Earlier this summer we welcomed our summer policy & government relations interns to our DC office. Eric and Cami are part of the bleeding disorders community and were chosen to participate in a 10-week internship because of their leadership qualities and interest in the field of policy and advocacy. Throughout the summer, Eric and Cami:
- Gained legislative, policy, and advocacy training
- Attended hearings and Capitol Hill office visits
- Worked on projects with Plasma Protein Therapeutics Association (PPTA)
- Toured a plasma donation center
- Authored policy-specific issue briefs
Thank you to Baxalta for giving HFA a grant to make this internship possible. Learn more by reading about Cami’s experience:
What was your favorite part of your summer at HFA?
Definitely the HFA Fly-In day! That day taught me that despite the current focus on a strong online presence and the immediacy of internet interaction—the old saying is true — “all politics is local.” Our bleeding disorders families are our most valuable assets, and having them personalize The Access to Marketplace Insurance Act with their own personal was the most impactful form of advocacy. Seeing how in-person fly-ins are planned and executed, and meeting the articulate families who carried the day was a very meaningful and eye-opening experience.
What was the most surprising thing you learned over the summer?
From our offices in Washington, D.C., I had a unique vantage point of how the actions of government, the pharmaceutical and insurance industries and health care providers directly affect the lives of the families in our community. Participating in conference call updates from the White House about the Zika virus and the safety of our blood supply was a somber reminder of how linked our families’ health and welfare are to the world at-large and the responsibility of all the groups and organizations above to work together and practice appropriate diligence in protecting the blood supply.
What was the most important thing you learned over the summer?
To be a good listener and observer. The bleeding disorders community is one that has many stakeholders and new therapies, laws and current events impact those stakeholders and the community as a whole. All of these different parts of the community make it important to listen or read carefully—whether in a meeting, hearing or talking one-on-one. This summer, I truly learned that listening is essential to discerning.
How has this internship helped you to become a stronger advocate and leader?
Sitting in Senate committee hearings or reading articles on abstract issues like balance billing[i] really reinforced the notion to me that the federal government makes decisions on an almost daily basis that affect us—all of us in different ways. In order to ensure that our interests are considered and accommodated, we need to have a voice in the process. I now know that as a health advocate and leader, I’ll need to be able to design strategy, direct advocacy, coordinate grassroots support programs, organize with other coalitions who share the same interests, be aware of government trends in terms of similar issues, be able to draft and analyze policy proposals and monitor laws and regulations. It’s a big job, and one that I personally witnessed HFA doing every day, in so many ways.
How are you going to stay involved in the bleeding disorders community?
I’m armed with powerful knowledge—that more than three million Americans have either hemophilia, von Willebrand disease, or rare factor deficiencies and that their livelihood and even their very life can be negatively affected if not treated in a timely and effective way. My understanding of how government, insurance, medicine and research, and the national blood supply are all life lines to these three million fellow citizens will make my voice more passionate and resolved in every opportunity I have to speak out for their needs. Now that I have learned so much, there is no possible way that I will stop being passionate about advocating for this community.
[i] When a provider bills you for the difference between the provider’s charge and the allowed amount. For example, if the provider’s charge is $100 and the allowed amount is $70, the provider may bill you for the remaining $30. A preferred provider may not balance bill you for covered services.