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Background: The Institute for Clinical and Economic Review (ICER) is assessing a new migraine treatment option to determine if it is cost-effective. The medicine, erenumab, is the first CGRP submitted for FDA approval, and a regulatory decision is expected in May 2018.

Purpose: Insurance companies will use ICER’s final report (as well as other information) when determining if they will cover this medicine (and other medicines in this class that are expected to follow), what tier the medicine will be in on the plan’s formulary, and what types of prior authorization or step therapy will be required. All of this will heavily impact the access migraine patients have to this new class of medicines.  

ICER will be receiving lots of information from biotech companies, health economists, health plans, doctors, nurses and others as part of this effort. It is critically important that ICER also gets a good understanding of the migraine patient experience. You can help.

Call to Action: Patient input must be received by November 30, 2017. Yes, this is an incredibly short amount of time to take part in this process as a patient. You can access the submission form here.

This is your story to tell and a chance to be heard and advocate. 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. We need ICER to understand what it is like to live with migraine disease and how much need there is for better treatment options. Below are our suggestions of key points to cover in your submission to ICER.

Have Questions? A teleconference to educate patients and to answer your questions about the ICER Open Input period will be held on Tuesday, November 28 at 3:00pm ET. Click here to register for this free conference call.

Another resource for your questions is migraine patient advocate Katie Golden, who led the development of this Patient Guide. You can contact Katie through her blog, Golden Graine.

Patient Questions From ICER & Key Points to Cover

Below are the questions ICER is asking patients to complete. Key points we recommend including in your response are listed after each question. You do not need to answer every question. Questions 1, 2, 4, 5 and 7 are the most important. Please know that your responses will be public record, so only answer what you are comfortable sharing. Remember, you must submit your response before 5:00pm ET on Thursday, November 30, 2017.

On which ICER report are you providing input? Erenumab for Migraine

Organization (if applicable): Patient

1.     Briefly describe your disease experience, including your diagnosis, treatments you’ve used, etc. Be as specific as you feel comfortable with.

  • Share your journey with migraine, but assume that your audience has NO prior knowledge or personal experience with migraine disease. Detail is important.
  • List medications and treatments you are on and have tried in the past. Include supplements, surgeries, neurostimulators and complementary alternative methods.
  • Share the negative side-effects you’ve experienced from medications you’ve used.
  • State the need for better treatment options and access to them.

2.     How do the disease/condition and the available treatments affect your day-to-day life?

  • Let them know that migraine is more than “just a headache” – it’s a full-body experience.
  • How many migraine days per month do you experience? Do you have episodic or chronic migraine disease?
  • Describe the level and duration of pain that you experience during migraine attacks – if possible, compare attacks to other painful/medical experiences you’ve had (e.g. my migraine attacks are more painful than when I gave birth, etc.).
  • Share how migraine attacks impact your ability to function normally. 

3.     What impact does the disease have on family or caregivers?

  • Do you rely on others to help you or take on your responsibilities when you are having an attack?

4.     What else should ICER know about living with the disease or condition (e.g. impact on your ability to work, exercise, care for family, etc.)?

  • Share how disabling your disease is and what you can’t do now that you used to be able to do.
  • Have you had to alter your lifestyle due to the cost of treatment, inability to work, need for daily help or level of disability?
  • Do you work? Have you ever used FMLA, short-term disability or applied/received social security disability benefits for your migraine disease?

5.     What outcomes are most important to patients? For example, is the top priority quality of life, longer survival, or relief of a specific symptom?

  • What is most important to you – reducing your migraine frequency, lessening the severity or increasing your functional ability?
  • Share what migraine disease has taken away from your quality of life and how you would value a new and potentially better treatment.

6.     Are there new/emerging treatments that the patient community is anticipating? What are the benefits or disadvantages of the new treatments (e.g. more or fewer side effects, convenience, effectiveness, etc.)? Do you think the benefits will outweigh side effects or risks?

  • Convey what the downsides are of your current treatment regimen.
  • What is most important to you in a new treatment – more effectiveness, fewer side effects, etc.?

7.     Do patients have trouble getting insurance coverage for treatment? Do costs affect patients’ choice of treatment, or their ability to access treatment?

  • Share any access issues you’ve experienced. These include being denied medications prescribed by your doctor, being forced to change medications (non-medical switching), being required to try other medications before obtaining approval (step-therapy) or inability to afford needed medicines. 
  • Share how much you use the medical system to try and manage your migraine disease (multiple medicines you take, number of doctor appointments per year, number of ER visits, etc.)
  • Quantify the personal economic burden of migraine disease. How much do you pay per month or year for medications, insurance premiums and doctor visits?

8.     Please share any other information that you think is important for us to know from a patient perspective.

  • Have you lost jobs, lost a home or been in serious financial distress due to medical costs related to your migraine disease?
  • Do you have co-morbidities that also have to be managed?
  • Do you need special accommodations? Sunglasses, special diet, lighting, fragrance free zone?
  • If you are affiliated with any migraine, cluster or chronic pain organizations, list these here.

Questions 9 & 10 are intended for patient organizations to answer.