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Sparking interest and understanding in the epilepsies whilst bridging the communication gap between epilepsy patients, clinicians, scientists, geneticists – and the world. Hosted by Torie Robinson.
**NOT FOR CLINICAL OR PATIENT DECISION-MAKING*
Visit www.torierobinson.com & www.epilepsysparks.com.
Trailer
00:00 Jonathan Williams
“Why is health equity important? Why does the work matter? Because I think, I want everybody to thrive. I want everybody to live as long, healthy life as long as possible. And so, until we reach that goal, I think we have to think about different, novel new ways to do what we're doing, but just better.”
Introduction
00:17 Torie Robinson
Hello all, and welcome to Epilepsy Sparks Insights. Why do some people with an epilepsy experience poorer outcomes than others? Now, there can be many reasons, but in today's episode, we are talking about how access to epilepsy care just is not equal for everybody. There are the barriers that can prevent people from getting the care they need, but there are also things that we can do to change things and positively transform people’s lives. My name is Torie Robinson and let’s get started!
Meet Jonathan Williams
00:45 Torie Robinson
Hello there Jonathan, thank you for joining us today all the way from the US could you just tell us who you are and what you do please?
00:50 Jonathan Williams
All right, well thanks for having me. So I'm Jonathan Williams. I'm an Assistant Professor of neurology at Washington University in Saint Louis, Missouri. I'm also a board certified epileptologist, so I treat patients who have seizures or seizure disorders and epilepsy.
What is health equity?
01:04 Torie Robinson
Fantastic. And so I know from our previous chat that you are really big on health equity. What does that actually mean? And how does it apply when it comes to epilepsy?
01:16 Jonathan Williams
Well, I think health equity is it's fancy speak for something that's a simple concept; just doing right by people. That's how I think about it. And so I juxtapose that and kind of put it next to health disparities, which in my mind are just there's differences in health outcomes between different groups of peoples, based on “something”. when I look at what that something is, it's circumstances. I say “social determinants of health”, but other people may use other words. But basically, the factors that describe how we live, where we live, how we're born, where we work, whether we work, and ultimately how we die. And so I think those factors matter. And so, in healthcare, we're sort of trained to not…you know, to treat everybody the same. And we say “equality” and then we think of that as good. But that… if people have drastically different circumstances or social determinants of health, they may need some extra help, extra assistance, to make sure that they can get fully better, be well, and that's where health equity comes in. So in my mind, health equity is just doing whatever is necessary to help everybody, no matter their background, no matter where they're coming from, to achieve their optimum health. And so if that means maybe you call them, maybe you have to do telemedicine because they're too far away; whatever that something is, that's an intentional effort to make sure everybody has a shot at being well.
The invisible things that affect health
02:36 Torie Robinson
I love the way that you put that. We have people who might look the same on the outside or appear similarly healthy, you know, and are very confident in talking and think we need to delve further into a person's story and their background and really listen to them to find out what those differences could be. Would you agree?
02:54 Jonathan Williams
I totally agree. And I think that is very insightful. I that's really the missing piece in at least in in the US in our healthcare system that is not necessarily designed to deal with those invisible factors that we kind of think “Oh, that's non-medical, you know, so I'm not trained to address that.”. But when we, you know… if we're putting together a puzzle, you need all the pieces to really solve it. And so in the same way I think we have to move towards thinking about somebody as a person first, all the things that contribute to why they are the way they are, and see how we can work within our system and outside of the system to help make them better. So I think that's really good.
03:33 Torie Robinson
Thank you, yeah. It's working with what we've got and trying to improve things simultaneously. So, how do you think that improving health equity or everything that we've just described, I think more in layperson's terms, how would improving that improve the lives of people affected by epilepsy specifically?
Why is health equity important?
