The US HAEA Advocacy Program leads a nationwide movement focused on maintaining a strong advocacy presence in health-related legislative and regulatory policy.  The HAEA vigorously fights on behalf of patients when any health policy or access to therapy challenges arises. Every year, the HAEA organizes a large group of patients who visit over 50 strategically selected House and Senate offices to discuss the organization’s public policy strategic goals.  This year, our 2018 Capitol Hill Day event took place on July 18-19 and was expanded to include a specialized Youth Program that engaged young people ages 12-28 in this important advocacy movement.

The HAEA Youth Leadership Council (YLC) and youth members joined the advocacy efforts during this summer’s Capitol Hill Day and demonstrated how they too, Stand Up Strong. Members of the YLC spent a few extra days learning about the legislative process, how to advocate for themselves, and the history behind some of the Nation’s Capital monuments. Dozens of kids and teens had an opportunity to speak during the legislative visits that took place during Capitol Hill Day, and share their own stories. As part of their preparation, the HAEA hosted special workshop sessions that included; an Intro to Capitol Hill Day, a patient advocacy chat with HAEA President Tony Castaldo, how to use social media as an advocacy tool and legislative advocacy training from the Health & Medicine Counsel of Washington.

Read on to better understand the impact that this experience had on the youth program participants.

Capitol Hill Day reflection

– written by Courtney Olson

Almost instantly when my plane landed in Washington D.C., I felt overwhelmed with excitement as I realized Capitol Hill Day had finally arrived. My thoughts bounced rapidly on the taxi ride to the hotel as I wondered what it would be like meeting with Congressional staff to advocate for Hereditary Angioedema patients, caregivers, and affected family members. However, my excitement was randomly overturned with fearful thoughts as I began to seriously consider how a young adult like me could possibly bring about large scale change. I felt insignificant as I focused too intently on my youth, my limited knowledge of politics, and my inexperience with advocacy; yet, these thoughts were only temporary. My doubts were quickly forgotten once I meet with other Youngsters at the event and began to better understand what it means to be an advocate.

The day flew by as we went from one meeting to the next advocating to Congressional staff about our cause. It was a busy, fun-filled day which left me with a lot of feelings and thoughts. The best thought of them all was the feeling that I had made a change. That I was part of a movement in which my personal story had made an impact. Opposing to my early fears of insignificance, my experience being a Hereditary Angioedema advocate was not ignored due to my youth or my inexperience; but rather, I was heard, I was listened to, and and I brought on change. If I could emphasize one thing from my experience at Capitol Hill Day, it would be that no matter how young, old, introverted, extroverted, experienced, or inexperienced you are, be an advocate for what you believe in, those you care about, and yourself. I learned this valuable lesson at Capitol Hill Day which I will always appreciate and set as my life mission. I also learned that Youngsters in the United States and around the globe are making the world aware that Hereditary Angioedema. HAE youngsters are tough, passionate, engaged, and truly remarkable young advocates ready to stir the world with change. I gained a great deal from my experience during Capitol Hill Day and I hope to see more advocates out supporting patients, caregivers, and family members affected by Hereditary Angioedema.