Welcome to HeadNotes.

Welcome to HeadNotes, the AHDA blog intended to keep you informed of developments in advocacy for patients with headache disorders and for the field of headache medicine. We hope that this blog will also allow you to keep us informed about your own advocacy concerns. Please let us know what's on your mind.

AHDA is a small and growing organization, but we are committed to making a big difference for all those suffering from headache disorders. Because of current very limited resources, we have chosen to focus our efforts initially on correcting the extreme shortfall in federal funding for research on headache disorders. We firmly believe that this is the most important area where our efforts are likely to translate into new and effective therapies. It is also an area where we can make clear and quantifiable requests for more funding based on objective measures of federal neglect of these disorders.

In order to be able to determine whether our efforts are really making a difference, one of the key short term goals of the AHDA has been to improve the transparency of NIH funding for research on headache disorders. The NIH reports annually on research expenditures for only 215 diseases, conditions, and categories. By contrast, there are more than 150,000 possible disease categories. The NIH has strongly resisted adding new reporting categories over the past decade, in spite of recently implementing a new reporting mechanism called the RCDC http://report.nih.gov/rcdc/categories/.  

 

During the first Headache on the Hill event in September 2007, AHDA sought to add "headache disorders" and "migraine" to the NIH list of reported categories and we successfully advocated to include a specific request for these additions in the fiscal year 2009 House Appropriations Committee report. Furthermore, and crucially, AHDA website activists, like you, sent more than 3300 emails to more than 80% of congressional offices over the past year in support of these initiatives.

Well, you made a real difference with your participation. As a direct result of AHDA efforts, ‘Headache and Migraine Disorders’ has now been added as a new category to the RCDC. Reporting will begin in approximately a year, and we will then finally have a yardstick for measuring the true impact of any new NIH programs related to headache disorders.

 

Many thanks to the huge number of people who contributed to this success. It is a critically important development, though admittedly it may seem small and incremental. Realistically, advocacy progress is often like this. The key to success is to keep our focus, be persistent, and, most importantly, to grow our voice. So, if you have friends who have migraine or family members with migraine or other headache disorders, tell them about our website and ask them to subscribe to our action alerts. Also, ask them to ask their friends to sign-up too. When the time is right we will be asking for your essential help once again to contact your members of Congress.  

Correcting the neglect of patients with disabling headache disorders will certainly be a long and sometimes frustrating process. But we will persist and I'm confident that we will prevail.  We are already on our way. Check back to HeadNotes often for updates on our progress.

Thank you all once again for joining us in this important effort.

Best regards,

Bob Shapiro
President AHDA

Comments

[Bray Patrick-Lake]

Thank you for all of your hard work and for helping give migraineurs a voice!

[Bob Shapiro]

Thanks, Bray. I look forward to working with you on these issues. - Bob

[Betsy Blondin]

I have and will pass the word! I'm grateful for all of you and your efforts. And I sent copies of Migraine Expressions to Cindy McCain and Story Landis (NIH), hoping that the book can play some role in the awareness and advocacy efforts! Will continue to do whatever I can. -Betsy

[Robert Shapiro]

Thanks very much, Betsy. - Bob

[Nancy Bonk]

Excellent, Bob. I think the future holds great things for Migraine & headache patients and doctors alike.

Thank you for all your tireless work.

Nancy

[Robert Shapiro]

Nancy

Thanks for all your efforts too!

Bob

[Megan Oltman]

So glad AHDA has found this voice on line, and we can point people to the very real progress that has been made. Thanks, Bob, and everyone, for all your efforts!
- Megan
http:\\freemybrain.com