Migraine and headache sufferers - We're off to DC on your behalf!
We often discuss the need for better treament options for Migraine disease and headaches. Only ONE medication has ever been developed for Migraine prevention. Sansert was approved by the FDA in 1962, over 45 years ago, but has now been taken off the market. That leaves us with no medications developed for Migraine and headache prevention. Not one, yet we have seven triptans.
For quite some time, I didn't understand how or why that would be. Some people theorized that the pharmaceutical companies could "cure" Migraine disease, if they wanted to, but were making enough profit on medications such as triptans that they didn't want to produce the "cure." Although I can understand that line of thinking, that's not the case.
In a nutshell, I found that we owe our lack of effective treatments to lack of National Institutes of Health (NIH) research funding for Migraine disease and headache. Most disease research is funded by the NIH. Once that research is available, the pharmaceutical companies have a basis from which to develop treatments. That's why some people say that one medication and six "me-toos" - the triptans - have been developed for Migraine instead of multiple more unique medications.
Take a look at this excerpt from an editorial published in Headache: the Journal of Head and Face Pain:
- "Abundant evidence shows that the seminal studies that lead to innovative pharmaceuticals are most often performed in publicly-funded research laboratories, not those of the pharmaceutical industry. Federal funding of research on epilepsy has always hugely out-paced that for migraine. Over the past several years, mean annual NIH expenditures for epilepsy have been ~$101M compared to ~$13M for migraine, with a comparable disparity in funding every year since 1972 - the earliest year of available records for NIH grants.
What did the federal funding for epilepsy purchase? Fundamental research beginning in the 1970's led to the development of epilepsy animal models that enabled the screening of drugs for anti-convulsant properties. The NIH then funded and provided oversight of this program of accelerated screening of compounds developed by academia and industry. Thirty years later, patients with epilepsy have a considerably wider set of therapeutic options.
Headache medicine is also on the threshold of new insights into the pathogenesis of the primary headache disorders. Animal models relevant to drug screening are beginning to appear. What is needed now is a commitment to headache medicine from federal agencies similar to that which has been appropriately extended to epilepsy... Based on the example of the epilepsies, real benefits will likely be felt by headache patients over time in the form of improved access to specialty care and the development of novel effective therapies."(see link to the full editorial below)
Do I hear someone asking, "So, when is someone going to do something about this issue?" The answer to that question is ... Now.
Allow me to lay it out for you with answers to the questions journalists are trained to ask:
What: An advocacy program called Headache on the Hill (HOH).
When: Next Tuesday and Wednesday, September 25th and 26th.
Where: Capitol Hill, Washington, DC.
How: With the support of the American Headache Society, The American Academy of Neurology, the NHF, MAGNUM, and the HealthCentral Network, we will each be meeting with both of our Senators and representative in the House of Representatives. Some of us will also be meeting with Senators and Members of the House that represent states other than our own. We will be giving our members of Congress the information they need to understand just how underfunded NIH Migraine and headache research is and why it's important to increase that funding.
Why: Because we're tired of the suffering that could be helped through more and better research. Because research funding is disporportionate to the number of people affected and the disability, years lived with disability, loss of life, loss of income, and lowered quality of life that Migraine and headache disorders cause in comparison to other diseases.
This project is going to be neither easy nor short-term. We're in this for the long haul. Some of you have asked me what you can do to help. Believe me, I will be calling on you to help. Every voice must be heard in order for this endeavor to succeed.
Sometime in 2008, I will be calling on each of you to participate by sending emails and / or letters to those who represent you in the Senate and the House. We're setting up a Web site that will make it easy for you.
I'll post to you next week from DC to let you know how things are going and, hopefully, share some photographs.
In the meantime, I hope you'll take a few minutes to do a bit of reading:
- NIH Funding for Research on Headache Disorders: Does it matter? from Headache: The Journal of Head and Face Pain, by Dr. Robert E. Shapiro.
- The long drought: the dearth of public funding for headache research. from Cephalalgia. by Dr. Robert E. Shapiro and Dr. Peter J. Goadsby.
- Letter of support from the World Health Organization (WHO)
Wishing you a pain-free weekend,
The generally long periods of time between my Migraines are the result of working with a Migraine specialist to refine my preventive regimen. You can see my current regimen HERE.