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.
Dr Elizabeth Leroux, MD, FRCPC, neurologist, headache expert and patient advocate.