ADVOCACY ACTIVITY

EVENTS & MEETINGS

Those who have attended the Migraine World Summit know that migraine is grossly underfunded and dismissed by many. Migraine and headache advocacy is one of the most important roles that Carl, Paula and Karl perform.

This year has been a busy year for migraine and headache advocacy. Carl, Paula and Karl have all attended several events, medical conferences, and government forums that bring together stakeholders and experts in the field. We can often feel isolated with migraine and overwhelmed with hopelessness when we don’t know about all the progress and activities that are happening – often behind the scenes.

Rest assured, there are many dedicated and persistent people working to improve the lives of those with migraine and headache disorders. Progress is being made, but there is still a long way to go. Events included:

  • Headache on the Hill
  • ICER Hearings on CGRP Access
  • European Migraine and Headache Alliance
  • CHAMP Meeting(s)
  • European Headache Federation Congress
  • National Migraine & Headache Awareness Month
  • American Headache Society Annual Scientific Meeting
  • ANZ Headache Masterclass
  • National Health Research Forum
  • Headache and Migraine Awareness Week (AU)
  • IHS Global Patient Advocacy Coalition
  • Parliamentary Friends of Medicine (AU)

See below for details.


Headache on the Hill – February 2018

Paula Dumas and husband Karl Dumas at Headache on the Hill in Washington DC. They charged the Hill along with 153 fellow advocates lobbying for a bipartisan bill to fund better pain research at the National Institutes of Health (NIH) – which helps the 1 in 3 people in the United States living in chronic pain. Karl Dumas is an incredibly supportive husband and is also a leader behind the scenes at the Migraine World Summit.


European Migraine and Headache Alliance – May 2018

Carl Cincinnato attended the European Migraine & Headache Alliance (EMHA), a nonprofit umbrella organization comprised of mostly European members. Carl represented Australia at the meeting along with dozens of other patient organizations and countries. The EMHA’s aim is to give visibility to headache disorders, voice the concerns of headache patients, inform policy makers, and partner and support national advocacy groups. Learn more about the EMHA on their website.


ICER Hearings June 2018

Paula Dumas was one of the select few patient advocates who had the opportunity to speak to ICER directly about the importance of making the new category of CGRP treatments available to all. Her input along with other patient advocates and experts at the meeting played a critical role in determining the price and insurance coverage of this new category of treatments.


CHAMP Meeting – June 2018

The Coalition for Headache And Migraine Patients (CHAMP) was established to support those with migraine, headache, and cluster disease who are often stigmatized and under-served. In June 2018, CHAMP held a meeting in San Francisco where a number of patient advocates attended, including Carl Cincinnato, Paula and Karl Dumas. They discussed current challenges and received PR strategy and media training. See all their members and learn more at CHAMP’s website.


National Migraine & Headache Awareness Month (USA) – June 2018

Each year in June is National Migraine & Headache Awareness Month. Multiple foundations, charities and advocates rally together to improve public knowledge, address stigma, and strengthen the patient community. This year there were a number of events, campaigns, and activities during the month. Events included:

June 1 – You Are Not Alone (NHF Program Launch)
June 2 – Light Up The Landmarks
June 4 – Headache Diseases in the Workplace (First Monday of Month)
June 5 – INvisible Project (Sharing Personal Stories)
June 6 – Veterans & Headache Diseases (D-Day)
June 7 – Remembrance (Honoring Those We’ve Lost)
June 8 – Health Care Provider Appreciation
June 10 – Moving for Headache Prevention (Miles for Migraine, Runnin’ For Research & Cure for Cluster)
June 11 – Disability & Headache Diseases
June 13 – Headache Advocacy (HMPF Advocacy Event)
June 15 – Cluster Awareness
June 16 – Hemiplegic Migraine Awareness (Start of Second Half of Month)
June 17 – Men & Headache Diseases (Father’s Day)
June 19 – Pediatric Headache Awareness
June 21 – Shades for Migraine World Migraine Solidarity Day (Summer Solstice)
June 23 – Low Pressure Headache Awareness
June 25 – Survivors (Recognizing Mental Health and Suicidality Related to Headache Diseases)
June 28 – Headache Disease Research (Start of AHS Scientific Meeting)
June 29 – Chronic Migraine Awareness
June 30 – Caregiver Appreciation


American Headache Society Annual Scientific Meeting – June 2018

Carl Cincinnato, Paula Dumas, and Karl Dumas attended the 60th Annual Meeting of the American Headache Society held in San Francisco. In attendance were almost 1,000 neurologists, GPs, headache specialists, nurses, researchers, and academics whose primary focus is headache. As at every medical conference, we learned a lot about the latest research, studies, findings, treatments and best practices from the US and from around the world.


