I am not the only one, but I have to make it really clear: I just am not Serena Williams.
Serena Williams, pro tennis player, migraineur.
Serena Williams takes the drug I take. She takes the only drug in this decades long search for relief to provide me any, but as millions of Americans watch her wake up and take Ubrelvy her “any time any where” migraine medicine, I watch the familiar scene play out and she is not me.
These are my drugs. These are what I’m prescribed.
But these commercials are nothing like my life with migraine.
Serena wakes up really early, her daughter jumps on her bed the sun cascading through the windows. She reaches for Ubrelvy because she woke up with a migraine.
I wake up, my room is very dark. I make my way to the bathroom to grab my Ubrelvy and hope no one I live with makes any measurable noise over the next few hours. My day doesn’t start here, I take my meds and I curl back up in bed because sleep is often the only shot I have at meds kicking in quick, if at all.
Serena is out on the tennis court, full energy in the bright sun as the words across the screen spell out that Ubrelvy can stop migraine in its tracks in as little as two hours.
I’m getting up now, maybe I slept for a few more hours awaking in a sluggish fog. Maybe the pain is less. We’ll assume the meds worked. The pain isn’t gone though, pain freedom doesn’t happen for people like me. I will take it really easy today because one wrong move, one extra burst of energy or over enthusiastic attempt to quick do some chores and the meds will just kick back out. Ubrelvy does reduce my pain, greatly, but even the nice nurses in the ER will tell you to set your expectations for migraine treatment at lower pain, not no pain.
In the same commercial series, it’s midday and Serena jumps between scenarios on the tennis court and an office during a presentation when a migraine strikes. She reaches for her any time any where migraine medicine for quick relief.
But they don’t show what happens in those two hours between taking the meds and that relief, does Serena have a dark room to go lay down in? Did she finish her presentation? Move back another meeting? Leave work early?
Being someone with chronic migraine who has tried and failed most medicines that hit the market over recent years makes the reality of all of these high budget commercial campaigns that I have to sit through and that all of my friends, family members, and neighbors get exposed to an incredibly taxing experience.
I began to notice just how different from reality drug commercials are after I failed the first CGRP injectable migraine preventative: Aimovig.
Suddenly a whole slew of commercials were beckoning at me and everyone I knew about this life changing drug.
These commercials are selling a fantasy.
Aimovig shows us all the ups and downs in life. The joys of family, of adventure, of work, the pain of heartbreak and the full value of what life is when you are there to experience all of it. Unless migraine steals your chance to say “I am here.”
For those around us, they see that pull towards the person in their life that is suddenly missing. The person they know who has migraine. What if they could have this brand new drug? What if they could get their life back? Aimovig commercials tell us the amount of migraine days could even be cut in half.
They’re so excited to tell us about it. They’ve bought into the fantasy. Why wouldn’t they?
But for many of us, it’s been months if not years since we failed the treatment. An excited “have you heard – ” quickly shifts to huge dark storm clouds as you break it to someone who genuinely cares that this drug didn’t work. Even worse, maybe this drug hurt you. Maybe you – like me – ended up incredibly sick because of this drug.
The scenes are endless the new drugs keep coming.
Emgality turns us into pirate moms getting to plan adventures with our kids.
Ajovy invites us to have one less thing to juggle, since we’re all balancing so much.
These commercials take someone who has migraine and gives them their life back. It shows miracles being performed and the positive life that awaits us all. It gives us all of our days back. It lets us have all of the moments that migraine used to take from us.
But even the drugs themselves don’t promise those kinds of results. A 50% reduction in migraine days on Aimovig or even a 60% reduction on Emgality for someone who has 30 migraine days a month is still going to lose out on their life for 12-15 days every month.
The people our friends know who have migraines? They have them bad. They interfere with their life.
Our friends don’t know the difference between words like chronic and episodic.
Our friends don’t know that the research and the promising results are for a population of patients who have episodic migraine, typically meaning under 8 migraine days a month.
The results are staggeringly different in the real world with a real patient population, and especially once you get into the chronic migraine and intractable migraine subsets of the population.
The commercials show us something shiny and new. They show us how we can get them for cheap.
They don’t show what many people go through – if the drug does work – and their insurance says no. They don’t show all of the requirements and other drugs you will have to try in order to gain access to these meds. They aren’t making commercials about $15 generic medications, no these commercial medications have price tags in the thousands of dollars.
