonardi, Director of Neurology in the Public Health, Disability Unit and Coma Research Centre at the Carlo Besta Neurological Institute in Milan.
A very warm welcome to all three of you today and thank you so much for being here with us. Let's start by understanding a little bit, a snapshot really of your individual countries and maybe regions as well. Can you, in a couple of sentences, just give us a quick picture of the situation for those living with a neurological condition in your country. Matilde, let me start with you.
Prof Matilde Leonardi:
Italy is a big nation of 60 million inhabitant and we have some 1000 neurologists. So we are a lucky country where we can take care of our patients. We have centers of excellence. However, we are coming out of a very difficult time. The COVID pandemic provided difficulties for particularly outpatient. We never have been in shortage of care, but the COVID pandemic has for the other millions of people around the globe with other disorders, certainly for those who were affected by chronic neurological condition. Particularly for children who had the double burden of having a neurological condition and having been out of school in a sense due to the lockdowns has been increasing the burden of neurological diseases, which also in Italy which is an aging country, is affected by mostly neurological and neurodegenerative disorders. So we have one million people with Alzheimer in my country and we have Parkinson disease, but as all the other countries of the also headaches are a main cause of burden in the country. We have the facilities, but they're not enough.
Sam Pauly:
And Mayowa, could you give us an idea of the situation in Nigeria?
Prof Mayowa Ojo Owolabi:
Thank you. Thank you very much. Well, Nigeria has a population of about 220 million, with one of the biggest cities in the world, which is Lagos, the fourth largest economy in Africa with the population of more than 25 million people. But there are also people who live in the rural regions. Nigeria, just like the rest of Africa, is experiencing an epidemiological transition whereby noncommunicable have taken over as the lead cause of deaths on the continent since 2019. Chief among these noncommunicable disease and logical disorders particularly is stroke. Therefore, every single minute, one Nigerian develops a stroke. Every single minute, about six Africans develop a stroke because one out of every two or three adults in Africa have hypertension, out of which only 7% are controlled. But stroke is just one of those conditions. There are other conditions that are disabling and are neurologic on the continent, and that includes epilepsy, that includes spinal cord disorder spondylosis, neurodegenerative conditions like dementia, Parkinson's disease, and these are all very, very, very important.
Sam Pauly:
Bindu, let me come to you if I may. Could you give us again a snapshot? I know that there's the rural issue, which is probably quite similar to Nigeria as well, but maybe you could give us that picture of the situation in India.
Dr Bindu Menon:
Thank you so much. Now India is the world's second most populous country and accounts for around 18% of the global population and has got its challenges in public health. India is also going in epidemiological transition where noncommunicable diseases have almost doubled and the communicable diseases have come down by almost one-fourth, but then they're still existing. Then we are running a double brunt of diseases at this point of time. More so, now we have the new global burden of disease study, which has been recently published. The major brunt of the disability is due to stroke. It is due to epilepsy. It is due to the communicable diseases in which we have anchor flight is also looming large.
There's another one more issue which we face is that India is a country with 28 states and eight union territories. So that is very important for us to realize because within the states, there is a difference. Inside the state itself, there is a rural and urban disparity again, where the medical facilities are predominantly in the urban areas. This is because of the multifold reasons where the socioeconomic status, the education level, the poor physical access to the good quality health services to the urban areas, the high out of pocket expenditures with poor investment in health. So India at large has got its own health challenge and this needs to be taken in the right perspective when policies are going to be implemented.
Sam Pauly:
And we'll come to policies a little bit further on, but Mayowa maybe I could bring you back in because Bindu was talking there about some of the challenges. Are they similar challenges to the ones that you face in Nigeria or?
Prof Mayowa Ojo Owolabi:
Actually, there a lot of challenges in all the spheres of activities for neurology in Nigeria. Back about a decade or so, over a decade ago, I actually did a review published in Archives of Neurology, now JAMA Neurology, that looked at neurology population ratio in African countries. We had the lowest in the world then and even up to now, with up to 17 countries having no neurologists at all. To make matters worse, right now there is a very, very huge challenge of brain drain, of migration of health workers, all categories of health workers. So personnel is a major issue. Not giving sufficient attention to neurological disorders is a major issue. Then not giving sufficient attention to prevention, which I think is the easiest way to deal with the very, very huge burden.
