S5:Ep1 – Migraine Stigma, Treatment, and Access: OVERCOME Study Findings
Voice-over: Welcome to Spotlight on Migraine hosted by the Association of Migraine Disorders. Join us for fresh perspectives by medical experts and advocates as we explore the spectrum of migraine and dig deeper into this complex disease. Hear from Dr. Eric Pearlman, Associate Vice President at Eli Lilly, as we dive into their findings from the OVERCOME study. This study aims to further understand the stigma experienced by people living with migraine, identify barriers to the appropriate treatment, and assess how novel treatment options may influence delivery of migraine care and outcomes.
Molly O’Brien: Hello, and welcome to Spotlight on Migraine. I’m your host, Molly O’Brien. I’d like to introduce and welcome our guess today, Dr. Eric Pearlman. Dr. Pearlman is a neurologist and headache medicine specialist who serves as the Associate Vice President of Neuroscience Clinical Design for Eli Lilly and Company. Dr. Pearlman is responsible for leading clinical design teams for Lilly’s neuroscience portfolio.
Dr. Pearlman, thanks so much for joining us today. I’m excited to chat with you.
Dr. Eric Pearlman: Hi, Molly, it’s a pleasure to be here. I’m excited as well.
O’Brien: Well we’re so excited to have you, and we’re talking today about research and an educational program that Lilly has for those living with migraine. The research that’s come out is really interesting, so let’s dive into that first. Talk to us just a little bit about the research that Lilly has gone into, the OVERCOME study, and talk to us a little about why it’s important.
Pearlman: Well OVERCOME is a very important bit of information or research study for a few reasons. One, it’s a population-based survey and so, in essence, it’s a questionnaire sent out to consumers and then asked them questions around their health status. And if they have migraine, it goes into a lot more detail around migraine. And it’s the largest study of its kind encompassing over 60,000 participants in the United States. And what makes it really important in understanding the journey that people with migraine go through is that it goes…you don’t have to be engaged in the healthcare system to be part of this study.
Most other research studies, you have to be in a clinical trial or be seeing a healthcare provider and have a medical record or fill prescriptions to have prescription claims, so then, you know, the system can look at your information and understand about you. But we know that there’s a significant portion of people with migraine who aren’t engaging with the healthcare system, and this study allows us to understand the impact that migraine has on their lives and the journey that they go through. And so it’s unique in its ability to tap into a population that most other research misses.
O’Brien: And I think that’s what’s fascinating, too, because it likely depicts a much better picture of those people living with migraine because you’re tapping into, so to speak, untapped communities. So really excited to talk about some of the research and some of the findings.
Pearlman: While it gives us a more complete understanding, it’s not necessarily better because, on the one hand, you’d think it’d be better because if people aren’t seeing a provider, then it might not be so bad. But as we can talk about, it’s actually a bit disheartening because we found that a lot of people, who don’t engage in the healthcare system, are significantly impacted by migraine. And that’s something that we have overlooked because we haven’t done this type of study before.
O’Brien: Better is not the right word – a clearer picture might be a more accurate term. Well that’s very exciting to hear. So let’s dig into some of these findings. The OVERCOME study revealed that there has been slow but steady progress in the diagnosis and treatment of migraine, which is exciting to hear. But despite some of these studies or strides, excuse me, the study found that many living with migraine have unmet needs. So can you talk to us just about some of these significant findings from the OVERCOME study.
Pearlman: Sure. So, the way we looked at it is first off, we went to people and asked them if they suffered from headache and then used a validated tool to make a diagnosis of migraine. And so we could understand that a person had migraine even if they’ve never actually been diagnosed by a healthcare provider. And so, you know, some of the interesting things, although a big disheartening, are of all of those people who suffer from migraine and are impacted by migraine – so at least 2 times out of a month they have some degree of impact from migraine – about 37% of them had never gone to a healthcare provider to talk about migraine. So, you know, a third of people impacted, right, two days out of a month, that’s reasonable. You know, don’t even talk to a healthcare provider about it.
And then, if they do talk, there’s still a percentage who don’t even get a diagnosis, so they get diagnosed with something else or, you know, they’re sent off for testing. Or the doctor may say – or the healthcare provider may say – you have migraine, but the patient doesn’t remember it. So there’s that group. And then, you know, there’s another group that don’t get appropriate treatment even if they get diagnosed. And so of those people who are impacted, only 28% are actually getting appropriate treatment for their migraine.
