How Much Should #CGRP Treatment Cost? Weigh In! #migraine #advocacy

We’ve all had those moments when — even armed with an insurance card and/or a prescription savings card — we’ve had to walk away from a pharmacy without our prescriptions or decline an infusion at our doctor’s office or clinic because the price for treatment was simply too high. Today, we have the opportunity to make sure the new CGRP treatments for migraine aren’t priced out of reach.

Right now, the Institute for Clinical and Economic Review is reviewing erenumab, the first CGRP submitted for FDA approval, to determine if it is cost-effective. Its review and final report will have an enormous impact on the day to day lives of many of us living with migraine.

“Insurance companies will use ICER’s final report (as well as other information) when determining if they will cover this medicine (and other medicines in this class that are expected to follow), what tier the medicine will be in on the plan’s formulary, and what types of prior authorization or step therapy will be required. All of this will heavily impact the access migraine patients have to this new class of medicines.” – The Headache and Migraine Policy Forum, Patient Guide for ICER Review of New Migraine Medicine

The ICER is asking for patient input to accompany the droves of information it will be  receiving from biotech companies, health economists, health plans, and medical providers. If you live with migraine, this is your chance to step in and explain what it is like to live with this disease every day and to shed a light on the disability experienced from migraine’s wide-range of symptoms. That information is vital to ensuring we all have affordable access to something that may significantly improve our quality of life.

Patient reports must be received by the ICER by November 30, 2017. This is a short deadline, but your input is crucial! Please consider submitting a response today. The link to the submission form is here: https://icer-review.org/patient-guide-to-open-input/.

If you aren’t sure what to say or how to say it, The Headache and Migraine Policy Forum has some tips and suggestions. They’re also hosting a free teleconference for patients on Tuesday, November 28 at 3:00pm ET, which will address the input period and how to make your voice heard. (Register here.)

It sometimes feel scary or overwhelming to define our experiences with chronic migraine, but now is the time to be heard. Please act now! United as one voice, we can make a difference.

Want to learn more about the CGRP drugs? Check out these posts on Migraine.com:

CGRP Drugs for Migraine: A Patient’s Experience

Questions for Your Doctor Regarding CGRP

CGRP Clinical Trial Update

Migraine and My New Love/Hate Relationship with Flying

Another_Airplane!_(4676723312)
Attribution: Photographs by xlibber

Like most ENFPs, I love to travel. The novelty of a new place (with its new sights, new people, new smells, and new adventures) never gets old. Yes, every big city is similar in many ways to every other big city (just as most small towns are similar in certain ways), but the differences between them – no matter how small – thrill me. I am happiest, in fact, when I have a trip scheduled for sometime in the next six months. As long as I know I am going somewhere soon, the normalcy of my everyday routine doesn’t get me down.

You can understand my disappointment, then, when I realized that I may soon have to change either the frequency at which I travel or the way in which I do it. Flying, it turns out, makes me dizzy, dizzy, dizzy. I’m talking days of dizziness. Weeks of constant vertigo. And it took me until this year to realize it.

Earlier this year, I flew to Philadelphia for a four-day trip. Though I was slightly dizzy the day we arrived, the vertigo quickly dissipated and I had a wonderful time at my conference and touring the city. Once I arrived home, however, I had the worst vertigo of my life, and it lasted for three weeks. 

Once it eased, I wrote it off as an anomaly. (As I am wont to do with most of my weird migraine symptoms.) Until, that is, I traveled to San Diego last week for another conference.

Once again, the flight there wasn’t too big of a problem. Though I almost passed out from vertigo at one point during the first day,  a two-hour lunch break in bed restored me for the rest of the trip. Arriving home, however, was an entirely different matter.

It’s been five days, and the room is still spinning. I ran into a couch on the way to the kitchen this morning, and I had to cancel a doctors appointment because I couldn’t trust myself to drive. I’ve been working primarily in bed instead of at my desk all week, and I haven’t been to the gym once.

I’m also about to leave on another trip, this time for five days to Florida.

I haven’t had two long-distance trips so close together since my vertigo worsened, and I’m truly wondering how it will go. Apparently, vertigo after flying isn’t uncommon for those of us with vestibular migraine and/or migraine associated vertigo, but I’d certainly never heard of it before. Now, all I can do is refill my Valium (which my neurologist gave me for vestibular symptoms) and hope for the best. Oh, and make a promise to myself to never again schedule back-to-back air travel, of course.

