While I was attending Headache on the Hill and the 53rd Annual American Headache Society Meeting in Washington, DC, my attention and nationwide media coverage shifted to the weekend bike race taking a place across the country. Several of my friends were riding in the MS150, a widely publicized event raising money for multiple sclerosis. While I know only one person who suffers from MS, I am personally asked each year to support this cause and I do, not because MS affects my life but because my friends ask me to donate. Then it occurred to me that I have never asked a friend to donate to the cause of migraine research nor have I ever participated in a large-scale fundraising event for headache disorders even though I am a very active advocate. This got me thinking about how we can become more successful and effective at supporting the headache disorder cause.
According to the National Multiple Sclerosis Society, approximately 400,000 Americans have MS, and every week about 200 people are diagnosed. World-wide, MS affects about 2.5 million people. In America alone, 60 million people are believed to be affected by migraine so why is there such a disparity in attention and support for these diseases? I believe the responsibility resides squarely on the shoulders of patients like myself, as well as physicians caring for patients with headache disorders. That’s right, people like you and me are to blame. I’ve arrived at this conclusion after listening to and participating in discussions over the last several years regarding how we can best champion the headache disorder cause. While some of the talk in my opinion is not much more than finger-pointing, whining and complaining, some of the more uncomfortable points have validity. Collectively, we have not pulled together to the best of our abilities to solve these problems nor have we maximally fulfilled each of our roles.
As patients, we have not done a good job of imploring those around us to take up our cause, nor have we effectively taken up our own cause. When was the last time you donated to a headache organization or asked someone to make a donation on your behalf? Have you ever attended a conference for patients with headache disorders? When calls to action for advocacy alerts go out from Alliance for Headache Disorders Advocacy with forms that take approximately 1 - 2 minutes to complete, a scant 1,000 – 2,000 people respond, and the largest headache organization in the US has a mailing list of only 16,000 supporters. When we know millions of patients are suffering, the dismally low numbers of those responding or participating are very discouraging to the physicians, researchers, and patient advocates working hard to make positive changes for us all and I dare say I understand why we are not making more progress. Patients can do much more, despite our illness, to support the organizations that have formed to provide patient education, advocate or support research on our behalf. We can also do much more to involve our friends and families in awareness, fundraising, and advocacy activities. We can and should hold each other accountable. Diseases with many fewer patients have hundreds of thousands more people supporting their cause. So what do we have to say for ourselves? Every single one of us has some way in which we can contribute no matter how small. We cannot let our illness and disabilities serve as an excuse for complacency and inaction. What we have now is not good enough, and it is time we change that.
On the physician side, we patients would ask that you see your patients as extremely capable and necessary champions of your work. We ask that you not write us off as being too sick to shoulder the burden with you, even though you see us at our lowest moments. Additionally, when we are too ill to manage our daily lives or forward the headache disorder cause those standing helplessly by our sides would feel empowered if called upon to take action on our behalf. Please remember each patient has at least one if not more persons in their lives that are suffering along side them and feeling powerless over a disease. Give these caregivers and family members direction and connect them with appropriate resources so they too may become champions of the cause, just as you should each patient coming into your practice. As for researchers, keep sending out announcements about your work, and don’t forget to send them to online patient groups. We need to hear about your ongoing good work to keep headache disorders in the headlines. And any one of these groups can write a blog and help shine a light on the cause from our varying perspectives.
The next order of business is to collaborate, collaborate, collaborate! I am proud to serve on the board for the Alliance for Headache Disorders Advocacy because we are comprised of ten different organizations working on various areas of the headache disorder issue, but yet we all come together with our resources to bear once a year to support legislative actions that forward the headache disorder cause for all. I challenge us to do this more often. I believe we need more collaboration, and I urge us to draft a 10-year strategic plan to end the suffering from headache disorders outlining the roles individuals and organizations can play. There is room at the table for each one of us and a strategic plan to end the suffering from headache disorders in the US could benefit us all no matter what our interests.
