Dear Institute for Clinical and Economical Review,
I am writing to ensure that you fully understand what it means for a person to live with Migraine, the impact this disease has in my life, and the desperate need for access to new and different medicines.
I have had Migraine disease my whole life. My first attack was at age 6 and I was episodic until my mid-thirties. At that point in my life, my migraines increased to a rate of more than 15 migraines a month, classifying me as Chronic. No longer was Migraine a small and manageable part of my life – it began taking over my life. No longer could a day (or even an hour) pass without me having to think about my disorder. As I write to you now, I have an ice pack strapped around my head to control the migraine and symptoms. I will need to change it soon; I have 15 ice packs in my freezer and some days that is not enough. Currently, I experience an average of approximately 29 headache days per month, with an average of 18 migraine events per month. When I have a migraine attack, my physical capabilities range from highly inconvenienced to disabled to completely incapacitated. The symptoms I have (in varying degrees) are light sensitivity, nausea, vertigo, irritability, disabling lethargy, inability to concentrate, aphasia, and throbbing head pain.
Migraine has a major and negative impact on my life. Becoming Chronic since about 2007, I have been forced to leave my career and the job I love as a Registered Nurse because of the frequency, erratic, and intense nature of Migraine. I can no longer exercise like I once loved to, as cardio and being outside can trigger my migraine. I can no longer clean my house. And worst of all, I can no longer be the “present” mother and wife to my four children and husband of 25 years. My youngest daughter is 16 now and doesn’t remember a time she didn’t have to look for me in my bed when she’d come home from school. Can you imagine how devastating this is for someone only in their 40’s and who once lived like a normal person with normal energy levels and abilities? Finally, this year I have been approved for and recognized as having a disability that makes me no longer able to work. I am disabled, and it just completely sucks. I don’t want to be controlled by Migraine; I want so badly to actually live.
Migraine is a very challenging disease to treat effectively. There is no cure and many of the medicines used for people with migraine don’t work very well. Over the course of my Chronic Migraine decade plus, I have trialed preventative treatments: 19 medications, 8 supplements/herbs, 11 medical treatments, and 6 fields of specialists. Some of these treatments or medications have helped a little, some have helped for a short period of time and then stopped working, and some have led to serious and horrible side effects. Some of the worst adverse reactions I’ve had are weight gain, difficulty breathing, numbness of my face, mouth and throat, suicidal ideations, cognitive and behavioral changes, and increased migraines.
At present, I am on Botox for chronic migraine and welcome 40+ injections every 3 months in my head, temples, neck, jaw and shoulders. Botox helps reduce the intensity and duration of my migraines, but it “wears off” well before I am due my next injections – insurance will not allow the injections more frequently. I am also on 2 oral medications and 5 supplements for migraine prevention which help a very small amount. I was able to trial 2 of the brand new CGRP mediations before my insurance proclaimed that I could not be on both CGRP AND Botox – I had to choose one or the other. This is simply an insurance decision – NOT a medical one, as Neurologists and the drug manufacturers report both CGRP AND Botox are safe when used together. I wonder if insurance would deny a diabetic 2 types of insulin that their endocrinologist prescribed? No, you can only choose one or the other. Absurd! My insurance also allows me 9 triptan medications a month for migraine attacks. Directions are to take the triptan at the first sign of migraine. And repeat, if needed in 2 hours, not to exceed 3 tablets in 24 hours. Well, if Chronic Migraine is defined as 15 or more migraines a month, how does the triptan/insurance math work out? Moment of truth: it does NOT. As a Chronic Migraineur, you have to determine which migraine gets triptan treatment and which does not or cannot. The fact is, Chronic Migraineurs are left to suffer terribly with no adequate treatment. I often wonder if we are treated worse than animals?
If I am to have any kind of normal, productive life, it is obvious I require new or better treatment or even more of the treatment and medication available but withheld or denied to us.
Chronic Migraine is an expensive disease. I have lost the ability to work and provide for myself and my family. I spend hundreds a month and thousands a year to maintain existing medications and treatments, and trial new treatments, medications, medical devices, and products to try and manage this disorder. My migraines cost at least 6-10 thousand dollars a year… and I still deal with pain and disabling symptoms nearly every single day of my life.
It’s pretty obvious that my quality of life is very negatively impacted by Migraine, and I need access to new acute medicines that can help stop migraines and avoid the pain and disability I experience. I ask you to respect my pain and to fairly assess these new medicines so that I can be a healthier and more productive human being.