But I think the first thing that we need to do is what we are doing right now, which is raise our voice, speak with one voice and let everybody come on board and speak for neurological disorders. Then we can attract the resources that are required to fight neurological disorders. That is going to involve patients participants, the entire populace.
Sam Pauly:
You mentioned talking in one voice there and coming together. Let me ask you all if there's anything that's working well in your particular country or region that other countries or regions could maybe be learning from, that could be examples. Matilde, have you got anything that you think is working very well in Italy?
Prof Matilde Leonardi:
Well, I think that before this, I would say that we are now in the year of the neurology revolution because I've been working in neurology for many, many years. 30 years ago when I was a very young neurologist working at WHO, I was dreaming of having neurology as a public health issue. That was unimaginable. Today, we are looking at the WHO for the first time since 1948 launching a WHO action plan on epilepsy and other neurological disorders. From there, I think, we will have the guidelines to see which are the indicators that are saying that the country is taking care of neurology. Good practices can be shareable, of course, but I will say that there are some things that we can all do for declining the burden of neurological disorder.
One is the issue of stigma. It's an over hierarchy issue. In some countries, this might prevent people to get a job or to go to school. I'm thinking to people with the epilepsy in some countries. In others, I would say that having a neurological disorders and lacking rehabilitation that is not considered a health intervention in many, many countries, despite we have now a big rehabilitation 2030 initiative saying that every country should provide rehabilitation. That is something we could share the ability to equity of access to care for any patient in any part of world. That is something that we would, as experts, wish.
Sam Pauly:
And Bindu, let me bring you back in. I saw you agreeing about the stigma as well, and I know that stigma is a huge problem. Do you want to pick up on the stigma or is there anything that you think that maybe India is doing well that we can learn, that you can add to Matilde?
Dr Bindu Menon:
As far as India is concerned, we have a mixed healthcare system which is inclusive of public and private healthcare service providers. Something which is different I find is that there is an easy access to emergency as also to a specialty and a super specialty outpatient care, but very little minimal waiting time. There is an urban-rural disparity, but in the urban sector, there is very little waiting time. There is little waiting time to the crucial diagnostic investigations, which helps for an early diagnosis and care. The medications are also available at an affordable cost at the government of India pharmacies.
Then lastly, neurological disorders, I feel that need a lot of support to cope in the disease journey. India predominantly has a joint family system. As for me and for my colleagues, what we do, especially in the rural sector, this gives us an edge to educate the family members and make them the support group. I also find that there's another one, important thing that's happening in India is there is an increasing as digital consumers, which gives us an extremely immense opportunity to liberate the technology to transform the public health.
Sam Pauly:
We will now talk about the global action plan, but before we do, could you maybe just all give us one sentence on you think policymakers are currently addressing the neurological needs? How's that going? Mayowa, let me ask you first.
Prof Mayowa Ojo Owolabi:
Well, I think policymakers right now are not giving neurology the right attention. Even though everyone is talking about the SDGs, everyone is talking about developing their countries. I mean, I'm talking about politicians, wanting better quality of life, standard of living human development capital for their different countries. But little have they realized that brain capital is actually at the very center of human capital and that right now, most jobs require creative skills, cognitive skills, which are all coming from the brain. So this is extremely important and that every living person as a one in two or three chance of developing a neurological disorder. In fact, the bulk of NCD is almost 73% of them have some neurological on that too. I think they don't know and we as experts need to let them know that it really needs to take the center stage. I think that's very important. Then we can recommend to them how this should be done.
Sam Pauly:
Matilde, let me just ask you quickly. Just in a nutshell, just at the moment before we move on to the implementation of the global action plan, the adoption of the global action plan, currently how do you think policymakers are addressing the needs right now, just in a sentence or two?
Prof Matilde Leonardi:
The issues that the world has been focusing on COVID for the last 24 months, and this is draining attention to the day to day health life of countries. What it is missing globally, I would say, is the care for the long term care, the back to life, back to work and I will say nobody is adopting the theory of despite. Despite having a neurological condition, people want to have a life, they want to go to school, they want to work. It seems that this despite it's difficult because if it's not acute, then the follow-up care and integration of health and social is very difficult. At national level in almost other countries and particularly for some countries, the issue of burden is not taken so much seriously in terms of also economic cost.
