Patient Perspectives

The Patient journey | Migraine

May 18, 2021 FIECON Season 1 Episode 2
Patient Perspectives
The Patient journey | Migraine
Chapters
Patient Perspectives
The Patient journey | Migraine
May 18, 2021 Season 1 Episode 2
FIECON

In this podcast, Patient X talks to us about her patient journey and her experiences, as both a patient and patient advocacy leader.

Five years ago, a high impact event led to Patient X being diagnosed with chronic migraines. Patient X is a volunteer with several migraine and headache non-profit organisations, she has a Master of Public Health and Epidemiology and works as a health economics and outcomes research worker.  
 
Migraines have many manifestations and according to the International classification of headache disorders, more than 50 types, these include migraine pain with and without aura, chronic migraine, menstrual migraine, hemiplegic migraine - a rare type involving temporary weakness on one side of the body, migraine with brain stem aura, vestibular migraine, predominant vertigo, abdominal migraine, cluster headaches, and many more. 
 
There is much more than just head pain in a migraine or headache, the heterogeneity of diseases and social determinants of health for example, race, urbanicity, and access to health care providers makes it hard to consistently identify migraine patients.
 
Advocacy is key to combating the burden of migraines. There is stigma attached to migraine disease related to the historical view that it was a 'hysterical woman's problem' which was not serious and could be cured by simply 'popping a pill’.  
 
Educating the wider population about the wide variety of symptoms of migraine and removing that stigma is essential in reducing both the clinical and economic burden of the disease.

Show Notes Transcript

In this podcast, Patient X talks to us about her patient journey and her experiences, as both a patient and patient advocacy leader.

Five years ago, a high impact event led to Patient X being diagnosed with chronic migraines. Patient X is a volunteer with several migraine and headache non-profit organisations, she has a Master of Public Health and Epidemiology and works as a health economics and outcomes research worker.  
 
Migraines have many manifestations and according to the International classification of headache disorders, more than 50 types, these include migraine pain with and without aura, chronic migraine, menstrual migraine, hemiplegic migraine - a rare type involving temporary weakness on one side of the body, migraine with brain stem aura, vestibular migraine, predominant vertigo, abdominal migraine, cluster headaches, and many more. 
 
There is much more than just head pain in a migraine or headache, the heterogeneity of diseases and social determinants of health for example, race, urbanicity, and access to health care providers makes it hard to consistently identify migraine patients.
 
Advocacy is key to combating the burden of migraines. There is stigma attached to migraine disease related to the historical view that it was a 'hysterical woman's problem' which was not serious and could be cured by simply 'popping a pill’.  
 
Educating the wider population about the wide variety of symptoms of migraine and removing that stigma is essential in reducing both the clinical and economic burden of the disease.

Karl Freemyer 0:03  

Today, we introduce a very special guest, a patient advocate, a patient, and a health outcomes researcher who will speak about migraine. Patient X, welcome to the podcast.

 

Patient X 0:57  

Thank you so much, Karl, I am Patient X. I volunteer with several migraine and headache non-profits, including Miles for Migraine, Chronic mild migraine awareness and Headache on the Hill. About five years ago, I was in a high impact event that led to chronic migraine and I currently wrestle with the health system and understand treatments and challenges throughout the year, which has brought me a unique perspective. I also have a Master of Public Health and Epidemiology and work as a health economics and outcomes research worker.

 

Karl Freemyer 1:27  

Thank you so much. To start, we're going to just ask you a couple questions about the disease to get an understanding of your experience and a little overview. So, first and foremost, in your experience, what clinical manifestations best define migraine, and what does the disease staging look like?

 

Patient X 1:45  

That's a great question. For me, personally, migraine is identified by severe throbbing or a pulsing sensation, usually on the left side of my head. Other symptoms may include nausea, vomiting, and extreme sensitivity to light and sound. migraine is typically divided into episodic or chronic migraine 15 or more headache days per month. 

 

Patient X 2:05  

However, migraine symptoms and subtypes are extremely diverse. There are more than 50 types of headache disorders. According to the International classification of headache disorders, and some include migraine with and without aura, chronic migraine, menstrual migraine, hemiplegic migraine, a rare type involving temporary weakness on one side of the body, migraine with brainstem aura, vestibular migraine, predominant vertigo, abdominal migraine, and cluster headaches, and more. 

 

There's so much more than just head pain in a migraine or headache, the heterogeneity of diseases and social determinants of health for example, race, urbanicity, and access to health care providers makes it hard to consistently identify these patients. 

