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The Cost of Wellness – Affording the CGRPs

Those who are experiencing wellness for the first time in years due to the new CGRP medications may be feeling as if they are living on borrowed time. This due to the fact that several of the drug companies responsible for these treatments have provided introductory offers to encourage patients to give their medications a spin. Emgality, Aimovig and Ajovy each offer some version of a 12-months free coupon. The question is, what happens after these offers expire and the medications become financially impractical for most patients?

CGRPs have been a life-changer for many

These drugs have been a life-changer for many. Some have gone from disabled to abled due to these medications. Others simply (and wondrously) have felt a slight but marked improvement in their pain patterns for the first time in years. Some report that they are experiencing moments of enjoying life again. Parents are showing up to their kids sporting events. People are actually following through on plans made with friends rather than constantly canceling out. People in the workforce might even start building back their sick and vacation banks at their jobs. On many fronts, in many cases, many migraineurs are knitting their lives back together and feeling a sense of joy, energy, and independence not experienced in recent memory.

So, when these free access programs run out, and the bills hit, the question follows: What are you willing to pay for your freedom; for your quality of life? If we are either uninsured, or underinsured, we may be expected to pay anywhere from $300 to $3000 a month to maintain the CGRP treatments. How many people can afford or sustain such a cost?

Is it fuel in the tank?

These treatments have the power to remind us of our capabilities; of what a full life feels like. Especially for those of us who have lived with chronic migraine for many years, perhaps forgetting what it was like to feel pain-free for even an hour. If we then have to return to the endless days of slogging through severe pain and related neurological symptoms that make our brains foggy and sleepy; will it help to have known that return to wellness if it was only a brief respite? Experiencing goodness and health and to be reminded that we are capable of such a thing is perhaps sustaining. And maybe just having lived it temporarily may serve to fuel us as we dive back into the challenges of life with chronic pain all over again. The break from pain may serve to provide some reserves in our tank so that we can continue on.

Or is it a cruel joke?

For others- having tasted the kool-aid of wellness just to have it whisked away – may find it just too cruel of a joke. I mean, really. How can there be a treatment that is so effective, for so many, that is put just out of reach in the name of profit. It’s a financial windfall for the greedy few in the drug industry who are playing games for money – but it’s a life changer for those living with a demanding complex neurological disease.

It truly is infuriating and unjust. I’m sure for some, they may have wished to have gone along not having known that there was something so effective if they wouldn’t have been able to afford it in the long run. It’s just too heartbreaking. Here’s a carrot, Mr. Rabbit. Right out of your reach. It’s a crazy-making thought. And migraine is infuriating enough as it is.

Tis better to have loved and lost than never to have loved at all

That saying, by Alfred Lord Tennyson, holds a lot of meaning in general and applies to those of us with migraine, too. Is it better to have experienced wellness and have it taken away than to have never known it was in reach in the first place? For some, the reprieve we experience from relentless severe pain is so tremendous- so priceless- that it is life-giving. Life-affirming. These treatments are so relatively new, it is logical that the landscape will shift (with the introduction of new competitors, for instance) to put them in financial reach for the masses soon. But in the meantime, perhaps it is better to have tasted wellness, even if for a brief window of time, than to never have known its existence.

A call to action

Perhaps knowing that effective treatments for migraine finally exist but are out of the financial reach of many will lead to a collective raising of voices to right this wrong, sooner than later. Calls can be made to insurers, drug manufacturers, and your state representative to voice your thoughts on this matter.

Have you tried the CGRPs? Are they working for you? Are you concerned about what the future will hold once the coupons run out or are you already running into problems with affording the treatments?

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.

Comments

  • MrsMiMoo
    3 weeks ago

    Thank you for your support! This site has been really helpful and inspiring and I have used it with my Neuro nurse and consultant.

  • Holly Harding Baddour moderator author
    2 weeks ago

    So glad to hear that- we are here for you anytime. I’ve had botox injections for 16 years now- and I hope you’ll feel something before three months. Please do let us know how you’re doing.

