Earlier this year we opened applications for an eight week policy & advocacy internship* for this summer. We are excited to introduce you to the two candidates that we selected! Lewis and Maria are part of the bleeding disorders and have been chosen Â because of their leadership qualities and interest in the field of policy and advocacy.
During the summer, Lewis and Maria will engage in a variety of hands-on activities including:
- Team and network building
- Legislative, policy and advocacy training
- Build communication and media skills
- Attending hearings and Hill office visits
- Executive Branch Agency Visits (example: FDA meetings, NIH)
- Collaborative activities with NORD, APLUS, CAT, PPTA etc.
- Author a specific policy work paper or issue brief
- Support HFA staff on activities including: Dear Addy, Action Alerts, Social Media outreach
- Attending and possibly present at local HFA Member Organization meetings
- Attend other conferences per 2014 schedule and availability
Throughout the summer, Lewis and Maria will be telling you what they’re doing Â and learning. Get to know these two future leaders of the bleeding disorders community!
Where are you in school? What did you major in/are majoring in?
Maria:Â I am a recent graduate of Covenant College in Georgia, with a degree in Economics.
Lewis: I am a rising senior at Cornell University. I am majoring in Biology & Society with a minor in global health.
Why did you apply for the HFA policy internship?
Maria: In early March I received an email from HFA describing a new internship that was beginning for the summer working focusing in health policy and advocacy. I was immediately interested because of my passion for work in these areas. My interest in health advocacy was spurred from advocating for my brother who is 13 and has severe Hemophilia A. For many years I have watched first as my parents advocated for his needs and then I quickly followed in their footsteps to make sure that my little brother had a voice.
Lewis: I applied for the HFA policy internship because I saw an opportunity to get a hands on experience working on issues that affect everyone in the bleeding disorders community. I got the impression early on that HFA wouldn’t just be handing out busy work to the interns. While it’s a fairly small office everyone stays incredibly busy and a lot gets done here.
What does it mean to be an advocate in the bleeding disorders community?
Maria: Being an advocate in the bleeding disorder community means sharing personal stories about your affiliation with and discussing how you life has changed because of a bleeding disorder. Through sharing your personal stories others become more aware and are better informed on how they can best make decisions that will help those who have bleeding disorders.
Lewis: To be an advocate is to understand the issues and act to make your voice heard. Almost everyone in the bleeding disorders community will face challenges in access to treatment, ranging from minor inconveniences to life threatening obstacles to receiving your medicine. By examining what policies and practices are in place that cause these problems patients can advocate for themselves and their fellow community members to ensure proper access to care. Open communication with medical professionals and administrators, insurance companies, drug manufacturers, government agencies and legislators are all-essential to the advocacy process.
What are you excited most about being at HFA?
Maria: I am very excited about attending congressional hearings and seeing the topics congress will be discussing this summer.
Lewis: Community members from across the country share their concerns with HFA on a daily basis. It is exciting to see how an organization represents and works with diverse groups across the nation. While the federal legislative process has its flaws, it is truly amazing and it is indeed true that every American citizen is entitled to walk into their congressman or senator’s office at the Capitol at any time. The bleeding disorders community has come a long way and I am excited to see how the HFA maintains and advances its relationship with patients, industry, and government. This is an exciting time for all of healthcare as congress continues to work on refining the Affordable Care Act and the recent House of Representatives’ 21st Century Cures Initiative.
What is one thing you hope to get out of this internship?
Maria: After the completion of this internship I would like to have a better understanding of how lobbying works and a better picture of what it looks like to be an advocate on Capitol Hill.
Lewis: I hope to gain deeper insight into the complex interactions between industry, patients, professionals, and government. My academic interests focus on the sociology and anthropology of disease communities.. I also am excited to have the opportunity to spend time researching specific issues affecting the hemophilia community that will result in articles or presentations, hopefully some of what I learn will be available for you to read later in the summer
*HFA gratefully recognizes Baxter for their unrestricted advocacy grant for these internships.