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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.

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.

  1. Potenza, A. (2016, May 24). New migraine drugs promise relief - but at a steep price. Retrieved April 25, 2018, from https://www.theverge.com/2016/5/24/11712554/migraine-drug-treatment-headache-cost-pharmaceutical-health-insurance
  2. Business Insider. (2018, April 24). A massive pharmaceutical middleman is taking aim at the price of a new group of migraine drugs. Retrieved April 25, 2018, from http://www.businessinsider.com/r-express-scripts-targets-new-migraine-drugs-to-change-us-pricing-dynamic-2018-4

Comments

  • Jlevy
    1 week ago

    I took my first 70mg dose of Amovig in August 2018. A week later, I experienced full relief from chronic, daily migraine. I was elated. After six months on the drug, it began losing its effectiveness two weeks after I took it. My neurologist put me on the higher dose (140 mg.). At this dose, I am able to get through most of the month before the migraine returns, but I’m concerned the effectiveness is diminishing. For me, the main side effects of Amovig, which is well documented, has been severe constipation, Other than that, the drug has given me my life back.

  • R3laxMyH3ad
    7 months ago

    I have been on SS Disability since 5/2011. Put on by my employer-I worked for a large Pharma company for 23years no less!
    Struggling with many medical issues and medications. Migraine ruling above all. I was informed “it would be best for everyone” if I went on LTD, then given a contact paid by my company to pursue SS Disability. Yes, I am now disabled … and discouraged. The govt rules pharmaceuticals and also the price of needed medications. My biggest complaint is that I cannot afford my needed medications that the government has declared are needed!! Because I worked for over 30 years contributing to Social Security, I am also “above” the income level for govt medical extra help!! How is this ok??!!! How can I ever control all my medical issues with the necessary doctor, specialist, ER, procedure and surgical needs-on top of my medications- when the govt and pharmaceutical companies will not help support these disabilities- including chronic Migraine!!
    My entire monthly disability check goes to medical insurance, copays, medications, laboratory and diagnostic testing to try and find the “right” results! If not for some family support, I’d be living as homeless.

  • kimmersutphin
    12 months ago

    I went to the doctor Friday and my Botox injections all 31 shots. I also got a prescription for the new medication he filled out the paperwork for the free 2 month offer. He said he has patients who have been on this new medication since day one he has not had anyone call to complain and that he has patients who would be calling if they had problems. He also gave me prescriptions for all my other medications that I am taking and did not tell me not to take those if I’m having a migraine. I said I hope I get this new medicine take a shot and never have another migraine and he said that he didn’t think it works like that but that he believes it will decrease the number of migraines I have a month and I will be thankful for that.

    I cannot tell anybody else to take or not take their medication only your doctor can do that I cannot tell you whether your insurance will pay for this medication only what my insurance online shows that it will pay

    I pray that this new medication will help and significantly have an impact on my migraines but I just don’t know each of us respond to our meds differently then our fellow migraine sufferers

  • R3laxMyH3ad
    7 months ago

    Good luck. I’ve tried Botox for 2 years without success and am now given the new monthly injection I have tried last month. Another $$!
    Still needing my “breakthrough” meds. I hope this works for you – and can’t wish a migraine on anyone!

  • Desdemica
    1 year ago

    This is a great article, and all the points are valid. My neurologist is very excited about this drug but understood that initially it would probably be too expensive for most of his chronic migraine patients like me. However, he also was not concerned about possible long-term side effects, but I am. He felt that although it’s unusual for clinical studies to show such low levels of side effects, the combined number of people studied supported the validity of the findings. I’m not quite so trusting. I’ve cleaned and analyze data for clinical trials (something the majority of medical professionals have never done, unless they are researchers themselves) and I know that it’s entirely possible that this isn’t the whole story. In general, I like to stick to drugs that have been on the market for a decade or more. Having said that, although I have chronic migraine, I am very lucky in that my migraines are constant but not (usually) overwhelmingly disabling. If I were in the position of many of the people in this group, who are suffering so consistently and in such horrible ways, I would doubtlessly weigh my pros and cons differently and be willing to try this drug sooner.

  • kimmersutphin
    1 year ago

    I have paperwork to get my nurologist this Friday to see if he will submit. Tricare says it will be 54 dollars a script. So I will see and hope if I get it that it works. Tired of 31 shots of botox every 3 months that really doesn’t help and giving myself shots every couple days.

  • Josiedog
    1 year ago

    Thank you for offering these cautionary reminders that any new treatment may be a problem for some. Many of us don’t fit the mold and don’t respond to the newest treatments. I know that I got worse, for example, with botox and the sTMS machine. So we need to go into any new treatment protocol with optimism but with our eyes wide open, and an awareness that each of us are different, that we may not respond as planned, and that the side effects may not be worth it.

  • grammayumyum
    1 year ago

    I’m concerned over all they hype and excitement. Last month, I saw a new neuro at the university hospital where I have received Botox treatment for a few years. My appointment was for an unrelated condition. The doctor began the appointment pushing the new migraine med, had the nurse fill out paperwork for me to sign on the spot, so they could get me meds at the earliest possible point. I asked if I could take the paperwork (several pages) home to read it first. The doctor continued to pressure me, telling me that would delay my treatment.

    I did not sign the paperwork on the spot. I took it home to read. There are warnings for people who are allergic to latex. Latex is one of my top allergens and is listed in my records at the university hospital. Even with that information readily available, this doctor pressured me to sign paperwork for a medication that has the potential of sending me into anaphylaxis.

    What was the motivation for the doctor’s pressure? Does the hospital want the recognition of having the greatest number of patients on the new treatment? Do they want to decrease the staff and time involved in providing Botox treatment? Is big pharma giving a kickback for certain numbers of patients who take the new treatment?

    Needless to say, this concerns me!

  • Msmmain
    1 year ago

    These sound like you read my mind & wrote down all of my fears about this new treatment! I’m so afraid to get my hopes up anymore that I’m almost not willing to try any new treatments. I feel like if I get too high of expectations and they’re crushed (over & over) that the depression in constantly battling will grab the upper hand and drag me into a dark place all over again. And yet I want so badly to be free from my migraines prison that I’m willing to jump through any hoops thrown my way (even if they’re on fire and I’m blindfolded!).
    The cost is my other biggest concern anf I feel like its getting brushed aside by all the news coverage. Even “just” $14,000/year is more than $1000/month and for those of us with chronic migraines who cant work – thats not remotely possible. I feel like they hype for this treatment has boomed into too big of a thing for what it actually will end up being. 🙁
    sorry for the emotional explosion, I’ve been feeling overwhelmed by my concerns about this new treatment and this is the first time I’ve seen someone who feels the same.

  • jlangham
    1 year ago

    Amen!!! Both the article and your post are both so me. Thanks for sharing!!

  • Crc1289
    1 year ago

    Its definitley important to be realistic about any new trestments. I applaud you foe writing this as i myself also needed to be reminded that nothing is a sure thing. I am cautiously optomistic. Its scary to feel even a little bit of hope to just to have it crushed yet again. Fingers crossed that it will be covered eventually and that it will work. Remembering also that there are more on the horizon.

  • blancj8
    1 year ago

    This is great information Kerrie. I think its important to point out that half may see no improvement as many people might give up on them before trying if ‘all three’ people that know didn’t get any benefit.
    Also to anyone who wants to call Kerrie out for stating facts; Bring your facts to the table first.

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