One in Two: The Hidden Burden of Neurological Disorders in America

Episode Transcript

Dr. Correa:
From the American Academy of Neurology, I'm Dr. Daniel Correa.

Dr. Peters:
And I am Dr. Katy Peters, and this is The Brain and Life Podcast.

Dr. Correa:
Saludos, and welcome back to The Brain and Life Podcast. Today, we're taking more of a neurologic health news direction and bringing you an update from a prominent neurology academic journal just released an article titled, "The US Burden of Disorders Affecting the Nervous System," from the Global Burden of Disease Study 2021. Now, that title doesn't necessarily mean a lot, but it really highlights in this article of some key issues that we really felt that would be important to The Brain and Life community and for all of us to hear. So, today, I'll be interviewing John Ney and he, with his colleagues, did this analysis of this data that I think is really important for all of us.
We talk about how this study found the extent of neurologic disease burden throughout the United States and related to what we are seeing in our patients, communities, and families. They took a look at global data that was released in 2022 and found that over 54% of Americans, 180 million people live with at least one neurologic disease or disorder and making these conditions the leading cause of disability in the United States. We also touch on what this means, the variety of conditions that are included, and how they looked at and quantified the impact of health loss throughout life in living with a neurologic condition and on our US economy.
Then we talk a little bit about what this means for you and your families and how we're taking it to the discussion of neurologic health in our holiday tables. I hope you really enjoy the episode.
So I'm joined here now by Dr. John P. Ney. He's a physician and neurologist who works both in neurology and health policy research at Yale University. His work focuses on understanding how population level impacts come from neurologic disorders and maybe improving access to neurologic care might address these. Dr. Ney is a lead author that we really wanted to invite today to have this discussion about research that just recently come out and published in the journal called JAMA Neurology that quantified the burden of neurologic disease in the United States. He is passionate about translating what that means to actionable steps and strategies to enhance brain health and reduce disability nationwide. John, thank you so much for joining us today.

Dr. Ney:
I'm so happy to be here.

Dr. Correa:
So I'm just wondering, your study found that one in two Americans has a neurologic condition. What does that mean for families and communities?

Dr. Ney:
Well, so I would first state that there's a little bit of a difference between a neurological illness, neurological condition, and what we're actually quantifying here, which is conditions which affect nervous system health. So, these include neurological illnesses, things that we typically think of like multiple sclerosis, stroke, Alzheimer's disease, even migraine, and headache. So, things that are both common and uncommon but also includes neurodevelopmental disorders and then includes systemic, neonatal, congenital, and infectious diseases which may not be classified as true neurological diseases or neurological disorders, but rather have impacts on the nervous system health that previously have not been well quantified because they've been shunted to this other category.

Dr. Correa:
So I mean, it's just astounding then to really think about it and to finally really have more of these look together within the family of those who might be impacted by neurologic conditions. As you see these numbers, what do you think that means for a family of four and as we think of our broader families?

Dr. Ney:
So if you think that there are 330 or so million people in the United States in 2021 and that was the setting for this study, then more than 180 million or 54% had a condition which affected the nervous system. The most common of these are things that we think about all the time, like tension type headache, and many, many people have tension type headache. This was 122 million. So, that's basically one in three or greater population within the US. Migraine, 58 million, diabetic neuropathy, 17 million, stroke, much further down the list in terms of prevalence, six million people, and then Alzheimer's disease, about five million.
If you're thinking about a family of four people, then two of them are going to have a condition affecting the nervous system and more than likely it would be tension type headache, but may include some of these other more severe and significant and disabling and frankly life limiting disorders as well.

Dr. Correa:
What I find interesting to think about this too is you guys were looking at numbers for what existed as that burden in 2021. So, if we're thinking that one in two Americans have a neurologic condition that's impacting them at the time, that's not to say that the other two people in that family or the other 50% may not potentially live with or encounter a neurologic condition later in their life.

Dr. Ney:
Right, absolutely. So, this is looking at a point in time and what we're seeing is in cases where it is a life-limiting condition, we're trying to quantify that in terms of years of life lost relative to average life expectancy. Then we're also looking at years of disability for individuals who have a condition that is not going to be life-limiting. It's the combination of those two that gives us our total, what we refer to as health loss or disability-adjusted life years. So, it's mortality plus that disability.
The thing with neurological disorders and diseases that affect the nervous system in general is that they may not kill you, but they may be incredibly disabling. Oftentimes we focus on the diseases that have the most mortality, so cancer and heart disease, but these other conditions, including migraine headache, can be incredibly disabling and that can affect people's daily lives in ways that are profound.

