Advocate by Sharing Your Migraine Story with ICER

The word “advocate” can sometimes be scary. By definition, an advocate is someone who publicly supports or recommends a particular cause. Synonyms for advocate include promoter, champion, campaigner, fighter and I would like to add warrior.

There are different definitions of the word “advocacy” that the migraine community uses. I recently find that I need to remember that there are newbies in our community that don’t know the lingo us old-timers use.

Examples of ways advocate

So, to help all of us get on the same page, here are some examples of ways to advocate: share your story, volunteer at an in-person event, moderate a Facebook group, participate in June during MHAM and Shades for Migraine, educate others, repost or retweet on social media and influence public policy.

Opportunity to advocate TODAY!

Deadline Dec 6, 2019

That's a lot of ways to be an advocate! And here is one more you can do TODAY: Submit your migraine story to the Institute for Clinical and Economic Review (ICER). Two of’s partners, the Headache & Migraine Policy Forum (HMPF) and CHAMP, are leading the charge to help patients submit comments to ICER. For easy instructions on how to submit your comments, check out the Patient Guide on HMPF's website.

What is ICER? And why do I care?

ICER is currently assessing two new classes of migraine rescue medications called gepants and ditans. These new medicines could be vital acute therapies for people with migraine who can’t take or aren’t helped by triptans and/or DHE. So many of us have tried these old medicines and been failed by them. Hopefully, the new medicines will be available in early 2020.

Many insurance companies will use ICER’s assessment of gepants and ditans when determining if and how they will cover these new meds. That means that the ICER process will directly impact how much you will have to pay out of pocket if your doctor prescribes these to you.

The rising costs of medications are a hot topic right now and ICER needs to hear from patients about your need to be able to access new treatment options. You can submit your migraine story now until December 6, 2019.

ICER primarily uses an economic approach when evaluating medicines that doesn’t take into consideration the variation between patients. Their model also under-values diseases that have a disabling impact rather than a lethal one. Put these two together and you can see why an ICER review in migraine disease is an unfair process.

This is why it is vital you make sure they hear your personal story. ICER needs to understand how painful and disabling migraine disease is, how limited in effectiveness current treatments are, and how vast the need is for patients to be able to access new acute migraine medicines.

The migraine community deserves better and your story is vital in making this happen!

Did you know?

During ICER’s review of CGRP inhibitors last year (2018), people living with migraine sent in 210 comments to ICER. This was record-setting as ICER normally receives 3 to 5 patient comments when they do reviews in other diseases.

Let's keep showing how strong and powerful our community is!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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