The size and strength of a disease advocacy movement is one of the strongest predictors of resource allocation to that disease. Migraine and other headache disorders currently lack resources; lack of resources likely means limited diagnostic ability and fewer therapeutic innovations. For example, the National Institutes of Health (NIH) consistently provides low levels of funding relative to the disease burden of migraine; recently headache disease research warranted more than $103 million/year relative to disease burden but only received $6.8-$13 million/year.
Successful advocacy requires concerted efforts across many domains: patient-to-patient, patient-to-person without headache, provider-to-provider, provider and patient to payer, legislator, educator, business, etc. Taking into account the magnitude of the need and the immensity of the population in need, the number of advocates is miniscule.
Every year, each fellowship program with a Miles for Migraine city (receiving M4M donation for research and education) is asked to nominate a fellow to help coordinate M4M activities. We propose to educate and hopefully inspire this group of fellows into becoming future advocates. Simultaneously we propose to educate patients with leadership potential in a wide geographical distribution.
Program Details
Learning Objectives:
- Learners will understand what stigma is and how it operates in the headache community
- Learners will be exposed to the different models of advocacy and how they have operated in other disease states
- Learners will be aware of the current state of headache advocacy in the areas of policy and regulation
- Learners will be aware of the current state of headache advocacy relating to work and educational accommodations
- Learners will discuss strategies to change the narrative in a way that is beneficial to patients and headache medicine
- Learners will discuss how to bring advocacy into the patient’s care plan
Learning Outcomes:
- Increase numbers of provider advocates
- Increase numbers of patient advocates
- Advocates will be trained in speaking, writing, and political skills so that they can effectively communicate their message
- Advocates will be empowered with the knowledge, community, and resources to take on a role in an advocacy movement
- Advocates will be educated in the current state of advocacy for headache medicine and patients
- Advocates will develop creative strategies to identify and address gaps in the current advocacy movement
- Advocates will develop a proficiency project based on these outcomes.
Content Exposure:
- Stigma
- Policy and Regulation
- Lessons learned from advocacy in other disease states
- Advocacy with payers
- International advocacy, and interacting with businesses
- Advocacy as part of the treatment plan
- Advocacy in schools and education
- Support groups
- Landscape of the patient movement
- How to tell your story
- How to make an advocacy plan
- Using social media in advocacy
Schedule
| Day | Date | Time | ModalityFacilitator | Facilitator |
|---|---|---|---|---|
| Thurs | 8/10/2023 | 7:30pmEST | Stigma | Bill Young Joanna Kempner |
| Thurs | 9/7/2023 | 7:30pmEST | Create Your Elevator Story Handling Professional Stigma |
ACT Now patient warriors ACT Now prior fellows |
| Tues | 10/10/2023 | 7:30pmEST | Disease Campaigns: Synergy not Competition | Rachel Kahn Best |
| Thurs | 11/9/2023 | 7:30pmEST | Advocacy for Equity in Access & Quality for the Underserved |
Sheila Thorne, Courtney White, MD, Jaime Sanders |
| Thurs | 1/11/2024 | 7:30pmEST | Advocacy with Payers Insurance Claims and Denials: The Process, Procedures and How to Overcome Denials |
Lindsay Videnieks Dr. Brad Klein |
| Tues | 2/6/2024 | 7:30pmEST | Advocacy as Part of the Treatment Plan | Karissa Arca Courtney Iser |
| Thurs | 3/7/2024 | 7:30pmEST | How to Make an Advocacy Plan Potential Advocacy Projects |
Shirley Kessel Past Participants |
| Tues | 4/9/2024 | 7:30pmEST | Final Projects | Shirley Kessel |
Session Resources
After a session is complete, resources such as video, articles, PDFs or links will be collected here for distribution.
Publications
- Joanna's Book: Not Tonight: Migraine and the Politics of Gender and Health
- Kempner/Young Publication: The Stigma of Migraine
- Parikh/Young Publication: Migraine Stigma in Society
Publication:
Common Enemies: Disease Campaigns in America
Completed Session Projects
Advocates discuss their projects:
Lisa Benson
Beth Morton
Kelly Amspacher
Deena Migliazzo
Completed Project Tools:
Presenters
Karissa Arca, MD
Dr. Arca is a neurologist specializing in autonomic and headache disorders. She received her medical degree from Loma Linda University and went on to complete a Transitional Year residency and Neurology residency at Mayo Clinic in Arizona. During her final year of residency she was awarded the Manfred D. Muenter Award for Excellence in Clinical Neurology. She also competed a Headache Fellowship with additional training in autonomic disorders at Mayo Clinic in Arizona which is where she currently practices.
Dr. Arca is an active member of the American Academy of Neurology, American Headache Society, and the American Autonomic Society. She is involved in education and research and has a special interest in the cross-section of autonomic disorders and headache.
Rachel Kahn Best, PhD
Rachel Best is an Assistant Professor of Sociology at the University of Michigan. Her book, Common Enemies: Disease Campaigns in America, argues that when Americans come together to fight social problems, they focus their largest efforts on diseases. Fighting one disease at a time has unintended consequences for health policy. Her current research uses computational methods to explore the relationship between disease stigma, advocacy, and policy outcomes.