If you have not already done so, please connect with a headache organization of your choosing. The mission statements and contact information are listed below. Patients, each one of us needs to do our part if we want our treatments and futures as headache patients to improve. Physicians, believe in us, see us a valuable partners in this cause, and be sure anyone coming into your office gets connected to a headache organization. Please also consider contacting AHDA about writing a blog for the cause. We need to hear from you!
Together we can make a difference much faster than any of us going it alone!
- Alliance for Headache Disorders Advocacy is comprised of nonprofit organizations who are vitally concerned about the health of patients with headache disorders including migraine disease, cluster headaches, chronic daily headache, new daily persistent headache, tension-type headaches. All headache disorders. The AHDA is dedicated to advocacy efforts that can result in better treatment for all headache disorder patients. http://www.allianceforheadacheadvocacy.org
- American Migraine Foundation’s mission is to support innovative research that will lead to improvement in the lives of those who suffer from migraine and other disabling headaches. http://www.americanmigrainefoundation.org
- Migraine Research Foundation is dedicated to ending the debilitating pain of migraine. We fund innovative research to further the understanding of the causes and mechanisms of migraine, to develop improved treatments for sufferers, and to find the cure. http://www.migraineresearchfoundation.org
- Miles for Migraine is a concerned group of medical, allied health, and laypersons who have recently formed a non-profit group to inform the public about the serious underfunding for research in the prevention, causes, treatment, and cure of headache disorders, provide website links about various headache organizations for further information, and create a fun outdoor event that especially welcomes those who suffer from headache disorders, and their families, friends, and all those who support them through their pain. http://www.milesformigraine.org
- National Headache Foundation exists to enhance the healthcare of headache sufferers. It is a source of help to sufferers’ families, physicians who treat headache sufferers, allied healthcare professionals and to the public. The NHF accomplishes its mission by providing educational and informational resources, supporting headache research and advocating for the understanding of headache as a legitimate neurobiological disease. http://www.headaches.org
Bray Patrick-Lake| President and CEO
PFO Research Foundation
www.pforesearch.org
Excellent points. It would be nice to see patients doing more to raise funds for research and advocacy, and to raise awareness. I would also like to see an organization really reaching out to the patients with the expectation that we are welcome and competent to participate in organization and advocacy for the cause.
In general, I think headache sufferers have taken to heart the message of many in the public and even in health care that "it's just a headache, take some aspirin". When even the medical community at large (with the exception of our devoted headache specialists of course) does not view us as a group deserving of engaged, well-researched, competent care it is hard to believe it ourselves let alone go out and convince our friends, families, doctors, and congressmen of the fact.
Posted by: Cristy | 06/13/2011 at 01:27 PM
Perhaps more patients don't advocate because unlike MS or Cancer they spent years fighting just to be treated and believed by their doctors, and we have been hiding our condition from employers and friends and even family to have some kind of life.
I'm 50 and for most of my life migraine was not recognized as a legitimate illness and often stigmatized as similar to mental illness. Patients were described as having Type A personalities and if they would just relax the problem would resolve. This belittling of the condition by the medical profession, which still occurs for many patients, does not help patients speak out and advocate. Most GP's and internists are still badly misinformed about what migraine is and it's severity. I still hear of fellow sufferers being told to simply use over the counter NSAIDs and that they just have to live with it, particularly if they are women. It's only recently that I can "come out" as a migraineur and not fear losing my job, that the evidence exists in a broad enough context for people to understand the condition is real. A disservice is also being done by referring to the problem primarily as headache. My most disabling chronic symptoms are not headache though I get those to. The medical profession and med schools need to do a lot better job education doctors and listening to patients. It wouldn't take much to get them to really speak out. As a lay person I ran a support group for migraineurs in the 80s when no one in medicine would listen. Doctors must look to their own treatment and often contempt for migraineurs if they want to know why we aren't empowered to speak out.
Posted by: Michelle | 09/01/2011 at 03:43 PM
Thanks for the article Bray. You are dead right. This affects more people than most illnesses and needs to be addressed.
Posted by: Jill Kay | 10/04/2011 at 01:58 PM