Last week I participated in my fifth ​Headache on the Hill​ (HOH), a biannual advocacy event for better legislation and funding for headache disorders with my representatives in the United States Congress.

This year I didn’t fly all the way to Washington DC to participate, but I was able to meet with my representatives virtually for a day of seven meetings for Idaho and Vermont.

It sounds easier than flying across the country, but somehow it still wipes me out every time!

This year felt a little easier though because I got a break from being team captain. Miles for Migraine’s new executive director Katie MacDonald led our group, which was definitely a load off for me.

I was excited that my local migraine bestie Laura and I recruited a new advocate from Idaho to join us. It’s really special to actually know all the advocates from your state personally.

I am amazed by all the patient advocates who truly sacrifice their health to advocate for headache and migraine, because the stress leading up to Headache on the Hill and coming down from it can often aggravate our symptoms.

So what did we talk about in these meetings?

We always start off by sharing our personal story about how headache or migraine has changed the course of our lives. This personal story is often the most effective and memorable way to capture the staffers’ attention and help them understand the real impact of migraine and headache.

We usually advocate for two or three “asks” when talking to the aides of our Congress representatives (once in a while we’ll get lucky and get to talk to the ACTUAL congressperson).

This time we asked our reps to once again co-sponsor the Safe Step Act, which had great bipartisan support in our last congress, but hasn’t been passed into law yet.

The Safe Step Act would create a nationwide plan to help patients get exemptions to the ridiculous “fail first” protocol for meds, which disproportionately affects people with headache disorders.

I’m sure you’ve experienced it from your own health insurance—having to try and fail cheaper, older drugs with horrible side effects like Topamax first before you can get the more effective, but more expensive migraine-specific drugs that your doctor recommended in the first place.

Well, the Safe Step Act would create an exemption process similar to what 36 states already have in place to allow you to bypass that process to get the meds that would help you the most.

Our other big ask was to get co-sponsors for the first federal headache-specific legislation ever to be introduced…the HEADACHE Act!

This act was modeled after successful disease-specific legislation like the Parkinson’s Act, which would basically create a federal initiative and advisory council to better coordinate headache research, education and care.

The HEADACHE Act would do so much to advance headache disorder research and funding to better support patients.

If you haven’t sent an email to your representatives in Congress to support our advocacy at Headache on the Hill, it’s super easy to do.

​Email your US representatives in less than 30 seconds to support headache disorders​.​

Thank you for all your support,

Adriane

PS Reply to this email if you’re interested in participating in ​Headache on the Hill​ next year. I’m happy to answer any questions. We’re always in need of advocates from less populated states especially.

PPS By the time you get this, I will be wrapping up my very first in-person Yoga for Migraine retreat with six lucky participants here in Idaho. I can’t wait to share how our rejuvenating migraine-friendly retreat went with you next week!

Adriane Dellorco (she/her)

I help women take back their lives from chronic migraine with a whole-person approach.

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