Earlier this summer, we introduced you to La鈥橞rittinee and Paul, our summer Policy interns. They have been busy all over DC, attending Congressional hearings and learning the ropes of working for a national organization. During their first week, they got to experience first-hand the planning and execution of our 4th Annual Patient Fly-In. Below are their experiences through an intern鈥檚 eyes on the Patient Fly-In.
The day on the Hill experience is one I will always hold near and dear to my heart. This opportunity allowed me to do the things I love most: advocate for others and make a change through policy.聽 Serving as an intern and a constituent allowed me to initiate relationships with my governing representatives while also developing my career skills for future use. Most valuably of all, I was able to聽serve my family and own community by advocating on their behalf to people whom can directly alter their lives.聽 The future of healthcare reform is unpredictable. We must have a voice and that is what the day on the Hill allowed me.
During my time on Hill, the legislators were very open and aware of who we were and the community we represent. The senior health staff of my Tennessee senator, Bob Corker, listened attentively to us, was very aware, and pledged to help. During those critical moments when bills and policies are being decided people are sometimes not aware of the issues their constituents face. There were shocked faces that an eight-year old鈥檚 medication, like my nephews, could cost $400,000 per year and that is why it is important to continue this journey and raise awareness. Considering health policy changes that are highly affecting the bleeding disorders community, whether it is discussing the Federal Budget, modifications to our current Medicaid programs, or the Affordable Care Act being repealed, we must stay vigilant. There are many changes on the horizon in healthcare and the patient鈥檚 voice must be included in the process.
As an intern, the day on the Hill provided many bonuses for me outside of advocating on behalf of my family. I also got to hear the voice of other constituents as they advocated to their representatives. This provided me with a wider perspective of what other community members experience past my own families struggles. Also as an intern for the first time ever I got to be a part of the preparation process that goes into advocacy work and witness behind the scenes action. I prepared 25+ binders and participated in the fly-in training which allowed me to witness what it takes to affectively advocate before legislators. This experience taught me how to carry out advocacy work behind the scene and on the frontline.
Without a doubt, it is an exciting time to be here in D.C. Especially during a time when healthcare has become such a hot topic across the nation. Because of this, Hemophilia Federation of America moved their annual fly-in to an earlier time than ever previously done before. Understanding the importance of this fly-in, La鈥橞rittinee and I were brought in to experience the Fly-In and gain experience on how to advocate with legislators on the Hill. We were informed, the day after our plane touched ground, we would be hard at work to prepare for this event.
Indeed, we were put to trial by fire and were instructed on the tasks to be completed leading up to the event. The next two days gave us plenty to do. After a brief introduction and greeting on the first day, it was time to make as many contributions as possible towards the overall success of this imperative fly-in event. From filling in spreadsheets, putting binders and folders together, to rolling equipment into the briefing room on nothing more than spinning office chairs; those two days were intensive and important for everyone involved with the Fly-In project. After the briefing, we had our teams sorted and we were all properly prepared to speak on the Hill the next day.
We had two objectives this year. On the House side, Restoring the Patient鈥檚 Voice Act of 2017 (H.R. 2077) is an important bill for our community. This bill was recently introduced and gives power back to the doctor and the patient. This bill provides exceptions for step therapy or fail first protocols that are being implemented by insurance companies. On the Senate side, our group continued conversations about the American Health Care Act (AHCA), which was recently passed by the House. With certain aspects of this legislation potentially negatively impacting the community, it was important to continue raising the topic of how bringing back lifetime caps, for example, would cause a great deal of harm to those with bleeding disorders.
With conviction, the team I worked with shared glimpses in the time and hardships of someone who suffers from a bleeding disorder to voice our support for key legislations most relevant to our community. Seeing it all come together and walk away feeling we had been successful in conveying the importance of our message was a reward in of itself. Here in D.C. I feel like every day I have the ability to change things and do good for America and Americans. In some ways, I feel like I already have. The HFA Fly-In is just one exciting chapter in many other incredible chapters I hope to write during my time here.