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Headache on the Hill
February 25th, 2009
I spent the day yesterday doing something I’ve never done before - lobbying Congress. I’m not entirely sure I would ever have predicted that I would lobby Congress. It was a great experience, and one that I’m sure will take me several posts to process and tell you about. But I can at least get started. The Alliance for Headache Disorders Advocacy (ADHA) is a wonderful group of doctors, advocates, writers and researchers who are fighting for better headache care for YOU. I arrived in DC on Monday for a training session put on by the AHDA and learned some key things about the underfunding of Migraine and headache disorders research, and about how to lobby.
Nearly 40 of us spent Tuesday on Capitol Hill speaking to legislators and legislative aides. I visited two senators and three congressmen from my state, along with another Migraine sufferer. We were requesting that they add language to the 2010 appropriations bill which will direct the National Institutes of Health (NIH) to spend a larger share of their funds on Migraine and Headache Disorder research.
Here are some of the things I learned, straight from the AHDA fact sheet which we shared with the legislative aides:
Headache Disorders are the most prevalent neurological disorders. This year:
- More than 25% of middle aged American women will have a Migraine attack.
- 25% of American families will have a member with a Migraine attack.
- 19% of all Iraq war veterans will have a Migraine attack.
- 12% of all Americans will have a Migraine attack.
- 4% of all Americans will have chronic daily headache.
US costs for headache disorders this year will be:
- greater than $31 billion in total economic losses.
- 9% of all lost labor productivity.
- greater than the costs due to epilepsy, asthma and ovarian cancer combined.
Migraine is extremely disabling, resulting in:
- attacks that can be as disabling as quadriplegia or active psychosis.
- more lost years of healthy life in the US than due to epilepsy, multiple sclerosis, and ovarian cancer combined.
- an increased risk of cardiovascular disease leading to at least 1500 additional deaths in the US annually.
What has the response of the NIH been so far? The NIH is responsible for funding, with our taxpayer dollars, the basic research that makes medical innovation possible. So far the NIH funding for research on headache disorders is less than $13 million annually which comes to less than 0.05% of the NIH budget. Research of NIH funding relative to disease burdens (the impact of a disease on society, including prevalence, economics, disability, and mortality, as discussed above), shows that a fair share of funds for headache disorders (compared to other diseases with similar disease burdens) should be at least $103 million annually.
We got a good reception, particularly from our senators’ aides. There is more work to do, but I think we are making an impact. You can make an impact too. Go to the ADHA site and sign up for their action alerts. On Monday, March 2 we will be asking you to email your congressional representatives, asking them to sign on to the language directing the NIH to do the right thing with regard to headache disorders. If you sign up for AHDA action alerts today, taking action next week will be as easy as a couple of clicks.
- Megan
We can make a difference!
US Capitol image courtesy of Kim Baker.
Tags: AHDA, Alliance for Headache Disorders Advocacy, Chronic Daily Headache, disability, disease burden, headache disorders, migraine
Posted in Advocacy, Current Affairs, Medicine, Science, Uncategorized | Comments (9)
9 Responses to “Headache on the Hill”
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February 25th, 2009 at 11:45 pm
Thank you for what you are doing!! I am a daily migraine sufferer and I am so thankful for people like you who are doing something about this illness!!
February 26th, 2009 at 12:23 am
Thanks for advocating on our behalf! And thanks for the link to the AHDA - I had meant to check them out and get on their email list long ago, but this gave me the incentive to so immediately. Best of luck in any further lobbying!
February 26th, 2009 at 1:53 pm
Great post, Megs! I’m so happy you were able to go! We do need more funding!! The more active we get - the more awareness we will bring!
Please! Everyone! Sign up at the AHDA website for action alerts! Click the link in Megans post! We WILL make a difference!!!
Thanks Megs! You rock girl!
February 26th, 2009 at 4:11 pm
This is awesome! Thanks Megan!
February 27th, 2009 at 6:46 am
Thank you for the great post. I just mentioned it on my blog. I’m so thankful you are advocating for us!
March 2nd, 2009 at 4:29 pm
[...] you read my post about Headache on the Hill last week (or even if you didn’t but you’re keeping current in the world of Migraine [...]
May 8th, 2009 at 1:23 pm
[...] The National Headache Foundation has a great idea. There are at least 36 million Americans who suffer from Migraine disaease. (Yes, look around. That’s one out of every 12 people you know!) If just one million of us gave a dollar each, that would raise a Million dollars for Migraine research! Did I mention that Migraine research is so underfunded that the research is about 30 years behind any other major disease that impacts this many people? Yes, I did, but that’s okay, I’ll mention it again. Please go back and read what we were lobbying for at Headache on the Hill. [...]
October 24th, 2009 at 4:32 pm
[...] be going to the Alliance for Headache Disorders Advocacy’s third Headache on the Hill day of advocacy in February, and these books sent to Congress beforehand will help raise awareness [...]
November 21st, 2009 at 9:57 pm
Thanks for all that you are doing. I have many patients that come to me for their migraine headaches.