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19 June 2017

Raising Migraine Awareness on Capitol Hill + Video #RAMigraine #MHAM


Image courtesy of Research!America
Last Thursday I had the amazing opportunity to speak to House and Senate congressional staff about migraine and how it impacts my daily life.  Research!America hosted a briefing on Capitol Hill,The Value of Research and Prevention in Addressing the Societal Burden of Migraine, to focus on developments in research, prevention and treatment, and policies to reduce the burden of this illness.



Mary Franklin, Executive Director of the National Headache Foundation, moderated the panel which included myself, Dr. William Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS), Dr. Brian Gifford, Director of Research and Development at the Integrated Benefits Institute, and Dr. Amaal J. Starling, Associate Professor at the Mayo Clinic.
From L to R: Dr. William Koroshetz, Jaime Sanders,
Mary Franklin, Dr, Amaal J. Starling, Dr. Brian Gifford
Image courtesy of Research!America 

Never in my wildest dreams could I ever imagine that I would be included in such an important event with such esteemed people.  In my mind, I am just a long-time migraine sufferer who decided to start blogging about my condition, life, and how important it is to advocate for myself.  To say that I was a nervous wreck is an understatement!  I was star struck to meet Dr. Starling in person... I love her work and what she does for the migraine community.

My role on the panel was to represent the patient community.  Our voice is not usually highlighted, so it was an honor to share our concerns, needs, wants and our reality with all who attended.  It was important for me to convey that although each migraine patient is different, we all want the same thing - inclusion.  We want to be included in the conversation, be a part of research, have a say in what treatments work and do not work, obtain reasonable accommodations at work, and to have our disease treated as one that is serious and debilitating.

Dr. Koroshetz emphasized the importance of specific research to advance the progress in identifying the causes of migraine, such as the BRAIN initiative.  This type of research has led us to the development of migraine-specific drug treatments like CGRP (calcitonin gene related peptide), which has been thought to play an integral part in the pathophysiology of migraine.  Dr. Koroshetz also made sure to point out that more research is needed, not only to find the molecular causes of migraine but to further delve into the disparities within the condition.  He noted that "African-American women have 27% more frequent headaches than Caucasian women."  This was information that I heard for the first time, so it is important to make these numbers and statistics more widely known and available.

Migraine in the workplace can be difficult to manage by both the patient and the employer. There is an estimated $20 billion loss to employers on health care spending and productivity due to migraine.  Migraine is not adequately addressed by employers leading to more complications for migraine patients to treat and manage their illness.  Is there a solution to this problem?  Dr. Gifford notes, "In addition to promoting migraine awareness in their workforce, employers can help chronic headache sufferers manage their conditions and their productivity by developing benefit plans that cover a range of treatment options across different clinical specialties."

Despite the advancements made in migraine research, there are still major gaps in care. In 2016, NIH invested $24 million on headache research, including $10 million from NINDS, the lead NIH Institute for headache research.  But as Dr. Starling noted, "Disparity in funding based on disease burden, migraine should be receiving at least 100 million dollars."  The stigma of migraine leads to the lack of clinician-scientists in migraine, migraine research, and novel treatment options.  40 million people in the United States have migraine yet there are only 520 headache specialists in the country, resulting in reduced patient access to care and lack of safe, effective treatment options.

Overall, a lot of valuable and pertinent information was shared that can help further us along in the effort to put migraine on the forefront instead of in the background.  Increasing funding dollars to further research and to provide grants, fellowships, and incentives for physicians and scientists to work in the field of headache medicine will greatly improve the quality of care migraine patients receive.

Watch the full briefing below. For more photos from the event, click here.




4 comments :

  1. Migraine Diva, thank you, thank you, thank you <3.

    ReplyDelete
    Replies
    1. You are most welcome! Anytime I have the opportunity to be that voice I am 1,000% on it!

      Delete
  2. What an amazing opportunity to represent the migraine community! Thank you for educating others and raising awareness. Hopefully an increase in specialized doctors and new treatment options will come in the near future. -bsrealtalk

    ReplyDelete
    Replies
    1. Yes, it was an amazing opportunity. The more we raise awareness, the more the stigma will be reduced, and hopefully that would lead to an increase in funding for research and incentives for clinicians and scientists to work in the field of headache medicine.

      Delete

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