IHS Global Patient Advocacy Coalition (IHS-GPAC)

Background

The International Headache Society Global Patient Advocacy Coalition (IHS-GPAC) was formed to unify professional societies and patient advocacies around the world and leverage collective resources to drive meaningful change in migraine patient care. Ultimately, IHS-GPAC aims to reach health care providers, employers, policymakers, people living with migraine and those around them to drive recognition of the impact of migraine and other headache disorders on the individual and society.

 IHS-GPAC was born out of the hugely successful 1st Global Patient Advocacy Symposium (GPAS) held in Vancouver, Canada, in September 2017, which brought together patients, patient advocates, patient advocacy organizations, healthcare professionals, the world’s leading professional neurology, headache, and pain societies, the World Health Organization (WHO), pharmaceutical and device manufacturers, scientists, and regulatory agencies with the goal of understanding and advancing issues that are important to people with headache worldwide.

Group photo of Vancouver GPAS attendees
GPAS I delegates, Vancouver, September 2017

Following GPAS, the Vancouver Declaration on Global Headache Patient Advocacy was published in Cephalalgia. This advocacy blueprint established benchmarks and a commitment to destigmatize headache disorders, facilitate awareness and policy development to improve the diagnosis and care for those with headache disorders across the globe, and promote the global, regional, and local interests of people with headache disorders.

In September 2019, the second Global Patient Advocacy Summit (GPAS-II) was convened at the IHC Congress in Dublin Ireland to revisit issues from the inaugural GPAS meeting, assess the progress of IHS-GPAC and discuss strategies for achieving established goals and supporting future development.

Group photo of Dublin GPAS II delegates
GPAS II delegates, Dublin, September 2019

The coalition celebrated its collaboration with the World Federation of Neurology in dedicating World Brain Day 2019 to Migraine, and its achievement in many of the goals established at the first GPAS.

Logo for world brain day
World Brain day logo, 2019

It also committed to initiating a global strategy focused on the psychosocial and economic toll of headache disorders, especially migraine, in the workplace. Ongoing and future activities will explore a range of opportunities with employers and across the full spectrum of advocacy goals. The proceedings of GPAS-II was memorialized in the publication of the Vancouver Declaration II on Global Headache Patient Advocacy 2019.

Mission

The mission of IHS-GPAC is to help implement optimal standards of care for those affected by migraine and other headache disorders and raise awareness of their impact on individuals and society. Its current activities are focused on engaging and partnering with global employers to raise awareness of and reduce the stigma surrounding migraine and other headache disorders, while providing education, resources and workplace initiatives for employers and employees that will provide care for those in need and improve quality of life for those impacted. Ultimately the resources and key learnings from these initiatives will be used to engage local advocates in regions around the world to implement similar workplace programs with local employers.

Patient advocacy through IHS-GPAC will continue to be a major part of the Society’s work to ensure appropriate urgency is given to raising awareness of migraine and headache as serious disorders that is recognized worldwide. Migraine and other headache diseases contribute around 17% to the global burden of neurologic diseases, with migraine the second most disabling disorder overall. To realize this strategy, IHS-GPAC is grateful for the generous financial support from industry partners and operational support from the American Migraine Foundation.

To learn more about IHS-GPAC and the work of the Coalition please visit the IHS-GPAC website