 

Patient X 2:50  

And there's also a severe shortage of headache doctors in the US leading to chronic attacks, worsening symptoms, necessity of ER treatment or emergency room treatment and improper treatment leading to opioid use disorders.

 

Karl Freemyer 3:04  

You spoke about the heterogeneity of manifestations here. And I presume that this same heterogeneity exists on the population level. So, what kind of populations does migraine affect globally?

 

Patient X 3:18  

According to the American Migraine Foundation, migraine is present in 1 billion persons worldwide. That's one in four households, one in five women, one in 16 men and one in 11 children. This includes all spectrums in the US, the lifetime prevalence of migraine disease among women exceeds 25%. And the prevalence has not changed since 1989. 

 

Based upon three bars, epidemiological studies, however, migrants in the US are more prevalent among Caucasians and African Americans. And the lowest prevalence in the US is about Asian Americans. And typically, migraine is more common among people in lower socio-economic groups. But migraine is the second most disabling medical condition in the US and worldwide. And it's the most disabling condition among people 15 to 49 years worldwide.

 

Karl Freemyer 4:07  

With respect to identifying this at need population. What does an average migraine patient look like? And how do caregivers identify them?

 

Patient X 4:19  

It's challenging to identify the quote, typical migrant patient, given the fact that there is so much heterogeneity and the type of headache diseases, as well as there's a genetic links, so about 90% have a family history. So, 10% do not have a family history, me included, and there are at least 44 associated genes with migraine based on a 2017 review article. It's not so black and white, such as it's either you have a family history, or you don't. There's also the migraines threshold, which can be raised or lowered by external and internal factors. If there's a sufficient number of different triggers that build up and cross the threshold migraine attacks can be initiated triggers may include genetic diet hormone fluctuations stress, dehydration, odours, alcohol, caffeine, hunger, sleep, the lack of sleep or too much sleep change and barometric pressure, and triggers are not consistent for everyone.

 

Karl Freemyer 5:18  

Can you please tell us some of the current treatment pathways and classes available in migraine?

 

Patient X 5:30  

This is actually a very exciting time for treatments in migraine. There are two types of treatments, preventative, or prophylactic medication, as well as abortive or acute treatment to prevent preventative treatments. There are medications taken daily to prevent migraine attacks from occurring. They can include blood pressure medications, such as beta blockers and calcium channel blockers, antidepressants such as tricyclic antidepressants, SSRIs and SNRIs as well as anti-convulsive and Botox. 

 

Most recently calcitonin gene related peptide (cgrp) were the first migraine specific preventative to be released. Under abortive, or acute medications, there's a whole slew of treatment classes, including non-steroidal anti-inflammatories (NSAIDs), triptans,  anti-nausea medication, analgesic combinations (such as Excedrin), and most recently two new drug classes Gepants and Dpans.

 

Gepants are oral CGRP antagonists and include Ubrelvy® and Nurtex®; and ditans include Reyvow® which is an antagonist of the 5HT1F serotonin receptor. And unlike triptans does not constrict the coronary or cerebral vessels, and as an alternative for those who can’t take triptans. Triptans were released about first released about 30 years ago. And it's been up until now that there's been no new aboard is on the market. So, it's very exciting that we now have two new ones.

 

Karl Freemyer 7:01  

Excellent news. Yeah, there's been a lot of innovation in this area as of late so very pleased about that at the industry level. The next questions we really want to get into your experience and sort of your journey as a as a patient here. So first spotlighting the burden of migraine based on your experience, the things you've been through from a clinical perspective from a perspective of being treated by carers and also clinicians, but also from an economic perspective, what has the burden of illness been for you and migraine,

 

Patient X 7:36  

Migraine disease has robbed me of numerous moments of my life. It is very fascinating to see the stigma from friends to acquaintances, employers, even doctors, and sometimes I noticed myself portraying the stigma of migraine as well. There's such a small number of research funding available and only the first preventative drug was just recently developed. Therefore, advocacy is key to combating this burden. Going back to the stigma migraine is disease is historically viewed as a hysterical woman's disease. A little problem, something that is not so serious. If you look at the old ads from earlier in the day, it's saying you can pop a pill from pop, there's a woman lying on a couch, and you could just pop a pill and the disease would go away. But there is significant economic burden as well. In the US healthcare and lost productivity across associated with migraine are estimated to be as high as $36 billion annually. And in 2015. The medical concentrating chronic migraine is more than 5.4 billion. Although sufferers of migraine or I prefer to describe it as migraine warriors spent over 41 billion on treating their entire range of conditions so co-morbid conditions associated with migraine, more than 157 million workdays are lost each year in the US due to migraine and migraine warriors, like those who suffer from other chronic conditions experienced the high costs of medical services too little support and limited access to quality care. I'm very fortunate to live in an urban city with access to several headache specialists. However, most people in the country have no access to a headache specialist. I'm lucky in that I go to actually two centres to receive care, something that's not often heard of, and that I have the financial means and insurance to cover those as well. 

