Chronic Migraine Awareness

Written by Kristen Estep for Chronic Migraine Awareness, Inc.

Wow!! What an awesome experience!  We had an all time high attendance with 179 advocates from 45 states being represented.  I also don’t want to forget all of the caregivers who were there to support their loved ones, including Gunner the service dog.  Their support was just as important as the advocates who attended. 

Monday morning began with sign in and advocacy training.  We collectively learned about the history of Headache on the Hill, the very first event was in 2007 with 45 advocates attending representing 29 states.  It is very exciting how this initiative has grown over the years.  We spent quite abit of our time learning about the ask for 2020 and how this could greatly benefit all people with migraine and headache disorders.  The wonderful news was that the bill already exists and there is no new money being requested from our ask because it is already there.  Our ask was just for clarification in the language in this bill to make sure that the money and resources are directed to the correct programs.  We also spent a small amount of time listening to some practice meetings with a Representative and Senator.  Then we were off to determine what each persons role in our states group would be.  Some groups had just two people in it while others had to divide into a couple groups for their state.  After we completed training, we all received certificates for our advocacy training.

So, what was our ‘ask’ for 2020?  There is a bill already drafted and approved (The Opioid Workforce Act H.R 3414 / S. 2892), but there is a disconnect in the language of this bill. The way this bill is written now, it supports CMS funding of positions in “approved residency training programs in pain medicine”.  However there are no approved residency training programs in pain medicine, only approved fellowships in Pain Medicine and Headache Medicine, which follow residencies.  We urge the amendment to H.R.3414 / S.2892 to ensure support of US physician training in both ACGME (Accreditation Council for Graduate Medical Education), for accredited Pain Medicine Fellowships and UCNS (United Council for Neurologic Subspecialties) for accredited Headache Medicine Fellowships.  If adopted into the bill, the Opioid Workforce Act would fund 1,000 new physician training positions in Addiction Medicine, Addiction Psychiatry and Pain Medicine.  We need to have at least 8 headache medicine doctors per 100,000 people with migraine (Information taken from the facts sheet created by the Alliance for Headache Disorders Advocacy).  As it stands now, there are 1.2 headache doctors per 100,000 Americans.  There are approximately 39 million men, women and children in the U.S. and 1 Billion worldwide; according to The Migraine Research Foundation. 

 Monday evening Chronic Migraine Awareness, Inc. held an event in which all members of CMA in attendance were celebrated.  Our President, Catherine Charrett-Dykes, was our host and she was so touched and thrilled that so many of our ARMS (Advocates Removing Migraine Stigma) members were in attendance.  We celebrated how much this program has grown and how much we are appreciated for our volunteer work.  Everyone received a certificate of appreciation for our advocacy and a raffle was held, with many prizes given out.  We also had a lovely dinner, followed by a group photo.  We were also given ‘swag bags’ with lanyards and name tags included.  We all certainly appreciate Cat and the rest of the directors for all of their hard work! Everyone had such a wonderful, fun time.

Tuesday morning, all of the advocates who had early meetings, met in the lobby of our hotel to take the buses over to Capital Hill.  Once we arrived, we took a group picture to start our day (in the rain lol).  We then split into our groups and headed out to take the Capital by storm.  Everyone had a full day of meetings with our State Representatives and Senators and/or their staffers presenting our ask for 2020.  Aside from this, we spoke our migraine/headache disease stories and also our difficulties navigating our health insurance companies restrictions accessing medications and treatments.  Before concluding our meetings we asked them to sponsor this amendment to the bill.  We also were able to take a photo with the person that we met with.  I must say that my group had one specific person who was very interested and impressed with the information we gave to him and asked us to continue to send stories and event notifications specific to migraine/headache disease, so that he may bring this back to the Senator to highlight how much this ‘ask’ is necessary.  This is exciting news and will hopefully lead this Senator to co-sponsor amending the bill.  

Although many of us pushed ourselves to or past our limits, it was for a very important reason.  This amendment would help us so very much in the future.  Each one of us with migraine/headache disease have had difficulties with obtaining the proper medications and/or finding a headache specialist or neurologist who will work with you adequately.

I am hopeful that many of us made such a difference yesterday.  Let’s all try to keep in contact with our Representatives and Senators, this also will make a difference!   

Chronic Migraine Awareness, Inc. would like to extend a special Thank You to The Westin Crystal City for their hospitality especially their Convention Services Manager, JoeNiece Houston who dressed in purple to support migraine disease.