    Paying out of pocket for the CGRPs is asking so much (literally). I would encourage you to follow up to see what will happen with Emgality and Ajovy as – if those end up getting funded- they would certainly be worth trying. It seems random that one type (Aimovig, Ajovy or Emgality) works great for some people, and not at all for others and vice versa. I’m not sure you’d need to fund a whole year to find out which one is best for you. I knew after just two months that Aimovig, for instance, was not a good fit for me. It only took one injection of Emgality to experience a much better response. Hopefully while you’re experimenting to find the best one for you, there will be work happening to get these therapies funded in England! Thinking of you and again- please do stay in touch.

  • MrsMiMoo
    3 weeks ago

    Over here in England the health authority called NICE (not nice) have decided not to fund Aimovig after making a mess of the clinical tests. Scotland get Aimovig, Europe gets Aimovig, England does not. I will have to fund it myself. I am not a rich person and it will cost the equivalent of US 9-10k a year if I want to try it. It is 7nclear at this point if Ajovy or Emgality are available yet.

    I am sick of Topamax making me sick although it reduces me from 30 migraine events a month to 10. We don’t have insurance here really and as migraine is a pre existing condition I’d not be getting any treatment for it!

  • Holly Harding Baddour moderator author
    3 weeks ago

    Hi @mrsmimoo– So unfortunate that Aimovig has been deemed uncoverable by the “authorities” in England.

    Many people have reported side effects related to Topamax- brain fog, aphasia, hair and weight loss, to name a few. For some people, some of these side effects quiet after months on the medication. Have you been taking it for long?

    I think many of us hope that the new CGRP treatments will become more widely available and accessible as soon as possible – and with time, they likely will- the question is how quickly that will occur. Certainly hard to be patient with so much at stake.

    Hope you’ll stay in touch as to how things develop in England. Thinking of you.

  • MrsMiMoo
    3 weeks ago

    thank you so much. I have just had my first Botox treatment – they say it won’t help until I have had two or three.I am praying it will work; we are doing the maths to see if we can afford Aimovig ourselves. But as I sad above, it’s very expensive without insurance or any health care provision. This condition affects so many of us, and it’s debilitating. Time for change.

  • GardensatNight
    2 months ago

    I have been on botox/aimovig (plus other preventatives) to control chronic intractable migraine for just over a year. What a change it’s been! Before starting aimovig, my migraines went on for months. I can’t take triptans, and because of rebound headache, taking painkillers seems to only extend/worsen my migraines. We spend a lot of time in the infusion center when a migraine strikes. Except since aimovig, I’ve been having so many more good days. Yes, there are still migraines. But to have all those lovely hours, those functional days… I can’t even describe what a gift it’s been this past year to be doing just a little bit better. And it’s cruel that because of greedy insurance they want me to go back to lying curled in bed every day again.

  • Holly Harding Baddour moderator author
    2 months ago

    Hi @usedtogarden

    So grateful to you for chiming in. It’s wonderful to hear about the dramatic improvement you have experienced due to the CGRP treatment (specifically Aimovig, in your case). I’m with you that once you’ve tasted the sweetness of wellness that the idea of going back to life in bed, is just too hard to swallow. I think we’ve got to find a way to combine and raise our voices to be heard on accessing these treatments that have been life changers for so many of us. There is power in numbers – and there seem to be many of us in this same situation. Let’s stay in touch.

  • Holly Harding Baddour moderator author
    2 months ago

    @usedtogarden– I’m so glad you chimed in on this even though it’s deeply troubling to hear what’s happening. I’m gathering the names of some advocates who are exploring the question of what happens after the CGRP coupon programs expire and will report back when I have something concrete to offer.

    I had not heard of being basically punished by an insurer for taking both Botox and the CGRP – and then to have both removed after proven efficacy/improvement. How frustrating!

    Please continue to stay in touch and I’ll do the same.

