My Patient Input Submission For ICER's Draft Evidence Report

With tomorrow being the deadline to submit public comments on ICER's review of the new class of CGRP inhibitor medicines for migraine prevention, I wanted to share what I submitted.  It was important for me to discuss how incredibly negligent it is for ICER to not have a migraine patient and a headache specialist on their voting panel. Making decisions on the types of medications accessible to migraine patients without including the experiences, knowledge or expertise of the patients themselves and their specialists is devoid of any real care or concern for the health, well-being or needs of patients.

To learn more about the public comment period and information about how to submit your comments, visit https://www.headachemigraineforum.org/icer/.

This is your final opportunity to share your story and for your voice to be heard! The deadline is tomorrow, May 8th.

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My name is Jaime Sanders. I am a migraine patient advocate, migraine community blogger, and member of Global Healthy Living Foundation’s 50-State Network.

I am most concerned that ICER has chosen to deny the request to have a migraine patient and a headache specialist included on the voting panel. There will be a severe lack of understanding of migraine disease without the experiences and knowledge of a migraine patient and a headache specialist.

As someone who has lived with migraine disease for over thirty years, the severe limitation of migraine specific medications and access to treatments is a common hurdle for migraine patients and the specialists who treat many of us. There is an egregious oversight of how serious migraine is and how the obstacles in receiving appropriate treatment have impacted the migraine and headache community and their quality of life. Excluding the perspectives of an actual migraine patient and headache specialist and solely relying on the antiquated QALY measurement is extremely troublesome to me.

QUALY stands for quality-adjusted life year, which is a generic measure of disease burden, including both the quality and the quantity of life lived.  It is used in economic evaluation to assess the value for money of medical interventions.

Having chronic migraine puts many limitations on my ability to function normally.  I have twenty-four/seven sensitivity to light, sound, and smells.  I am in pain most days and any physical activity, such as housework or exercise, triggers a migraine.  I have had to make changes to my diet to avoid multiple food triggers.  I suffer from memory loss, confusion, the inability to concentrate, and slower processing speeds.  My available treatments only lessen how many very severe migraine attacks I get, however I still have 15 or more headache days a month.

My current treatments do not greatly improve my quality of life. Every day I am in some level of pain and am inundated with the symptoms of migraine.  I must rely on several daily medications and supplements, receive Botox injections and nerve blocks, monitor dietary restrictions and triggers, and limit how much I do each day. Despite following these protocols, I still wind up in the emergency room way too often and have been hospitalized multiple times to treat an intractable migraine that would not break.

How is it possible to determine if the CGRP drugs are of value to the migraine patient without including and understanding the reality of migraine disease from those who experience and treat it? I have been on more than twenty different medications, including propranolol, topiramate, and amitriptyline, which I either failed on, could not tolerate due to the side effects or had an allergic reaction to. The inability to receive a treatment with long-term results is extremely frustrating.

My experience with the treatments I have been prescribed for both episodic and chronic migraine is like putting a band-aid over a bleeding artery. My pain is not being eradicated. It is simply being dialed down. I still must fight through pain to live my life and that is something that I no longer want to do. The burden this disease has on me and my family is tremendous. Everyone suffers along with me. Access to these CGRP drugs have the potential to elevate my quality of life to a place I have never experienced. They could provide an opportunity for people like me to reenter the world and become active members of society again. I want to be able to work, travel, exercise, and spend time with friends. With my current treatments, I am either completely unable to or must substantially limit how much I can do.

My headache specialist has expressed at every appointment how upsetting it is that I have been suffering for so many years. He acknowledges that what he is prescribing to treat my disease is inadequate but better than everything else I have tried. He wants to see me on a CGRP drug because it will finally give me a chance to have a much better life. He truly does not like to see his patients suffer like this and wants to be able to have the access to prescribe CGRPs. He is afraid that if ICER’s emphasis on hand-picked, short-term economic data is used to ignore the long-term patient benefits as well as short- and long-term societal benefits, including productivity, and quality-of-life for patients and families, that the drug class will be deemed too expensive – a decision that will come from a purported group of experts that does not include a headache specialist. I cannot overemphasize this glaring deficiency – the lack of a relevant specialist – in this study, and many of ICER’s previous studies.

I can only hope that if someone on the panel or in the ICER organization, gets a life-altering disease, this pattern of ignoring the experts doesn’t continue, and a qualified specialist is available to make decisions for them.

I will never give up hope that I will have access to groundbreaking treatments, despite the harping presence of groups like ICER which seem to promote their own agenda at the expense of patients, their families and society. I will continue to advocate for the millions of people in this country who suffer silently with migraine disease. Every single one of us deserves to live a life free of pain and to deny us that access is cruel and negligent.