Sam Pauly:
Bindu, would you agree with that or add any on that from your region?
Dr Bindu Menon:
Absolutely. In India, also, there are several national and welfare programs, but as Matilde said that in these last two years, everything has taken a backstage. To add to it that it was already at a tortoise stage. It was moving very slowly. There are certain preventive programs for the control of cancer, diabetes, cardiovascular and stroke. It's all clubbed together. There are no programs which are focused essentially to only neurological disorders, hoping that this will lessen the burden of the noncommunicable diseases and enhance the facilities, certain welfare programs. But all of these policies need proper implementation because us is an extremely large country with a huge population, with several social, cultural, and ethnic differences across all the states. This just require a lot of awareness drive through all the media platforms in an efficient, dedicated, training the workforce who would help to realize the government effort to bring it down to the basic level, to the person, patient level.
Sam Pauly:
Well, this is such an interesting discussion and we will carry on in just a short moment. But first, if you've listened into one of our episodes before, then you'll know that we like to include as many voices as possible in each episode. Each episode, we ask different guests to leave us a message. So now let's hear from a couple of our supporters on the work they're doing to advance the situation of people living with neurological disorders in different parts of the globe.
Speaker 9:
Hello, you've reached the voicemail of the One Voice for Neurology podcast. Please leave your message after the tone.
Simona Skerjanec:
Hello, my name is Simona and I work for a pharma company called Roche. I sit within an organization that builds these strategies to bring medicines to patients globally. Our aim is to ultimately improve the outcomes for patients in various diseases, as fast as possible. To do this, we know we need innovation in biology and technology, but also innovation in process of care. Biology and technology tend to be universal while the process of care tends to be more local or regional. So we, at the global organization, work very closely with our affiliates in the countries, who then work very closely with the systems of care in these countries to bring better outcomes to patients faster. Having said all of this, wouldn't it be amazing if we would be able to make process of care more universal as well. That is one of the reasons we wholeheartedly support OneNeurology network.
Dr Vreni Schoenenberger:
Hi, I'm Vreni Schoenenberger, global franchise head of External Affairs and Market Access in Novartis Neurosciences division. Novartis is a Swiss pharmaceutical company with a long history of developing breakthrough innovative medicines in Alzheimer's disease, multiple sclerosis and migraine among others and is currently working hard to bring to bear treatments in Huntington's disease, Parkinson's and neuropsychiatry. However, this Brain Awareness Week, we would like to reaffirm our commitment to ensuring that people living with neurological conditions receive the right treatments and the right care in a timely manner, regardless of where they live in the world. In order to help achieve this, Novartis Neuroscience has recently relaunched the Novartis access principles, which describe how we will ensure access to neurological treatments in lower and middle in countries, and is backed by the issuance of a multi-billion dollar sustainability link bond tied to our performance in achieving these access goals.
Additionally, we have worked to make sure that our medicines get to patients faster by reducing the amount of time our multiple sclerosis medicines spend in regulatory or reimbursement approval processes and are working to address the myriad access barriers that exist in local lower and middle income country contexts. Most importantly, however, we have committed to fully support the grassroots advocacy of the neurology community that works tirelessly on behalf of those living with neurological conditions, and to partner with bodies like the World Health Organization, national ministries of health and local healthcare systems at implementing holistic actionable policies that prioritize improving access to care and treatment for those living with neurological conditions.
Sam Pauly:
Some really interesting thoughts there on our answerphone messages. Now let me bring back our guests to conclude today is discussion. Just a reminder, we are talking to Dr. Bindu Menon, professor of Head of Department in the Department of Neurology at Apollo Hospitals in India, and also secretary of the Dr. Bindu Menon Foundation, which primarily focuses on spreading awareness and reducing the treatment gap of neurological disorders. Professor Mayowa Owolabi, Director of the Center for Genomic and Precision Medicine and Dean of the Faculty of Clinical Sciences at the University of Ibadan in Nigeria, and also lead co-chair at World Stroke Organization-Lancet Neurology Commission on stroke. Professor Matilde Leonardi, Director of Neurology in the Director of Neurology in the Public Health, Disability Unit and Coma Research Centre at the Carlo Besta Neurological Institute in Milan. Thank you once again for all being with us and let's carry on with that discussion we were having.