O’Brien: That is significant. That’s not a high percentage. So let’s talk about some more of these stats. One of the significant stats was less than 1 in 5, who have frequent migraine attacks, are taking a recommended preventative drug. So why do you think that is? What have we learned from this research?
Pearlman: You know, it’s interesting. Again, there’s that whole waterfall of what a patient would have to go through to actually get that preventive medicine. So, to be eligible, you know, the American Headache Society and American Academy of Neurology say if you have 4 days out of a month that you’re impacted by migraine, you should consider being on a preventive medicine, something you take on a regular basis to decrease the frequency and severity of those attacks. So that’s sort of what’s that recommended group. And again, if you look at who’s going to a doctor, who’s getting diagnosed, who’s getting treatments that are recommended by those same organizations, only about 15% of people impacted 4 or more days a month impacted by migraine, only about 15% are on a recommended preventive medication.
O’Brien: Let’s talk about some more of the findings related to migraine stigma. And what do they mean for people who live with migraine disease and their caregivers and loved ones?
Pearlman: Well, stigma’s really interesting and well it’s not interesting…when we looked at stigma and first, stigma is my perception – I’m a person with migraine – that other people view me in a negative light because of my disease, in this case, migraine, right? And when we talked to people with migraine and asked them if they felt like other people viewed them as not doing what they should be doing or trying to get out of things, trying to achieve some secondary gain from their migraine, a really high percentage of people felt that they were…they felt stigma either often or very often.
And the most common things they were feeling was that people thought they were trying to use migraine to get out of something or to avoid work or, you know, to have people feel sorry for them. But that’s really not the case, right? When we talk to people with migraine, most people with migraine, you know, they’re pushing through, right? They’re trying to figure out how to get done what they can accomplish as they’re working through the pain and trying to figure a workaround – turning the lights off, doing what they need to do to try and still be productive. They want to get to their kid’s activities; they want to be able to commit to a social engagement and be able to follow through on it. They’re not really trying to get out of things.
But when we talked to people who didn’t have migraine – so we actually surveyed people who didn’t have migraine – if they knew one or more people with migraine, they were much more likely to believe that people with migraine were using it to get out of things. And so that’s really what drives the stigma. You had asked about, you know, why so many people who are impacted by migraine aren’t going to their healthcare provider or are hesitating to seek care, right? And the two most common reasons were: 1) I thought this was something that I could deal with on my own, which on the one hand, yeah, I’m tough, I can take it. But it also implies that people aren’t taking it seriously, right? That they don’t recognize that this is a neurologic disease that’s really impacting them in a meaningful way, and there’s options out there that can help them.
And the other was that they didn’t feel like their healthcare provider would take them seriously. And that’s that burden of stigma, right? That’s even if I talk to you about migraine, you’re not going to listen to me, or you’re going to think that I’m, you know, trying to get out of something, or I’m just not tough enough, right? And that’s really unfortunate because you go to the doctor with and your healthcare provider with any other complaint, you don’t expect them to not take you seriously.
O’Brien: That’s so disheartening to hear that so many people out there are feeling that way. Those are the two most common reasons why people with migraine aren’t discussing these things with their healthcare provider. That feels like a physical weight. But it’s good to know that because it means we still have a lot of room for migraine education out there, awareness, and how to combat migraine stigma.
So it’s good to hear these results – even though it’s probably not what we want to hear – and that way we can look for better education and programs, which we’re going to talk a little bit more about some programs that Eli Lilly has available for people living with migraine, which is exciting. So we’ll get to that in a minute. But whoa, really interesting findings. Like you said, stigma’s interesting – it’s not but it’s good to learn this stuff, and we do love research over here, at the Association of Migraine Disorders.
So let’s talk a little bit about why it’s important for people living with migraine to have honest conversations with their healthcare providers. You just mentioned that there is a little bit of a barrier there because of that believability factor. So let’s talk about why – besides that – it’s important to sit down and have these conversations with a healthcare provider.
Pearlman: Well, I think, you know, there’s two parts to that. One, it’s important that if you’re impacted by migraine – if you’ve got disabling headache – there’s things that can be done, and there’s many more treatment options available today than there were just even 5 years ago, right, and even before that. There’s options out there, and you deserve the opportunity to be able to do the things that you want to do and get the right treatment for your neurologic disease that’s migraine.
