Without Borders Podcast Dr. Timothy Steiner February 23, 2018
Dr. Gretchen L. Birbeck interviews Dr. Timothy Steiner, NTNU Norwegian University of Science and Technology, Department of Neuromedicine and Movement Science, Trondheim, Norway and Imperial College London, Division of Brain Sciences, London, United Kingdom
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Podcast Part I
Podcast Part II
WITHOUT BORDERS PODCAST TRANSCRIPT
Part I
Birbeck: Well Today we welcome Professor Timothy Steiner to our Neurology Without Borders Podcast. For many of us Dr. Steiner is synonymous with global advocacy for improving headache care. For more than three decades he’s worked in headache medicine. He’s served in leadership roles with the European Headache Federation and the International Headache Society. He’s presently a professor of medicine at Norwegian University of Science and Technology and an honorary consultant at Imperial College of London. He presently serves as the director for the Global Campaign Against Headache. Welcome Professor Steiner and I hope you don’t mind if I call you Tim
Steiner: No, please do. Thank you, Gretchen, and Good Morning to you.
Birbeck: Tim, for the listeners who may not be familiar with the Lifting the Burden and Global Campaign, can you just tell us a bit about it.
Steiner: Yes, of course. In summary, The Global Campaign Against Headache, to give it its proper name, is a partnership program conducted world-wide with the ultimate aim of reducing the burden of headache world-wide. Lifting the Burden is actually a UK registered charitable non-governmental organization. Lifting the Burden leads the global campaign and it has official relations with the World Health Organization. So, LTB and WHO are the essential and principle partners in the global campaign, but in reality the campaign is a world wide network of academic partners extending now into over 40 countries.
The origins of the campaign go back to 2003 – actually they go back to 1995 – but it was in 2003 when the global campaign was actually launched. Although the ultimate aim of the campaign is to reduce the burden of headache world-wide, we needed to know back then in 2003 exactly what that burden was, how is it expressed, who was carrying it and just how big was it. And, although GBD, Global Burden of Disease Survey 2000 had identified migraine as the 19th leading cause of disability in the world, what we knew in 2003 of the scale and scope of the global burden of headache was nevertheless rather limited.
We had few good data, or none at all, from several regions of the world – Western Pacific, Southeast Asia, Eastern Mediterranean, Eastern Europe, most of Africa – more than half the world’s population lived in these regions and we knew very little about their headache burden. So the initial focus of the global campaign has been to support population based studies of headache burden, first developing the methodology, and then applying it in these areas in China and India as priorities (These two countries have 2.5 billion people between them) in Mongolia and Western Pacific along with China; in Nepal and Southeast Asia along with India; in Pakistan, Saudi Arabia, Morocco; or in Eastern Mediterranean; in Zambia, Ethiopia; in Sub-Saharan Africa; in Russia, Georgia, and Lithuania in Eastern Europe. And with these studies, and others that are in progress or planned, the global campaign is filling in the major knowledge gaps, which we must do to know exactly what the problem is before it is possible to formulate sensible proposals for doing something about the problem.
And as we do this, we provide robust data, reliable data, to the ongoing Global Burden of Disease studies so that their estimates of the disability burden of headache are much better informed and more accurate. And at the same time while all this is going on, the campaign of course keeps in mind its ultimate purpose which is to reduce the burden of headache. So it has a range of other activities focused on doing something about the problem, on intervention proposals for the organization of structured headache service based on primary care, development of management aids to support primary care physicians within these services, and very importantly, economic analyses showing that these interventions, if they are implemented, will, in fact, be highly cost effective in all regions of the world, and in many regions, probably actually cost saving. At this intonation, [it] is crucial in persuading politicians of the need to do something about headache.
Birbeck: That is quite a list of achievements and ongoing activities, I think, for any global group. Among the big impressive things in my view. So, first of all, what you’ve described in terms of leading the troops in terms of proper methodologies is quite in line with what a lot of similar organizations for other conditions do. But your partnership with countries in lower income settings has resulted in a number of very important publications, as you’ve indicated, that have given primary data to the GBD work. One of the things that’s a bit paradoxical is, as common as headache is, it really only came into the GBD framework fairly recently. Do you think that’s because there was an absence of data or what other barriers were in place that really prevented the burden of headache from kind of being encompassed in some of the mainstream studies?
