Headache on the Hill 2014
In order to gain forward momentum, collaboration is required. The reward? A profoundly deep and enriched sense of community.
“Coming together is a beginning, staying together is progress, and working together is success.”
– Henry Ford
The Alliance (AHDA)
In the fall of 2011, Clusterbusters joined The Alliance for Headache Disorders Advocacy, sending our first team of advocates to the Capitol in the spring of 2012. The Alliance truly embodies remarkable resolve toward the care and commitment to excellence in medicine for all primary headache patients.
Travel and the Polar Vortex
Past Headache on the Hill (HOH) events have been held in the spring months of March and April. Since this was our first year to have winter appointments, many were concerned about safe travel. Normal winter weather can affect travel plans with delays, etc., but this was no normal winter! All over the nation, polar vortex warnings bombarded the news. Still, we nearly doubled our team. Just two days later, the capitol closed due to the severe conditions. Serendipity?
Arrivals and Training Day
Everyone arrives with their own blend of excitement, purpose and trepidation. During our time in Washington DC, the lobby of the hotel served as a hub. Lively consortiums of advocates greet one another here exchanging just the right dose of kinship. By Monday afternoon, the room smoothly transitions into the backdrop for filming our first national media coverage (see Media on The Hill section for complete details). Slowly the lobby thins as we make our way towards the meeting room where we reassemble and training begins.
Opening remarks put an emphasis on our collective approach to the Tuesday appointments. Everyone in the room is acknowledged as being a vital part of the process. Patients, neurologists and members of professional organizations each play an important role in our success. From here, two major themes begin to emerge. The first is “HOH is a conversation”. And the second is, “Primary headaches are costly, prevalent and neglected”.
As the training continues, it becomes clear not only are primary headaches neglected by the National Institutes of Health (NIH) but all of neurology is neglected. To combat this neglect, the American Academy of Neurology (AAN) hosts a similar event known as Neurology on the Hill (NOH) annually. Knowing this makes it all that much easier to become an advocate and to be part of the conversation.
Next time you have an appointment, please let your neurologist know you support both HOH and NOH and urge them to take part.
The Requests aka “Asks”
Each year, The Alliance Board of Directors prioritizes the talking points for HOH. These are refined and eventually become the requests which are often referred to as our “asks”.
An introduction outlining the Burden of the Disorders is included and punctuates the need for all the “asks” to be granted. Together this material becomes what is known as our “Leave Behinds”. The following is an abbreviated version outlining our requests with links to access the actual “Leave Behinds”
1- We will ask NIH to give us a fix for the unfair reviews that grants for migraine and cluster headache are getting. This may seem like a technical thing but would make a huge difference towards boosting research, as many researchers are turned off by perceived unfairness in the review process. Leave Behind_Ask 1
2- We will ask Medicare to cover oxygen for cluster headache Leave Behind_Ask 2
3- We will ask the Senate to renew funding through the military budget for funding for chronic migraine and post-concussive headache. Leave Behind_Ask 3
As we near the end of the training session a mock meeting is held. It is a lot of information to take in, but one thing is certain, all advocates are held in high regard as we simultaneously coalesce into a team.
Hallmark of Collaboration
As primary headache patients we know there are hundreds upon hundreds of possible requests which makes choosing three a very difficult task. This year, the first cluster headache patient specific ask was included. When you consider prevalence of the different primary headache patient groups, this was a huge acknowledgement to us and our advocacy work with The Alliance. Huge!
Clusterbusters sent 35 participants from 18 states to join The Alliance for Headache Disorders Advocacy 7th annual “Headache on the Hill”. The total HOH team consisted of 77 advocates from 34 states who held meetings with 162 offices. To see the growth of the team and the progress achieved from year to year click on History of Clusterbusters attending HOH . It is impressive!
After meeting on the capitol steps for a quick group photo we head off to our respective meetings. Warming up over a cup of coffee, Tom Klouda, US Senate Finance Committee hand delivers Social Security Administrations (SSA) Commissioner Carolyn Colvin’s response to cluster headache advocate, John Bebee. Recall in 2013 one of our requests was for the SSA to add both migraine and cluster headache to the Blue Book of Disabilities Listing. Although the response did not fulfill the requested action, adhering to our own theme of “It’s a conversation” we now have something to respond to. For SSA to completely ignore our request would have been far worse.
The most compelling response coming out of the day was the overwhelming support of our request to overturn the CMS decision denying coverage of oxygen to cluster headache patients on Medicare. In fact, at the time of this writing Senator Mike Johanns (Nebraska) office has agreed to write a colleague letter. Once the letter is written it will be circulated throughout the capitol, gathering signatures of all those in support.
Primary headaches affect nearly every family in the United States, including congressional families. Often during the meetings the member (or their staff) will begin personally relating by saying “my father suffers” or “my aunt has migraines”. The prevalence is never disputed.
Let’s take these thoughts one step further. Primary headaches definitely cross both bicameral (House & Senate) and bipartisan (Democrat & Republican) lines. In fact, advocates recap meeting responsiveness at the end of the day and highlight the “identifying” moment. We revel in these encouraging stories because odds are, these same members are equally excited to share our visit (and hope) with their own loved ones. Bottom line is everyone recognizes primary headaches impact a lot of people. We can just imagine their thoughts; “Of course this needs to be addressed” or “why hasn’t this been done already?”
Media on the Hill
In January, the consistency of our advocacy work along with the generosity of Ascot Media Group, Inc. produced the first nationwide Clusterbusters Press Release and yielded unprecedented media coverage.
As a direct result of these efforts we received the following note from NBC;
“Your WGAL-TV piece on cluster headache was syndicated and appeared in the following outlets:
(see complete station list here) Thank you for participating in this interesting and illuminating piece.”
