Worries About CGRP Drugs

May 17, 2018. That’s the FDA’s deadline to give its verdict on Aimovig (erenumab), the first of the CGRP monoclonal antibodies for migraine prevention. This is a big day for many of us with migraine, one we’ve been waiting for since the hype of the CGRP drugs exploded a few years ago.

Despite my excitement, I blanched when my friend J, who has chronic migraine, told me she has May 17 marked on her calendar. You see, although I’m excited, I’m also scared that not everyone will be able to try the drugs and of those who can try them, not everyone will get relief.

Not everyone will be able to afford CGRP drugs

We don’t yet know how much the medications will cost, but monoclonal antibodies for other conditions are some of the most expensive drugs on the market, according to an article by Alessandra Potenza that provides a comprehensive look at drug pricing. Estimates for the CGRP drug pricing varies, but Potenza wrote, “According to Eric Schmidt, an analyst at Cowen & Co. who covers biotech companies, they’re likely to be priced around $8,000 to $10,000 a year. Other experts estimated prices as high as $20,000 a year. Only Randy Schatzman, the CEO of Alder BioPharmaceuticals, was willing to discuss the price. Alder is closely following another class of antibodies used to lower cholesterol. Those antibodies cost $14,000 when they came out. ‘I suspect we might be in that ballpark,’ Schatzman says.”1

A Business Insider article says that Wall Street analysts project that the drugs will cost about $10,000 a year.2

These cost estimates are for the list price of the drugs. People should expect to pay less with insurance, though that’s not a guarantee.

Insurance may or may not adequately cover CGRP drugs

If you’ve tried to get Botox covered for migraine, you’ve probably had to jump through some hoops. For the CGRP monocolonal antibodies, expect that the hoops you have to jump through will also be on fire. Insurance companies may only cover the drugs for chronic migraine, not episodic migraine. Even if the drugs are covered, the amount insurance pays may be miniscule. My health insurance is great and, after reading through my policy, I expect they will only cover the drugs at 50%.

We don’t yet know the long-term effects of CGRP drugs

The side effects of the drugs have been minimal in studies. This is wonderful news. And yet the drugs haven’t been around long enough to know the long-term effects. CGRP has never been targeted before, so we don’t know what the outcomes could be over time. Completely unanticipated side effects may surface after years of use. We have no way of knowing if there are long-term side effects or what they will be until thousands of people have been on the medications for years.

Not everyone will get relief from CGRP drugs

With all the hype, it’s easy to get lulled into the belief that these drugs will help you—I certainly have been. Yet no treatment is a miracle solution. These drugs are remarkably effective in clinical trials, but no medication helps everyone. Going by study results, about half of people who try the drugs will get relief. Of those, some will get total relief; the majority will get partial relief. For many of us, even partial relief feels like a windfall. Still, if you’ve bought into the hype, it can be heartbreaking if the drugs only help a little bit or, possibly, not at all. Of all my concerns, this one is by far my biggest worry.

Why am I sharing my worries with you?

I’m fighting with myself about publishing this article. I don’t want to dash anyone’s hopes. Yet, I am literally losing sleep knowing that people who are counting on these drugs may face immense sorrow if they can’t afford the medications or if they try the drugs and don’t get relief. Pointing out the potential pitfalls of the drugs will anger some people. But I worry that the drawbacks have gotten lost amidst the hype and keeping silent about possible pitfalls feels irresponsible.

My hopes have been dashed by failed treatments so many times in the past. I hate knowing that some people with migraine will inevitably experience such pain with the new medications. Writing this article has helped temper my expectations for the drugs, so I’m sharing my thoughts in the hope that they might help others do the same.

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