  • GardensatNight
    2 months ago

    My situation is, unfortunately turning out to be even worse than we predicted. We were expecting when the Bridge program ran out with Aimovig that we would have to self-pay in cash in order to keep me on the drug. Or else go off it. What we weren’t expecting was for my insurance to also deny Botox coverage (which they’ve covered for years) on the basis that I have Aimovig in my system. Yes, I understand it’s experimental. But I’ve been on it for over a year and using Botox/Aimovig together is the first thing since I turned chronic intractable back in 2014 that has actually WORKED and kept me out of the ER, and not in the infusion center 4-5 times a month.

    It’s just so cruel that we would be willing to self-pay to figure out a way to keep me on one of the therapies (Aimovig or Botox) if insurance would keep paying for the other (they’ve NEVER paid for Aimovig), but no, they just want me to go back to intractable migraines that go on for months and being hooked to an IV of DHE with my trusty barf bag. Not. Cool.

  • MeredithM
    2 months ago

    Do I think there is a financial incentive to dangling a treatment that could actually make a difference in people’s quality of life??? I experience firsthand the financial incentive being an obvious collaboration at every level of the “medical” industry on a regular, ongoing basis. Since insurance started covering “botox for chronic migraine” I have been getting the 31 injections like clockwork every 90 days for a few years now. It has been the only thing to make a difference in my quality of life with minimal side effects. Plz note this is not an endorsement, just explaining my experience. I tried it for chronic migraines when it was initially approved but couldn’t afford it out of pocket (around 2006), so this has been a dream come true. Anyway, I also have to go in for follow-ups in between treatments or my neuro will not authorize the treatment, even though my entire treatment regimen has not changed and it has all been with her. So that’s an appt every 45 days. When the first CGRP arrived I was told it was promising but monthly (so big deal at this point, right?), that it “may” be covered by insurance but not for sure, that attempting coverage for CGRP could risk losing my other treatment coverage altogether (a pretty penny), and kicker…we don’t know if it would even work! So I have stuck with what has been working best so far. I sometimes miss my follow-ups, ironically usually due to a migraine, and have to rationalize with the dr to get out of the missed appt fee. So, with all these mandatory appointments, even when my migraines are less, I am still overwhelmed with constant Dr. visits and stuck in the loop of pain, taking off work=more pain and a pain in the a** to get something that actually helps with my pain. Doesn’t sound like anything out of the ordinary to me these days!

  • Holly Harding Baddour moderator author
    2 months ago

    @meredithmarcus– oh my, you raise SO many good and important points! Managing migraine can end up feeling like a full time job. The cost is significant- both financially and in terms of the commitment of time. I’m glad you raised Botox as an example – because it initially was experimental and very expensive and difficult to get covered by insurance for migraine. I was one of the very first patients to try it for migraine (back in 2002) and it’s come such a long way to the point that there is now a savings program that reimburses nearly all costs related to the treatment.

    However, now the interplay between Botox and the CGRP treatment is in question. There actually have not been studies to show the two treatments are contraindicated, indeed, there is some data that shows the treatments use the same mechanism/focus on the same thing – but nothing shows they aren’t good to use together. Still, to be cautious, the current guideline is that the two treatments shouldn’t be used in concert. Many of us have learned the hard way that being taken off Botox is a bad idea and that indeed it does help to take both of these treatments together.

    To me, this is a reminder of how early we are in the life of this treatment- this is like the 2002 of Botox- when it was difficult to find a doctor who even knew how to administer the drug for migraine. Now, 18 years later, it’s one of the primary modes of accepted treatment for chronic migraine.

    So, yes- nothing really new here in terms of these dynamics/challenges. But hopefully the process of getting the CGRPs covered won’t take quite as long as it did for Botox. And hopefully, our treatment plans will eventually be streamlined so that this part of our lives won’t be so time-consuming!

  • lindaann
    2 months ago

    I feel like this is going to be a huge issue. I spoke to the pharmacy providing my “free” Aimovig and they said that insurance companies are not going to cover it and it will be 600 a shot! I have had a reduction of 50% with this drug but apparently our lives don’t matter! I think we should advocate!!!!

