New Treatment Experiences Part 3: Insurance and Cost Barriers
It's an exciting time in the migraine world! For the first time in decades, there are new treatment options for people living with migraine. While there can be feelings of hope for these new options, it's also important to acknowledge the barriers many in the migraine community may face in actually accessing these new drugs. On Migraine.com’s Facebook page, we reposted Holly Baddour’s piece, "CGRPs and Migraine: Navigating Wellness for the First Time in Years." Her article sparked so many reactions. In a separate Facebook post, we also asked the Migraine.com community if you had talked to your doctor about trying new migraine treatments.
What is part 3 about?
In the last part of this 3 part series, we're sharing comments from migraine community members who pointed out their challenges with receiving insurance coverage as well as other cost concerns for these new CGRP drugs. In part 1 and part 2, we shared comments from migraine community members who spoke out about how these new treatment options have been life-changing or unfortunately, have not had a positive effect yet.
Medications not covered by insurance
For some of you, you’re not able to say if you prefer the new CGRPs or not because your insurance won’t cover them. Right now, the price point is so high that they are out of reach for many. A few members raised a great point in that it may only be an issue of timing before insurance companies will cover them, making them more widely available.
“None of these medications are covered by my medical insurance.”
“My doctor brought it up. I checked and the insurance won't cover it. I’m retired and can’t afford the cost.”
“If your insurance doesn’t pay for this medicine you are out of luck. The price of this medicine is outrageous!”
“If you’re on Medicare, you are out of luck! Unless they changed their minds in the last three months! Unproven medicine was their reason! It took them years to approve Botox!”
Has the cost of CGRP treatment stopped you from trying these new medications?
Getting insurance approval is a nightmare
Some of you shared that the process of getting insurance approval was enough, well, to cause a migraine. Endless phone calls were necessary to make it happen. Luckily, a few of you had coaching from doctors to know that it often takes this much work—and to keep going.
“Jumping through the insurance hoops was a nightmare. Each time I called, usually we started over with me on hold between 1-7 hours going back and forth. Each specialty pharmacy would not take responsibility. Each one gave me a phone number to specifically call when I did it was automatically routed to someplace else. When asked what number I was told to call, sometimes I was given different answers. I was ready to quit! My neurologist said that is the game, try and stick with it.”
“Employment and insurance challenges- my current insurance comes with a $6,500 deductible. I would love to be in a position to try CGRP (brand name) and will as soon as my circumstances change.”
The cost after insurance is too high
Then, when you do have insurance approval, the cost can still be too high. Most of you are sharing that you are paying between $500 and $600 to have this medicine—which for many, still makes it too pricy. Some of you mentioned finding coupons online or asking the company directly for assistance—both of which dramatically bring the cost down, but other than that, the cost is pretty much a deal-breaker.
“With insurance, I’d be looking at a cost of at least $577 a month. Is a year of relief worth it if I can’t afford to continue?”
“I’ll be paying about $600 a month, but that’s less than I paid for Sumatriptan injections.”
“Affordability is a major issue. Since I am on a Medicare advantage plan, I’m not eligible for the assistance from the manufacturer.”
“Unfortunately my insurance sucks and wants to charge me $600 a pop. So we are sticking to Botox, which, by the way, I love too much to give up. My neurologist is working on clinical trials of a daily pill like a CGRP (brand name), we'll see what happens when the FDA approves it.”
What happens after financial assistance?
Several of you are trying these new CGRPs free of charge for a year, and then what comes next is unknown. This makes it complicated; if you do respond well to the treatment, you might not know for sure that you’ll be able to afford it once it stops being free.
“I am pretty hopeful, although, there’s always something in the back of my head reminding me that I only have a year free. Then back to trying something different because insurance won’t cover it.”
“I’m terrified that I won’t be able to afford this medication once the prescription card runs out after a year.”
More from the community
For a lot of members in the community, the cost of trying the CGRP drugs is the limiting factor. If insurance won’t cover a new treatment, unfortunately, for a lot of folks, it’s a no go. Hopefully, with time, insurance policies can change. One way to make an impact on this is by submitting your migraine story to ICER - more details can be found here.
We thank everyone who participated in this conversation. By opening up and talking about these new medicines, we are all helping the community make better-informed decisions moving forward.
When it comes to planning vacations or other events where travel is required, how much does migraine factor into your decision-making?