Welcome to June, a month dedicated to awareness for migraine and headache disorders. I’ve always felt a unique – rather unwelcoming – relationship between myself and this month, and current events have given me the word for it.
Migraine and Headache Awareness month as it currently exists is merely a performative display that primarily fails to push the conversation beyond the migraine and headache communities. I’m sure this sentiment is felt by other illnesses and causes that have a month dedicated to them that no one really knows about.
I could sit and draw connections between well know Breast Cancer Awareness and Migraine. Such as the shared 12% prevalence rate. For Breast Cancer, 1 in 8 women are at risk. For Migraine, 1 in 4 people are at risk. The National Institute of Health reports that Breast Cancer receives approximately $709 million in funding from them, compared to $40 million for Headache and $28 million for Migraine. The burden for these two conditions have long been discussed and compared as similar. This comes directly from the NIH spending report.
Digging further into statistics, if we look at funding for related conditions, we see that funding per patient also has disparities. A 2017 comparison shows that Migraine receives roughly $0.51 per patient, compared to $58.33 for Epilepsy, and $252.50 per Multiple Sclerosis patient. This makes Migraine the least publicly funded neurological condition when compared to economic impact.
If Migraine is considered in some cases the number one, and in others the third most disabling condition in the world, why is awareness and funding feel rather non-existent?
For starters the people and foundations striving to bring awareness are leaving out large populations of people with migraine from the conversation, so the conversation appears to be a small and heavily focused niche. It’s hard to push for awareness when representation is exclusive.
Current awareness efforts will claim the discrepancies start in the doctor’s office.
Specifically, what’s missing from the doctor in the doctor’s office’s education. In standard medical school an average of 0-5 hours are dedicated to headache/migraine education. In the focus of Neurology, often as little as 1 hour is dedicated to headache and migraine during Neurology residency.
What is the impact of this? When you seek care for migraine or headache, your primary care doctor may have some clinical experience to address your concerns, but often will want to send you to a specialist. However, the specialist is a Neurologist, who’s area of expertise is the nervous system. Although headache disorders fall into this category, your specialist is often spending much of their time with patients who have had strokes, have epilepsy, or MS. Many Neurologists don’t seek out additional education surrounding headache and migraine.
This leaves 1 in 4 people left to hope they find a Neurologist with a focus in headache medicine, or a dedicated Headache Specialist.
This is not where headache and migraine awareness begins and ends, because most people never get the opportunity to see their doctor or have continued care and management. This privilege is often only afforded to those who can put towards time and substantial amounts of money when seeking out the best care across the country. This is where awareness is focused, but those like myself are a minority of headache and migraine sufferers. Navigating healthcare insurance may be advertised as a primary barrier, but it doesn’t even begin to scratch the surface.
In order to have access to care, you have to have a doctor, health insurance, and community support. Globally this is not something people have.
There are clear disparities in medical conferences and discussions of what people should do if they have migraine, but the automatic suggestion is to get on a preventative treatment to reduce the intensity, frequency, and duration of migraine attacks. Preventative treatment is great, but this advice comes without addressing people who lack access – which is often compromised of people in marginalized groups.
A common preventative: Topamax, has a cost of $57 without insurance. Alone that doesn’t seem like much. If you also need an abortive medication, a common Triptan: Rizatriptan, has a cost of $284 without insurance. That’s $4,000 a year for medication without insurance, which doesn’t take into account the cost of seeing a doctor required to get these prescriptions.
Personally, my migraine treatment plan includes one of the newest abortive medications, Ubrelvy, which has a $3,000 retail price tag.
The cost of migraine medication, especially as it relates to the new and direct targeted therapies, is inaccessible. Without insurance, it’s often out of the question.
I revert back to the sentiment that Migraine Awareness Month is performative, because we often see repetition of a few things: a need for increased funding, general statements of what migraine is and how it’s treated, and a few suggestions for awareness. We don’t see anything addressing the vast majority of people with migraine who will likely never get a preventative prescription medicine.
I am here to address you, because I see you and you are often the people I spend the most time interacting with. But I am also here to address other “advocates” and call out the real lack of awareness that exists year-round.
First and foremost, there are many preventative measures that do not require a doctor, or copious amounts of money.
Here area few areas of prevention beyond medication:
- Sleep Hygiene
- Stress Reduction and Mitigation
- Creating and Enforcing Boundaries
- Awareness of Accommodations
- Essential Oils, Vitamins and Supplements, and Herbal Remedies
These are just a few areas that stand out to me right off the bat as some major lifestyle components often left unaddressed by doctors. My Migraine Resources page gets into many more details.
Migraine and Headache disorders are incredibly individual, so awareness of how to best manage your pain and symptoms is also individual.
For some people, the pain itself is manageable, but nausea is a bothersome symptom that interrupts various aspects of life. Knowing what migraine is isn’t going to fix nausea. Sharing that peppermint oil or a breathmint could relieve some of the discomfort and then identifying what (if any) habits cause the nausea, such as the stress from a disrupted routine, can better address the problem.
It’s details like that, that actually matter. Blanketed advice is not the awareness that needs to be spread. Complicated statistics and medical studies, or explanations for various medications don’t suffice because they often are put forth in an accessible manner.
Migraine is an incredibly complicated disorder, compounded by a society that still holds headache as a symptom of hysteria. But accessibility to migraine management and awareness is hindered by barriers to care that include racial discrimination in healthcare, class/socio-economic barriers, and general cultural barriers.
Throughout June, and beyond, I want to emphasize these true barriers of accessibility and bring awareness to them so that other’s within the migraine community will begin to center these in their own discussions.
It’s no secret that migraine and awareness efforts all come across the same, they look like me and they serve me, but migraine and headache disorders are not discriminatory and it’s time that awareness and advocacy serve and emphasize the voices of the broad population and communities affected.