Does it make any sense to discontinue a treatment that has reduced the frequency of a patient’s Migraines by 66%? Did you say, “No?” If so, you and I agree. Oddly enough, Aetna, my insurance company doesn’t see it that way.
Let me pause here and set the stage for you…
The time: November, 2012.
- I had 25 days of Migraines and headaches, 23 of them Migraine days.
- The problem:
- My work was suffering.
- My family life was suffering.
- was suffering!
- My Migraine specialist, Dr. David Watson suggested that we try Botox, for a few reasons:
- Due to issues that hospitalized me a couple of years ago, we can’t add any medication that might lower my blood pressure or increase the dosage of the medications I was already taking that lower my blood pressure.
- I had terrible side effects from topiramate (Topamax), and zonisamide (Zonegran), another medication in the same family, had failed to help.
- Botox had been working well for some of his other chronic Migraine patients.
- Dr. Watson administers first Botox treatment, and it reduces my Migraines by about 50%.
- Dr. Watson administers second Botox treatment, and the reduction in my Migraines increases to 66%.
Move forward to the present, December, 2013:
- My number of Migraine days remains around eight per month, a 66% decrease from November of 2012. That’s still too many Migraines, so Dr. Watson and I are considering possibilities to improve the effectiveness of my preventive regimen.
- _BUT _ a letter arrived from my Aetna, insurance company, dated December 11, 2013. It says that they’re not paying for my October, 2013, Botox treatment.
First of all, Botox treatments have to be approved by the insurance company in advance, and they did approve it. Secondly, what on earth are they thinking? The Botox has been working. It’s gotten me back to working and having some semblance of a life. Not only has it decreased the number of my Migraines, but the severity as well. It has also decreased my interictal photophobia (increased sensitivity to light between Migraine attacks).
Here’s part of the letter I received from Aetna:
“Aetna considers onabotulinumtoxinA (Botox) medically necessary for the following condition: Migraines - for prevention of chronic (more than 14 days per month with headaches lasting 4 hours a day or longer) migraine headaches in adults who have tried and failed trials of at least 3 classes migraine headache prophylaxis medications of at least 2 months (60 days) duration for each medication. Botulinum toxin is considered experimental and investigational for migraines that do not meet the above-listed criteria.”
In other words, Botox has worked so well that I no longer meet the criteria for chronic Migraine, so they’re deeming it to be “experimental and investigational” because it’s approved by the FDA only for chronic Migraine, and they won’t pay for it. It doesn’t matter to them that Botox is the only reason my Migraines aren’t currently chronic. Nope. Doesn’t matter at all. They have the information that Dr. Watson submitted before my first round of Botox, so they can’t claim not to be able to see what Botox has done for me. Although it’s not something I can prove, I suspect that it comes down to dollars, purely and simply. They’ve been paying approximately $1,700 every three months for my Botox treatments.
Here are some of my important points and issues:
- Since it took them so long to deny this claim, there’s little chance of getting through their appeal process before my next round of Botox, which is scheduled for January 15, 2014.
- It’s well know that if we discontinue an effective preventive treatment, then go back to it, it may not work. Thus, if I have to discontinue Botox because of Aetna’s short-sighted policies, it might not work again.
- They’ve also been messing with my triptan Migraine abortives, and with Botox, I was finally getting to the point where I had enough to get through a month.
- Axert is the triptan that works best for me, but Aetna no longer covers it. It really doesn’t matter to me which triptan I use as long as it works. Axert almost always works for me with one dose. With Botox reducing my number of Migraines to an average of eight a month, I would have been at the point of having enough Axert to be able to treat all of them. (And no, I wouldn’t have had the risk of medication overuse headache because I’m having only an average of two Migraine days per week.) BUT, since they won’t pay for Axert, I’m using zolmitriptan (Zomig), and with it, I often have to use two doses to treat one Migraine. Since they also _limit the number of doses per month _ to seven, if it takes two doses per Migraine, that only gives me enough to treat 3.5 Migraines per month.
- “Experimental and investigational?” Uh huh. Right. I still contend that it comes down to dollars because they’ve had no issue covering other medications for me that aren’t FDA approved for any Migraine - chronic or episodic.
- _My husband and I pay premiums for my health insurance. We can’t pay for the treatment that works for my Migraines on top of paying for insurance. _
So, what’s next?
I blogged this on my personal blog, _Putting Our Heads Together _, on December 21. When I Tweeted that blog post, I was sure to tag @Aetna on Twitter. Six minutes after my Tweet, @AetnaHelp Tweeted for me to follow them so they could send me a direct message. I did, and they sent me a direct message:
“We appreciate you following us! Please send your Name, DOB, Aetna ID, Twitter name & details to xxx. ^CD”
I sent them the requested information on December 22, but have yet to hear back from them.
Since there isn’t time to wait for a reply from them, I’m starting the appeal process. I don’t know what to do about my January 15 appointment if the appeal process can’t be completed by then. Delaying the Botox treatment will result in an increase in Migraines. We know from the scheduling of my other Botox treatments that my Migraines generally start increasing during the last two weeks before a treatment. I really don’t want to see how bad they would get if I can’t get this next treatment on time.
If I lose the appeal, the next step will be to hire an attorney and sue Aetna. Notice that I said _will _ be, not would be or could be. There isn’t a choice here. I simply can’t go back to nearly daily Migraines, especially when I know how much Botox helps me. If I’m forced to sue, I will hire the best attorney I can find, and I’ll tell him or her to go after everything they can get. This goes beyond not paying the $1,700 for the Botox. Aetna is costing time and considerable emotional distress. They’re causing me to live in fear of losing the treatment that’s working to keep my Migraines episodic instead of them being chronic, like they were just over a year ago. No, I don’t want to have to sue Aetna, but if they force me to do so, I’ll go all the way.
Please keep me in your thoughts during this difficult time. As events unfold, I’ll post updates to let you know how things are going and what’s happening.
Make a difference… _Donate to the 36 Million Migraine Campaign! _
© Teri Robert, 2013
Last updated January 2, 2014.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.