Now, the first global action plan ever on neurology is well on its way. We hope to being adopted at the World Health Assembly this coming May. It includes guidance for action at country level. How does that make you feel and how do you see the global action plan helping? Bindu, let me come to you first.
Dr Bindu Menon:
I find that this is an extremely optimistic and a promising plan as well. For one, neurological disorders are receiving as due priority, and this global action plan will help to refocus the health policies to prioritize the neurological disorders because we know that if you take in India, over the last two decades, the neurological disorders have increased by twofold. So it is going to prioritize the neurological disorders and it is going to coordinate the implementation. The burden of neurological disorders is going. We are out of the COVID pandemic, but then we know that the number of patients with neurological disorders are also going to grow to pandemic proportions. Then if we don't act now, it would be too late for us to act. This needs integration of care across the neurological diseases. That, I see, is a very big task because every country has got its own priorities of health and within the neurological disorders have got different issues as well. It's a big challenge, but then I also see hope.
Sam Pauly:
Mayowa, what are your thoughts?
Prof Mayowa Ojo Owolabi:
I think this is a very, very exciting moment for the whole all of humanity. We all know that the reason human beings are different from other mammals or even primates is the brain. It's not the heart. It's not any other thing. So I think it's good that we are recognizing that the brain and our nervous system is extremely important for every other thing that we do as human beings. So putting these at the very, very center stage can only happen because of humanity. So this is really revolutionary for humanity. I think engaging at the World Health Assembly gives the opportunity of rallying support from global leaders, from different sectors. Not just from the health sectors, not just ministries of health across the globe, but also those who can supply and provide the required resources from the private sector, as well as the public sector and even funders of research. And even those who are suffering from neurological conditions and those who are at risk of neurological conditions, which is actually almost everybody is at risk of neurological conditions. So I think it's really going to be, again, a lot of momentum.
Sam Pauly:
Matilde, what are your feelings on the first ever global action plan on neurology hopefully being adopted and again, how do you see it helping at national level?
Prof Matilde Leonardi:
I think that it is a historical moment for the neurological community and we have to celebrate it by implementing and supporting the politicians to implement. There will be a set of indicators that for the next eight years, until 2030, will be given to countries. So as to try to match whether their action are responding to the challenge of giving answers to people living with neurological disorders, but it is not only that. You also have to think to dealing with brain in a different manner. Brain health doesn't mean brain without disease. It means that you might have some neurological disorders. However, you take care of anything that can be put in place in terms of prevention, in terms of research, in terms of care and in terms of also back to life.
Not all countries will start at the same level. However, every country can do something to improve global neurological health. This is what the global action plan wants. The global action plan is giving us means at political level, but also the practical level. We, as individual neurologists, can do a lot together because we are a family. We are a community. Together with our patients and our patients' association, we could help governments to identify, which are the priorities.
Sam Pauly:
Let me ask you a little bit more about your own roles in this, because all three of you are OneNeurology ambassadors. Now the global action plan is setting an ambitious target that every country in the world should be running advocacy campaigns on neurology. How do you think this can turn into a reality in your country, your region, and what role do you think that you can personally play in that? Mayowa.
Prof Mayowa Ojo Owolabi:
I think one of the key things we've done in Africa is have the World Federation for Neurorehabilitation, the Sub-Saharan Africa region. We use these to bring together all professions that are interested in the chronic care, reintegration, recovery of people living with neurological disabilities. It's becoming something that is getting stronger each day, bringing on board both the Anglophone as well as the Francophone African countries. Now looking at the main diseases that are causing neurological disabilities in Africa. For stroke, just last year, we established the African Stroke Organization. This, again, was launching a big way that had all the different disciplines represented. Then recently we also formed the African Dementia Consortium. Again, that will help with mental health, brain health and dealing with cognitive problems on the continent. So, through these organizations, we're able to rally the support of all stakeholders, experts, policymakers, the populace generally and other advocates and ambassadors that can help energize and lead actions at different levels, locally through the government, through change in policy and of course also globally.
Sam Pauly:
Bindu, what role do you think you can personally be playing as an ambassador running these advocacy campaigns as part of the ambitious target or in other areas as well?
