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Patient Input on CGRP Needed by May 8th

It’s time to rally the troops! Those who live with migraine disease have a chance to make an impact on the pricing and insurance coverage of the new CGRP inhibitor drugs. This is an advocacy effort that you can participate in from home and all you have to do is tell your story.

What does ICER do?

 
The Institute for Clinical and Economic Review (ICER) is assessing the new class of CGRP inhibitor medicines for migraine prevention. Insurance companies will use ICER’s final report (as well as other information) when determining if they will cover these medicines, what tier the medicines will be in on the plans’ formularies, and what types of prior authorization or step therapy will be required. Their final report can have a direct impact on YOUR access to these medications.

ICER does not have a migraine patient or a headache specialist on the voting panel that will be making their final decision, so they truly do not have a personal or specialist understanding of migraine disease. This is why it is vital that ICER hears from migraine patients!

What can you do?

ICER is accepting patient comments now through Tuesday, May 8, 2018. This is your chance to advocate and be heard by sharing your story.

As a community, it’s our time to raise our voices together to explain why migraine disease is “more than just a headache,” express that the currently available treatments are not effective or carry too many side effects and call upon ICER and insurance companies to make CGRP medications accessible to patients at a reasonable price.

Everyone’s story will be different, but it’s important that we all emphasize key points to show that we are a strong and united community. Below is guidance for what we encourage you to share in your submission and how to submit your letter.

Submission guidelines:

For your submission, these four points are important to cover.  (1-2 paragraphs per point):

  • Share your migraine journey (when did you first start experiencing migraine attacks, what does a migraine attack feel like to you, how often do you experience migraine attacks, etc.)
  • Describe the negative/disabling impact that migraine has in your life
  • Detail how existing migraine medicines fail to fully treat your migraine disease and have many unwanted side effects
  • Call on ICER to appropriately value your pain and disability, and support both episodic and chronic migraine patients in having access to these new CGRP inhibitor medicines

Submissions rules:

  • Your letter must be in the form of Word document attachment (no PDFs)
  • Your letter cannot exceed 5 pages
  • Your letter must be written with Times New Roman, 12-point font size

Your letter attachment must be emailed to publiccomments@icer-review.org by Tuesday, May 8, 2018.

Note that all letters submitted during the Public Comment phase will be posted publicly to the ICER website Only share information that you are comfortable being posted publicly online.

In a previous Public Comment period in the fall, almost 200 migraine patients shared their stories with ICER. They were amazed at this level of engagement from our community. Even if you submitted comments previously, please do so again. The voting panel will likely not have reviewed previous submissions. Our goal is for at least 250 patients to participate.

Many thanks to the Headache & Migraine Policy Forum (HMPF) and the Coalition For Headache And Migraine Patients (CHAMP) who are leading the engagement between ICER, migraine organizations and most importantly with patients.

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

Comments

  • Pixie93
    10 months ago

    My doctor wanted me to try one this because I get 3-4 migraines a week and a little less with botox. I cannot try it because I have a latex allergy. Why would this have latex? is it in the applicator?

  • GardensatNight
    12 months ago

    Do we have to put our full name or could we just use initials? I don’t mind sharing my info, I just get skeevy about posting stuff that’s searchable…

  • Katie M. Golden moderator author
    12 months ago

    Hi! You’re not the only one who has had this question. I just recently got an answer to this question:

    Through collaboration with the migraine patient advocacy community, ICER understands the stigma against migraine and they have agreed to accept patient submissions using pseudonyms from those who are concerned about using their real names. For any patient that decides to submit using a pseudonym, they need to disclose this by adding the following sentence to their submission:

    “Please note that I am submitting this public comment using a pseudonym because migraine is a highly stigmatized disease and I have legitimate concerns about connecting my name publicly with migraine.”
    ______________________________________________

    The ICER process for public comments involves producing a PDF report that lives on the ICER website with all the public comments received. Email addresses are NOT included. Your name (or alias if you choose to use one) will be listed.

    I hope this helps! And thank you so much for your interest!
    -Katie
    Migraine.com Team

  • Katie M. Golden moderator author
    12 months ago

    Hi Jemo- thanks for your question. This is for the US.
    -Katie
    Migraine.com Team Member

  • Jemo
    12 months ago

    Is the commenting restricted to Americans? Am concerned Canada will just follow ICER’s lead blindly so would like to submit.

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