Carl Cincinnato
Carl stopped taking his health for granted at an early age thanks to migraine. Over the last 30 years, health has become central throughout his life and work. This includes working at one of the biggest health companies in the world, Johnson & Johnson.
Today, Carl works with charities, foundations, and organizations to help lift the global burden of migraine including Migraine & Headache Australia, the Brain Foundation, the Coalition of Headache and Migraine Patients (CHAMP), the Global Patient Advocacy Coalition (GPAC), and the World Health Education Foundation (WHEF). Carl is a member of the International Headache Society, acts on several patient committees, the author of MigrainePal.com and the founder of the Migraine World Summit.
Carl is a public and passionate patient advocate for migraine. He has spoken nationally and internationally on TV, radio and in print about migraine and the need to increase research funding, reduce stigma, and increase patient support.
Joanna Kempner, PhD
Joanna Kempner is an Associate Professor of Sociology at Rutgers University where she studies science, medicine, and inequality. Her work on health and justice, stigma in medicine, and the political suppression of science attempts to give a voice to those we rarely hear from. Her writing addresses the lack of effective treatments for pain, gender, race and stigma, and the extraordinary lengths that people will go to in order to find relief. She is the author of the award-winning book, Not Tonight: Migraine and the Politics of Gender and Health (Chicago), and is currently writing about cluster headache patient-led efforts to bring psychedelics back to medicine. Her research can also be read in a wide-range of academic and popular publications, including Science, PLoS Medicine, Social Science & Medicine, and Migraine.com.
Shirley Kessel
Executive director
Shirley is the mom of three daughters, two of whom live with migraine. When her youngest daughter Sydney became diagnosed at an early age, they both decided that it was time to take action to bring awareness and raise money for migraine research. They contacted Eileen Jones, who founded the Miles for Migraine race in San Francisco, and brought the race to the Philadelphia community in 2013. She became the Executive Director in 2017 when it became apparent that Miles for Migraine should take the race series around the USA.
Shirley has worked in healthcare for the past 26 years and has served on various non-profit boards since 1991. She won’t retire until a cure is found for this disabling disease.
Brad Klein, MD, MBA, FAAN, FAHS
Dr. Klein received his medical degree from Jefferson Medical College concurrently with a Master’s in Business Administration in Health and Medical Sciences Administration from Widener University. He completed his neurology residency and headache fellowship at Thomas Jefferson University Hospital. He is a Board-Certified neurologist with additional certification in Headache Medicine. Dr. Klein joined Abington Neurological Associates in Abington, PA, in 2008 and also serves as the Medical Director of the Abington Headache Center and Clinical Associate Professor of Neurology of Thomas Jefferson University.
Dr. Klein's additional interests include state and federal advocacy for patients and the health care system. He has spent over 15 years in advocacy including work in state and federal legislative bills, as well as federal regulatory reform. He currently serves as the Chair of the Medical Economics and Practice committee and a member of the Board of Directors of the American Academy of Neurology, Chair of the American Headache Society Practice Management Committee, and member of the Pennsylvania Healthcare Cost Containment Council.
Melissa Piercey
Melissa is a parent advocate, working to educate others to help fight the stigma associated with migraine disease, especially for school aged children. She is the Director of Education Advocacy for the Daniel Byron Henry Migraine Foundation as well as the Director of Community Outreach for Migraine at School. Melissa loves serving her community through church as well as her children's schools. She served as PTA President and has hosted numerous fundraisers. She feels blessed to be a full-time mother to Paige, Ava and Nicholas. When she is able, she will indulge in her first love, travel.
Jaime Sanders
Jaime Sanders is the author of the award-winning blog The Migraine Diva. She is a participant with the Coalition for Headache and Migraine Patients, with whom she worked to create an Issue Brief on Disparities in Headache and is a part of the leadership of the Disparities in Headache Advisory Council (DiHAC). Jaime is a stakeholder with the Headache and Migraine Policy Forum, works with the Society for Women’s Health Research Interdisciplinary Migraine Network, sits on the Patient Leadership Council with the National Headache Foundation, and serves on HealthyWomen’s Chronic Pain Advisory Council. She has lived with migraine since the age of two and has been chronic and intractable for the last fifteen years. Through her advocacy work and blog, Jaime’s mission is to make a very invisible disease visible to the rest of the world and validate the real pain of millions.
Amaal J. Starling, MD
Dr. Starling is an Assistant Professor of Neurology in the Mayo Clinic College of Medicine. She joined Mayo in 2012 and is currently a consultant within the Department of Neurology.
Dr. Starling received her M.D. degree from Drexel University College of Medicine in Philadelphia. She completed a Transitional Year residency, a Neurology Residency, and a Headache Fellowship at the Mayo Clinic College of Medicine in Scottsdale, Arizona.