Dr Bindu Menon:
I suppose that if we need to realize this extremely ambitious goal, we would need to have the help of the whole neurology community. In India, I suppose how we would probably like to go about is that if you look at stroke, we have an Indian Stroke Association where there are members there, where there's a body there. If we look at epilepsy and one of the major disorders which is associated with a lot of stigma, which is associated with almost 80 to 90% of treatment gap in the country, we have two organizations which look at. One is the Indian Epilepsy Society and the Indian Epilepsy Association. Indian Epilepsy Association being the voice of the patients because we have a lot of patients who are patients, caregivers, and people who have an interest in epilepsy, or as members in the organization. I think this would be a good forum where we can reach out because they would be the voice of people.
So we need to move as a neurological community. Step down into the public and become the voice of the people. But then at the same time, look at all the other help from the different community groups whom we can mobilize.
Sam Pauly:
Matilde, what do you see your role as an ambassador being?
Prof Matilde Leonardi:
We need to take care of our patients by feeling that we're part of a community. So the loneliness of doctors sometimes should be also mentioned, and in many countries they are alone because they don't have connections. They're not in network. We need to feel that there is a global community taking care of these patients and patients need to feel they're part of global community. I will say that the use of technology, I mean, neuroscience as such is one of the most advanced developing areas for research. But that research should be combined with a more public health approach and more public health and more going down to the issue of public health, which are prevention, promotion care, and not only care, but also taking care of life after the diagnosis, which is usually what we are very good in.
We, as neurologists, are the master of neurology, the master of diagnosis. But I would say, we need to do a bit more. We need to connect. If each of us is doing a small thing together, we can do a lot. So that is my message. Everybody can be an ambassador and neurology needs ambassador worldwide. There are many countries in which patients are neglected, patients are denied care, patients are under recognized and patients are discriminated.
Sam Pauly:
Thank you very much for finishing with that message. Bindu and Mayowa as well, I'd like to ask you both, just in one sentence to finish off, if you could leave a message to the rest of the neurological community or perhaps further than the neurological community, what would that be? Bindu.
Dr Bindu Menon:
We have got an excellent opportunity and brain has been prioritized as a very important organ. I would like to reach out to all my colleagues and like-minded people who would want to join hands to give this whole global action plan a priority and push in their own level at this simple level, at their place. Also, into the community, taking the patients, their caregivers, and across the spectrum of prevention, detection, diagnosing, and especially the posture disease care, which is lacking in my country. The rehabilitation needs to be comprehensive and outright and dedicated.
Sam Pauly:
Thank you, Bindu. Mayowa, just a sentence, your final message.
Prof Mayowa Ojo Owolabi:
The final message is that we should all realize that brain health is central to the sustainable development goal, which is SDG 3. But we all know already that SDG 3 is central to every other SDG. Human health is central to every SDG. Brain health is actually central to achieving human health. So knowing this, we should all, as human beings, take this personal and really make it work. Ensure and promote systems that will help promote brain health, prevent neurological diseases, provide acute care to those who need it, provide chronic care and rehabilitation to those who need it so that we can all as human beings help to prolong life, promote quality of life and improve productivity and human capital development and development of the entire human race.
Sam Pauly:
Well, that's about all the time that we have for today's episode. So I just want to thank all of you for joining us. It's been a real privilege to have you all talking together on all these areas that we've covered. Now do join us again for our next episode when we'll be case studying how a regional framework could help translate the global action plan at a national level, and what lessons can be learned. Do also have a listen to some of our previous episodes.
Now, finally, in today's program, we've heard from a number of OneNeurology ambassadors. These regional ambassadors are supporting the OneNeurology Partnership to ensure that the 10-year Intersectoral Global Action Plan on epilepsy and other neurological disorders has the support of national governments and parliament. The partnership's still looking for more ambassadors for the regions of Asia Pacific, Eastern Mediterranean, North America and Latin America. So if this is something that you might be interested in, then do have a look at the OneNeurology website, which is oneneurology.net. You can find out more information there on how to get involved. Also, for all of our listeners, don't forget to stay up to date with the conversation by following the hashtag #OneNeurology on Twitter, Facebook and LinkedIn.
So finally thank you once again to all of our guests from today's episode, and of course to you for listening in. We hope you'll join us again very soon. Bye-bye.
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.