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What a Symptom-Free Day Would Mean To Me

Last week, I flew to Chicago to give my testimony as a person with Chronic Migraine during a public meeting hosted by ICER. ICER stands for the Institute of Clinical and Economic Review, and they’re an independent group of physicians and professors who determine the cost-effectiveness of new treatments approved by the FDA. This meeting was all about the value of new acute migraine medications.

How do you determine if a new treatment is cost-effective? I’m so glad you asked. Let’s take a quick dive into the dirty world of QALYs.

QALY stands for quality-adjusted life-year. A QALY equal to 1 means a year of perfect health (while a QALY of 0 means you’re dead). Living with daily symptoms of Chronic Migraine would put your QALY near or slightly higher than 0.5.

ICER performs a complicated cost-benefit analysis of new treatments to determine the value for their cost. Using a model, they determine the incremental cost of a new treatment. For example, ICER determined new CGRP monoclonal antibodies to be worth 90,000-120,000 per quality-adjusted life-year for chronic Migraine and $150,000 per QALY for episodic Migraine.

Because the burden of Migraine is so substantial, these drugs are pretty valuable and are worth quite a bit. Manufacturers set the prices of these new acute migraine medications to be pretty expensive, so patients are already at a bit of a disadvantage going into this cost-benefit analysis.

The bottom line: a year of Migraine treatment with new drugs is expensive, but the potential benefits are substantial

In Chicago, ICER was evaluating the cost-effectiveness of three new acute migraine medications:

Dr. Steven Pearson, the president of ICER, concluded the meeting with these remarks:

“I urge manufacturers to remember that price is access.” Although patients had an uphill fight, the meeting was productive and ICER seemed to grasp the value of a safe, effective abortive medication.

“People with cluster headache, Migraine, and headache disorders deserve better treatment options,” said Katie M. Golden, a patient advocate on the policy panel at the meeting.

“There could be a synergistic or additive effect of triptans and new CGRP meds,” said Dr. Chistorpher Gottschalk, a headache specialist at Yale.  “Now, more than ever, I encourage clinicians to make optimal use of the tools already available for Migraine.”

How much is your ability to move without pain worth to you?

I was one of 5 patient advocates invited to tell my experience. I only got 5 minutes to make my major points, and the patient testimonies were the last item on the agenda before ICER voted on the cost-effectiveness of these drugs.

My full testimony is below. (Can you tell I was nervous?) For more information about ICER, see this article on Migraine Again and read the joint statement from two patient groups, CHAMP and HMPF.

 

“This is an exciting time in Headache Medicine, ” said Dr. Mathis, a physician with Allergan (the company that makes Ubrelvy). “For 30 years we were kind of spinning our wheels, and now we are finally gaining some traction.”

Comments? Are you excited to try these new acute migraine medications? Nervous?

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