I am so excited about gearing up and planning my trip to Washington, D.C., from Feb. 24-26 for Rare Disease Week on Capitol Hill. This will be my first time taking part in the event, and I am thrilled.
Prepping for a busy week
The first day will be a “Share Your Story” event, followed by a welcome reception. On the 25th will be legislative conference all day. On the 26th we will attend the Rare Disease Congressional Caucus Briefing and meet with members of Congress, followed by a closing reception.
To make the most of Rare Disease Week on Capitol Hill we will take part in virtual training leading up to the event.
Empowering the rare disease community
Rare Disease Week on Capitol Hill is hosted by the Rare Disease Legislative Advocates (RDLA), a program of the EveryLife Foundation for Rare Diseases. This nonpartisan organization aims to empower the rare disease community to advocate for science-based policies that improve diagnosis and access to treatment. They provide education, resources and advocacy training for patients and families.
Information provided on their website states that the economic burden of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. Rare disease patients wait an average of 6.3 years before receiving a confirmed diagnosis. As few as 5% of the more than 10,000 known rare diseases have a U.S. Food and Drug Administration (FDA) approved therapy. The U.S. FDA process for approval of a rare disease drug can take an average of 15 years.
These statistics are mind-blowing. I lived these numbers trying to find a diagnosis for my indolent systemic mastocytosis (SM). It took over 10 years to be diagnosed, and then another 20 to finally get the proper treatment. I am so thankful that I was selected to take part in a clinical trial for treatment of my disease.
Because I was given this opportunity to improve my life living with a rare disease, I want to make my voice heard to advocate for others. I want everyone facing these challenges to have the same opportunity as I had.
For this reason, I feel it is my responsibility to share my story with all of you on SM Companion and its sister site, Rare Disease Advisor — and with anyone else who will listen. I have already taken part by speaking with legislators during RDLA’s Rare Across America event back in August. I also flew to Boston last year to take part in a patient advisory board where I shared my story. For me, these trips carry challenges.
Making travel happen
Travel is not easy for me. I do not know how I will feel when it’s time to leave. I do not know who will be on the plane beside me. Will they be wearing perfume that will cause me to have a flareup?
I am careful with what I eat. And I always try to keep my emotions under control because that can also cause me to become sick. I carry all my meds with me on the plane, and my EpiPen is always within reach. I still need to buy a medical bracelet to wear that shows my disease and pertinent information, and I intend to do that soon. It would make travel safer for me.
I must say that I did schedule a White House tour, Library of Congress tour and Capitol tour through House Speaker Mike Johnson’s office for my spare time while in Washington. I am so thankful they were able to make this happen for me and my sister, who will be traveling with me.
I am lucky to have a sister who supports me and does not like me going alone, especially when I will be traveling on the Metrorail system to get from the hotel to all the places where the meetings and tours will be taking place. You cannot go to D.C. without seeing historical places and documents. Especially when you love history.
Plane tickets are bought, and a hotel near a metro station is booked. And the excitement is building fast. I do not know how many other patient advocates will be there, but I am ecstatic about being a part of this huge event.
The EveryLife foundation website states that our stories inspire, educate and influence. Each one of us has a story. Make your voice heard!
Sign up here to get the latest news, perspectives, and information about SM sent directly to your inbox. Registration is free and only takes a minute.