 

Karl Freemyer 9:25  

Your comments regarding the clinical burden here the thought that this is a transient disorder that can be treated, you know, as sort of a one off solution with a pill obviously feeds the stigma that exists but when you look at the actual ramifications of this disorder and absenteeism and reduce quality of life and being robbed of some of the moments that you are talking about, it's obviously a far more substantial disorder than something that's simply transient and it can be that can be treated with a pill is that is that kind of the battle you face it every day in the advocacy space here.

 

Patient X 10:02  

Personally, in my treatment toolkit, which I like to refer to it as since there's so many things that come into play, I also receive nerve blocks and SPT blocks, or, you know, talion ganglion blocks, which is the bundle of nerves in the back of your nose that get numbed for nerve blocks, taking lidocaine and injecting them directly into my occipital temporal and trigeminal nerve. So, I typically receive those twice a month, in addition to my slew of a board of and preventative medications. 

 

Karl Freemyer 10:32  

So, it sounds like something that's quite proactive versus just being reactive and transient, certainly going beyond the burden that you experienced day to day be great to understand what you think is a big unmet need or unmet needs in the area of migraine as well, particularly in therapeutic options. 

 

Patient X 10:51  

Of course, I think a major unmet need is a lack of headache specialist. I only have the number in the US but there are about 700 certified US headache specialists and 39 million suffers, there's obviously a major disparity. And just because the disease is invisible, it does not mean it does not deserve care. So more than half of migraine warriors are never diagnosed, the majority do not seek medical care for their pain, and only about 4% of migraine warriors who seek medical care consult headache and pain specialists. Finally, although 25% of sufferers would benefit from preventative treatment, only 12% receive it, which continues to shape the picture of disparities going back to areas of unmet need.

Besides the lack of headache specialist, there needs to be more research into combating the stigma of migraine disease, I believe it's often the stigma that I've had a neurologist even tell me, I failed one therapy, there's nothing else out there for me. I knew as a researcher, that was not actually the case.

But for many patients, if they were told there's no other treatment available, they may just believe that face value and no longer seek treatment. And that's a major missed opportunity. As we had discussed earlier it is a very exciting time in migraine disease therapy, because there's the introduction of CGRPs, ditans, and Gepants. And there's so much more in the pipeline but making sure that the route of administration is accessible.

So going back to some of the therapies, there are different routes of administration, oral sublingual, injection, intramuscular, injection, even infusion patients received to try and break an attack. So, making sure that these new therapies are accessible to all their patients. Typically, migraine disease causes nausea among some patients, and so making sure that there's rapid administration that bypass the stomach and our equipment effective.

 

Karl Freemyer 12:44  

And that sounds like a real opportunity for these future therapies obviously. Provide physicians more options for treating provide patients with more options and potentially further treatment lines so that when they present to the specialists, they're not given that answer that you alluded to before, which is sorry, you're out of options. I presume that these new drugs will give people a reason to seek care and reduce the discouraged number of discouraged migraine sufferers.

 

Patient X 13:15  

Definitely, it's quite incredible to see the super responders to the new cgrp medications. You see these super responders who have gone from having chronic intractable migraine to suddenly having one or two headache days a month, which is absolutely incredible. But there are so many mechanisms that are not quite known about how migraine occurs in the brain that future research continues to be vital. There used to be a registry for migraine patients in the US and unfortunately due to COVID, the funding was lost. It recorded migraine days medications use both preventative and abortive a quality-of-life surveys as well as a blood test if the patient was interested in participating, and that hopefully will continue to yield more research to come.

 

Karl Freemyer 14:09  

That's excellent. Given your unique perspective as both a patient and a patient advocate. What do you think is the real importance of patient advocacy within this disease? I think of similar areas where a disorder wasn't really well understood. And then advocacy helped a real broad swath of the life sciences better understand and characterize and treat it like in breast cancer today, which is a real example of positive advocacy and HIV. Is there a goal for migraine patient advocacy that you're striving towards or where you'd like to get?