Steiner: Certainly it’s a well remarked paradox that headache, has been, and still is, largely ignored. Headache is the cause of more than three-quarters of all disabilities attributed to neurological disorders. It’s also enormously costly. Economic analyses, based on our population data, indicate losses in countries around the world of up to 2% of GDP, because of lost productivity. Yet despite this headache remains under recognized, under diagnosed, undertreated throughout the world. And we can see this paradox but from our point of view, at least, it’s actually a complete mystery, defying explanation. Certainly if you go back to GBD 1990 which was the first of the GBP studies conducted by WHO, headache was completely ignored in that first iteration. WHO, at that time, just did not see headache as a likely cause of public ill health or disability. So there were no data to suggest – or no good data to suggest - otherwise at that time. And because there were no data to suggest that headache was disabling, it was not included in the first GBD survey. It became a sort of self-fulfilling thing. People didn’t think it was disabling so they didn’t bother to include it in global estimates of disability.
Birbeck: You partnered with low income countries to conduct these studies as you worked with collaborators in places. Have you found the same phenomena - that they don’t initially conceptualize headache as being terribly disabling?
Steiner: Nowhere appears to – even in the countries – even in the western world where the data are relatively good about the burden of headache and clearly indicate – clearly signal – that headache is disabling among a large proportion of the population and enormously costly. Even in those countries where the data exist that show this, there is a refusal to – for some reason - to acknowledge that problem. If you go to low income countries where obviously there are public demands on healthcare resources, and other perceived priorities, there’s even lower willingness to recognize that headache may be a problem. There are a number of countries now where we’ve completed burden of headache studies – countries in Sub-Saharan Africa are actually a good example - where we have completed population based studies and deduced very good data of the burden of headache in that country, and taken those data to governments of those countries and shown them this is what headache is in your country, and this is what it’s causing in terms of public ill health and disability and lost productivity and financial cost – still, we find it almost impossible to engage their attention and achieve recognition that it is something that governments ought to, not just ought to do something about, but ought to want to do something about. And this is the persisting paradox and as I say it, that defies, it really does defy explanation.
Birbeck: I think about conditions like epilepsy that often have a very strong grass roots group of advocates that include the family members of people with epilepsy etcetera, and they’ll march down the streets of major cities where they feel like their care delivery is limited and they can get the attention of some policy makers with that. Have there been similar efforts – it’s such a ubiquitous problem it’s really challenging to think about getting people to advocate for it in the same way. But I wonder if that’s one of the limitations.
Steiner: For some reason advocacy for headache seems to be extraordinarily ineffectual. Perhaps it’s the ubiquitousness of headache that in some way works against it, because almost everybody has headache from time to time. And twenty percent of the world’s adult population have a headache disorder, they have headache that is troubling that to some extent impairs their quality of life and to some extend causes disability and lost productivity and all the other consequences of headache. But then there are, perhaps, another sixty percent of the population who don’t have what we might call a headache disorder but nonetheless have headache from time to time, which is a symptom, usually a tension type headache. It’s a mild to moderate headache at worst. It has limited disability and it usually responds fairly quickly to simple pain killers. And this majority, I think, the argument that’s often put forward without, perhaps, strong evidence for it – but this majority who have occasional, not very disabling headache, think that that’s what headache is. And other people, the minority, a large minority, but still a minority, who complain of disabling headaches, it’s not clear to the majority what it is actually that they’re complaining about because they just have headache.
So there’s that issue and that’s really the seed explanation of why friends, colleagues, employers, don’t give adequate recognition to headache and people with headache complain that others do not really understand what it is they are suffering. There’s that in the background. But when it comes to advocacy, you’re right about epilepsy. There’s strong and effective advocacy on behalf of people who are affected by epilepsy and their families. It doesn’t seem to work for headache even though there are larger numbers of people who are affected. And some of them are very badly affected and certainly if you look at the total global disability that comes from even one headache disorder – just migraine – it eclipses the disability attributed to epilepsy. It’s much, much higher. So, I will just end up saying – as I’ve said before – we can see this paradox, but we don’t really understand why it is.
