American Migraine Foundation at the First-Ever Global Patient Advocacy Summit

AMF joined dozens of patient-focused advocacy organizations in an unprecedented meeting of headache leaders to prioritize care

For the first time in the history of headache medicine, the top representatives from 49 International Headache Society member groups gathered in early September for a one-day summit to identify the most essential global goals for the field with an emphasis on patient support. The Global Patient Advocacy Summit (GPAS), held on Sept. 6, 2017, represented a groundbreaking interdisciplinary effort between doctors, researchers, government agencies and patient advocates to design a blueprint to close gaps in headache diagnosis, research and treatment.

“Individuals living with migraine bear multiple burdens. Not only is their disease potentially debilitating, it’s also invisible, misunderstood and deprived of the necessary investment in research that’s proportional to its devastating scope,” said Dr. David Dodick, Board President of the American Migraine Foundation. “The Global Patient Advocacy Summit represents a focused, organic partnership between doctors, patients and public health organizations to rectify that inequity, and make progress in the field of headache medicine.”

Understanding the Pain of Migraine with Migraine

Through a series of panels and interorganizational sessions, the goal of the one-day summit was to identify opportunities for patient advocacy around the globe, and the avenues by which leading professional medical societies, patient advocacy groups, and thought-leaders in headache medicine can help facilitate and support these efforts. Participating organizations include the World Health Organization, the U.S. Food and Drug Administration, various nonprofit organizations such as the American Migraine Foundation, American Headache Society, American Academy of Neurology and other leading patient advocacy groups and national medical agencies from around the globe.

“There is a staggering 37 million people living with migraine in the United States alone. Many of those people have never had their symptoms taken seriously or even addressed by a headache specialist,” said Meghan Buzby, Executive Director of the American Migraine Foundation. “The more resources we can dedicate to education and driving public awareness, the more effective we will be at giving millions of people the tools they desperately need to advocate for their health and overall well-being.”

Identifying an Epidemic

Migraine is the third most prevalent and sixth most disabling medical illness in the world. Despite the more than 1 billion people affected by migraine around the globe, it is vastly underrecognized and undertreated, and there remains tremendous disparity in patient access to education, healthcare services, and drug, device, and non-pharmacological treatments. The risk of other serious diseases is significantly higher in those with migraine, including stroke, epilepsy, depression, anxiety and chronic pain. Despite this, only one of every three people talk with a doctor about their migraine attacks and of those, only half get the right diagnosis. There is also a massive shortage of specialists focusing on migraine, with one specialist for every 65,000 individuals living with migraine, which worsens the problem.

Goals for the Future

In addition to patient advocacy, one of the key meeting initiatives was to identify mechanisms to expand and improve patient access to healthcare services and treatment. New research has led to the development of groundbreaking therapies that could change the lives of millions of migraine patients  around the world. Still, a disproportionate lack of funding relative to the disease’s prevalence and its overall economic burden directly impacts access to patient care. In an effort to change the conversation, summit attendees were asked to form the new Global Patient Advocacy Coalition (GPAC) to continue to advance patient advocacy initiatives. Objectives of GPAC includes country-specific research surrounding the formation of a global approach to migraine advocacy, resource allocation to develop local outreach, evaluation of local initiatives, refinement of tactics and a needs assessment.

“Being part of the global fight to give migraine and other headache disorders the attention it deserves is something the American Migraine Foundation is incredibly proud of,” says Buzby. “We look forward to continuing to lead the charge in a patient-centric approach to treatment, research and advocacy.”

For updates on this and other advancements in the fight against migraine, plus additional resources with information and support for people with migraine, visit the American Migraine Foundation website and resource library.