Hemophilia Federation of America’s Policy and Government Relations Internship has come to a close for 2019. Last week, Jasmin shared her thoughts on the summer and this week we hear from Dylan. HFA is very grateful for all of the work Jasmin and Dylan have completed in 10 short weeks. We can’t wait to see what the future holds for these bright, young leaders in the bleeding disorders community!
What was your favorite part of your summer at HFA?
It’s difficult to pick a favorite part of my incredible experience as part of HFA’s staff for the summer. The policy project allowed me to make the internship meaningful beyond my 10 weeks in Washington D.C., and use my passions to serve our community. The opportunity to create a guide for young adults navigating the health care system, and knowing the difference it will make, is a powerful experience. My work on this project is an investment in the community’s future. Further, I love that I was able to work with so many amazing people to gain a greater understanding of how to best help HFA achieve its mission and improve its work. This internship was as much about receiving knowledge, as it was about giving back to our community. I will never be able to pay back the debt I owe to the community members who invested their time in me over the years.
What was the most surprising thing you learned over the summer?
The most surprising thing I have learned is just how challenging the Medicaid crisis is in Puerto Rico. After attending a hearing and following subsequent policy updates related to Puerto Rico over the summer, I am amazed at how the island and it people have been treated. I cannot imagine the struggles that members of our community face day in and day out due to obscure U.S. policies on territorial Medicaid programs. It infuriates me that people suffer in our community because of where they live and it’s wrong. This was eye opening because I had always assumed that in America most people had a similar experience with their bleeding disorders and access to care across state lines. I knew that there were issues between Medicaid expansion and non-expansion states but the structural problems beyond the expansion issues were not something I had ever considered. My ignorance has been shattered through communication with community members from other states. In the coming months, I hope policy changes in Puerto Rico can make health care more accessible, because no one should fear that they won’t have access to care in America whether you live in a state or territory.
What was the most important thing you learned over the summer?
The most important thing I learned in this internship is that our voices are more powerful than we realize. Politicians and their aides really listen and react to our stories, signing onto bills and pushing policies that benefit us. In this community, we have a duty to each other to speak out for the policies that can give us a better live, as well as other Americans. This internship helped me realize the power of my own story, something I have always discounted.Â
How has this internship helped you to become a stronger advocate and leader?
This internship has helped me improve in many of the areas I needed to work on, but never really put the time into. For instance, confidence is one of the areas I have grown this summer, demonstrated by the three public speaking engagements I completed throughout the summer. The best advocates are those who can harness their own message with confidence. Becoming more confident and honing my public speaking skills will allow me to be a better advocate for the community when I go back to Ohio.
How do you plan to stay involved in the bleeding disorders community?Â
I am going to make the effort to stay active in bleeding disorder advocacy at the state and national level once I go home. I am a member of the Ohio Bleeding Disorders Council so I will still be active in Ohio for statehouse days. Hopefully I will be able to attend NHF Washington Days and HFA’s fly-in. I would really love to apply for the Advocacy Leadership Council for next year but there is still time left to decide that. Those who know me can attest that it’s hard to get rid of me! I plan to keep on using my skills and advocating for our policy priorities.
Anything else you’d like to share about your experience?
Until this experience, I never appreciated the work HFA staff does to make this organization succeed. The bleeding disorders community is lucky to have so many dedicated people in our corner going above and beyond what is required, to watch our backs. I think we take for granted just how complex it is to put on events, create resources, and advocate for us. There is so much we cannot see from the outside that HFA does to always keep on top of our needs and keep its priorities relevant in the face of the changes around us. I loved working here because of the people and I will be sad to go, however, I am glad to have been able to contribute to the work HFA does for 10 weeks.