Birbeck: Very interesting. Sounds like something we should recruit our medical anthropology and social science colleagues into helping us figure it out, because it is quite a paradox. The GBD data that came out – number 3 for women number 7 globally - incredibly impressive and really not congruent with what we see in terms of health policy, government action or advocacy, so quite a paradoxical puzzle.
Steiner: In fact, that’s changed cause GBD 2016 which was published in September, migraine on its own is now the second highest cause of disability – the second highest cause of YLDs – of years lived with disability behind only low back pain and in people under 50 migraine is now the single highest cause of disability – according to GBD 2016. So if you look at GBD over the years – 1990 headache wasn’t there, 2000 we got migraine into GBD 2000, and that’s largely thanks to the work of Dr. Matilda Leonardi who at that time was at WHO and we worked with her to get migraine at least into GBD 2000 – which like 1990 was conducted by WHO. And that first GBD to include any headache at all, ranked migraine as the 19th cause of disability in the world and that finding actually was instrumental in persuading WHO that they should at least acknowledge headache and perhaps want to do something about it as a global public health problem. And lead to them committing themselves to work with us on the Global Campaign Against Headache – that was GBD 2000.
GBD 2010, GBD from then on, as you know, was conducted by the Institute of Health Metrics and Evaluation in Seattle. In GBD 2010 we gained the inclusion of tension type headache and GBD 2010 showed that tension type headache was the second most prevalent disorder in the world – second only to dental caries – and migraine was third. But tension type headache actually was given a rather low disability weight. It was not considered to be a particularly disabling disorder – which I think is true. So, despite its high prevalence, tension type headache did not actually add very much to the total measure of burden attributed headache. That still rested with migraine, which in GBD 2010 went up from 19th place to 7th in the ranking of causes of disability. In GBD 2013 we added medication over-use headache, and that itself was ranked 18th cause of disability and headache disorders collectively then moved up to 3rd place. And in the later iterations, in GBD 2015, migraine moved up to 3rd, and now as I say, in GBD 2016 it’s second – and first, top causes, in people under age 50.
And the reason for all of this, of course, is not that the prevalence of headache disorders is increasing it’s just better data. Back in 2000, the data that went into GBD 2000 that lead to the estimate that migraine was the 19th cause of disability, those data came from less than half the world’s population, because we knew nothing about the burden of headache in the other half. And we filled that in, slowly, with the population-based surveys that we’ve done, fed those into GBD and that’s what’s lead to migraine continuing to move up the rankings. And it will go on doing so because all of the studies that we do. At the moment the global prevalence of migraine is estimated at about 15% and that takes into account, as GBD does, it takes into account all of the data that exists – some of it of rather questionable quality and some of it quite old. And some of it using definitions of migraine that are now outdated so that case ascertainment was perhaps a little bit unreliable.
As we do these new population-based studies, all using standardized methodologies, all of them are showing – with the single exception of China, which I’ll come back to in a moment – all of them are showing that the prevalence of migraine is substantially higher than the global mean estimate of 15%. We’re typically getting prevalences for migraine of between 20 and 25% and in some countries even higher. In Nepal, for example, it’s very high. It’s about 30% specifically because, incidentally, we showed in Nepal that there’s a very strong association between not just the prevalence of migraine but also the severity of the symptoms of migraine. And altitude and a large proportion of Nepal’s population live above 1000 meters. So we are finding, almost invariably, prevalences of migraine that are well above the global average and as we continue to do these studies, of course, that estimate of the global mean will continue to rise and the estimates of disability that are based on those will rise with it.