 

Patient X 14:48  

Definitely, of course. What's interesting is despite the staggering social and economic costs, quality of life impacts, migraine remains under diagnosed and undertreated worldwide. It's essentially ignored and dismissed.

 

Like we discussed earlier migraine has been labelled as a woman's disease. But as we've seen through breast cancer and HIV, breast cancer patients and advocates have brought the disease advocacy to the forefront. Now when someone says they're diagnosed with breast cancer friends, acquaintances, neighbours, family, etc rally around the warrior and the advocacy for breast cancer advocates has helped decrease the stigma. 

 

But migraine has so much stigma even faced by oneself that the patient support groups are just getting started. In the Miles for Migraine act now program I work with fellows matter headache specialist fellows and patient advocates around the country to learn about combating migraine stigma and how to best and overcome it and make a notable mark on the world and starting within our own neighbourhood. And ultimately, that will accumulate with projects of some sort to increase advocacy in our specific space for headache fellow region. There’re several non-profits, including the Coalition for headache and migraine patients - Champ that has education, community and advocacy across a consortium of non-profits in this space. And they continue to work tirelessly to overcome that, there's Headache on the Hill, which is an annual advocacy event, this year, it will be worked virtual due to COVID. But there's a specific ask we bring to our Congress, men and women to help overcome the stigma and barriers faced by migraine headache patients.

 

Karl Freemyer 16:29  

You mentioned not for profits, and of course, the grassroots movements to spur on this advocacy. What role do you think the pharmaceutical manufacturer takes? And how can future drug development and the supply chain of those manufacturers incorporate patient advocacy into their future marketing and commercial efforts?

 

Patient X 16:50  

That's a fantastic question. There's currently a lot of funding in migraine among the manufacturing side due to the new cgrp and new abortive, but there's concern that the funding will dry up as soon as the patents dry, and the NIH has never come close to providing sufficient funding for migraine or headache research. I think the question that needs to be asked is the world does not see this as a big public health issue. Speaking of migraine disease, or headache disorders, so has me better include patients and advocates in the discussion, working with organizations for the consortium of non-profits like Champ is a great place to start. Making the TV commercials and ads more realistic is another great place to breaking down the stigma. I see the new commercial for some of the newer agents and I don't see me in the commercials, although on chronic intractable, I'm incapacitated by my attack. I see people working out in the commercials, cooking, and having fun, where that's not my reality. And by showing someone that they can take a pill and suddenly get back to their lives. Although that could happen with some patients. That's fantastic. It's not showing the actual reality of migraine disease and how severe it can be so including patients from the start in the messaging to help us shape the messaging for our disease would be a vital approach. 

 

Karl Freemyer 18:07  

Absolutely.  And that's sobering to hear from you directly that this disorder is so disruptive to your daily activities that even imagining doing something like working out or cooking is pretty much incomprehensible. So, with that in mind, is there is there anything else that you'd like to share with the listeners regarding your day-to-day experience or your journey with migraine, anything that would be helpful for people to understand they better can understand how their friends and their family, and their co-workers are dealing with this.

 

Patient X 18:36  

I think one simple thing is not saying it's just a headache by putting the word just in there. It's dismissed, migraine doesn't affect just my physical health. It also affects my emotional health. There’re multiple co-morbid psychiatric conditions, such as depression and anxiety. Many people are not able to fully work with an attack or and presenteeism and absenteeism are both substantial contributors to work productivity loss with primary factors including pain, severity, migraine, symptoms, and sleep disturbance. For me, it's easier to have more flexible work schedule to accommodate the surprise attack and did asking your friend or acquaintance or family member or co-worker, how can I help you? How are you feeling today? it's invisible. So, no one knows how I'm truly feeling which can be a blessing and a curse. 

 

Karl Freemyer 19:26  

Absolutely. And this is amazing, amazing perspective that you're providing us. So, thank you so much for joining us today. It's been a really interesting conversation on this disorder, migraine and we really look forward to seeing what the future holds from everyone at FIECON and from the industry at large is listening. We thank you for your time and for sharing your experience with us today. And for all those that are tuned in thank you for listening and hope that this sheds some more light on migraine manifestations how it impacts the people that we love and work with and we interact with every day. Thanks very much all.