Earlier this month I was fortunate enough to be able to attend the National Bleeding Disorders Foundation’s Washington Days event in Washington, D. C. This is an annual occurrence where people from all over the country gather to go to the Capitol to meet with our legislators and advocate for people with bleeding disorders. I was familiar with Washington Days; my son Tyler had attended several years with our local Arizona Bleeding Disorder organization who take teens every year to start training these “future leaders” in the community. Thankfully, I had a friend, Chrissy Ingram Cotts, who encouraged me go with her this year to show our support and to ask our legislators to co-sponsor the HELP Copays Act (S. 1375/H.R. 830) and to sign the letter circulating in the Senate asking HHS to prevent narrow formularies that don’t cover bleeding disorder treatments. This turned out to be such an amazing and empowering experience that I wanted to share my trip with others.
Let me start by saying that anyone in the bleeding disorders community can signup to attend by registering online through the NBDF website. They offer discounted rooms and a three-day planned agenda outlining an itinerary on an easy-to-use app. (Travel grants are also available.) Prior to arriving, you will receive online training via Zoom from NBDF and lobbyists working with the bleeding disorder community. They do a great job explaining the issues as well as providing material to help you along the way. I admit I was intimidated at the thought of speaking to people at the Capitol and worried about what to say. I quickly realized that all I needed to do was share my family’s story and how living with Hemophilia has impacted us. The team encouraged everyone to explain how these proposed changes to our healthcare system would affect our families directly, which again was easy to do. Now with our stories ready to share, we’re off to Washington, D.C.
Upon arriving at the conference, we were directed to our home state’s table(s). I was impressed to see that states as far away as Alaska were even represented. Remember, anyone in the bleeding disorder community can register for this event whether they are sponsored by their local chapter or pay on their own. I wish I had realized this years ago! Thankfully, every state was assigned a NBDF representative to go with our group to the meetings and assist us. I think most groups had veterans who helped the newbies like me navigate our way through the Capitol building and lead the discussions. My first meeting was not my best but, as the day progressed, I found my footing and it flowed easier.
I was impressed with how attentive and compassionate the aides we met with were to our group. They took notes and asked questions to pass on to the Representatives/Senators. I think hearing our stories was very impactful. I shared my son’s struggles living with an inhibitor and Hemophilia B, as well as my own story. How will the people voting on our fate know if we don’t educate them? I was empowered by my experience, and felt I was helping all my friends and families in the bleeding disorder community. So many times, throughout the year, we are asked to participate in events and, as much as we would like to do them all, we can only attend so many. I think that Washington Days is a program that everyone should attend at least once. It was so educational and inspiring! I am excited for next year and hope to see you all there.
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