Living with Migraine: Shame on United Airlines

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,

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