  • Holly Harding Baddour moderator author
    2 months ago

    @lindaann– I agree that advocating would be in order on this front. I’m going to ask around and see what this would look like. I hope you’ll do the same and let’s check back and see how we can hopefully move things forward.

    Thanks for reaching out! – Holly (migraine.com team).

  • MrsMiMoo
    3 weeks ago

    As more of these shots come on the market I guess prices should go down, but if a cartel sets up you will have to fight for prices to be reasonable.

  • onehsancare
    2 months ago

    I’m on Aimovig, through the patient assistance plan, which is almost at the end. My insurance is saying that they won’t cover it in the future because I am also on Botox and there is no evidence that the two are compatible. (Beyond my terrific response, I guess!)

    So I wrote to both Amgen and the lead researcher on Aimovig telling them that I am by no means the only patient with this dilemma, and asking why there is no ongoing clinical trial about the efficacy and safety about the concomitant use of Aimovig and onabotulinumtoxinA, to allow patients to get approval with third-party payers. I got no response from the researcher and Amgen said that it was “aware of the challenge and is actively considering approaches to generating new information that may be beneficial to securing access for Aimovig patients. [My] suggestion and rationale for the requested study is appreciated and has been relayed to the appropriate Amgen staff.”

    Given how long it takes to get such a study up and going, let alone to the results stage, I’ll be on Medicare before anything happens.

    I wonder if switching to Emgality for a free year, and then trying Ajovy for a free year would solve the problem, or if my insurance would stop covering Botox . . . .

  • Holly Harding Baddour moderator author
    2 months ago

    Good for you for trying to get the wheels moving on the clinical study re: botox and the CGRPs. You are NOT alone in finding success in both. I’m with you on that, in fact.

    I wonder if you’d be willing to write an outline of what you did (providing the addresses you used to send your letters) in our stories page here:https://migraine.com/stories/ under a heading like, “Want to Join Me in Trying to Make History?” Or “Help Me Get Botox Covered Along with the CGRPs, Here’s How!”

    Migraine.com is a huge and thriving community of members just like us who are up against these same issues and I would hope that with some guidance about what to do, others might follow suit and with more letters received to places like Amgen, or the makers of Emgality and Ajovy, perhaps change might happen.

    I think your idea of floating from one CGRP to another to make the most of their free-year coupons is also potentially brilliant. The only snafu might be that some people have a good response to one drug and a not so good response to the other. But it’s certainly worth a try.

    Please let us know how things continue for you and thanks for being a trailblazer for the rest of us. I’ll join you in writing a letter to the higher ups.

  • DinaMay
    2 months ago

    I know what you mean about our medical system being infuriating and the cruel joke of knowing something that helps but it’s out of reach. I’m now using Emgality with some real improvement. But in December I become eligible for Medicare and that will presumably be the end of my Emgality. For now. It’ll be a bummer to go back to spending days at a time in bed.
    But I remember years ago when Imitrex first came out. It was fantastic to have something that eased the pain. But the injection made me feel worse before it made things better. Later I could get pills instead of the infection. At first that was a mixed blessing because it was easier on my system but tough on the wallet — $35 per pill when that $35 was my weekly grocery bill. Time passed and an affordable generic came out. But the med didn’t work for me anymore. On to the next med to try!
    I will miss Emgality for sure. But for now I’m making good memories that will help tide me over till a generic is available. Or the next breakthrough in treatment. Or a change in our medical system. We can always hope

  • Holly Harding Baddour moderator author
    2 months ago

    @dinamay– I’m SO glad to hear from you on this. It always helps to know we’re not alone- even when it’s on the challenging stuff. It sounds like there are many of us out there who are 1) having success with emgality; 2) coming up upon, or are already facing challenges with how we will have that treatment covered once the coupon for that treatment runs out; and 3) dealing with challenges over CGRP coverage related to Medicare.

    It really is a nightmare to face the reality that something that is working for us, finally, providing some semblance of a quality of life, will be whisked away due to big pharma dynamics. Awful and unfair.