ANZ Headache Masterclass – August 2018

In Sydney, Australia, Carl Cincinnato had the rare opportunity to attend a regional masterclass on migraine run by the International Headache Society and hosted by the Australian and New Zealand Headache Society. Approximately 150 experts, doctors and specialists attended from Australia, New Zealand and the Asian region to learn from world leaders in headache. Among the speakers and special international guests were Dr. David Dodick, Dr. Peter Goadsby, Dr. Allan Purdy and Dr. Anne MacGregor, all of whom have spoken at the Migraine World Summit.


Pharmacy Quality Alliance Roundtable – September 2018

Paula Dumas was invited to collaborate with headache specialists and Medicare/Medicaid experts on ways to remove obstacles to patient care and improve outcomes.


Brain Health Panel Speaker- September 2018

Paula Dumas spoke on behalf of the migraine community at the National Health Research Forum in Washington, DC, presented by ResearchAmerica! It was a unique opportunity to raise awareness among policy leaders and fellow panelists Francis Collins MD, Director of National Institute of Health (NIH) and France Cordova PhD, Director of the National Science Foundation (NSF).


European Headache Federation Congress – September 2018

Paula Dumas presented a poster on the CaMEO research study which she co-authored Professor Dawn Buse. The research studied the impact of migraine with a particular focus on migraine in the workplace. The leadership team of Paula, Carl and Karl all attended the European Headache Congress in Florence to hear some of the top European experts in the headache field share their latest work, research and best practices.


Headache and Migraine Awareness Week (Australia) – September 2018

Carl, who also works at Headache Australia, a national nonprofit, helped facilitate live in-person public seminars for headache and migraine patients across the country. Around 500 people attended live events and over 4,000 participated online nationwide during the week. Patients, care givers and family members were given the opportunity to learn from local headache specialists and ask questions.

Headache Australia provides support, research, advocacy and information to the 5 million Australians living with headache disorders.


Global Patient Advocacy Coalition – October 2018

A Global Patient Advocacy Coalition (GPAC) has been put together as a special working group under the International Headache Society. This is a cross-functional group of patient advocates, doctors, specialists, industry stakeholders, patient organizations, and groups like the World Health Organization and the World Federation of Neurology. The Migraine World Summit is a coalition member and Carl Cincinnato attended the recent meeting New York. The coalition’s goal is to provide tools, resources, and best practices for advocacy efforts around the world. Work has just begun and more will be happening soon.


Parliamentary Friends of Medicine (Australia)- October 2018

Carl and the team from Headache Australia participated in the launch of a government advocacy engagement event in Australia’s capital city, Canberra. Deloitte published a Whitepaper called “Migraine in Australia” which revealed the staggering toll of migraine in country. More than 4.9 million Australians, over 20% of the population, are affected. Each year migraine costs $35.7 billion dollars (AUD). The biggest cost is paid by the government. Parliamentarians met patient advocates and doctors and learned that addressing migraine is good not only for patients but for government.


CHAMP Meeting – November 2018

CHAMP held another meeting recently in Scottsdale, Arizona, where Carl Cincinnato, Paula Dumas and Karl Dumas, along with a dozen more representatives attended. They reviewed the progress on current challenges and divided into subcommittees to address anti-stigma, communication, and public policy.  See the members and review CHAMP’s Twitter feed for more images and details from the event.

Year in Review

Many advocates are now sharing best practices, receiving training, support, and communicating with each other regularly. The process of change is slow, but gradually momentum has built. We are becoming empowered to make a bigger impact in the fight against stigma and to support those with migraine and headache disorders. This in turn helps us strengthen and encourage our communities to make their voice heard and take action when needed.

If you feel the call to act or contribute in some way we’d encourage you to connect with your local headache or migraine advocacy. There are many nonprofit organizations that need committed and talented volunteers to help (stay tuned next week for more information about how you join the Migraine World Summit team).  If you are frequently unwell your priority should to be your own health and wellbeing.

There will be times when all of us can participate in different ways whether it’s writing to your government representative, speaking out about migraine, or educating someone we know. Either way, you can take comfort knowing that there is a passionate and determined group working hard to improve the lives of those with migraine and headache disease.

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