 

 

 

Vacation Lessons and Wellness Wednesday

PaloDurobackyardview

I recently spent a week with my husband doing little but looking at this view of the Palo Duro Canyon from our rented patio, stargazing from the outdoor hot tub, and relaxing. We unplugged completely. No news. No work. No social media. No other people.

It was heaven, and I didn’t have a severe migraine attack the entire time we were there.

The low-level pain, nausea, and vertigo of the ongoing disease are almost always present, but that’s where they stayed. At low levels, in the background. No major attacks. No big flares. It was the most peace I’ve had in months.

When we came back, I immediately had to do what we all have to do when we get back from vacation: I had to make up for being away. My first day back at work was a “regular” Monday. I clocked 13 hours, made my family three meals (plus snacks), cleaned here and there, served as partial entertainment for a four-year-old boy, and kept my ears tuned to the TV and social media for updates on Harvey, my city, our (flooding) surrounding areas, and our friends (many of whom were evacuating.)

By 1 p.m., my pain level and other symptoms had increased with a vengeance.

While I expected this, it still got me thinking. What can I do to reclaim a little of that Palo-Duro peace for myself during the regular week? How can I take care of myself, and my health, like I did over the course of those blessed and restful days?

I recently read a post from another writer talking about reclaiming Wellness Wednesday as a day for health. She said she was going to spend each Wednesday, taking the entire day off and nurturing her body and her mind. This idea intrigues me.

I’m not sure I’m capable of making that kind of commitment right now, as I have so many other commitments already. But I’d like to try. At the very least, it will remind me that I need to prioritize myself and my health just as much as I prioritize everything else. We women, especially those of us who are moms with chronic illness, tend to need that reminder.

What about you? Do you do anything on a regular basis to prioritize your well-being and your health? What is it? 

Migraine Presents Differently For Us All

The online world is full of articles, infographics, and stories from those of us with migraine about things we wish those without migraine knew and understood about the disease. There is much less such information written to others with migraine, but I think there should be.

The disease presents so differently for each of us, and we’re all at such different stages of living life with migraine. That’s why I recently wrote a piece for Migraine.com about what I wish others with migraine knew about my disease. Read more here: https://migraine.com/living-migraine/the-differences-among-us-what-i-wish-others-with-migraine-knew/.

What about you? What do you wish others with migraine knew about how the disease presents for you? I’d love to hear what you have to say.

The Meds of Medusa

This is a wonderful post from a friend of mine who also writes for Migraine.com. Like my friend, I have walked an arduous path with my migraine disease. Like she has, I have tried nearly everything ever recommended to me. Like my friend, my disease still cycles through periods of near hell. Those of us who have been walking with migraine for a long time do what we can to survive – and thrive – through those toughest times. Thank you for sharing your story, Lady Migraine! I applaud your bravery.

lady migraine 365

As my neck is still horribly stiff and painful in a way that feels connected to the 9 day old migraine that was finally obliterated on the second floor of Wood County Hospital Friday morning at 10 am, I am sitting here thinking of the amount of medication it took to truly break it. In a way, this isn’t the most accurate way to think of it – 1 headache, 29 doses of medicine. Many with chronic pain will never feel a “0” on the pain scale again in their lives, but I do, and often. My migraine attacks are still able to be identified as individual episodes. The seven days prior to my first ER visit Wednesday, I was able to keep the pain low enough most of the time with Imitrex or Fioricet and Zofran tablets and over the counter helpers like Dramamine and Benadryl and Sudafed to…

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Affording Prescriptions When You’re Chronically Ill

Living with chronic illness is expensive. Between the monthly premiums, regular office visits, lab work, imaging tests, supplement shots, and prescriptions, it’s no wonder healthcare takes up a large part of our household budget. My daughter and I both need a lot of care. It’s one of the reasons why I take some work that enables me to have “good” healthcare coverage even though it very often makes my symptoms worse. Imagine my irritation then when even my “good” coverage isn’t enough to afford the medications we need.

One symptom of chronic migraine is severe nausea, which often grows more intense whenever the migraine cycle worsens. Recently, I have been too nauseous to swallow my nausea medication. As anyone with chronic, severe nausea knows, this is a problem.

