Ashley Hattle’s Advocacy Win
Ashley Hattle’s advocacy win is written and told by Ashley Hattle and edited by Miles for Migraine team. Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.
I recently wrote about treating cluster headaches during pregnancy and the pain relief I’ve achieved with high flow oxygen therapy. I’m now eight weeks into an episodic cluster headache cycle that started at the dawn of the second trimester.
High flow oxygen is the most effective treatment for cluster headaches. Unfortunately, insurance companies rarely cover the cost of oxygen therapy. While we continue to fight for coverage, many patients have resigned themselves to paying out of pocket for life-saving high flow oxygen. Since this cluster headache cycle began, I’ve gone through over $300 in oxygen. With oxygen as the safest treatment option for me and my baby, I investigated whether my insurance company would cover the cost of oxygen now that I was pregnant.
I was told I needed a prescription with my “new diagnosis” to bill insurance. I explained that cluster headache is a lifelong neurological condition and that I didn’t need to be diagnosed again. Resigned to paying for my oxygen out of pocket, I called to arrange a new tank delivery and learned that unbeknownst to me my prescription had expired last summer. My request to bill my insurance had unearthed the oxygen company’s mistake in continuing to supply me with oxygen without a current prescription, and now they were refusing to supply any oxygen without a new prescription.
Here I was with just a few hours left of oxygen, in the 21st week of pregnancy, being denied the only treatment for my brain disorder during a pandemic. Thankfully, I got a new prescription just in the nick of time, and as I caught my breath I realized I was probably not the first patient left high and dry because of an expired prescription.
Ashely Hattle’s Advocacy Story
Unlike pharmacies, oxygen companies don’t notify patients when their prescriptions are set to expire. I decided I, as a headache advocate, couldn’t let this slide. I wrote to the President of Airway Oxygen, urging them to provide training on cluster headaches to all staff and to change their practices to notify patients before prescriptions expired.
The President’s response was outstanding. He got my oxygen needs resolved that day. Over the phone, he apologized and we discussed cluster headache patients’ unique needs and the importance of understanding them. He is working to ensure cluster headaches patients will be treated in a timely manner and according to their prescription. He’s even looking into stocking a mask made specifically for cluster headaches. When coronavirus cases decrease in Michigan they want to host me for a presentation on cluster headaches and high flow oxygen.
Ashley Hattle’s Advocacy Win
This isn’t the first time I’ve had to argue for my needs as a cluster headache patient, but it is the first time it’s had a happy ending. Being an advocate for your medical condition can be challenging, especially when it’s an invisible illness like migraine disease or cluster headaches. But your actions could make a huge difference for the next patient. If I had to go through the anxiety and fear of running out of oxygen, I’m thankful my negative experience led to an advocacy win.
Tell your Advocacy Story
Do you have an advocacy story to tell like Ashley Hattle’s advocacy win? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event. Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.
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