China seems to be unusual. There may be genetic reasons why, rather than cultural reasons why the prevalence of headache disorders – generally not just migraine – are low in China. This is something that still needs to be elucidated. But other studies around there – Japan is also probably low. But as I say, apart from those countries in the Western Pacific, everywhere else there is a lot of migraine – a lot of burden attributed to migraine – and GBD will show that I’m sure in future iterations with the burden attributed to headache disorders continuing to increase. At the moment it’s about 8% - 8.6%, I think, of all disabilities in the world are attributed to headache disorders. That’s a lot – 1/12th of all disability.
PART II
Birbeck: It’s a huge burden and amazing that it was really under-appreciated until solid epidemiological work elucidated the numbers. Can you put this the context, in terms of how treatable are these conditions – particularly in some of those regions that we had no data from before, where cutting edge treatments aren’t available. From a health policy perspective, how much of this burden could actually be addressed with better health services?
Steiner: Of course that’s a very important issue. Many years ago WHO told me what are the criteria for a disease being a priority in their eyes and the criteria are four-fold: Diseases that are common – prevalent; ubiquitous – everywhere in the world; disabling; and treatable. Those are the four criteria – all of which have to be fulfilled if priority is to be given to a particular disease. And the first three of those, in relation to headache, have been, I think now quite clearly, objectively demonstrated. Headache disorders are highly prevalent; they’re ubiquitous – wherever we look in the world we find headache disorders are prevalent; and they are disabling - so we fulfill those easily. It’s the treatable aspect that is the problematic criteria not because headache disorders are not treatable but because it’s actually rather difficult to prove that the effective treatment of headache results in a reduction in disability and a recovery of lost productivity.
Just to address your question more directly, I remember when I was talking in the early years to WHO, they focused very much on the treatability aspect and basically said, “What is your treatment? If we’re going to do something about headache, what treatment – what interventions - are you going to advocate?” And I had difficulty in an answering that.
There are a range of effective treatments which are cheap and cost effective, and they include aspirin, antiemetics, and prophylactic drugs such as propranolol and amitriptyline which are inexpensive and available everywhere and, actually are, provided they are used correctly, are quite effective. And then there are, as you know, then there are specific treatments, particularly for migraine, which are much more expensive – effective – but much less widely available. What we are proposing in terms of what is the intervention for headache, in particular countries, everywhere, it’s these treatments - but made available through structured headache services. And structured headache services with a basis in primary care are what we need to persuade health politicians - are the way in which headache disorders can be managed.
I think one of the reasons that politicians don’t want to confront headache disorders is the recognition of the major logistic problems that arise from the shear numbers of people effected. Headache disorders, as I said, effect 20 percent of the adult population. And not quite so many, but still a large proportion of children and adolescents. And about half, probably, of those people need or would benefit from professional care. And that’s a very, very large number of people.
What needs to be recognized is that for the vast majority of people who have a headache disorder, management is actually not difficult. It does not require specialist skills. It certainly doesn’t require specialist investigations or imaging or anything like that to make the diagnosis.
It requires the sorts of skills that are available to health care providers generally in primary care. But they need to know a little bit about headache. One of the things of interest that we did with WHO was to conduct a global survey of not just headache disorders but headache resources in the world which was published as an atlas of headache disorders by WHO in 2011 and that looked at how much education focused on headache in the undergraduate medical curriculum, for example, and the global average in courses lasting 4 to 6 years – the global average teaching spent on headache was 4 hours, which is not enough to give even a basic understanding of headache disorders. So that needs to be changed. So the intervention – as we describe it – is structured headache services with a basis in primary care delivered by whoever delivers services in primary care in a particular country – it may be doctors, it may be nurses, it may be clinical officers – but they should meet the need of about 90% of people with headache who need medical care. About half of people actually could manage themselves perfectly well if they had some understanding of how to do it and that requires a public education campaign. And then the structured headache services above primary care would usually be on one or two levels depending on the way health services are structured in a particular country, but specialist services would be at the apex of those and there needs to be controlled access to the specialist levels so that they’re not inundated by the large numbers of people who don’t need to be there but who currently tend to be there pushing people out who do need them. So it’s difficult to explain without giving a diagram – but that’s the sort of concept - structured headache services supported by education at all levels – particularly educating the general public so that they have some understanding of their headache, of what it might be, of what they can do themselves – lifestyle change to some extent or use over the counter medications in the right way at the right time, and not too much of it. Because medication overuse is a problem in headache and leads to additional and worsening headache. And then in primary care there needs to be some education at that level so that doctors or nurses or clinical at that level to correctly diagnose and manage the majority of headache disorders using treatments that are available throughout the world and are quite effective and then, as I say, the top level is, or should be, reserved for the just 1% to 2% who actually need to be there. The problem at the moment or one of the problems at the moment is, in countries where there are headache services, they tend to be focused on special clinics. For example, both in the United States and the United Kingdom you would see this, headache services such as they exist, are focused on specialist clinics and they can never hope to provide care to more than a very small fraction of people with headache who would benefit from medical care.