If I can’t swallow the pill, I can’t feel better. If I can’t feel better, I can’t eat, my work productivity suffers, and I find it difficult to contribute fully at home. Even more disturbing, research indicates that persistent nausea is associated with more frequent and more severe migraine attacks.

So, like any good patient, I talked to my doctor. She changed my prescription from a 4 mg Zofran tablet to a 4 mg Zofran disintegrating tablet. This sounded great. A nausea medication I could stick under my tongue that would simply dissolve and start working. No swallowing necessary. Problem solved.

Unfortunately, once I got to the pharmacy, I realized I wasn’t going to be able to solve my problem that easily. My regular generic ondansetron tablets cost around $10 for 30 pills with my insurance. My insurance, however, doesn’t cover the dissolving version at all. Without insurance, the cost was around $650!

I laughed politely and told the pharmacist I wouldn’t be filling the prescription. Then I called my doctor and had her change my prescription back to the regular tablets, which I then filled and have been unable to take for the past few months. Problem not solved (… but more on that to follow.)

The same thing happened recently with another medication. I take an opioid for the severe pain that comes with migraine, but I don’t take it every day. In fact, for many reasons, I won’t take it more than two or three times per week. I also don’t take it on days I experience a panic attack and take a Klonopin, which means I need an alternate pain medication to have on hand (even though the opioid works best and is amazingly inexpensive).

I won’t take acetaminophen and can’t tolerate ibuprofen, so my doctor gave me some samples of Cambia, an NSAID called diclofenac. Generally, NSAIDs aren’t strong enough to treat my migraine attacks unless they come in a rapid-release form, such as an injectable. In such forms, if I take them early enough, they can even serve as an abortive, helping to keep a pending attack from turning full-blown. Since triptans don’t work for me, this is always a major bonus.

Cambia is a dissolving NSAID, and the samples worked well. The medication worked rapidly enough to help abort some attacks and was strong enough to adequately manage moderate (though not severe) pain. All in all, it worked better than many things I’d tried, and so I asked for the prescription.

Once again, I went to the pharmacy with high hopes. Once again, I left empty-handed. The drug cost $620!

I know I’m not alone. All of us living with chronic illness experience this.

Many people living with chronic migraine fervently count and hoard the number of triptans they can afford each month. It’s usually far fewer than the number of migraine days they get, and so they pick and choose which attacks to treat, hoping they pick the most severe ones. This inevitably worsens their disease prognosis, often making the disease more difficult to treat long-term. People with other conditions, like fibromyalgia, go months without their Lyrica or have to discontinue it altogether when they unexpectedly lose their health coverage – even though it may have been one of the only drugs helping to maintain quality of life.

Those of us in the United States pay far higher prices for prescription medications than people almost anywhere else. This makes many prescribed medications out of reach for the majority of us. We want them. Our doctors want us to take them. Yet still we abandon the prescriptions at the pharmacy because we simply can’t afford them. This is absurd.

Not only does prescription abandonment reduce our individual quality of life and often worsen our disease prognosis, it also impacts the economy. Without the drugs that could make our quality of life better, we work slower, we take more sick days, and our economic contributions wither. There has to be a better option.

It turns out there is: Prescription savings cards, such as ScriptSave® WellRx.

The savings card is free to get, can be used for the entire family, and isn’t insurance. The online search engine is easy to use and compares prices with the card across multiple pharmacies in each location. There’s even a mobile app!

When I compared costs, the price for Cambia with the ScriptSave WellRx card was about $100 less expensive with the card than without. Not too great, but not bad either. That’s a full week of groceries! The cost savings with the ondansetron ODT, however, were more substantial. The price went from $650 to around $25!

You can bet I’m going back to my doctor and asking her to rewrite that prescription. This time, I’ll even get it filled. Maybe, I can finally get some relief!

(Disclaimer: I was compensated in return for my honest review of the ScriptSave WellRx savings card. All thoughts and opinions expressed herein are my own, based on my personal experiences, and are not influenced by the company and/or its affiliates in any way.)

Living Well with Migraine and The Unbroken Smile Guest Post

As part of last June’s Migraine and Headache Awareness campaign, I wrote a guest post for The Unbroken Smile on living well with one of the world’s top 10 disabling conditions. If you missed it, you can read it on their blog. While you’re there, make sure to look around! They’ve got some pretty great tips on living with chronic pain.