Dr. Correa:
So I mean, we all have brains and nerves and the muscle connections throughout our body. The unfortunate reality is in some way, these will all be affected for many of us. If we have the privilege of even living longer and healthy lives, something will be impacted.

Dr. Ney:
Right, and certainly age is a big contributor and factor to that. So, we have both total metrics, which includes people of all ages, but then we also have an age-adjusted per population base so that you can figure out relative to other geographic areas, for example, relative to other countries, how are we doing, places that have different age distributions, places that have different population levels. So, that way it provides an even playing ground and a way of trying to figure out where we might rank both globally and even at a state-by-state level.

Dr. Correa:
Wow. How have you thought about and tried to describe the impact and the significance of this to your own immediate family or distant family members?

Dr. Ney:
So actually in my own family, so my wife has migraines, my daughter and probably my son have migraines. I myself may get a migraine once a year. So, I consider myself lucky. I'm also a headache physician. My wife doesn't listen to me with regards to treatment of her headache. She feels like red wine is really the best way to go. We don't recommend that. The American Headache Society is not a fan usage of tannins and red wine. But my son also has autism, so he doesn't have what has traditionally been called a neurological disorder per se, but is a neurodevelopmental disorder.
Because we are being more broad and inclusive with this study and what we're trying to find out is diseases that affect the nervous system, that's one of them. So, I'm really excited that we're able to incorporate that into our analysis. Likewise, I think just this reality that so many people have conditions affecting the nervous system is important. In my own family, I see it because essentially all of us do in one form or another.

Dr. Correa:
Yeah. This analysis you guys put together has been seen and described as a more comprehensive one to date than many before. People often, as you were pointing out, think of the acute medical conditions like stroke or other conditions that develop more awareness of Alzheimer's and when they think of neurologic disease, but your study really brings together this more comprehensive and inclusive approach, including headaches and migraines. Why do you think that's important when we really look at the overall burden of specific conditions or the impact on parts of our body?

Dr. Ney:
Well, I think it's important from a number of vantage points. One, just to realize how common these things are and that if you're a person walking around, more likely than not you have a condition affecting the nervous system. So, that's one. I think two is also just seeing what the impact of these is from an economic basis, from the notion of how much health is lost due to conditions affecting the nervous system, and where are our priorities ultimately ought to be from a health policy vantage point. What should we be spending money on?
And knowing that heart disease, cancer, incredibly important, kill a lot of people, the mortality is great, but there is significant mortality with many of the diseases that affect the nervous system in addition to the fact that they are also hugely disabling and they have a very large economic impact. So, should we be spending more research dollars on those? And my answer as a neurologist, and that's been a big focus, is yes, of course. How could you say anything other than that?
But this actually quantifies that these are incredibly important conditions and then relative to really conditions affecting any other organ system, that the health loss, which is the combination of mortality and disability, is greatest for these conditions that affect the nervous system more than those that affect the cardiovascular system, cancers, and so on.

Dr. Correa:
When you were looking at those outcomes, mortality and death being one that as you pointed out often we end up focusing on, but then also the health loss and disability, you guys also put together an analysis looking at trends over time. So, what were you seeing in those different trends and how do you think that impacts both some of the decisions we make in healthcare or in research?

Dr. Ney:
Well, I think overall, we did see that there's substantially greater health loss over a 30-year period from 1990 to 2021. This is most likely due to two things. One, you have a larger population. The population grew by more than 50 million people during that timeframe. So, more people equals more opportunities for health loss. Two, the population got older and the most disabling conditions, things like Alzheimer's and stroke also are age related. The older you are, the more likely you are to have one of those. So, it's not surprising that we saw this.
When we actually adjusted for age and controlled for the population unit, we actually saw very little difference from 1990, which is encouraging in one way to say, "Oh, well it's actually not getting worse," but is incredibly discouraging from the vantage point that we put a lot of money into many of these conditions and we're not seeing that much improvement. So, I think some of this is also neurological diseases, including things that we don't think about as often, like tension type headache often really just haven't been addressed by doing anything other than taking over the counter medication.
But if you're experiencing chronic tension type headache as many of my patients are as a headache doctor, that can be also quite compellingly disabling too. So, I think there's a lot going on here, and I think our analysis is important from that vantage point that we're seeing so much disability and in multiple categories.

Dr. Correa:
I wonder as both as clinicians, neurologists, or maybe the healthcare system, do you think we're missing an opportunity and a window in addressing much more of the neurologic health needs for the people who are first coming in with symptoms that tend to be brushed off, whether it's headaches or a neuropathy, which can significantly impact that person, but we're really just focusing on here's how you manage that and not really embracing addressing all the other primary preventative aspects of brain health to maximize their brain health over time?

