Global Patient Advocacy Committee
GPAC = Global Patient Advocacy Committee
People working together to improve migraine care and understanding.
GPAC is a group of physicians, patient advocates and representants from institutions, associations and industries related to the migraine field. Countries represented included Brazil, Japan, Spain, Italy, France, US, UK, Australia, Austria…and of course Canada!
We met in New-York in October for 2 days of workshops. What do people with migraine need? People with migraine need many things : better access to care, better treatments, better information, better recognition and support. How can we improve the situation, worldwide, for the most people? 15% of the world population suffers from migraine, to different degrees.
Every other neurological disorder is represented by patient associations, but not migraine, at least not in many countries. Why? One can think about the stigma, the disability, the lack of recognition of this major health condition. «It’s all I your head, so why should we invest for your care? It’s ONLY migraine». With such a stigma, it’s not easy for a person with migraine to speak up. Can we do something about it?
During these two days, we shared, discussed and set up goals. We talked about our experiences: structures, websites, lobbies, health care systems, employers, research. The next step: innovative pilot projects that could be duplicated in many countries. A website? A forum? A Migraine bus Tour? A Migraine Café? A Migraine Support Group Policy? An Employer’s Migraine Toolkit?
Can physicians and patients work together? Can we setup powerful associations able to influence policymakers, academic institutions and employers? I certainly hope so. But one of the things that was discussed was that patients do not seem to trust physicians. And physicians are not too sure how to engage patients. We MUST start this conversation, and move for «medical patriarchy» to patient autonomy and collaboration!
GPAC analyzed the advocacy situation in different countries. Advanced countries included UK, USA, Australia. Advancing countries included Spain, Italy and France. Canada was… a developing country! Migraine Canada is just starting. We just got registered as a not-for-profit. We have a small board. We need more players.
What can YOU do to help? Spread the word. Share your thoughts. We will soon need volunteers. If you have particular skills (media management, communication, bookkeeping, fundraising, strategic planning) please contact us!
The key take home is: you are NOT alone! There are people out there working for you. And soon, we will be working WITH you.
Stay Tuned!
Dr Elizabeth Leroux, MD, FRCPC, neurologist, headache expert and patient advocate.
This is with regards to the Global Patient Advocacy Committee’s findings. I just learned about this Migraine Canada through the Dr. Dodick video on Migraine World Summit. I have been eagerly looking for opportunities to get more involved in Migraine Advocacy in Canada. I am currently a volunteer with the Migraine World Summit as a Community Support Ambassador and feel so honoured to be a part of this incredible organization and helping those with Migraine around the world.
I have sought the support of my neurologist in starting a Patient Advocacy Group in Ottawa. He felt that by speaking out as a patient, doctors would be resistant to ideas. I understand his concerns but I also believe there are doctors that are willing to work with those that have Migraine and support advocacy. I initially and particularly wanted to address and create a plan to help those that have to go to Emergency. Like so many others, a trip to Emergency is humiliating and often does not end the pain. A standardized letter, outlining the diagnosis and ideal treatment would greatly reduce the concern of the medical profession and the fear of humiliation, and poor treatment for persons with Migraine.
I took early retirement from teaching and currently volunteer with two organizations. I am very passionate and committed to assisting those with Migraine, Cluster and Chronic Pain get the tools they need to manage their pain. Over the years, I have reduced my pain days and intensity through a multi-modal approach. I do believe that while we anticipate advances in the medicine, there are strategies that can reduce our pain and increase our ability to cope.
I have a science degree and strong research skills. As a teacher and Youth and Child Care Worker, I have developed strategies for working and sharing ideas across a wide group of interests and disciplines. I am willing to learn and have quickly picked up the skills needed to work with the online tools used by CSA team as Migraine World Summit.
I look forward to finding a way to support your organization in supporting those of us with Migraine. Canada should not be a ‘developing country’ in terms of Migraine Advocacy. Including patients, like me, in Migraine Canada and supporting our efforts to grow Migraine Advocacy would be a good step to improving patient-doctor relations and reducing the stigma.