The Impact of Social Determinants of Health on Epilepsy Treatment

Andrew N. Wilner, MD; Joseph I. Sirven, MD


January 30, 2023

This transcript has been edited for clarity.

Andrew N. Wilner, MD: Welcome to Medscape. I'm Dr Andrew Wilner, reporting virtually from the 2022 American Epilepsy Society meeting in Nashville, Tennessee. Today I have the pleasure of speaking with Dr Joseph Sirven, professor of neurology at the Mayo Clinic, Jacksonville, Florida.

Welcome, Dr Sirven.

Joseph I. Sirven, MD: Dr Wilner, it's always a pleasure to be with you.

Wilner: Dr Sirven, you just gave a very interesting presentation at this year's Wake Forest Symposium on social determinants of health and epilepsy. Can you give us a brief synopsis? What's that all about?

Sirven: You bet. One of the things that I've been focused on with a team is, first and foremost, to start with a very simple question: Epilepsy surgery patients — where are they? There's always this concern that we're not reaching them; we're not doing enough; we're not getting enough throughput, if you will, to get people to curative therapies.

Some of this started with a very wayside conversation with someone not involved in the field of epilepsy, who said, "I suspect that this is really all about social determinants of health." As someone who is not an expert in that topic, it was kind of a genesis of a larger project which we worked on for a few years and published, both in paper and in book form — this whole idea of social determinants of health and how they affect epilepsy.

For this symposium, we tried to summarize some of the bigger key findings. What are they? What does it imply and what did we find for one particular population of individuals with epilepsy? What we were trying to do at the presentation was to point those things out.

Wilner: I remember reading something about this. I think you looked at a population in Arizona. Coincidentally, you used to be the chairman of neurology at the Mayo Clinic. It might have had something to do with the selection of that population. Tell us what you found.

Sirven: First, social determinants of health include those key demographics that we often quickly overlook the moment that someone seeks care. I always think of when I open up the electronic medical record and there's a page that tells you address, zip code, insurance, ethnicity, gender, faith, education, and salary, in some cases. How does that play into this?

We found that perhaps if we examined that relationship, we'd see how it ties in to epilepsy treatment gaps. Arizona Medicaid, called Access, is the safety net if you do not have insurance at a federal or commercial level. It's considered a relatively good state Medicaid program. It expanded under the time of Obamacare. The database for Arizona Medicaid is housed at Arizona State University.

What's interesting is that there are 50 states, there are 50 laboratories that look at this, and each state has its own Medicaid program. We were able to access this database that sits quietly in this place at Arizona State and examine it for patients with epilepsy and, to try to understand how those demographics, those social determinants of health, impact the care of epilepsy.

That's where we started this whole project of trying to use that information to give us a sample of what that looks like in one state — a large state, an expanding state — and then hopefully use that as a crux to compare it with multiple other locations and states as well.

Wilner: All patients in that database had Arizona Medicaid, right? Is that correct?

Sirven: That's correct.

Wilner: That's already a social determinant of health right there. When you probed deeper, what were the other social determinants that really mattered?

Sirven: The ones that mattered are things that I think will not surprise people, but it's important that it comes in there. Number one is whether you had a job. If you did not have a job, you were much less likely to be treated with a medication with a diagnosis of epilepsy. That is, it's coded and you've been in the state for more than 2 years. We had many parameters to make sure we got that right.

If you're homeless or if you were widowed, you were much less likely to be managed — that is, to get medication treatment for epilepsy. If you were of a certain ethnic group — Native Americans in particular — you were far less likely than Caucasians and other groups to receive epilepsy therapy (to have it filled, started), by a significant factor. Even ethnicity had an important role.

Where you sought care also had a big role. If the person was diagnosed, managed, or treated in a hospital setting, they were much more likely to do better. Actually, people were started on treatment in emergency rooms. If they did not go to an emergency room or a hospital and instead went to a nontraditional medical setting such as a clinic, a free clinic, or something along those lines, they were much less likely to be started on medication or to be treated for their epilepsy.

Age also played a role. The older you got, the less likely you were to be placed on medications, curiously, even with the diagnosis. That was kind of the big chunk of it.

There were many of these very hyperspecific demographic pieces that determined what was going to happen. Let me point back a little bit further. We found that the average treatment delay — from the time that you got a diagnosis, that it fit, and you were coded as such — was anywhere from 3 to 6 months. They didn't receive any treatment — no drug, nothing. This is important because Arizona Medicaid tracks whether they fill your prescription, too, so you know whether that was filled at a pharmacy.

Many different factors are important. It goes back to my original question about epilepsy surgery. I think that person was right, at least for this group, because it tells you that if failure of two medications is how you go down the road of being marked as drug resistant, here, no one even starts the journey. Because there's such a delay or nontreatment, and these other parameters are impacting them, you never get to a place of being labeled as drug resistant because you never started down that road.

Wilner: I think what's interesting is that your study controlled for insurance because they all had the same insurance. It wasn't a question of, well, I have insurance but he doesn't have insurance. The study controlled for that because they were all in the Medicaid program, so presumably, they all had similar access, at least in terms of ability to pay. Yet, there were these very important differences that really prevented them from getting the care that they need.

Was that the bottom? How do we fix this problem?

Sirven: Oh, how we wish. I will say that we certainly know a couple of things. Number one is that the sad thing about social determinants of health is that physicians or healthcare providers don't control them. They are upstream factors that live in the land of policy, legislation, and advocacy.

It is important to know this because just over the course of the past several years in practice, I've noticed how the questions from patients have shifted. It used to be that when I would see someone and start a medication, they’d say, "Great! I'm so glad there's a choice. Let's talk about side effects. How well does it work?"

What I notice now is that the next question is, "How much is this going to cost me? Is my copay just too much?"

Now, I'm finding that whether we want to or not, physicians and healthcare providers are almost in a role where we have to deal with the social determinants of health, which forces us to be policy-minded — I don't want to say political — much more than we ever used to be. That is how we get there. The solution is not hard in understanding what it is; the solution is hard in trying to make sure that it can be implemented.

Wilner: I know that the American Academy of Neurology podcast has begun to include discussions about the financial toxicity of treatment. I think they agree with you that it's not enough just to write the prescription without being aware of the copay and whether the patient's even going to be able to fill that.

Sirven: I think it's just that life has changed in that way. I'm always amazed when I do get the phone call back. I don't know what a patient's copay is going to be based on what I prescribe because that's often determined by what their insurance coverage is and how good it is. The economics of what you think it might cost and then what it actually costs — that's still a mystery.

Half the time, I'm stunned when they call me saying, "Dr Sirven, that medication is costing us $1100 a month." Often, it's not a brand-new medication. It could be something that's been out for a while but there aren't many generics of it. Well, $1100 a month is about the price of a mortgage or car payment, or even two car payments. It's significant. Then you start seeing why things aren't moving the needle overall. I think that's just part of the picture.

Wilner: Because the goal for all of us is that the patient should get the care and treatment that they need.

Sirven: Absolutely.

Wilner: Dr Sirven, I want to thank you very much for telling us about your presentation at the American Epilepsy Society meeting this year. Thanks for joining us on Medscape.

Sirven: It is always a pleasure to join you, Dr Wilner.

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