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Posts Tagged ‘disease burden’

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)