For other migraine spokespeople – Serena included, but the likes of Khloe Kardashian – the prohibitive costs of the drugs that helped turn their life around isn’t a consideration.
In Khloe’s commercial for Nurtec, it felt human and real. A real person was sitting in front of us discussing the grief and the pain of a lifetime of migraine. Talking about the important parts of life that she missed out on before the science reached new heights giving us CGRP medications like Nurtec.
In another commercial, she highlights how she sits in the dark, hiding from the world.
A migraine lived experience I can actually relate to. A refreshing view. Even as the scenes change and she finds herself in the light, meds having kicked in letting her get back to normal activities. Across the bottom of the screen it says “not effective for all patients” bringing many of us back to the reality that it’s a good possibility we’re one of those patients it doesn’t work for.
Qulipta finds itself as the latest migraine commercial. We see the shift over the last few years in what these meds do, how they work, what they’re for. It started with injections, then we got commercials for abortive treatment, and as Nurtec evolved to being taken as both a preventative and an abortive we finally land on Qulipta which works immediately and over time to reduce migraines.
By now, there’s hundreds if not thousands of migraine patients who know that the entire class of CGRP medications doesn’t work for them, because although CGRP may play a role in migraine it isn’t the only contributor despite really being the only thing being studies and further refined to treat migraines.
Our friends and families are seeing all of these new drugs, thinking surely we haven’t tried them all. If all of these drugs have great percentages of people responding and reducing their migraines surely one of them has to work for us, we just aren’t trying hard enough.
Which brings in the next stigma caused by these commercials. It isn’t enough that the commercials make us feel bad. Remind us during our primetime tv watching, football enjoying, waiting for our Youtube video to play moments of life that the new therapy failed us or made us sicker. Or shows us these totally unrelatable scenarios of families and successful rich people who got their life back and can afford uninterrupted access to the medications. No that isn’t enough to suffer through and quietly curse at the tv screen with it’s loud, upbeat, and bright presence.
What these commercials really do is bring awareness to migraine disease in a way that tells everyone that it’s all going to be okay, You can and will get better. Your life is yours. You can be in control.
The world knows about migraine now.
They bought into the fantasy sold by the drug companies and now they want to know what’s wrong with us. They want to know why this didn’t work for you and for me. They want to know what we’re doing wrong because now there’s so many different drugs, how could they all not work?
They still don’t know that by in large, these drugs work on the same receptors. They still don’t know that the science is still asking the questions we are asking, which is: what really causes migraine? We don’t know. There is no cure.
But they know that we aren’t better.
They decide we probably don’t want to be better. You can see it just looking at their faces when they are gently let down again over another new therapy you already know about. They’re having a very hard time still feeling bad for you.
Awareness under the guise that treatment exists and is effective means for the rest of us, we’re the problem. Not migraine.
And of course, many of us do not live with just migraine. As many as 88% of people living with migraine have a comorbid condition, autoimmune disorders being a common one.
Do you know what else gets a heck of a lot of air time on tv? Drug commercials for biologics used in the treatment of many autoimmune disorders including: psoriasis, rheumatoid arthritis, and Crohn’s disease.
Many of us who are being subjected to these migraine commercials also have to listen to the commercials for our other conditions and we see the same, if not worse: active and otherwise healthy individuals who’s life is limited until they get a magical and expensive injection (or once daily pill) of a biologic. And suddenly they have their life back. They are hiking. They are with their family. They’re having brunch.
Of course, at least these drugs are given to enough people that much of the happy life action in the background is muffled by this horrible sounding list of side effects.
Many of us have even tried these drugs and know that we didn’t get our life back. We got a trade off of lower joint pain and wound up stuck in bed living out those side effects rather than the commercial fantasy.
But hey, they work for someone.
Someone got their life back. And if only for a little while before treatment suddenly stopped working and they had to go through the messy, sometimes years long attempt to find another one that works.
But maybe it worked for a little while.
And their neighbors they saw it work. Their friends are back in their life. Family thrilled this year they came for the holidays.
So these heavily commercialized drugs continue to take up an exorbitant amount of air time and the world around us views serious chronic conditions as simple things we can go to the doctor for and we’ll be better too. And we curse under our breath at the ads.
Boats against the current. Beating on. Something like that.
A.