Dr. Ney:
Yeah. So, brain health and nervous system health in general, I think, is also very important. This could include things like a big part of the study is looking at how neuropathy causes disability, and once you start developing neuropathy, what are the factors that may make that worse? And then the same thing goes for cognitive impairment that ultimately leads to Alzheimer's. Anything that we can do to alter that trajectory early on is going to pay dividends later, either reduce disability or if we're able to curb or stop that trajectory. To some degree, we have not put nearly as much funding into that as we have in other conditions. So, I think that's one more piece that can and ought to be looked at by health policymakers.

Dr. Correa:
Now seeing more comprehensively in this way, how much of an impact neurologic conditions have on our community within the United States, what would you call for that we really need to do at a health policy level to address this? Do we need in effect a brain moonshot?

Dr. Ney:
So yeah, it's not just brain, but in spinal cord, peripheral nerve, whole nervous system moonshot. Some of it is how do you justify it? And if you look at our paper, which uses some well-worn economic terms, but may not be as well-known as just simply dollar amounts, often burden of disease evaluations translate everything into an economic and ultimately a single dollar amount to try to determine how much economic output is lost by this. Your congressman is certainly interested in if X amount of GDP is affected by neurological conditions, then that's important. To get into the weeds of it, the Department of Health and Human Services has an evaluation that lets you do a crosswalk between these disability adjusted life years and ultimately dollars lost affecting the economy.
If you were to do that with 16.6 million disability adjusted life years, actually, it translates to about $12 trillion of loss to the economy on a yearly basis. So, it's a tremendous amount of money. Policymakers are always interested in, "How can we improve GDP?" Oh, it's going up by 0.2 or 0.3%. This is potentially an additional third of the economy. GDP is $33 trillion. You up that by another 12, and the economy is going great guns at that point. So, that's what we're really missing out on. That's the opportunity loss here. That is the loss of health and that's using Health and Human Services, US government methodology to make that determination.

Dr. Correa:
And it's amazing to go back and think about that the context of things like the moonshot, things like the Manhattan Project and the amount of funding and everything that went into those, although substantial, if you adjust them to today's dollars, are only a fraction of what we're talking about could be gained by really addressing people's health and their neurologic health in general more effectively.

Dr. Ney:
Right, and the return on investment is just absolutely enormous. So, we can think about the potential gains that are out there for the economy, for people's overall health, for life expectancy, and each of those is tremendous.

Dr. Correa:
Those are the big numbers, but let's take it more specifically to local areas. Why do some states like those in the stroke belt have higher neurologic health loss?

Dr. Ney:
There may be a number of reasons. One of them may simply be that there are fewer experts who know about neurological diseases, and we like to call them neurologists. To that extent, these places are often more rural. There may be other issues related to socioeconomics that are certainly prominent there. In the stroke belt, which often includes areas in the south and in the so-called rest belt, there's a lot of overall health issues that are affected.
Many of these individuals do not have health insurance, are not covered by Medicaid or Medicaid expansion. So, just the basic preventive measures are often lost as well. So, individuals' hypertension, their cardiac diseases and so on may also not be addressed. So, it may be something that we're seeing with overall health, but is particularly profound when we get to neurological illnesses.

Dr. Correa:
Stroke and the discussion about the states or the areas of the country that are most impacted by higher frequency of strokes or even more severe strokes and poorer outcomes has been described as the stroke belt, but are there states outside the south and outside the stroke belt that are seeing that impact with higher neurologic health loss compared to other states in the nation?

Dr. Ney:
There are, particularly in the Midwest. So, places like South Dakota seem to also have a relatively higher number of disability-adjusted life years and an age-adjusted per population level. Reasons for that, again, may be dependent on local habits, availability of insurance, availability of providers, but again, the rurality has a lot to do with it. Socio-economics has a lot to do with it. The higher your socioeconomic class, the more access you have to healthcare, the more you're participating in healthy behaviors. So, I suspect that all these come into play. Areas of the country where other issues are at hand like smoking certainly are a big part of this as well.

Dr. Correa:
And so what do you think states and local regions can take out of this data?

Dr. Ney:
When we're looking at the data from an age-adjusted population level, which is how we looked at each state, there's a range. You can see states that tend to put a lot of value on health and have substantial investments in things like Medicaid tend to be doing better. So, New York, New Jersey, California, and they also have improved over time, whereas states like West Virginia and Mississippi, Alabama, less so. So, the more you spend on your population health, then probably the better outcomes you're going to have. That seems to hold true for neurological diseases as well.