And so, you should be bringing it up and having those conversations. I think it falls to us to work to destigmatize migraine amongst healthcare providers, so that people don’t have the perception that they won’t be taken seriously. And destigmatize it in the general community as well, so people feel confident that if they bring it up, they’ll be taken seriously, and they’ll be heard.
The other piece of it, though – and I think what’s even…well not more critical but equally critical – is the idea of what you say to your healthcare provider is important. Because if you convey to your healthcare provider the degree that migraine impacts your ability to function, you are more likely to get appropriate treatment than if you just say, I’m having headaches, and they affect me 7 days out of a month, right? So, you know, I’m having 7 migraine headache days a month. Okay, well that’s not great. But if you really talk about I have headaches 7 days per month, and I’ve missed work twice, and I’ve had to cancel activities 4 times, and I can’t plan a vacation because if I travel, it triggers migraine attacks. And if I change my sleep habits, I know I’m going to have a migraine attack.
Talking about impact, sort of, as the spark that will get a provider to act more definitively. And it doesn’t have to be a really long conversation. I think that’s the other fear that both patients and providers have, right? The patient says, if I start talking about headache, it’s going to be 30 minutes of question and answer, and I’m going to get drilled. And the provider says, oh if that patient, I see they marked headache on their sheet here. If I mention that, I’m going to be trapped in this room for 45 minutes trying to figure out what to do. It doesn’t have to be that complicated. It’s how often does migraine impact your ability to function? And, you know, if the answer is one day a month, then you need an appropriate acute treatment. If it’s one day a week or four days a month, then you should consider preventive treatment.
And it doesn’t have to be a really long involved conversation, right? Do you have headache? Does it have associated symptoms – sensitivity to light, sensitivity to noise, nausea? Does it impact your ability to function? If the answer to that is yes, it’s migraine. Okay. Check that box, move on. How often is migraine impacting your ability to function? You get that answer pretty quickly. You can do that in a reasonable amount of time in a typical primary care visit. So you just have to spark the conversation and use the right words. Because if a patient uses the right words, the provider will respond.
O’Brien: You know what’s really interesting about that – talking about impact and how migraine or headache (if you don’t know that you have migraine yet) impacts your life – it’s another good reminder to keep a headache diary, which I know we have this conversation a lot among the migraine community. And speaking as someone who’s lived with chronic migraine for way longer than I’d like to admit, keeping track of symptoms in a diary can just feel overwhelming and like a big burden and like it’s not worth it.
But like you’re saying, when you’re having these conversations with your doctor, if you can go back and say, not only do I have headache four days a month or one day a week, but it’s doing this to me. I’m missing work, I’m not able to travel. So all of which you said is just another subtle reminder why keeping a diary or keeping track of things is important. And not just the days, the times, that kind of stuff – it sounds like, more importantly, the impact can be a key to discussing with your healthcare provider.
Pearlman: Yeah, and I’m all about simplification. And there’s a time and a place to get into all of those details. And, you know, in some in more complicated cases, it’s important to understand all of that to make the right decisions and so forth. But, even if you can get someone to just put an X on a sheet of paper that has a day, this was the day I was impacted. Just so you…it doesn’t have to be complicated, right? If you can…so when you talk to your provider, because that’s the other thing – you go in, and you see them once a year, once every 6 months, or even if you make a specific appointment to talk about headache, being able to recall in the moment is not an easy thing to do, right? So just put an X on a calendar on a day you’re impacted. I was impacted 5 days a month the last 3 months, right? As that can be equally helpful.
O’Brien: I believe in simplification as well. I like to just put a dot on my calendar, on my phone, on the days that I live with migraine, and I have color-coded systems. So any way that it can help people, like you said, spark that conversation with their healthcare provider. So you did mention, in the OVERCOME study, that there were findings that really show that there is a need for more migraine awareness and education. And Eli Lilly has a really cool program; it’s called the Think Talk Treat program. Can you tell us a little bit more about the program – why it was developed and what people living with migraine can get from it?