She is an active member of the American Academy of Neurology, the American Headache Society (AHS), the American Medical Association and the American Pain Society. She is the Co-Chair of the American Headache and Migraine Association, Chair of the New Investigator and Trainee special interest section of the AHS, and serves as a member of the AHS Annual Meeting Scientific Committee. She is a perennial speaker at the AHS Annual Meeting in Scottsdale, Arizona. Dr. Starling has been the recipient of numerous awards including the AHS Above and Beyond Award for Service, Manfred D. Muenter Award for Excellence in Clinical Neurology, the American Academy of Neurology Annual Meeting Residency Scholarship, the 2012 Spirit of Mayo Clinic Award, and the Mayo Brothers Distinguished Fellowship Award. Dr. Starling has several peer-reviewed publications and abstracts related to her fields of interest which include migraine, concussion, posttraumatic headache, trigeminal autonomic cephalalgias, secondary headaches, telemedicine and teleconcussion, neurology resident education, and professionalism and clinical ethics.
Sheila Thorne
A native New Yorker and former senior executive in five preeminent health marketing and communications companies, Sheila Thorne has spent more than two decades designing marketing and media campaigns for Fortune 500 companies throughout North America, Latin America and Western Europe with a focus on people of color. A former high school teacher of foreign languages, she teaches and lectures on cultural competency and health disparities at four U.S. universities. She has given over 250 keynote presentations and conducted workshops on cultural competency, anti-bias and diversity in healthcare delivery. She is published in numerous marketing trade publications and in a variety of consumer health publications. Sheila has received numerous awards for her innovative marketing strategies to reach people of color and her unique ability to build coalitions and galvanize communities of color around health and social justice issues.
Lindsay Lawrence Videnieks
Lindsay Videnieks is Executive Director of the Headache and Migraine Policy Forum (HMPF), a diverse stakeholder coalition which brings together policy-minded partners that care about patient access. HMPF helped convene the migraine community to prepare comprehensive input during recent ICER reviews of new therapies to treat migraine disease and headache disorders and brings a campaign approach to state level patient access issues.
Ms. Videnieks has more than a decade of experience advising non-profit institutions on strategies to support public policy goals and to secure funding through the federal appropriations process. She previously worked in the office of Congressman John E. Baldacci (D-ME) as well as on his re-election to the U.S. House of Representatives. She provides counsel to voter protection programs nationwide and managed the voter protection Boiler Room operation for the DNC in 2016. Lindsay graduated from the University of Maine at Orono with Bachelor of Arts degrees in Political Science and English and received her law degree from Catholic University. She is admitted to practice law in Maryland where she also lives with her husband and three children.
David Watson, MD
Dr. David Watson is Chair of the WVU Department of Neurology and Director of the WVU Headache Center. His clinical work focuses on patients with headache disorders, and in access to clinical care for under-served populations. He has been active in clinical research focused on new treatment options for headache patients. In addition, Dr. Watson is involved with resident and student education at all levels.
He is very active in patient and professional advocacy, having founded Runnin' for Research, Inc., a charity which raises funds for headache and migraine research, and attending numerous lobbying days in Washington D.C.
He currently is a member of the AMA Opioid Task Force, has served as the Chair of the AAN Grassroots Working Group, currently chairs the American Academy of Neurology Advocacy Engagement Subcommittee and is a member of the Advocacy Committee of the American Academy of Neurology.
He was awarded the Palatucci Advocate of the Year award in 2017 by the American Academy of the Neurology, and the American Headache Society Above and Beyond Award in 2018.
Courtney White, MD
Courtney S White, MD is a neurologist and headache medicine specialist in Philadelphia, PA. She graduated from The George Washington University School of Medicine in Washington, DC in 2016 and completed her neurology residency and headache medicine fellowship at Thomas Jefferson University in Philadelphia, PA in 2020 and 2021, respectively. Dr. White is specialized in diagnosis and treatment of neurological disorders including headache disorders, stroke, epilepsy, Parkinson’s disease, Alzheimer’s Disease, and others. As a person with migraine, she understands the challenges in the journey to diagnosis and treatment of headache disorders and the need for increased awareness and advocacy for others with these conditions.
Dr. White is passionate about diversity, equity, and inclusion for underrepresented populations, specifically Black, Latine, and LGBTQ+ communities. As a Black woman and a member of the LGBTQ+ community, she is no stranger to intersectionality and diversity. She has also spent time living in Guatemala, Spain, and Colombia to improve her Spanish proficiency and learn how to provide culturally competent care to the Latinx community. At the Jefferson Headache Center, she is creating a program that allows underserved patients to have access to affordable, high-quality care for their headache disorders.
For her, advocacy is about education. Dr. White loves teaching medical students, her patients, and the community in general.
William Young, MD, President
Dr. Young is a neurologist at the Jefferson Headache Center. He received his medical degree from Penn State College of Medicine and has been in practice for 30 years. The Jefferson Headache Center is one of a very few academic headache centers in the country. The Center, founded in 1982, specializes in the treatment of patients with all types of headache pain. Dr. Young is the President of the Alliance for Headache Disorders Advocacy. Click for Detailed information pertaining to Dr. Young’s extensive research profile. Click for detailed information pertaining to Dr. Young’s extensive research profile, including research pertaining to migraine and stigma.
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