Dr. Correa:
And people have connections to their local communities, their family that's there, or maybe financially they may not have that flexibility and the privilege to just move to a place that is "healthier" as a state. So, what do you think individuals and families should consider about this data if they live in areas that have limited or more challenging access to neurologic health needs?

Dr. Ney:
Well, I think that's certainly a difficulty that has been around for a long time. I think technology is helping to address some of that. So, the availability of telehealth and being able to contact a provider over the internet is actually a huge boon and is a large improvement over what we've had in the past. So, I'd certainly encourage that. That may be one way to leverage resources that are primarily concentrated in urban areas and get them out to rural locations. I actually do a tele-headache clinic in rural Maine. I am just outside of Boston, but I have a ton of patients who are on the Canadian border almost. They apparently have headaches just like everybody else.
Some of them can be quite severe, quite disabling, and they have a lot of health behaviors that need to be addressed as well. We try and get into all that. But if you don't have access to care, then you don't know how to improve your own position, especially if you're in a geolocation where you don't have one specialist, but two even primary care physicians. So, I think telehealth is really an important way to try to address that. I think education in general is helpful and I encourage patients to educate themselves as much as possible, but with the realization that there's a lot of stuff on the internet that's misinformation or disinformation and to always discuss with their primary care physician or with their specialist as any information that they've encountered.
But I would say it's better to have information than not, but misinformation certainly is an issue. But I don't want to say that the internet is going to solve all of our problems because that's another matter and whether or not AI physicians are going to help us, I have no idea.

Dr. Correa:
Yeah, no, I think there's still a lot more questions unanswered in that direction, but let's take two broader strokes. So, how do you think that both the 2021 global burden on disease data and your research, how does it shift the way we think about neurologic health in the United States and does it challenge any assumptions or highlight new priorities?

Dr. Ney:
Right. So, again, I think what we were trying to do is paint with the broadest strokes possible, what the extent of nervous system afflictions are and can be and not just say, "Okay, if you have a nervous system disorder, it fits into these categories that are well-known like epilepsy and multiple sclerosis, that other conditions like premature birth causes a large amount of nervous system dysfunction and autism." In my own son, we see a lot of behavioral issues.
I think previously this hasn't been well addressed that we like to, as neurologists, stick to things that we know this is definitely a nervous system problem, strokes, multiple sclerosis, epilepsy, and so on. Oh, you have a seizure disorder. This is definitely in our lane. Things that we're dealing with pediatricians and that have overlaps into behavioral problems, as neurologists, I think we need to have a greater realization that we have a role in this. I think that's something that I'm hoping that this study also brings to light.

Dr. Correa:
I'm wondering, of course, it's not necessarily addressed in your study or in this data, but speaking to the individual listener and their family, sometimes hearing more and more news about neurologic health loss increasing, increasing numbers of dementia or different neurologic diseases, and then particularly hearing that in some ways our government, our research system, our health systems, our providers are maybe falling behind on some of these increasing issues. For those listeners who are concerned about their own brain health or maybe even some of your patients, what would you tell them are practical steps to empower them to think about taking care of themselves and their families?

Dr. Ney:
Probably the first thing is just if something happens, if you have symptoms, don't blow them off. I've had numerous patients who had numbness or weakness down one side of their body and they say, "Well, I could go to the emergency room or I could just go to bed." Probably half the time they end up going to bed, they wake up the next day, it's still there or it's gotten markedly worse and their opportunity to intervene because time is brain. You go to the emergency room and you have the ability to receive medications that could bust the clot that is preventing blood flow into your brain. If you don't do that, then you're risking permanent damage. So, I think just the realization that these are symptoms that are real and that you shouldn't just assume are going to go away on their own.
At the same time, things like headache and migraine, these are real as well. It's easy enough to say, "Oh, he didn't come into work because he has a headache. Now I have to do his work for him while he's gone." That's a problem. These are the "excuses". They're not excuses. These are real disorders and they cause real disability. On top of that, we just need to realize that there are medications that are available for treatment, we can't improve outcomes, and we need to put more of our dollars into prevention.

Dr. Correa:
So yeah, I think seeking that help and support and identifying symptoms and questions that you have, maybe making some notes on them and going to see the doctors or to the hospital, whatever the right setting is for that person. How are you making adjustments from everything that we're learning more about preventative brain health and your own neurologic health? You mentioned you have some occasional headaches, but how are you tackling things for a better neurologic health in the future?