03:48 Jonathan Williams
Yeah, I think it starts, in my mind, with looking at numbers. So my dad's a math guy, he's a math professor, and so, I, my brain works a little different in that way. So, for example, as a doctor and where I am, the state at where I practice, I know that black citizens in my state die at twice the rate as white citizens. There's not a good reason to explain that. And so, the idea of health equity, when we look at literature and what we see, we see that there might be differences in the time to getting to a specialist. And we know that a specialist level care can be associated with lower risk of dying from epilepsy. And so, when we look at those rates, we see that there are differences. Some groups don't see doctors at the same rates. Some groups may never see a doctor. And there are all these factors and barriers that that play into that. It's not an intentional thing, necessarily. Sometimes it relates to access to how far as a doctor. Sometimes it relates to trust. You know, whether you trust a doctor has your best interests at and in the forefront of their mind when they're providing recommendations. And sometimes it's just, you could think of it as research, what may whether or not there is evidence, good evidence to guide the recommendations that we make for certain groups of people. So, no matter how you look at it, and there's lots of different ways to look at it, I think of it as there there's a gap. Because that there's no good reason that I can identify that that statistic exists. So it means we have more work to do. And so… how… why is health equity important? Why does the work matter? Because I think… I want everybody to thrive. I want everybody to live as long, healthy life as long as possible. And so, until we reach that goal, I think we have to think about different, novel, new ways to do what we're doing, but just better. And I think it has benefits for society too. Because if you think about it, not just your life, but epilepsy can be a really common thing, more common than we realise.
05:43 Torie Robinson (05:59.011)
Mm-hmm.
05:43 Jonathan Williams
So it maybe it doesn't help you directly, to think about epilepsy, but maybe it helps a loved one or a family member or a colleague or friend or somebody that you go to church with, somebody that you know, is just in your circle, but maybe struggling silently. So it makes it a something we can all address.
What are the societal costs of epilepsy?
05:59 Torie Robinson
I was just going to say something along those lines that epilepsy, like you say, it is really common, but it doesn't just affect the person with the diagnosis. It affects their families. Even if the families don't know it affects them, sometimes they don't realise, but it does. And then there's that ripple effect. It affects societies. It affects communities. It even affects the taxpayer, you know, it affects, you know, everything. And also I was thinking about what you said regarding access to care for black populations. And I think people often think it's a simple answer, but there isn't always a simple answer to solving these challenges, is there?
06:50 Jonathan Williams
That's so right. It's like you're reading my mind. So yeah, I agree. And that was a lot to unpack, and to your point, you know, there there's lots of things that we have tobe intentional about in order in order to move the needle forward.
Why should people without an epilepsy care?
06:52 Torie Robinson
There might be a very simple answer to this but I think we've kind of answered it already, but are people who don't have epilepsy affected by epilepsy and if so how and why should they care?
07:00 Jonathan Williams
I think that's such an excellent question because a bit like everything, geography matters. And so the… where you are, the dynamics are gonna be differently. In the US, where I live and where I practice, we don't have universal health care. And so health insurance is one of the things that has been associated with different outcomes. So, health care is not a right here. There are public health insurances that cover people who cannot afford it and may not get it through their job or can't pay out of pocket. But we know that there are differences and those health disparities can track, can track along those lines. I think just in general though, people who have epilepsy, if theyre… if they don't have controlled seizures (so they still continue to experience seizures despite being on medications), they have higher ER (emergency room) usage because they have a big seizure, they're going in, they get admitted to the hospital for longer, they may go to the ICU or be on a in IV medications in a in a medically induced coma. And so those health care costs are really high. Now, think about in our, you know, right now in our country, there's we're dealing with massive inflation, everything's expensive. What I what I think about there is just… when we're trying to think broadly about how do we start to lower cost and make things more accessible and affordable. Well, I think low hanging fruit requires getting rid of the preventable excessive morbidity and mortality that is associated with epilepsy. And also that's not even touching on years of work that are lost from people who have poorly controlled seizures that chip away at our workforce and that chip away at social protections. In the United States there's social security and disability and other things that are whittled away when we have a lot of utilisers for those services.
Employment and driving
08:42 Torie Robinson
We have that issue over here in Europe as well. Regarding employment, for instance, loads of people with an epilepsy, they might want to work, but they can't get into work for multiple reasons, or they might have a job and then they might have a cluster of seizures and they might not be able to work for whatever reason. And then… so then then they're not paying taxes and then they're just going to fall out of the, you know, the job, their careers, and then, just… you can fall off the edge. And another thing I was gonna say is you spoke of seizures, but then of course there's the psychiatric aspects that are so common with seizures, and that can be as or even more debilitating than uncontrolled seizures.
