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.
Our 10th annual Migraine In America survey is now open. Take the survey to help us paint a clear picture that while an attack might be over, the disease never really ends.
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?
Have you taken our Migraine In America Survey yet?