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Headache on the Hill, 2012

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Washington D.C.

“Headache on the Hill”

March 26 -27, 2012

Headache on the Hill is an annual event organized by the Alliance for Headache Disorders Advocacy during which healthcare professionals, scientists, and patient advocates urge congressional representatives to increase NIH (National Institute of Health) funding for research on headache disorders.  This year, Clusterbusters joined efforts with the AHDA to bring specific awareness to the lack of cluster headache research and the dire need for effective medical treatment. 

Out of a total of 62 participants (including 25 M.D.s),  Clusterbusters is pleased to announce that at this event we had the participation of 12 cluster headache sufferers and supporters!    Our group was incredibly motivated and inspirational to all they came in contact with, including other participants as well as the congressional leaders they visited.   Especially inspiring was the fact that most were in active cluster cycles, yet they pressed on with determination as they navigated Capital grounds, rushing from building to building, attending scheduled appointments with their Senators and representatives.  When you see one clusterhead pushing a fellow clusterhead around in a wheelchair making their way through protesting mobs and armed guards, you know that they were there to make a difference, and to be heard! 

The AHDA ran a very well organized event.  In preparation for the Headache on the Hill event, they scheduled all appointments with state representatives, conducted an interactive informative webinar, and also held an interactive training session on the afternoon prior to our congressional meetings.  During this session, the presenters explained congressional operations and put attendee’s minds at ease by informing them what to expect when meeting with officials.  Handouts containing essential data and talking points to be conveyed to congress were distributed and discussed.   

Our mission on the Hill was twofold:

1.URGE CONGRESSIONAL HEARINGS ON HEADACHE DISORDERS.  We asked them to examine the personal, social, and economic burden of headache disorders resulting from the lack of adequate research and the need for effective treatments and specialty care.

•NO U.S. Congressional committee has EVER held a public hearing on headache disorders. 

•Cluster headache is reputed to be the most severe pain that humans can experience.  More than half of patients have recurrent thoughts of suicide.  Cluster headache is as prevalent as multiple sclerosis, yet the NIH has funded NO research on it in more than 25 years.

•Only 290 U.S. doctors are UCNS Board certified as specialty trained in Headache Medicine.

•Headache disorders lead to more than $31B in economic costs in the US annually, exceeding the estimated annual US costs of epilepsy, asthma and ovarian cancer combined.

•Over the past 50 years, only one innovative drug (sumatriptan), discovered and developed specifically for migraine, has been approved for clinical use after priority review by the FDA

2.Requested the Senate to RENEW RECENTLY CUT FUNDING IN A DEFENSE DEPARTMENT BUDGET that was for study of headache disorders.   

As budgets get cut, it is vital that we speak up and make “headache” research a priority!  Funding to study how fast and far shrimp can move on an underwater treadmill does not get cut, yet “headache” research gets cut early and often.  The difference?  How many and how loud the voices are that are walking up and down the halls of congress!  Hopefully, this trip helped put funding priorities into perspective.   

My personal schedule included the privilege of advocating with Aukosua Stokes, the manager of Public Policy from the National Headache Foundation. We visited all the senators and representatives from Illinois, including the office of Senator Mark Kirk who holds some very important positions in the Senate.  Although Senator Kirk was unable to attend due to a recent stroke, his staff expressed definite concern  regarding the neglect of headache disorders, which will be brought to the attention to the Senator.   

Additionally, I was able to meet with all of the representatives from Virginia, the state in which Clusterbusters is incorporated.

Over 150 representatives were visited and asked to recognize the need for further research funding and treatment options.   Along with all the facts and figures and personal stories we were able to present, some of us also used a short video clip of “Cluster Chuck” during one of his attacks. This was especially effective in getting the attention of the lawmakers.  Thank you, Chuck, for always allowing us to use your video.  It DOES make a difference! 

Most people in our group had written a short personal story of how clusters have affected their lives and the lives of their families.  These stories made a HUGE impact in D.C.!  We urge everyone to consider submitting their CH story, as Clusterbusters will compile these into a booklet form for presentation at future advocacy events.   These short stories (1000 words or less) are very moving as they help others better understand the impact cluster headaches have upon each of us and our families. You can PM me for details on guidelines.

