Devices for Migraine Treatment - Attention Device Manufacturers

AttentionPeople with Migraine disease and other headache disorders are constantly searching for new and more effective treatments to add to our tool box. Recent years have seen more devices developed and introduced to the market. One device is even FDA approved for use by adolescents age 12 and above. When I talk to fellow Migraine patients, many tell me their doctors have never mentioned any of these devices. When talking with people who work in developing these devices, some express frustration that so many doctors prescribe medications only and don't recommend devices.

Personally, I've tried some of these devices, both for preventive and acute Migraine treatment. One of them has proven to be the best Migraine treatment I've ever had, both for prevention and for aborting Migraine attacks. Here are some of the things I love about it:

  • It doesn't have the list of potential side effects that most medications carry.
  • It's considered safe for people like me who are heart attack survivors.
  • It can be used as often as needed for acute treatment without the risk of medication overuse headache.
  • Using one treatment for both preventive and acute use is wonderfully convenient.

Unfortunately, I'm not going to be able to continue to use that device. 

I hit Medicare age in June of 2019. Before that, my insurance reimbursed me 60% of the cost of the device rental. Now, I have NO coverage to help pay for the device because it's not covered by Medicare. When I contacted Medicare, they told me that they won't consider it because the manufacturer has never submitted information to them to request their approval. When I tried to get it covered by my Medicare supplement plan, they "reminded" me that they're a supplement plan; they don't replace Medicare.

The Medicare issue is what I want to bring to everyone's attention, especially the attention of the companies that develop and manufacture these devices. Not working toward Medicare coverage of your devices is a mistake, a BIG mistake, for multiple reasons:

  • You're missing out on some of the Migraine patients who may need your devices most - patients who have had to turn to Social Security disability benefits. Whenever there's news of a new device that could potentially help there patients, their response is one of disappointment and sadness rather than excitement and hope. That's because they know it's unlikely that they'll even be able to try them.
  • Commercial insurance companies often take their cues on what to cover based on what Medicare does and does not cover.
  • It's frustrating to doctors and patients alike when they can't get coverage for a promising new treatment.
  • All of the above make it less likely that doctors will jump on the bandwagon OR that patients in my situation will recommend a device to others, even if it has been effective for them.

I recently got one of the disposable devices for acute Migraine treatment. It's one of those you use for a certain number of sessions, then throw it away and get a new one. It has worked well so far. Will I be able to continue to use it? I'm not sure. It's new, and I have no idea if Medicare is going to cover it. 

The situation I find myself in as this:

  • I love the device I've been using for both prevention and acute treatment. That said, I need to use treatments that are covered by Medicare or my Medicare Part D prescription drug plan.
  • My Migraine frequency has increased from an average of one Migraine attack per month to six.
  • If the frequency keeps increasing, I'm going to have to go back to finding effective preventive medication.
  • As someone who has had a heart attack, I really shouldn't use triptans, BUT I need to abort my attacks quickly because they send my blood pressure into stroke range, and it stays there through the Migraine attack. Thus, I feel a dose of triptan is less risky than the spiked blood pressure.
  • I'm loving the new acute device. Whether I'll be able to continue to use it depends on whether it gets covered by Medicare.

Admittedly, as a Migraine patient, I'm angry about this situation. As a patient advocate, I'm angry and frustrated.

To my fellow patients: I hate this situation we're in. That's why I'm speaking out. If you're in a similar situation, please feel free to leave a comment below and share with us.

To the device manufacturers: I'm very disappointed. There's really no room to complain that doctors aren't getting into the habit of recommending devices until and unless we get to a point where they're covered by Medicare.

Live well,


Migraine, Other Health Issues, and Insurance

Mime-Pleading-150In the late 90's, my Migraines became chronic, leaving me with a debilitating Migraine five or six days a week. Those Migraines cost me my job and left me with pretty much no life. When I learned about true Migraine specialists and began treating with one, things started to turn around. Now, 15 years later, Migraines strike one or two days a week. Because of a great treatment regimen, a Migraine seldom takes me down for more than an hour or two.

Taking daily medications is something I'm never going to like, but those medications make it possible for me to function and to have a pretty good quality of life. There are other conditions for which I need medications too - diabetes, heart disease, glaucoma, and a couple of others. So I count on my medications and being able to get them when I need them.

My husband worked for DuPont for 30+ years. One of the reasons he stayed with DuPont during the last years of his career was for the benefits that would continue through his retirement, including medical and prescription insurance. Our insurance isn't "free" for us. We pay significant premiums to keep the insurance, but if it works the way it should, it's well worth it.

Therein lies the problem. My prescription drug coverage, which is through Express Scripts is so messed up right now that I can't order anything through their mail order service, and if I were to take a new prescription to a local pharmacy, I'm not sure it would be covered.