Dr. William Young, president of the AHDA and Clusterbusters Medical Advisory Board member teamed with advocate, Kirt Kessler to do the WGAL news piece. When WGAL confirmed their interest in doing the story, Clusterbusters was able to contact Kirt via the Cluster Headache Worldwide Map (please add your name). The map began as tool to end the isolation cluster patients experience by finding a local buddy and turned into an advocate resource. That’s excellence in collaboration!
Many other news stories featuring cluster headache advocates were seen in print or were aired in the US media prior to, during and after our trip to the capitol. We extend a sincere “Thank you” to those who reached out to their local media connections and contributed. Each of these stories does make a difference; in fact we are certain these stories played a major role in attracting Al Jazeera America to film and produce the following piece during HOH. Reporter Tom Ackerman opens the story stating…
“Describing the pain of a cluster headache is one thing, showing it is quite another as many patients have done by recording their own experience.” –Tom Ackerman, Washington DC
What You Can Do
There are numerous ways to participate in this growing community of primary headache advocates. When you upload a YouTube video or comment on news stories you are being an advocate. When you join and share via social media sites, you are being an advocate. When you donate to our fundraising efforts, you are being an advocate. Advocacy is an act of self-empowerment where one refuses to remain isolated and joins the conversation.
Now is the time for all headache patients to politely yet firmly share our collective message with our US Representatives. Diana Lee, HOH advocate, writer and attorney shares in her blog titled “Taking Migraine to Capitol Hill for HOH ’14-What You Can Do” a wealth of information including easy-to-follow instructions to help you get started. This is a great resource on how you can let your representatives know you support the efforts of the Headache on the Hill team. Included within are office addresses, a complete recap of our “asks” and template letters. Let us know you’ve acted. Send a comment to us!
Fundraising Video Victory
Our first HOH fundraising video is another great example of the fruits enjoyed when folks begin collaborating. Mollie Markins, daughter of advocate Lee Markins, United Way Videographer and owner of Markins Media began filming willing spokespersons 2 years ago during the 7th Annual Clusterbusters Cluster Headache Conference in Las Vegas. Mollie wrote, directed and produced this amazing video. 100% of this work was done with volunteer hours. The final 4:07 minute video was published on our “Causes” website where more than 200 people “Pledged” to share the video. Thank you to all who took the “Pledge” and shared. We nearly doubled previous HOH fundraising efforts because you did!
HOH Advocates Share
“We have no greater honor but to fight for the rights of others. Our fight begins in solitary and ends in a very public fight to honor those who suffered before us, with us, and more importantly those who have not suffered yet. Social change begins with an outcry. Together we will make them hear. Join in help with support and participation; there is much pain to go around for motivation.”
– John Bebee
“My son, Austin Jamerson and I went to DC, Capitol Hill, Tues. Feb 11, 2014. The day before, in our conference room at the hotel all of the individual headache groups formed one big group named, ‘Alliance for Headache Disorders Advocacy’. In the room there were doctors, nurses, sufferers of Clusters and Migraines etc. I was so relieved to have 4 more people from my state of California join my son and I.. Doctors who we shared the day with, walking one on one with him all over Capitol Hill from building to building, tell Austin to call anytime he needs them. Incredible experience. Priceless! Thank you #HOH2014″
– Natalie Hart
“It is the most unforgettable experience to attend and participate in the HOH. Hopefully, Adam and I will never miss it.”
– Louise Barham
“This was my 2nd year with my husband, who suffers with Chronic Cluster headaches. 1st year was a total life changing experience for both of us. We are everyday people and would never think we would be on the hill advocating for anything! You feel normal because everyone’s story is similar and knowing we are all advocating for all Headache Disorders, the amazing people fighting through cluster attacks while on the hill , life altering.”
– Heather Keschinger
“I felt we made our cause heard with those we spoke to and I got a chance to speak with a couple of medical professionals in my group about high flow O2 and the difference it could make in their patients lives.”
– Bill Mingus
“HOH was a very moving and positive experience for me this year. One of our visits led us to the Senate floor while they were in session and we got to meet Senator Ayotte outside the chambers. During our visit we spoke of how headaches affect our lives and the need for research. The aides we visited listened and asked questions. I am waiting to hear back from them regarding our “asks”. I would recommend that anyone who suffers headaches attend this event. We can make a difference for millions of people.”
– Lee Markins
“Looking around the group, young and old alike, we all know the intensity of our condition. Now we are on Capitol Hill speaking with representatives and aides about our situation. The meetings are not stressful like I had imagined, just a chat around a table or a couple of hallway meetings. The aides are very receptive, let’s face it, who hasn’t had a headache? They understand and want to help. All the meetings are planned professionally. This is a great event to attend. Add it to your bucket list!”
– Steve T Keschinger
“This was my second year attending and am happy to see the amazingly fast results each year. Truly a life changing event and am honored to be part of this team!”
– Todd Pittard
To the 35 Clusterbusters HOH team members and their families who supported these advocates in order to continue our “conversation” on The Hill our sincerest “Thank You”. We know you contributed on many levels. You professionally represented not only your own powerful message but the entire patient group’s message of “Primary headaches are costly, prevalent and neglected”. Many of you came while managing your own pain. Our momentum continues to gain and attract new and positive attention because of your selfless gifts. A common understanding that attendees have is that although progress can be slow, progress is made. Our stories are heard and we build upon each event’s progress year after year. Empowerment increases as individuals make progress for not only themselves and their families, but for all cluster families. The rewards this type of advocacy work often provides far outweighs any thank you that we can offer. It was a privilege for us to witness this incredible collection of advocates doing wonderful work for others. You are making history, changing the past and improving the future.