In speaking with the attendees during and after the meetings on “The Hill”, it was clear that we made people sit up and take notice.  We ALL talk with people every day that say they wish they could do something. We were able to talk to people that CAN do something!  It was empowering for those with cluster headaches to have their concerns heard by people that have the power to make a difference.  People that can, and will, in the future speak for us to agencies like the FDA and the NIH and get people working for us.

The president of the AHDA, Dr. Robert Shapiro, repeatedly thanked Clusterbusters for our participation.  Concurrently, joining with those in the Alliance, gives everyone in the headache disorder world, a louder voice.  We all know and appreciate the differences between clusters and migraine, clusters and trigeminal neuralgia, clusters and the other 140+ different headache diagnoses.  But as many differences as there are, there are also many similarities. These similarities aid in research and finding effective treatments.

Another stop we (Clusterbusters) made while in DC, was a trip to an agency called SAMHSA. This was not part of the H.O.H schedule but was a Clusterbuster, Cluster Headache project.

This agency is the Substance Abuse and Mental Health Services Administration (http://www.samhsa.gov/).You may be asking why we would want to stop in there, but there are very good reasons to work with them. I will report on this meeting in a separate thread in this advocacy forum. Please watch for it to be posted as it will contain some very important and exciting information.

As to the event as a whole, I cannot thank Cindy Reynolds and Kaboom from our Advocacy Committee enough for all their work in putting this trip together. A lot of time and effort went into organizing and getting a dozen cluster people there, in cycle, on short notice, and being prepared to make an impression.  The coordination of something like this is very difficult and demanding.  If you know what it’s like to set up a short trip for your own family, try setting one up for 12 strangers from all over the US!  It’s difficult enough just to schedule meeting for coffee in the morning let alone a complex trip like this.  Thank you both very much.

I would also like to personally thank all the remaining members of the “D.C. Dozen” who spoke on behalf of all cluster headache sufferers:  Louise Barham, Adam Barham, Larry Schor, Charles Reibold, Lee Markins, Becky Ulissi, Billy McConnell, Eva Nemeth, and Crystal Smith.  Not only for what they did individually, but also for what they became as a group.  None of us are paid lobbyists or do this for a living.  It can be very intimidating to be walking the same halls that people like Lincoln, Roosevelt and Kennedy walked. The strength and determination that everyone pulled from each other was evident and it inspiring to see what people could do when surrounded by the support of a group.

This was our first event with the Alliance and I can tell you that no one can be prepared to meet a dozen, impassioned, dedicated, ready to be heard, card carrying cluster sufferers. We DO make an impression. Its one thing when we all get together at one of our cluster conventions. ItÂ’s something else when a cluster convention arrives at someone elseÂ’s party.

Those of us on Advocacy Committee could not have been more proud of everyone that came and represented people with cluster headaches.

This event was a HUGE success in bringing awareness to the severity of cluster headaches and the need for more funding for research and education! Thank you to everyone who attended, to those who signed the Alliance for Headache Disorders petition, and to those who make financial contributions which enable us to continue our advocacy efforts. With the help of OUCH and other individuals, Clusterbusters was able to supply some of the attendees with partial scholarships, allowing those that would not have been able to make it otherwise, able to afford the trip. If you missed "Headache on the Hill" this year, we hope to see you next year!

Bob Wold

HOH2012groupphoto3-27-12.jpg

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It was a little intimidating, but was very interesting the comments and responses that we received.

It was great meeting new sufferers. And I was very please that we were able to attend.

I would like to thank all that made it possible for us to go and for all the hard work that was done to get it off the ground.

Thank you

hugs and pf wishes to all

b

PS  I will try not to brake my ankle next year.

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I like that you inserted the angel emoticon Blue!

Their truly were CH  [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif]

amongst us that day! 

The incredible synchronicity of our event (angels among us) to what was occurring directly across the street from the Capital at the US Supreme Court couldn't have been more perfect!  The constitutionality of Obamacare arguments opened that morning! It's like the place was "a buzz" with Health Care issues and it was wonderful to not have a partisan issue!  In fact because headaches per se are a universal healthcare concern, I didn't even try to explain to the folks I met on Constitution Avenue how the word headache does very little to describe what we go through instead I just focused on saying "Cluster Headaches" to as many and as often as I could.