We first discovered there was a problem when Dr. Watson's (my Migraine specialist) nurse called Express Scripts for a coverage review to get Axert covered. She called me to tell me that Express Scripts said my coverage had ended December 31. John (my husband) called DuPont and was told that they'd sent me a new drug coverage card with a new account number for this year. I had received nothing from them, but John had received Express Scripts insurance cards in the mail. Since he's older and on Medicare, he'd just thrown the cards away because his drug coverage isn't through Express Scripts. After John spent two and a half hours on the phone with DuPont and Express Scripts, we thought the issue was settled. We got logged onto my Express Scripts account online and changed the ID number as directed.

All was well - we thought. Then we discovered that all of my prescription refills had disappeared. I asked Dr. Watson's nurse to do the coverage review for Axert again and send in all new prescriptions. She got the approval for Axert and sent in all new prescriptions for me. Whew! Again, all was well - we thought. BUT, I received yet another new set of Express Scripts insurance cards with yet another new ID number. John called again. He was told that the new number is to go into effect on May 4 and that all of my prescriptions would be transferred to it. I cannot, however, log onto the Express Scripts site to see that account until May 5. When I log onto what's supposed to be my current account, all of my prescription refills are gone - again.

Now, do you want to know the truly confounding issue? Nobody at DuPont or Express Scripts can tell John why all of these changes are being made to my account. Changing ID numbers in the middle of the year is totally unprecedented, and nobody at either company can give us any answers.

I wear two hats in this situation:

  1. The patient who's being stressed and so negatively impacted by the situation.
  2. The patient advocate who helps others but doesn't seem to be able to do anything to help myself with this situation.

To summarize the situation:

  • DuPont and / or Express Scripts keep changing my ID number with no explanation. When new Express Scripts cards come in the mail, all I get is the cards with a "Welcome to Express Scripts" letter. No information about what's changing or why.
  • Hours spent on the phone have resulted in no answers on the what or why.
  • I've had to get all new prescriptions once and may have to do so again.
  • There seems to be nothing we can do other than wait and see what happens next week when yet another new ID number goes into effect.

There's absolutely no excuse for nobody being able to answer our questions. I can say with absolute confidence that if I performed my job so poorly, I'd be fired. John worked for DuPont for 30+ years with the guarantee of benefits through retirement until each of us reached the age where Medicare took over. We've paid significant monthly premiums for my coverage since he retired 15 years ago. There's no possible excuse for all of the inefficiency here or the plain old stupidity involved. It's not even as if DuPont and Express Scripts are giving me this coverage out of the goodness of their hearts. John worked for it for over 30 years, and we're PAYING for the coverage.

On top of the impact of Migraine and my other health issues on my physical health, I now have all of this stress impacting both my physical and mental health. Insurance should be there to help us with our health issues, not make them worse.

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2015
Last updated April 29, 2015.


Aetna and Botox for Chronic Migraine - What a Farce!

StupidityIncompetenceHave I said that I'm thrilled not to have to depends on Aetna to cover my treatment for Chronic Migraine? No? Well, I am truly thrilled that my insurance coverage changed from Aetna to Cigna the first of the year. Back in December, I shared my frustration that Aetna had denied coverage on Botox treatment for me for Chronic Migraine? Why? Essentially, because it was working too well. Since Botox had reduced my Migraine and Headache days to fewer than 15 per month, they had cut off coverage. (See Aetna Denied Botox for my Migraines - What?!) In the end, they paid it, but by the time they did, I was honestly beginning to wonder if anything was worth all the arguing and stress.

Today, I'm writing about a pathetically sad situation another patient is in with dear old Aetna. First, they questioned if the patient met the part of the Chronic Migraine definition that says the Migraines and headaches last at least four hours per day. Mind you that the doctor had charted that the patient had "continuous" Migraine with no breaks. Do you think that means four hours or more? Duh!

Then the doctor and the Aetna rep came to an Aetna requirement for Botox. The patient must have failed at least one preventive from each of three different classifications of medications. She's tried antidepressants, and they failed to help. She's failed two anti-epileptic meds, and they failed. The woman is beyond chronic, and the doctor feels it's time to try Botox. But, oh, no! Aetna insists that she try anti-hypertensives first, regardless of the fact that several of them are contraindicated for her due to other health issues.

Now here's where I just want to scream, "Stupidity and incompetence should be illegal!" Enough is enough. This poor patient has tried preventive medication after preventive medication, but they want her to try more, MOST of which have a might higher potential side effects profile than Botox does.

Anyone who's being honest will admit what's going on here. It's about the $$. Aetna doesn't want to pay for the Botox treatment. SHAME ON THEM?! If they don't want to pay for Botox, they should simply put it in their contracts and not cover it. People whose Migraines are bad enough to need Botox treatment don't need all the useless, idiotic, asinine red-tape run-arounds.

Seriously?! I repeat, stupidity and incompetence should be illegal!

Live well,

PurpleRibbonTiny Teri1
 

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© Teri Robert, 2014
Last updated September 23, 2013.


Migraine and Health Insurance

Are you trying to deal with Migraines without health insurance?I saw this on television today, and it offers some great information for people with no health insurance:

Live well,


 

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© Teri Robert, 2011
Last updated September 30, 2011