    You are right to bring up the comparison with the triptans. Imitrex – and the efficacy it provided did not end up being the same for every patient as the generics that followed. This, to me, is the same as the fact that not all CGRPs are the same. So, while Emgality is working for some of us, will the generic that it will end up being based upon be as effective? Unfortunate that this is something we have to worry over.

    Again, perhaps it helps to know there are others in the same boat. After all, there is power in numbers and we will be able to raise our voices if/when needed to make a change. There are so many of us out there with migraine, desperate to reclaim our lives.

    And I’m with you, any good moment that Emgality affords is one that I’m embracing fully because I’m not sure how long I’ll have access to it.

    Glad you’re a part of our community. Please continue to stay in touch.

  • Kate
    2 months ago

    I avoid meds/treatments not available through my insurance, as for me, worst case scenario would be knowing something significantly helps (due to a sample, coupon, etc), but I couldn’t afford it.

    Its been a huge pain trying to get my doctor’s office to do a Prior Authorization for CGRPs for me as they just want to sign patients up for the free programs and such…it must be easier for them. So, I’ve only tried Aimovig so far, without relief. So happy that so many folks are finding relief though.

  • Holly Harding Baddour moderator author
    2 months ago

    Hi Kate,
    I appreciate hearing your hesitancy about proceeding with these treatments given the challenge with having them covered. I know you are not alone. Interesting point about the difficulty of getting pre-auths due to the coupons being an easier route for the doctor’s offices.

    With no relief from Aimovig, do you plan to try the other CGRPs if you can get prior auths? I personally also had no success with Aimovig but have with Emgality.

    Thanks again for chiming in. Please stay in touch.

  • joyrobbedbypain
    2 months ago

    I have tried all three via samples from my neurologist. Aimovig and Enjovy did not help. Emgality did. I could not use the manufacturer discount option because I am insured by Medicare. My cost for Emgality was $622, which I cannot afford since I am on disability due to chronic migraines. The samples have also stopped from the manufacturer of Emgality to my neurologist. I went on line to see if there was a patient assistance program to help with the cost. One does not exist. It is VERY frustrating to have found a product that prevented my migraines for three months and then have it out of reach. I don’t know how long Eli Lily’s (manufacturer of Emgality) patent will last. Isn’t it typically one year? I can pray that it is only one year and that there will be a generic CGRP equal to Emgality, but more affordable.

  • Peggy Artman moderator
    2 months ago

    Kate,
    Thanks for sharing your journey with us. You are not alone in your concerns about availability of new therapies. I know the PA process can get very frustrating, especially at certain clinics. Just stay persistent in this process. Unfortunately, we have to advocate for ourselves sometimes.
    Peggy (Migraine.com Team)

  • joyrobbedbypain
    2 months ago

    Holly,

    You are correct that I am covered by Part D in Medicare. It isn’t logical to me that the savings card for Emgality doesn’t work if you are insured through a government sponsored insurance. Individuals that I know that have Medicare do not have the income to make specialized medications, like Emgality, affordable. I appreciate the support, articles and conversation found here. I will keep post updates when/if I learn anything new.

  • Holly Harding Baddour moderator author
    2 months ago

    @joyrobbedbypain
    I’m grateful you chimed in with this information. Many community members have been asking about whether or not Emgality is covered by Medicare. I’m assuming you’re covered by Part D? I recently asked my pharmacist about this and he echoed your information saying that Medicare is not a great option when it comes to the CGRPs (or really migraine treatments of any sort in general, unfortunately). Such a rough reality.

    I agree completely regarding the thought and hope that with time, these treatments will become more widely accessible to the masses. I’m not sure what that timing looks like (in relation to patent releases and so forth) but I certainly join you in hoping it will be sooner than later. It really is awful to learn there is a treatment that finally provides relief just to find it is out of reach financially. As I said in the article, a cruel joke.

    That said, wonderful that even one of the CGRPs worked for you. For many, none are working at all. So, it’s great that you found something that had a significant impact. Now comes the work of getting it covered! Please stay in touch as to your journey and I’ll do the same if I learn anything new on this front.

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