Inside the Capital, the feeling was electric and exciting.  I met the Foreign Minister who handled the Amanda Knox murder trial in Italy while ordering a wonderful stir-fry chicken curry for lunch.  I knew I was in a room filled with the lawmakers of our entire country and it just felt great to be there!

Just after I arrived at the Capital one of our CH advocates called to say she was separated from the group, had lost her appointment schedule and was running late.  At this point the group had split up to go to our individual meetings....I had know way of knowing what to tell her or how to fix this for her...  [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] [smiley=engel017.gif] As I sat in the Dirkson Building for Senators trying to figure out what to do my phone rang!  The Alliance coordinator who had everyone's schedule was calling to tell me that one of my meetings had been moved to a new office..."Did you get my email?" she said "I noticed you didn't open so I thought I'd call you".  SHE HAD EVERYONE'S SCHEDULE!!!!  I was able to call our CH advocate, give her the details of her schedule and I just knew it was going to be a great day!

It was!

It was a wonderful event, well managed and although a bit stressful the actual morning of the event, especially leaving the hotel and traveling on the subway to the Capital....but that's another story....lol

Bob Wold is a robust, compassionate, steadfast and determined leader.  We're blessed to have him at our helm!

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A huge thank you to Bob and all those involved in making this a success.  I can only imagine the amount of time and energy it took to put this together.  Your efforts are much appreciated.

J.

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Participating in "Headache on the Hill" did something I never expected - it softened my somewhat hardened attitude.  While it's true that referring to a cluster as a "headache" seems like such a downplay of our disorder, the fact remains that at this time our disorder IS referred to as a headache.  I'll admit that I have a bit of a chip on my shoulder when it comes to physicians... uneducated and/or haughty neurologists, numerous misdiagnoses, and countless ineffective treatments.  To my surprise, though, the majority of the AHDA board members are MD's and, as Bob mentioned, 25 MD's actually walked the halls of Congress right along with us.  This helped me to realize that there are many physicians who really do WANT to help us, however, their hands are tied due to limited research, education, and treatment options.

It was a privilege to meet and work with Dr. Shapiro of the AHDA.  Not only was he very appreciative of the participation of cluster headache sufferers, but he also took opportunities to met with Bob and I to discuss traditional and non traditional treatments that sufferers find effective, side effects of medications, and the impact this disorder has on our lives.  He listened as we shared concerns of cluster headaches sufferers and he offered suggestions of additional advocacy/education opportunities for Clusterbusters.  During Dr. Shapiro's appointment at the office of his congressman, Peter Welsh, he invited me to share CH facts and also my experience of living with CH.   

Understandably, not one of the six representatives I met with was familiar with cluster headaches.  They listened with concern about how cluster headaches impact sufferers - physically, mentally, financially, socially, etc..  They were very surprised at many of the facts presented - especially over the suicide rates, that there has never been a congressional hearing on headache disorders, and that NIH has not funded CH research in over 25 years.  The 3 minute video clip of Chuck having a CH did indeed make a HUGE impact on viewers!  (Thank you, Chuck!)                  

Without a doubt, collaborating with AHDA and other headache groups adds strength to our voice as we urge funding for research and effective treatments for cluster headaches.   Also, this collaboration opens up numerous networking opportunities to expand Clusterbusters education efforts, which in turn could generate interest for research and reduce diagnoses time.

It's such a pleasure and encouragement to meet up with others who have cluster headaches.  Sometimes on message boards or in support groups there seems to be some sort of invisible division between busters and non busters.  Our "D.C. Dozen" (busters and non-busters) saw the big picture - that we need CH research and EFFECTIVE treatments.  We had such an AMAZING group! 

Thank you, thank you, thank you to everyone who supported us by signing the petition and making financial donations!   

See you in VEGAS!!!

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Hi everyone,  This is Crystal S. I changed my User name email due to my accounts being hacked. This is my new info. Thanks to all and pf wishes.   :)

I am greatful that I was able to attend the Headache on the Hill event.  I met so many wonderful people and new friends :-)  I look forward to coming to future events and seeing everyone.   :)

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Psiloscribe

I know you are busy now with the Vegas trip right now. 

I am eagerly awaiting the expanded coverage of SAMHSA and hope to see it posted soon. As in when the next event is over and a happy memory!

thanks for all your work! :)

spiny

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