Miss Migraine in the Pittsburgh Post-Gazette

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine.

After my last post about Aimovig, the first-ever drug designed specifically to prevent migraines, the Pittsburgh Post-Gazette contacted me about doing an interview with them. You can read the full story on the P-G’s website! Here’s a snippet:

“I can’t even conceptualize what’s it like to not be in constant pain,” said Kelly Lynn Thomas, a patient at UPMC. “So, the possibility of having time where I’m not in any pain is mind-blowing.”

For years, Ms. Thomas, 31, of Spring Hill-City View, has written a blog “The Adventures of Miss Migraine.” The most recent post features the new drug. “Guys. This is huge,” she begins.

I was thrilled to be able to help shed some light on this important issue, and am so glad Aimovig is getting so much press.

Now, I have an ask. Help me raise $300 to support migraine research and awareness!

Last week I started the Couch 2 5K running program. Exercise is a good tool in the migraine management tool box, but it is unfortunately also difficult to get started because, well–migraines sap your energy and suck the life out of you, and exercise tends to trigger them. So far I like the C25K program because it starts out slow and alternates running with walking for the first few weeks.

While I am already feeling the benefits of regular exercise (I really do have more energy!), I’m not just doing this for me. I’m running to raise funds for migraine research as part of migraine advocacy organization Miles for Migraine’s June Virtual Challenge.

I won’t be ready to run a full 5k by the end of June, but I’ll be halfway there. I’ll continue running in July and hope to run my first 5K in August or September. Throughout June, on non-running days, my goal is to at least go for a 30-minute walk and/or attend a yoga class. Starting June 1st, I’ll post weekly updates here about my progress.

Here’s how you can help this June and beyond:

  1. Make a donation through my fundraising page.
  2. Share my page with your social networks.
  3. Reach out to someone living with chronic migraine and let them know you care. If you’re able, offer to do something nice for them, or send an encouragement card or small token (just lay off smelly lotion or candles, as perfume can trigger migraines).
  4. Share the Post-Gazette article with your networks to help spread awareness of how difficult, isolating, and depressing chronic migraine can be.
  5. Ask your health insurance provider if they plan to cover Aimovig, and when. If they say no, ask why not and reaffirm how important this drug is to migraine patients.

I’m also working on some gift ideas for anyone who pledges a certain amount of money, so stay tuned for more on that!

 

Miss Migraine Gets Angry Part 2

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on my blog of the same name on December 19, 2012.

If you read Miss Migraine Gets Angry, you know that my insurance company tried to limit my access to triptans, and that I planned to follow through with them and correct their egregious money-grubbing behavior. (Oops, did I type that out loud?)

Unfortunately, I wasn’t entirely successful, partly because I’m currently unable to take triptans at all (more on that in another post). But my neurologist did send the insurance company an authorization for them to a.) cover Maxalt and b). give me the full 12 pills my prescription calls for.

A tower of pills

Insurance companies’ policies determine our level of access to health care.

While I was waiting for the authorization to go through, I called the FDA, and they directed me to information online proving that no, the FDA does not regulate insurance companies and that, yes, the recommended Maxalt dosing comes out to 12 10-mg. pills per month [Note: The page I had linked here doesn’t seem to exist anymore, and my lazy Googling did not come up with a ready replacement]. I emailed this to the insurance company with a polite, but firm, note. I never received a response, and they refused to let me speak directly with the pharmacy department. The woman I spoke with, while polite, seemed frustrated with my insistence.

So did it help? Has my insurance company changed its policies? Nope.

There’s one more step I can take, though. That’s to call the local branch of the National Association of Insurance Commissioners, an organization that helps protect the public’s interest when it comes to insurance of all kinds, including health. I’ve been too sick with migraines to do this (and the urgency isn’t there since I can’t take the pills), but I plan to after the holidays.

This issue goes beyond me. It’s an issue that affects all migraine patients. In the greater scheme, insurance companies that limit prescriptions of any kind affect not only all of us suffering from  chronic illnesses, but those suffering from acute illnesses as well.

(And as a foot note, the authorization did go through and was approved, but there was some kind of issue between the pharmacy and the insurance company. I didn’t bother figuring out what it was since I can’t take Maxalt now anyway, but let’s just say this has been anything but a smooth process.)

Has your insurance company tried to limit your medications? What steps have you taken?

 

Miss Migraine: Shopping for health insurance

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The Adventures of Miss Migraine is an ongoing column about my life with chronic migraine. A version of this post appeared first on my blog of the same name on September 6, 2012. I’ve updated it with reflections and more experiences.

When I was 26, my partner was laid off and we lost our health insurance. It was 2012, and the ACA exchanges weren’t up and running yet. So, I had to shop for health insurance on my own, to ask questions like “What kind of formulary does this plan have?” and “What would the prescription co-pays be for venlafaxine, topiramate, verapamil, Maxalt, Migranal?”

Caduceus and headlight

“Caduceus and Headlight” by Flickr user takomabibelot. Used under Creative Commons license.

I had to check and double check for things like spinal manipulations and mental/behavioral health coverage. I had to weigh specialist co-pays against deductibles and monthly premiums, generic prescription co-pays against brand-name prescription co-pays and mail order pharmacy co-pays.

At the time, a colleague of mine, similar age, same career goals (writer), said this to me: “Yeah, I had health insurance in grad school. It was a decent plan. But I never used it.”

I use my insurance at least once every week. To refill prescriptions, to see my chiropractor, my therapist, my migraine specialist. To get another test done. So many tests. Yearly blood work, at least, but throw in a nearly annual visit to the ER and we’re talking CT scan or MRI on top of that, which always come out of the deductible.

The specialist visit co-pays mean more to me than the regular office visit co-pays. I hardly even looked at that column. I see my PCP once or twice a year. I see my migraine specialist every three months. But even more important, it’s the prescription co-pays I have to watch out for. Right now a generic version of my abortive drug, almotriptan, costs me $80 for 12 pills. A generic.

My friends, my colleagues, most of them don’t even know what their specialist co-pays are. I’m painfully aware of mine. I envy them, my friends who look at health insurance as a bonus, an unnecessary extra.

In 2012, a health care plan for two people with a $5,000 deductible cost us $500 per month. Honestly I don’t know how we afforded it, except that we couldn’t afford not to. I’ve been on several different insurance plans since then, some good, some bad.

On each one, though, I’ve had to fight for the coverage I need. Migraine isn’t a deadly disease in most cases, but it can be deadly in indirect ways. It can make you so miserable you just want to find relief in any way possible. It can make you desperate. And health insurers? They don’t care. They are only thinking about the bottom line. The ACA didn’t change that. Sabotaging the ACA didn’t change that.

But you know what will? Universal health care. I’m not going to debate the ins and outs of it or exactly what form it should take. Greed is literally killing people. Universal health care won’t solve all the problems of our health care system, but it could save lives. I hope one day I can talk to a teenager and tell them the crazy story of how you used to have to shop for health insurance.

For now, though, it’s open enrollment season with our current insurance provider, and I need to get back to the books to figure out which plan will be the least frustrating.