Migraine Community: Take Action to Defend Patient Access to Treatments

Migraine Community: Take Action to Defend Patient Access to Treatments

Patients living with migraine understand the importance of working with their care providers to find the right treatment.

“It’s not just a headache,” Terry Wilcox, executive director of Patients Rising, a non-profit that advocates on behalf of all patients, echoes the common refrain of the migraine community. “Every patient experiences migraine in a different way.”

Nearly 40 million Americans suffer from migraine, according to the National Headache Association. Yet, less than half of all migraine sufferers have received a proper diagnosis. Triggers for some migraine patients include disruptions in a sleep cycle, missing a meal, stress, or loud noises. Those triggers bring about intense and throbbing head pain, sensitivity to light, nausea, vomiting, dizziness, blurred vision, among other debilitating symptoms.

“There are different triggers and different symptoms for every patient. That’s why every patient needs a personalized treatment plan,” Wilcox adds. “You need the treatment that works best for you. Period.”

ICER Critical to Insurance Denial Process

Despite the clear benefits of tailoring treatments to the needs of every individual migraine patient, health  insurance companies frequently force migraine patients into one-size, fits-all policies that restrict care and block access to the treatments prescribed by doctors.

A critical component of the insurance denial process is performed by the Institute for Clinical and Economic Review.  This self-appointed cost appraiser works with the backing of insurance companies to reduce migraine patients to a simple number, or Quality-Adjusted Life Year.

With patients reduced to dollars and cents, ICER then helps insurance companies and pharmacy benefit managers decide which treatments maximize profits. ICER’s latest target is patients living with acute migraine.

ICER Acute Migraine: Open Input Period

This month, ICER has begun its process of evaluating the clinical effectiveness and value of three treatments for acute migraine: a 5-HT1f agonist lasmiditan and two oral CGRP receptor antagonists, rimegepant and ubrogepant.

“All three of these agents are under FDA review with an anticipated decision in the final quarter of 2019,” the unregulated cost appraiser states on its website. “The report will be reviewed during a public meeting of the Midwest Comparative Effectiveness Public Advisory Council (Midwest CEPAC) in January 2020.”

Ultimately, ICER’s Evidence Report will affect the lives of millions of patients, which is why advocates are taking action to bring the patient voice to the conversation.  Patients Rising NOW is launching a campaign to submit comments to ICER that defend the importance of patient access and patient choice.

“Together, the migraine community can send a powerful message to ICER,” says Patients Rising Now’s Terry Wilcox. “Migraine patients cannot be reduced to a math formula. They need the full range of treatment options available so that every patient can find the right treatment.”

Take Action: ICER Comment Deadline June 25, 2019

ICER has restricted patient input to a very limited window of time – just three weeks. Patients can submit comments to ICER until June 25, 2019.

  • Email: Patients, caregivers and advocates can email comments directly to publiccomments@icer-review.org. For questions, please contact Ellie Adair, Program Manager, at eadair@icer-review.org.
  • Open Input Questionnaire: Patients and advocacy organizations may submit their feedback on these topics through ICER’s patient open input questionnaire or as an email to publiccomments@icer-review.org.
  • Share Your Story: Patients living with migraines often experience unique challenges to accessing the right treatment. If you’re struggling to get the care that you need to manage your migraine pain, our patient advocates can help. Tell us your story.

Watch: It’s Not Just a Headache

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