Community, Society

What to Expect at Headache on the Hill

If you’ve never attended Headache on the Hill, your first time can be a little intimidating. Knowing what to expect goes a long way toward reducing nervousness. Here’s what my in-person experience was like last year. Since this year will be virtual, I spoke with Katie MacDonald from the Alliance for Headache Disorders Advocacy about the differences, which I’ve noted throughout the post.

The “Ask”

The HOH leadership works ahead of time to determine what “asks” are likely to be most effective. Last year, we asked for legislators to sign onto a bill supporting funding for additional funding in training providers for the specialities of pain management and more fellowships in headache medicine. We will have different asks this year.

Pre-Event Training

Note: All training in 2021 will be virtual, of course. Some sessions will be recorded so you can watch on your own schedule, others will be live sessions so people can ask questions in real-time and work together. If you have been accepted to participate in HOH, you should have received an email with the training details.

At a webinar a week or two before we flew to Washington DC, the HOH team told us about the asks, shared background research, and gave pointers on telling our own story. Then we were told to think about our story that we’d share with legislators. (Your story should be about a minute that explains why you care about advocating for headache disorders. It doesn’t have to be perfected ahead of time, but is good to think about.) This will all be covered in the virtual training this year. 

Training Day

The first day of the event last year was a training where we learned about how to make effective “asks” and practiced telling our story in small groups. This will be on either March 17 or March 20 this year. Attendees were grouped by state. Because Arizona was a large group with seasoned HOH attendees, we also had the lone person from Indiana with us. (He didn’t have to visit legislators offices on his own, an HOH volunteer worked with him, but our grouping was helpful for training.) We were given the names of the legislators we were to visit and the schedule. 

We decided as a team how we wanted to frame our ask and who would speak when. At least three of us spoke at every office we visited—no one had to carry the weight on their own. If the representative from your district is one of the people you’re scheduled with, then you’ll definitely be asked to tell your story. We all introduced ourselves at every office, though, usually to say our names, where we’re from, and our connection to HOH (I said I live with chronic migraine and work as a patient advocate).

This year, it’s recommended that you try to arrange to attend the live virtual training (on March 17 or 20) with the people from your state, if possible. That way, you can have the same benefit of coordinating and learning from the expertise of previous attendees. If you don’t know who is attending, you can ask in the HOH Facebook group. (Depending on your specific meetings and how many people attend from your state, groups may be smaller than every person from the state. Exact groups won’t be known until all the meetings are scheduled.)

Meetings With Legislators

The day of, we started early. I think the first meeting was 8 a.m. Eastern time and we had to meet even earlier to catch the bus to the Capitol and take photos. (This won’t be an issue for this year’s virtual meetings, as they will be scheduled to respect the time zone participants are in.) 

Then we went from one office to the next. We usually talked to the legislator’s chief of staff or their health legislative assistant. They were often young and almost all of them were kind and down-to-earth. And they were curious about our experiences and wanted to hear from us. It was comfortable and not intimidating. Most told us about someone they know with migraine, which was a great personal connection. I believe we may have even asked if they knew someone with migraine. Beforehand, we designated one person to tell their story and one person to take the lead on the ask. As the conversations went on, other people chimed in. It felt like natural conversation. 

Even if you don’t get to meet with the actual member of Congress, don’t feel like you’re being snubbed! The staffers we meet with are most knowledgeable on health-related topics and their opinions carry a lot of weight with their bosses. 

Post-Meeting Debriefing

After each meeting, we debriefed together and filled out a short form about who we met with and how they responded. We also had taken photos with each person we met with and shared those on social media. The post-meeting activity will be a little different this year, since it’s virtual, but the platform will still allow for it.

After All the Meetings

New this year will be a live virtual gathering after the event for everyone to share their experiences. This is a fun advantage to having a virtual HOH. After the in-person meetings, most people went back to their rooms and went to bed early. It is a long day with a lot of walking, especially for people with headache disorders. Having a chance to all connect afterward will be a great bonus.

Society

Join me at a Virtual Headache on the Hill 2021

Headache on the Hill 2021 will be held virtually March 22 & 23, 2021. If you’ve wanted to attend, but the travel and long days kept you from participating, here’s your chance to attend without leaving your home!

My Experience With Headache on the Hill 2020

Headache on the Hill 2020 was my first time attending and it was an incredible experience. Taking my passion for helping people with headache disorders to lawmakers was exhilarating. And I got to connect with other people in my state who have headache disorders. I learned so much from them. Although COVID was declared a pandemic less than a month after HOH, which pushed our “asks” aside, it was still a worthwhile experience.

About Headache on the Hill 2021

In 2021, Headache on the Hill promises to be less grueling since we won’t be traipsing all over Capitol Hill. Being virtual will also allow more people to attend, thus expanding the number of representatives we can reach. Day 1 will be an online training where we’ll learn our “asks” and plan our approach with others in our small group. Day 2, we’ll meeting with senators and representatives (the number of meetings depends on their availability and how many people in your state attend). I’d love for you to join me!