Dr. Ney:
Yeah, so I think I had said earlier on that one of the greatest risk factors for neurological disease and for diseases affecting the nervous system is age. So, I'm getting older. I'm 52 years old. I didn't think I would ever be 52 years old, but here I am.

Dr. Correa:
It keeps happening.

Dr. Ney:
And every year, I seem to be getting older, and that puts me at greater risk for all kinds of neurological dysfunction. So, I think just paying more attention to my own symptoms, paying more attention to times where I feel like I might be lapsing a bit. All those things are stuff that I wouldn't have done when I was younger. You and I were both in the military, were taught to be these aggressive macho men and to ignore when things were painful or otherwise, but now I'm not ignoring it. This macro large population analysis just shows me that that's all the more important, that as you get older, you need to pay attention to what your body is telling you.

Dr. Correa:
So maybe to listen to that voice that we've been telling ourselves, I should work on this. Whether that thing is your sleep, thinking more about your dietary patterns or your activity levels, and then figuring out the ways that you're going to work on that next step. For our listeners who they themselves or their family are outside the United States, what should they keep in mind when they hear about the data from global burden of disease and the variety of the progression of neurologic conditions in neurologic health worldwide?

Dr. Ney:
So we did certainly try to see where the United States fits into that. Compared to every other country in the world, the US actually had the highest prevalence of conditions affecting the nervous system of any country in the world. Some of that just may be recognition of things like tension type headache that may be ignored in other countries, but at the same time, other countries are spending a lot of money on healthcare, especially the high-income countries in Western Europe and they are getting substantially better outcomes, meaning reduced disability.
Compared to other high-income countries, we fit generally in the middle. We're doing okay, so about 30 to 38th out of 65 or so high-income countries. If you're an individual in one of these higher-income countries, chances are it's probably 50% likely that your country overall is doing better in terms of its neurological health than our country is. So, you may want to stay put, I don't know.

Dr. Correa:
And so we're coming up on the holidays and we always are trying to think of, look, what topics we're going to bring to the discussion with the family table. How are you going to navigate questions about how to improve their brain health and everyone's concerns I'm sure that they bring for the family neurologist.

Dr. Ney:
Yeah. Well, I mean, my wife is still going to drink a red wine, so that's part of it. My father-in-law has dementia. So, he may be asking some interesting questions for which I may not have very many answers.

Dr. Correa:
Yeah. I sometimes also just like to try to practice first the idea of being my role as the family member and try to take off the doctor hat. So often we're among our friends and family, the first approach is we're listening in the same clinical ear as we would at what their questions are, what they're saying, and not really as the friend or the family member. So, I think my practice this year is going to be to try to sit with the family member and the friend hat first and not rely on the white coat.

Dr. Ney:
Yeah. Well, it can be tough because again, they make that identification straight up and they may even be reserving a list of questions for you. So, I think it's better to approach things with a non-clinical vantage point and offer sympathy and condolence where necessary. Then if you're asked, so what should I do? If you were my doctor, what would you do? I usually try to be as truthful as possible, and sometimes that's â€ŠEncouraging to people. Sometimes they'd say, oh, well, I was hoping for a different answer than what I got from my physician. But guess what, you know, there, there may not be a better answer out there either.

Dr. Correa:
John, thank you so much for joining us. Uh, I hope uh, you have a happy holiday and I wish you and your family lots of health.

Dr. Ney:
Alright, well it's my pleasure to be here. Thank you so much.

Dr. Correa:
Thank you again for joining us today on the Brain and Life Podcast. Follow and subscribe to this podcast so you don't miss our weekly episodes. You can also sign up to receive the Brain and Life magazine for free@brainandlife.org.

Dr. Peters:
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We love it when we hear your ideas or questions. You can send these in an email to BL podcast@brainlife.org and leave us a message at 6 1 2 9 2 8 6 2 0 6.

Dr. Correa:
You can also find that information in our show notes, and you can follow Katie and me and the Brain Life Magazine on many of your preferred social media channels.

We are your hosts, Dr. Daniel Correa, connecting with you from New York City and online at Neuro Dr. Correa.

Dr. Peters:
And Dr. Katie Peters joining you from Durham, North Carolina and online at Katie Peters mdphd.

Dr. Correa:
Most importantly, thank you and all of our community members that trust us with their health and everyone living with neurologic conditions.

Dr. Peters:
We hope together we can take steps to better brain health and each thrive with our own abilities every day.

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One in Two: The Hidden Burden of Neurological Disorders in America

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