Pearlman: So Think Talk Treat Migraine is sort of the essence of what we’ve already been talking about. So we had the data from the OVERCOME study, which showed that there was a tremendous amount of unmet need. People who should be on appropriate who weren’t on appropriate treatment. It also dove deeper into why that was. Why did someone not go to a healthcare provider? Why did a healthcare provider not prescribe? Why did someone get prescribed and not take? You know, all the different factors that go into that.
And so we looked at those sort of root causes, so to speak, as to what was leading to that unmet need. And then developed a program to target a couple of those root causes. And we chose to target diagnosis, recognizing that you have migraine and making it easy for a primary care provider to recognize you have migraine. Because again, the vast majority of people with migraine are going to be cared for in primary care; they are cared for in primary care. There’s not enough neurologists and definitely not enough headache specialists to take of everyone with migraine, and we don’t really think that’s necessary.
So using those root causes that we identified, we developed a program called Think Talk Treat Migraine. And we labeled it the 4-1-1 of migraine for those of old enough to use landlines, right? So 4-1-1 was how you got information, right? So 4 if you have headache and any of the 3 associated features – sensitivity to light, sensitivity to noise, nausea, or impact, sensitivity to light, nausea, impact – you have migraine. It’s all it takes to make the diagnose; it’s based on a validated tool called ID Migraine. If you have migraine, you have to ask one question, and that’s how often a month are you impacted by migraine?
And if the answer is 1, then 1 day a month acute treatment, 1 day a week, 4 days a month, preventive treatment. And so it’s a very simple message. And we put that out to patients through a website that we had through social media posting, through search optimization and things, so patients could see that message. And we also gave that simple message to primary care providers, to the primary care provider community with some basic education around it. Because what we wanted to convey was migraine – while it’s a complex neurologic disease – is not complicated for the vast majority of people, right? It’s ask a simple question, ask the right question, get the right answer and start treatment.
And then we wanted to make sure that they were using the same language on impact. So, easy to recognize migraine, and then match the conversation around impact. And that’s the essence of Think Talk Treat Migraine. And obviously, there’s a lot more that goes into it in terms of, you know, making sure it’s the right diagnosis and discussing different treatment options. But at least to spark that conversation and to make it so that patients and providers were interested enough in migraine to learn more. So it’s more of an activation program than an education program.
O’Brien: I love that because you get activated, and then you have the education portion of it, and you’re able to communicate with healthcare professionals. And healthcare professionals can get some education out of it as well. So it’s the activation program, which is really exciting. Well, Dr. Pearlman, as we’re wrapping up here, is there anything else that you want to share either about the OVERCOME study or about Think Talk Treat Migraine that you think people out there should know?
Pearlman: Well I will come back to stigma a bit because I do think that, you know, with advocacy work and working with advocacy organizations, we really can play a role in reducing the stigma of migraine. And if we can nudge that a little bit, I think that will make it easier for people with migraine to speak up and to have the right conversation, right? So I don’t want to let that go – that we have an opportunity to destigmafy/destigmatize migraine. And so we need to take accountability for that and works towards that. So, I think there’s that. And repeat the question again.
O’Brien: Just if there’s anything else that you want to share about the findings. What you’re saying is great. If there’s anything else about the Think Talk Treat program as well.
Pearlman: So I think, you know, obviously, we want to spread that message any way that we can. And, you know, while this is a program that Eli Lilly has developed, it is much more around recognition, diagnosis, and having the right conversations than about specific medications. And so, this is the contents available for others to use and to share and distribute. We have a website, ThinkMigraine.com, that we actually have just recently launched a Spanish language version of the website with some information there because that’s another area that has tremendous unmet need and is underserved in our Spanish-speaking population as well. And so, we think it’s important that we continue to advocate to get this message out and to try and demystify and destigmatize migraine.
O’Brien: Well it’s been a wonderful conversation today. I know I learned quite a bit, and I’d like to thank our guest, Dr. Eric Pearlman, from Eli Lilly, for joining us today. Dr. Pearlman, thanks so much for sharing your knowledge.
Pearlman: Thanks, Molly. Thank you for the opportunity.
O’Brien: We appreciate it. And we appreciate you listening and watching out there. Once again, I’m Molly O’Brien with the Association of Migraine Disorders. We’ll see you next time.
Voice-over: Thank you for tuning into Spotlight on Migraine. For more information on migraine disease, please visit MigraineDisorders.org.
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