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!

Community, Society

Headache on the Hill 2020

On Tuesday, I attended my first Headache on the Hill advocacy event in Washington, DC. It was an inspiring, educational experience where I learned a bit more about how our country works. I was one of 174 advocates who sought to get co-sponsors for a bill that would increase the number of residencies for people who treat addiction and pain disorder. We also asked for an amendment to the existing bill to increase fellowship funding so more people can train as headache specialists. We represented 45 different states and visited 255 offices of Congress members.

TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling
TeamArizona at Headache on the Hill 2020: Jenn Tingwald, Amy Tees, Don Vanderpool, Jamie Valendy, Kerrie Smyres, and Amaal Starling

What is Headache on the Hill?

Headache on the Hill is an annual event where people who are affected by headache disorders visit the offices of their state senators and representatives with a specific “ask” to improve the lives of people with headache disorders. The ask is different each year and it’s tailored to specific activities in Congress or needs in the headache community.

The first Headache on the Hill, in 2007, was entirely healthcare providers. This year, about 70% of the participants were people who live with headache disorders or our loved ones who wanted to advocate for us. All six of us on TeamArizona have migraine and two are also healthcare providers, which was a great mix.

What We Asked For

The Opioid Workforce Act is a bill currently in both the House in the Senate that seeks to increase funding for more training programs in addiction medicine, addiction psychiatry, and pain medicine. We asked for co-sponsors for the bill and also asked for an amendment to the bill to include fellowships. The bill is currently written only for residencies, but pain medicine (and headache medicine) are fellowships, not residencies. We also asked that they specifically include headache medicine residencies in the bill, since they have different training programs than pain specialists do.

How You Can Help

Even if you didn’t attend Headache on the Hill, you can help by reaching out to your senators and representatives about the Opioid Workforce Act (which is H.R.3414 in the House and S.2892 in the Senate). First, check to see if they have already co-sponsored the bill (check here for representatives co-sponsoring H.R.3414 and here for senators co-sponsoring S.2892). If they have co-sponsored, please thank them for doing so and tell them how important it is to you. If not, please ask them to co-sponsor the bill. You can also ask them to amend the error in the language to include pain medicine and headache medicine fellowships (rather than residencies), but you can skip that part if it feels too hard to explain (I got training on it and it was still hard to explain!).

You can find your representatives and senators here. Calling is probably the easiest approach, but research shows that a personalized postal letter or personalized email are more effective than a phone call. Given that “personalized” is a key component of the effectiveness of the letter or email, I don’t have prewritten wording for you. My recommendation is to start with the “ask” and then tell them why it’s important to you. Be sure to include your address in the letter so they know you’re a constituent.

If you call, know that you’ll likely reach voicemail, so if you have anxiety about talking to a stranger on the phone, know that you probably won’t! Be sure to leave your zip code so they know you’re a constituent. I always add my full address at the very end of the voicemail, just in case.

Join Me Next Year!

Join me in 2021 to advocate for headache disorders in your state! Follow the Alliance for Headache Disorders advocacy on Facebook or Twitter to learn when the applications for next year open, which is usually in November. There is an application form to fill out and not everyone is accepted—it’s based on which states and areas within each state need representation—but please don’t be intimidated by the application form. You don’t need to have a social media presence or a history of advocacy to be able to participate, but it’s good information for them to have, so they ask for it.

A caveat: Headache on the Hill is the largest patient advocacy group without a corporate sponsor that does lobbying events like this. That means both that there’s no corporate intervention in the message (which is great!) and that it’s done on a shoestring (which can be a challenge for some patients who want to participate). Participants’ hotel rooms are covered for at least one night and usually a couple meals are covered, too. You’ll need to cover transportation to and from Washington, D.C., some of your meals (I brought a lot of nonperishable food and found a grocery store nearby), and for extra nights at the hotel. It’s a commitment, but it’s an incredible experience if you can do it. I honestly can’t count how many people have told me that attend Headache on the Hill was life-changing for them.