Apply for Headache on the Hill 2021

To apply, email: info [at] allianceforheadacheadvocacy.org. Let them know what state you live in and that you’re interested in attending. If there’s availability, you’ll be sent a link to the application, which is due Friday, January 15, 2021.

Please don’t be intimidated by the need to apply. The application provides background information to get a good mix of representation at the meetings and to know which representatives to schedule with. Although the application asks for social media information and advocacy experience, neither are required to participate. Be yourself and don’t overthink it!

Questions?

If you have questions about participating in Headache on the Hill, please ask! I don’t know much about the logistical details, but can share what it’s like to be a participant. For logistical questions, email info [at] allianceforheadacheadvocacy.org.

Society

Take 10 Minutes to Help People With Cluster Headache

Oxygen is an effective, safe, and relatively inexpensive treatment for cluster headache. Yet Medicare and Medicaid (and, by extension, many private insurance companies) don’t cover home-use oxygen as a cluster headache treatment.

Public Comment Open Through September 16

The Centers for Medicare and Medicaid Services (CMS) is reviewing their policy and is open to public comment through Wednesday, Sept. 16. If they reverse their decision to allow for oxygen coverage, then private insurance companies will likely follow. That would widely expand the number of people who have access to this treatment.

How to Leave a Comment

The Alliance for Headache Disorders Advocacy created a guide for submitting comments to CMS and include links to PDFs with specialized information for patients and caregivers. The gist:

  • Write a comment about the efficacy of oxygen for cluster headache and your experience with cluster headache, if you have it (but you don’t have to have cluster headache to comment!)
  • Submit your comment on the CMS website.

That’s all there is to it. Obviously, spending more than 10 minutes to write a high-quality comment, especially if you have cluster headache or love someone who does, would be fantastic. But if you can only leave a quick comment, please do.

Society

I’m Afraid of COVID—and Migraine is the Reason Why

People are falling all over themselves to declare they aren’t afraid of COVID. Some eschew masks and precautions all together to show they are unafraid. Others—those I’m more likely to encounter—do wear masks, but make sure others know it isn’t out of fear. They have reasons at the ready—usually that they’re afraid of getting someone else sick—and attribute their concerns to caution, rather than fear.

I don’t do that and I don’t understand the compulsion to do so. I willing say that I’m afraid of getting COVID. I am not immunocompromised. I am not an essential worker. I’m unlikely to get anyone else sick (other than my husband and that thought does scare me). And I’m being more cautious than almost anyone I know.

Why am I so afraid? Because I live with a chronic illness and know what it’s like to lose physical capacity. I will do anything I possibly can to avoid the risk of adding more symptoms to the list of those I already live with.

No one knows what the lasting effects of COVID will be for people who survive. Some will be just fine. Others report lingering symptoms, including impaired breathing, headache, and fatigue, not to mention organ damage. (Headache specialists are seeing new patients with post-COVID headache—living with another headache disorder or worsening the one I already have? No thank you.)

I have had chronic migraine for three-quarters of my life. I’ve had enough relief in the last few years to feel almost normal. Yes, I still spend an inordinate amount of time managing triggers and on self-care to avoid a migraine flare-up, but, nonetheless, I feel mostly healthy. Before the stress of 2020 triggered a migraine exacerbation, I could exercise daily, work almost full-time, buy concert tickets and know I’d be able to attend, make plans with friends and not have to cancel them, plan a trip and be able to enjoy it. Healthy people take those things for granted. I do not, I cannot knowing what it’s like to live such a limited life.

The thought of having lasting impacts of COVID that could potentially rob me of my normalcy is enough to convince me to quarantine for two years if I have to. I have no problem loudly proclaiming that I’m afraid of getting COVID.

Community, Society

An Easy Way to Support Headache Disease Advocacy: Please Complete the CHAMP Survey

The headache disease community needs your help! To gather information to help improve patient access to treatments, advance research, and decrease stigma of headache diseases, the Coalition for Headache and Migraine Patients (CHAMP) is conducting a survey. I’m a CHAMP member and can tell you that the coalition is doing great work for people with headache diseases. We can be even more effective if we hear from more patients about their experiences.

In order to do this important work, we need to hear from more voices. This is where we’re asking for your help. You can:

  • Take the anonymous survey! If you live with headache, migraine or cluster disease, we want to hear your experience. The deadline is Sunday, Feb. 29.
  • Share this with anyone you know who lives with a headache disease

The survey is hugely important and takes about 15 minutes to complete thoughtfully. I promise your time will be well spent. At the end of the survey, you have the option to enter to win a $25 Amazon gift card.

Complete the CHAMP survey by clicking here!