Birbeck: So the structure is a bit upside down. Most of the resources should be at the primary care level really.
Steiner: Hmm.
Birbeck: Interesting. So the LTB campaign, its early work as you describe it was really ascertaining burden, developing methods to give very sound epidemiologic data on the burden of headache, clearly that has yielded a great advance in our understanding of the burden. What do you see if you project forward for the next decade what you hope will be the direction and the achievements for lifting the burden?
Steiner: I’d like to give a simple answer to that, but I don’t think I can. Well, we’ve got to change perceptions, and as I’ve indicated there’s no simple way in which that can be done. I think there needs to be a lead from WHO if we’re going to achieve change – mainly in middle and low-income countries. WHO’s priorities are driven not by what they think - or at least if you look at WHO in Geneva – it’s not what they think are priorities, it’s not what GBD is telling them is priorities. WHO’s priorities are driven by the World Health Assembly. The representative of the world’s ministries of health who meet in Geneva every year. And they say what they think WHO’s priorities should be and that is what the priorities come to be and there’s been a change of emphasis in the past years towards non-communicable diseases. They have moved up the priority list. But if you look among neurological disorders – epilepsy is a priority, headache is not. Although headache demonstrably causes more ill health and disability than epilepsy. It seems to me that we have to achieve a change in awareness at that level in the World Health Assembly – and I have to say I’m not quite sure how to do that. All we can do that we aren’t doing is to continue to collect and present the evidence to support the demonstration that headache disorders meet the four criteria for full priority – we have clearly objectively demonstrated that headache disorders are common, ubiquitous, disabling. We know that headache disorders are mostly easily effectively and cost effectively treatable, but that is what we have to prove. We have to undertake studies that will demonstrate that putting resources into headache treatment will actually be cost saving. We’ve done economic modeling based on proposals for structured headache services. We have looked at how those might work in countries like Russia, Zambia, Ethiopia and demonstrated that they should be not merely be cost effective but actually cost saving even in low income context. The reason for that is because the cost of treatment is relatively low – even if you look at the specific treatments it’s still relatively low when you set it against the indirect cost of headache. The cost of lost productivity. Any disorder that loses between 1 and 2 percent of GDP – GDP Gross Domestic Product – is a very expensive strain on the countries resources. You do not need to invest anything like that in order to provide effective treatment for most people with a headache disorder. But what we haven’t shown yet, empirically, is that if you do that, if you put in place headache services. If you invest whatever it requires to resource those headache services adequately, the returns will be – in financial terms - greater than the cost of that investment. We believe that to be true. Economically modeling shows it to be true. But I think until we have empirical proof of that that is the case, we’re never going to persuade the majority of the world’s politicians. And the trouble is, of course, that we need the cooperation and help and positive assistance of health politicians to do that experiment – to go somewhere – to go to a country – and in an area of the country as a pilot exercise establish headache services, put them in place, fund them adequately and measure their effect. We can’t do that without health politicians behind it. And therefore, we cannot produce the evidence that health politicians need to be persuaded that they should do something about it, without their help in the first place to produce that evidence.
