True momentum is a confluence of ideas, bodies of dedicated messengers willing to convey those ideas and an appropriate listening audience who are seated in a position to act on those ideas and then do so.
The momentum of the 2013 “Headache on the Hill” event is exciting and ongoing! For the benefit of new message board members let me share a brief summary of how our involvement with The Alliance for Headache Disorders Advocacy began in 2011.
Who is The Alliance?
The Alliance for Headache Disorders Advocacyis comprised of registered nonprofit organizations who are vitally concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, tension-type headaches. All headache disorders. The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients.
History of our involvement
Clusterbusters Board of Directors and President Bob Wold recognized a unique opportunity for the cluster headache patient group to have their voices heard at the congressional level by joining The Alliance for their 5th annual “Headache on the Hill” event. The preliminary research was completed and the 2012 team came together in a few short months with a dozen Clusterheads taking part in our inaugural presence on The Hill.
Remarkably, 75% of the 2012 Clusterbuster team returned this year! Can we call them incumbents now?
Vital to the efforts of the entire team is fundraising. It’s important to recognize the many levels of support that enabled our patient group to have such a prominent showing at the 2013 event. The “Headache on the Hill” online fundraiser sought donations to assist those volunteering to travel with us who, with assistance of travel scholarships, were able to participate. This aspect is crucial to our continued advocacy work. We thank all who donated generously to this fundraiser.
During the fundraiser we learned that congress had responded positively to one of our 2012 requests and were able to post this encouraging note: “To anyone wondering if our congress will be listening let alone acting on our behalf, I offer you this message from Dr. Robert Shapiro, President of the Alliance for Headache Disorders Advocacy: “Because of last year’s HOH, research funds to study chronic migraines and post-traumatic headaches are now available through the Department of Defense.
Not an easy task in this time of budget cuts. Everyone that joined us last year should be proud of this accomplishment. “ -Bob Wold
And the dollars rolled in!
Clusterbusters stats and board positions
The 2013 Clusterbuster Advocacy team increased from 12 members to 19 members. We were nearly one-third of The Alliance total team members. We hope the AHDA advocacy team continues to grow in total, but for certain in the Clusterbuster members.
It’s with humble appreciation to physicians, researchers and other headache advocacy groups that AHDA (Alliance for Headache Disorder Advocacy) elected Clusterbusters as the organization to represent cluster headache sufferers nationwide. The following is Clusterbuster President Bob Wold’s remarks regarding our acceptance into the organization and his positions on the relative boards: “As a Board member of AHDA and Co-Chair of AHMA (American Headache & Migraine Association – sub organization of ACHE), it’s my continued determination to educate the public, spur research, and pursue every possible avenue to find answers and obtain effective medications for our condition.”
As the returning Clusterbuster team members arrived in Washington D.C. on Sunday and early Monday morning, they didn’t hesitate to engage the new team members with stories of what to expect during the Monday afternoon training session and the Tuesday meetings at the Capitol.
It’s not easy to take time away from work and family but this is an amazingly dedicated group. Inspired because they know they can make a difference for not only themselves but for hundreds of thousands of families that live with Cluster Headache.
The Alliance provided detailed training to cover what’s known as our “asks” or “requests”. The continuity from year to year is held and is often referred to as an ongoing “conversation”. The professionalism and focus this group exhibits is astounding. The following is a brief outline of the our asks:
1. Recognize disabling headache disorders with a listing in the official Social Security Administration listing of Impairments (Blue Book)
2. Increase the funding from the NIH for research on disabling headache disorders
3. Renew and support funding for research of Chronic Migraines and Traumatic Brain Injuries within the Department of Defense Congressionally Directed Medical Research Program. This funding needs to be reallocated each year.
More of the conversation
In an email sent from The Alliance out-going president, Dr. Robert Shapiro the day after the event we learned this; “Yesterday was a huge success, thanks to you. It was a real team effort.
The final tally for Hill meetings was 64 people from 28 states visited 129 offices. A great turn-out! Furthermore, these offices included many of the most influential and powerful Members of Congress with regard to NIH and Social Security – the agencies targeted by our asks. My personal experiences, and the early reports that I’ve heard from you, were overwhelmingly positive responses to our asks. This bodes very well, but of course is no guarantee for our success.”