09:20 Jonathan Williams
I completely agree. And again, and locally, as you're saying, what goes along with the seizure? Well, if you're… if you're in my state (and this isn't just in my state, but just for example), in the state of Missouri, if you have a seizure where you're… you lose consciousness, then you cannot drive for 6 months. And so, if you don't have a well-established transportation system and you need your car and you need to be able to get around, then how are you supposed to maintain employment and gain… be gainfully employed? And there's some protections, accommodations that are a right, and we have some legislation from 1990, so close to 30 years ago, that that provides some protections. But again, the practical result a lot of times is that people lose their job and they then are not able to maintain their health insurance or not able to afford their medications and it's a cycle. It's a cycle that just feeds onto itself.
Next steps: education & challenging stigma
10:14 Torie Robinson
If you could implement any simple changes over the next five years, when it comes to improving the quality of life of the people that we've described, what would you do and what should politicians be listening to and doing right now?
10:27 Jonathan Williams & TorieRobindon
Hahaha!
10:28 Torie Robinson
Haha! How big is, like, how much time you got?!
10:31 Jonathan Williams
Hahaha! Yeah! So I'll start locally and work my way out. I think for me, the challenge that I want to tackle and what I would do, what I would implement, is trying to address the stigma that's associated with epilepsy. Because I think everything… it kind of stems from that and lack of awareness. So it's this thing: epilepsy is this thing that has been around since really, I think since humans have walked the earth. You know, you look no matter your background, you look back at ancient texts, you'll see evidence of it there.
10:59 Torie Robinson
We've got it in animals, right?!
11:00 Jonathan Williams
Exactly.
11:00 Torie Robinson
We've got it in our cousins. It's not just a human thing!
11:04 Jonathan Williams
Right. But even though it's been around, this pervasive thing, there's still if you ask somebody on the street “What is a seizure, what is epilepsy?”, you know, they may tell you what the signs are what they see or what they've described what they see on TV, but those who are initiated know that it can look like a lot of different things in a lot of different people. And so I think raising awareness about what epilepsy is, is gonna help us so that we can tackle the problem. I'm a big proponent of the first step in solving any problem is you gotta know that there's a problem to be solved. So, if we raise awareness then that's the first step towards saying “Okay, we all agree that there's something we need to work on, there's work to be done. Now, what are the concrete steps that we can take together to make to move the needle forward?”. I think that with education and awareness and in initiatives, things like SUDEP, alright, knowing that there is a very real risk of death from just having epilepsy, understanding what the treatments are and what, you know, what options are if medications don't work, understanding what you hinted at before, which is the sequela, the consequence, the things that go along with seizures that aren't the seizures, the mental health, thinking about that, thinking about social isolation, and thinking about all the other parts of that that still need to be managed and controlled for a better quality of life. I think when we look at it and through that lens, then it becomes clear, through policy changes and others, what our priorities should be. I think the challenge is getting the right people to understand what the problem is and really that… the scope of the problem. And that's when real change can happen. So, I hope that through these efforts that are focused more on awareness, prevention, you know, that kind of policy change, that we can implement bigger picture things that are that are gonna have a larger impact but require really more of a heavy lift, a team lift to do. And then you… also, I'm hopeful that we'll have stakeholders, again, speaking about the United States for a second, but I know this is a disease that affects a lot of different people. So there's a lot… of that's lots of commonality, common ground we can use and find. It's just having those advocates that are going to push this forward so that we can really solve something that's been around, like you, you know, like you said, basically forever.
Closing thoughts and thanks
13:11 Torie Robinson
Thank you so much to Jonathan for joining us today. Health equity isn't just a trendy "tick the box" topic - it is something we all need to work towards improving. Every human deserves the opportunity to have the best possible quality of life, no matter their background, socioeconomic status, the way they look, or anything else. If you enjoyed our topic and this episode, please give it a like and subscribe to help us continue educating the world about the epilepsies. Thank you for listening, and I'll see you next time.