So that’s the problem that’s facing us over the next few years of the campaign and we are basically engaged in endless discussion about how we should achieve this. We don’t see a clear way forward with that but it’s what the Global Campaign now is focusing on. We’re moving from measuring the burden of headache towards the final stage of the campaign which is proposing and hopefully working with agencies in countries to implement solutions for headache. Ten years on from now I hope we will be able to look back and say, well, yes, we found that way forward and we did it and this is what it shows.
Birbeck: Well it’s very ambitious but given what’s already been achieved, I think if your trajectory continues we will be saying, yes, look what’s changed and look at the advances that’s been made. When we think about what little data even existed, and no formal methodologies outlines – and now the emerging information from that – though certainly working with these stakeholders and their competing priorities must be quite a challenge.
Professor Steiner this has been a lovely march through the advances in headache globally and outline of the trajectory that we hope lies ahead for further advances. Is there anything else that you’d like to tell our listeners today? – to share with them.
Steiner: There’s one other point that I’d like to make. The global campaign has been engaged, as I’ve explained, in measuring the burden of headache, in making proposals of how we might do something about it, we’ve been developing, incidentally, management aids that will be of assistance – we hope – to primary health care providers in the structured headache services if they are ever set up. And we’ve done economic modeling which look at these headache services and the use of treatments that are currently available within these headache services to show that the whole package should be cost effective. I think we should just recognize that while we’ve been doing this, other people have been working in other areas. There’s been a lot of very high quality basic research which has lead to improved understanding of the mechanisms of headache, particularly of migraine. There are new treatments that have been born out of this very high quality basic research and some of these are clearly showing promise in clinical trials. And they probably bring hope to some people who are affected by headache disorders. But, there’s a very big but here, the first specific drugs for migraine, the triptans, have been with us for over fifteen years. They were initially quite expensive – most of them are generic now – and they’re not so expensive but the reality is that although we’ve had this new class of drugs, specific drugs for migraine, it’s almost certainly the case that 90% of people in the world who might benefit from them have no access to them or in many cases are even unaware of their existence and my fear is that the new treatments which hopefully will come onto the market in the next year or two are going to have no impact whatsoever on the lives of the vast majority of people with migraine around the world. This bothers me because I don’t in any way wish to suggest that there shouldn’t be this huge investment in new treatments for migraine because they will benefit some people, but that investment somehow appears to deflect investment away from other areas of intervention which have to my mind a greater prospect of relieving global ill health burden. If we could focus efforts not on producing new treatments – or maybe I’m not suggesting we should take investment away from that – but if we could find a way of directing a similar amount of investment to the problem of how to get the treatments that currently exist to the 90% of people who are not even aware of them. The prospect for relieving global ill health and global disability, I think, are much greater from that sort of directed effort than from the design and invention and testing and marketing of new drugs.
Birbeck: That’s quite an appeal. I think that need holds true for many conditions. That as new treatments are developed that are driven largely by profit and bit pharma the gap between people who could benefit from very simple interventions and people who are getting really, extremely expensive cutting-edge interventions – the quality of life and outcomes just continue to diverge. It’s a huge challenge I think in many conditions, and especially neurological ones. So, no doubt if we could put some of that investment towards setting up some of those primary headache services in regions that offer very little now, it would make such a difference.
Steiner: Yes, I’m sure it would. It’s perhaps a controversial and perhaps a provocative view as well, but to my mind I think that that is a message that comes through rather clearly. The population based studies we do which look at prevalence and burden of headache disorders, they also, of course, look at who gets treated. And what we find is that, actually even in well-resourced countries, really a minority of people appear to be receiving the sort of treatment that you might expect them to meet and a great majority are receiving either inadequate care or very often no care at all. And since treatments do exist and since they are widely available and since they are cheap and effective and cost effective, it does seem to me, fairly obvious, that that’s where resources need to be directed and getting those treatments to the people who need them. And, of course, that is exactly what structured headache services are perceived to be able to achieve. But they have to be based in primary care and they have to be delivered by health care providers in primary care who have at least the basic knowledge of the common headache disorders, and of these treatments and of how to use these treatments in order to achieve these benefits.
Birbeck: On that note of a very rational appeal, for a rational approach, I’d like to thank you for joining us today.
Steiner: Thank you very much.