As of today, we know Dr. Shapiro was being cautious in his final remark. Now let me share the really, really good part.
Our own John Bebee is the constituent responsible for the influential meeting Dr. Shapiro speaks of in his email! Together, John, Dr. Shapiro and I spent 50 minutes discussing the various aspects of our “asks” with these influential members of the SSA & NIH. What struck me was how quickly this meeting went from sharing our “asks” to getting down to the brass tacks of a real discussion. One of the perceived obstacles was the lack of the medical community’s ability to run a diagnostic test capable of positively identifying a primary headache patient. Dr. Shapiro quickly supplied several ways to overcome these obstacles. Upon the close of every meeting a customary exchange of business cards takes place. While exchanging business cards with Tom Klouda, US Senate Finance Committee, Social Security Detail, he said these words:
“Your names will not go down in history; however, I assure you that the results of this meeting will affect the lives of millions.”.
One truly unforgettable feature for all patients participating is the peer to peer relationship nurtured with the other advocates during the event. Every participating member is an advocate first.
Because of the nature of the event, a meaningful dialogue between patient advocates and the many attending top neurologists, leaders of neurology associations such as AAN, NHF and AHS who are just as compassionate about learning from us as they are about pursuing the goals of The Alliance, opens up, is encouraged and sought out. Whether it’s walking together to share a 30 minute Metro (train) ride from the Radisson to the Capitol, posturing for the group photo on the Capitol steps or grabbing a quick cup of coffee between meetings in the House and Senate buildings, it seemed we were always engaging in a free exchange of educational information. Inside the meetings, as greater details of our personal stories with clusters unfolded, not only did congressional members or staffers offer empathic compassion, so did leaders of the largest headache foundations in the US. Many of whom rarely see cluster patients in their own practices.
Follow up-Maintain a Conversation
Once the event is over and the advocates start departing, there’s a true sense of sadness. Feelings like you just don’t want this fervor to end (because you know what’s at stake) but the excitement returns as the days pass and you learn of the teams’ successes.
A vital part of achieving the successes lies within nurturing these new relationships with the other advocates and the representatives we’ve met with. During the training session this was emphasized over and over again. Maintain a conversation.
The cluster patient contingency has received remarkable follow up responses. John Bebee’s Congressman Max Baucus of Montana writes the very first letter of support! Next Dr. Shapiro (AHDA outgoing president), received a letter of support from Congressman Peter Welch of Vermont. Lee Markins Senator Kelly Ayotte has just written her letter of support too. In all, as of 5/23/13 the AHDA has received 3 letters of support.
We imagine many more conversations are going on, but wanted to share one example here:BJ and Becky had the following response from Laura Ringdahl Senior Legislative Assistant to Congressman Tom Reed, NY:
“Thank you so much for your email. I have actually been working on a draft letter that Tom had asked me to write regarding Federal research for Headache Disorders after you had come to the office last month. I will have that ready hopefully this week and will be sure to get you a copy. Thanks for following up, hope all is well in NY. Please don’t hesitate to reach back out in the meantime.
This isn’t one of those “You had to be there at the beginning to get into the swing of things” events. In fact, recalling The Alliance training session mantra of “It’s a conversation” is the most fitting way to close the Clusterbusters “Headache on the Hill” progress report. How fitting to end with a beginning. With united efforts with other primary headache patient groups, the cluster headache community not only increases our footprint and our voice, but has a real opportunity to also make further distinctions between the two diagnosis’s. We have all left the “Isolation Phase”, entered into the uplifting and supportive times of the “Connection Phase” and now have a real opportunity participating collectively in the “Action Phase”.
To the 19 cluster headache advocates, their families (both personal and CH community support families) who’ve started their conversations, sincere thanks goes out to you. We recognize you gave in multiple ways to be the voice representatives of the US Congress heard in April. Your representation of the entire cluster headache patient group could not have been any better.
Videos of cluster headache experiences were powerful visual aids, so we thank all the cluster headache patients who’ve had the courage to film, upload and share your videos on the web. These videos contributed immeasurable information to the viewers..
Clusterbuseters HOH Event Coordinator