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Amy, A GNE Myopathy Patient - My Personal Goal is Advocacy

                     Here in her own words is my friend Amy's narrative on advocacy.

              As a patient with GNE Myopathy, I started 2017 with a bold New Year’s resolution.  I wanted to use my spare time as a patient advocate for both GNE Myopathy (GNEM) and all other neuromuscular diseases.  As a patient advocate program manager with the Neuromuscular Disease Foundation (NDF), my time is spent working on increasing awareness for GNEM.  In January, I applied for a position on the first ever National Community Advisory Committee within the Muscular Dystrophy Association (MDA). I was accepted onto the committee with 14 other people across the nation!  At the same time, I also signed up for the 2017 MDA Advocacy Conference in Washington, D.C.  I never imagined I could accomplish so much in so little time!
                The MDA Advocacy Conference was designed to help us prepare to meet with our congressmen and/or their staffers.  We heard from policy advisors who explained, in detail, what we were going to advocate for in Capitol Hill.  Subject area experts also spoke on advocacy and why it is so important to our community. The Scientific Program Directors, who are in charge of specific neuromuscular diseases, spoke of the diseases in their purview and offered up time afterwards for audience members to speak with them one on one. 
                As a group of advocates, the MDA stressed 5 specific items that we would be advocating for at Capitol Hill this year: NIH funding, FDA funding, newborn screening funding, healthcare reform, and accessible air travel.  The explanation behind the process helped me, as a first timer at Capitol Hill, understand the importance of all members advocating for the same items.  Hundreds of members with the same message with have a greater impact than hundreds of members with different messages.  We are greater together as a whole.  Each year, the MDA will choose the items that are most important to advocate for patients with neuromuscular diseases and their families. 
                In this year’s political climate, we needed to advocate to keep the funding to the NIH to at least the same level as it was in years prior.  For FDA funding, we were advocating for a 3% budget increase to the FDA in fiscal year 2017.  For the National Newborn Screening Programing, we were advocating for budget increases in both fiscal years 2017 and 2018.   In terms of healthcare reform, there were two general items we were advocating for to the congressmen.  We were asking our congressmen to include protections that ensure that coverage is affordable, accessible, and adequate and understandable.  Also, we were asking that our congressmen support protecting the Medicaid program.  The last item we advocated for was accessible air travel.
                In regards to accessible air travel, we were asking our congressmen to support measures that would increase accessibility to air travel.  Soon, FAA reauthorizations will be coming through congress and there will be some provisions in these reauthorizations that will help passengers with disabilities have increased access to air travel.  We were advocating our congressmen to support these provisions.  The MDA conducted a survey with over 2000 participants about their experiences with air travel.  Right now, there are a number of issues with the accessibility of air travel.  First, airplanes do not have accessible lavatories.  Second, wheelchairs are only permitted in the cargo hold where they can be sometimes damaged. Third, transfer to a seat in the airplane is an arduous process and sometimes injuries can occur.  The actual seat on an airplane is not the safest place for all persons with disabilities; they would be safer in their personalized wheelchairs.  Fourth, access to preferential seating is not always permitted.  I know from personal experience that my fiancé, Jon, and I pay extra money to ensure we get the economy seats towards the front of the plane.  We also experienced issues with regards to Jon assisting me into the airplane seats; the airlines do leave enough extra time for us to get properly settled before they start boarding everyone else.  We often feel like the transfer to the airplane seat is a rushed process when a transfer needs to be slow and safe.
During the MDA Advocacy Conference, representatives from the Department of Transportation spoke about efforts to increase accessibility of air travel. Livaughn Chapman Jr., Chief, and Alex Taday, Supervisory Analyst, of the Aviation Civil Rights Compliance Branch of the Department of Transportation (DOT) summarized what their department is doing and what the neuromuscular disease community can do to increase accessibility in air travel.  If a person with a disability encounters an issue/problem when traveling, he/she has a right to issue a complaint with the specific airline and the DOT.  The DOT has a process for complaint handling and the outcome of the complaint will be communicated to the person who filed the complaint.
                So, what should we, as neuromuscular disease patients, do if we experience an issue during air travel?  File a complaint with the DOT and the airline as soon as possible.  Right now, the DOT receives roughly 800 complaints a year regarding accessible air travel.  These complaints are mainly about timely assistance for people with disabilities. The only way to increase government awareness of the state of air travel will be to increase the awareness of negative experiences in air travel for people with disabilities.  Complain, complain, complain!  I know it sounds counterintuitive, but let’s change the way we travel!  Here is the link for the DOT complaint form: DOT Complaint Form.
                After were heard all the information and instructions about our advocating, we prepared ourselves for Capitol Hill.  Groups for each state gathered together to go over the meeting schedule and discuss who will talk about which topics.  There was a total of 4 of us from my state, Pennsylvania.  Our schedule included two senators and two congressmen from the House of Representatives.  We were scheduled to meet with the staff members of Senator Pat Toomey (R) and Robert Casey (D) as well as staff members for Representative Brian Fitzpatrick (R).  Our last meeting was for Representative Ryan Costello (R) and his staff.

                Now, I was nervous.  You might think it strange because I was a teacher, but to me, this was totally different than teaching.  In teaching, I spoke to children, preteens, and teens most of the time.  I could fumble words now and then and show students that it is okay to make mistakes and carry on with your statements.  I also spoke to peers, administrators, and parents.  At first, I was nervous with administrators but I realized they are here for me and easily approachable.  As far as communicating with parents, I realized that parents can sense your genuine concern for the well-being of their student and open communication works best.  Why did I just tell you all this?  Because I am not the teacher anymore in my new role of going to congress.  I am the student. The MDA taught me the skills to go to Capitol Hill and advocate for people with disabilities.

                In reality, I should not have been nervous.  The staffers were friendly and very inviting.  Senator Pat Toomey and Senator Robert Casey’s staffers assured us that they were fighting to keep the NIH budget because biomedical research is a bipartisan issue that affects all people.  We also saw positive feedback about the FDA, the Newborn Screening funding, and healthcare reform.  These four issues were issues that have been on the minds of Capitol Hill for a while now.  We made our case accessible air travel and were told that they would research this more with a positive outlook. 
                Next, we made our way to the House of Representatives.  Representative Brian Fitzpatrick’s staffers met us in exactly the same manner as the Senator’s staffers.  We had a positive outlook and even met the congressman at the end of the meeting.  He was warm and friendly and seemed to genuinely care about our concerns.  Our last meeting was with Representative Ryan Costello.  This was our only meeting with an actual representative and I was acutely more nervous, but the meeting went well.  We expressed our concerns for all five advocacy topics and he was receptive to our concerns.  We had a thoughtful conversation about our needs and our hopes for Representative Costello to support our cause.
                I look back on these days now and feel proud of myself.  I stepped out of my comfort zone and will continue to do so for a cause dear to my heart.  I will follow-up with each member I met with and express my thanks for taking the time to meet with me.  I will continue to advocate by going to Capitol Hill whenever I have a chance and also go to my local Pennsylvania representatives as well.  At the beginning of the conference we were given a poster with an incomplete sentence that said, “I advocate for….”  I ended up filling out two of them.  I advocate for GNE Myopathy.  I advocate for YOU.   

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