This transcript has been edited for clarity.
Andrew N. Willner, MD: Welcome to WordPress. This is Dr. Andrew Willner virtually reporting from his 2022 American Epilepsy Society conference in Nashville, Tennessee. Mayo, Jacksonville, Florida, today. It was my pleasure to speak with Dr. Joseph Saven, Professor of Neurology at the He Clinic.
Welcome, Dr. Saven.
Joseph I. Silven, MD: Dr. Willner, it’s always a pleasure to work with you.
Willner: Sirven, you gave a very interesting presentation at this year’s Wake Forest Symposium on Social Determinants of Health and Epilepsy. Could you give us a brief synopsis? what the hell is that?
Silven: you bet One of the things I’ve been working on with my team is, first and foremost, we start with very simple questions. Where are the patients who have had epilepsy surgery? There is always concern that we are not reaching them. Not enough. We don’t have enough throughput to get people to curative treatment.
Some of this started with a very roadside conversation with someone not involved in the epilepsy field. It was kind of the origin of a larger project that I published in the form of . Social determinants of health and how they affect epilepsy.
This symposium sought to summarize some of the larger and more important findings. what are they? What does that mean and what have we discovered about certain groups of people with epilepsy? What we were trying to do in our presentation was point them out.
Willner: I remember reading something about this. I think you’ve seen the Arizona population. As it happens, you were the director of neurology at the Mayo Clinic. It may have something to do with the selection of the population. Please let me know what you find.
Silven: First, social determinants of health include key demographics that are often quickly overlooked the moment someone seeks care. , you may see pages for faith, education, salary, and more. how does that relate to this?
Perhaps if you look into that relationship you’ll see how it ties in with the epilepsy treatment gap.Arizona Medicaid called Access is a safety net if you don’t have federal or commercial level insurance. This is considered a Medicaid program in relatively good standing. It expanded during the Obamacare era. The Arizona Medicaid database is housed at Arizona State University.
The interesting thing is that there are 50 states, 50 laboratories looking at this, and each state has its own Medicaid program. We access this database, tucked away at this location in Arizona, to study people with epilepsy and how their demographics and social determinants of health influence epilepsy care. I tried to understand.
From there, the project is to use that information to provide a sample of what it looks like in one state (large state, expanding state) and use that as a core to compare against multiple other locations. started the whole thing. and state as well.
Willner: All the patients in that database had Arizona Medicaid, right?
Silven: exactly.
Willner: It is already a social determinant of health. When you dug deeper, what were the other social determinants that really mattered?
Silven: The important thing is what you think won’t surprise people, but it’s important to get in there. If you don’t work, you are much less likely to be treated with drugs diagnosed with epilepsy. That means it’s coded and he’s been in that state for over two years. There were many parameters to get it right.
Homeless and widowed people are much less likely to get treatment for epilepsy. If you were from certain ethnic groups, especially Native Americans, you were much less likely to receive epilepsy treatment (to start it) than Caucasians and other groups. Even ethnicity played an important role.
Where you sought care also played a big role. They were much more likely to do better if the person was diagnosed, managed, or treated in a hospital setting. If they don’t go to an emergency room or hospital, but instead go to a non-traditional health care setting such as a clinic, free clinic, or something along those lines, they may start medication or receive treatment. They were much less likely to suffer from epilepsy.
Age also played a role. Interestingly, the older you get, the less likely you are to take medication, even if you have a diagnosis. It was kind of a big chunk.
There were many of these very specific demographic pieces that determined what happened. The average delay in treatment was found to be 3-6 months after diagnosis and being coded as such. They received no treatment—no medicine, nothing. This is important because Arizona Medicaid also tracks whether prescriptions are filled.
Many different factors are important. Back to the original question about epilepsy surgery. I think that person was right, at least for this group, because it shows that no one starts the journey here if two drug failures are the way to go to be marked as drug resistant. With such delays and non-treatments, and these other parameters affecting them, they never get to where they can be labeled drug-resistant.
Willner: The interesting thing is that they all had the same insurance, so your study was controlled for insurance. I have insurance, but he doesn’t. They were all in the Medicaid program, so the study controlled it. Presumably, everyone had similar access, at least in terms of ability to pay. But these very important differences prevented me from getting the care I needed.
Was it the bottom? How can I resolve this issue?
Silven: Oh how we want it. We say we know a few things for sure. First, the sad thing about social determinants of health is that doctors and health care providers do not control them.
It’s important to know this. This is because I have noticed how the questions asked by my patients have changed over the course of my practice over the last few years. In the past, when I met someone and started taking the medicine, they would say, “Good! I’m glad I have the option. Let’s talk side effects. How well does it work?”
I just realized the next question is, “How much does this cost? Is my out-of-pocket too much?”
We now know that doctors and health care providers have a role to play in addressing the social determinants of health, whether they want to or not. I say political — more than we ever have. That’s how we get there. It’s not hard to see what the solution is. It’s difficult to see if the solution can be implemented.
Willner: I know the American Academy of Neurology podcasts are starting to include discussions about the economic toxicity of treatments. I think they agree with you that just writing a prescription is not enough without knowing the out-of-pocket amount and whether the patient will be able to meet it.
Silven: I think my life just changed that way. I am always surprised when I get a phone call. I don’t know what the patient’s out-of-pocket costs will be based on what I prescribe. Because it is often determined by insurance coverage and how good it is. The economics of the costs that are thought to be costing versus the costs that are actually costing — it is still a mystery.
Half the time I’m stunned when they call me and say, “Dr. Sirven, that drug costs $1100 a month.” In many cases it is not a brand new drug. It may have been out for a while, but there aren’t many generics, and his $1,100 a month is equivalent to his mortgage, car payments, and even his two payments for the car. It’s important. Then you start to see why things haven’t changed on the whole. I think that’s just part of it.
Willner: Our goal is to ensure that patients receive the care and treatment they need.
Silven: absolutely.
Willner: Sirven, thank you very much for your presentation at this year’s American Epilepsy Society. Thank you for joining Medscape.
Silven: Dr. Willner, nice to meet you.
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