HFA Patient Fly-In: Through Our Interns' Eyes


Earlier this summer, we introduced you to Adam and Matthew, our summer Policy Interns. These two have been busy all over DC, attending Congressional hearings, Executive briefings, and much more. Recently, they got to experience first-hand the planning and execution of our 2nd Annual Patient Fly-In. Below is their take on the week, and a bonus look into their thoughts on the summer blockbuster scene!

What was it like to prepare for HFA’s patient fly-in?

Adam: Preparing for the Fly-In was long and hard, but rewarding. It was nice to be so busy and see all of the hard work we put in go to use.

Matthew: Preparing for the fly-in was a really cool experience. We got to meet HFA staff from around the country and see all the great people that make up this organization. Our preparation duties required a lot of teamwork, but worked out seamlessly. It was so interesting to see organization and community members working together hand-in-hand on the issues.

Which topic was most interesting to you and why?

Adam: Given that the Patients’ Access to Treatment Act would have an impact not only on me but on many around the country, and addresses issues which have caused growing concern in the world of insurance for many patients, I’d say H.R. 1600 was the most interesting issue.

Matthew: The blocking of 3rd party premium assistance payments was the most interesting issue to me. I was not expecting such an obvious issue that affects so many patients would be so difficult to solve. Many of the legislators’ offices were interested in learning more and possibly tackling this issue, which showed some hope for change in the near-future.

Adam with a group of patient advocates meeting with a representative from Senator Casey’s (D-PA) office.  

What was your patient group like?

Adam: My patient group was great. Our team leader was Jim Romano, from PSI, and my team had community members from Virginia, Michigan, Massachusetts, and Pennsylvania. All were wonderful advocates, and it was moving to hear their stories, especially one of the moms, who talked about the struggles of raising children with inhibitors. I felt that we told moving stories to the legislative staff and hope they were impactful.

Matthew: Our group included constituents from Maine, Maryland, and South Carolina. Their stories touched on issues from inhibitors to premium caps. They enlightened me, and surely the legislative staff as well, on how much lawmaking truly impacts the bleeding disorders community and holds the potential to make a big difference in many peoples’ lives.

Do you think your efforts were effective?  

Adam: I do feel that we were effective, though I think that a larger campaign/movement would help garner even more support. The more individuals we can have advocating the better!

Matthew: Many offices were extremely receptive to the encouragement and stories they received from the patients. Although some of the staff seemed stuck in a state of inactivity, many offices were extremely receptive and interested in pursuing at least some of the issues further. Altogether I think our efforts were effective in greasing the wheels of change, rekindling the conversation and nudging our representatives to take action.

What was the highlight of the day?

Adam: I don’t really have a single highlight of the day; the whole day was my highlight. I always love being on Capitol Hill and feeling the energy around me. I did enjoy having lunch with my team though: we were able to talk about politics, health care, and other aspects of life with a bleeding disorder.

Matthew: The best part of the day for me was seeing how excited everyone was in the morning. Every person was there to fight for issues that are meaningful to them and I think this propagated feelings of confidence and enthusiasm throughout the group.

Matthew at a recent Alliance for Health Reform meeting.

Adam: This experience has made me more excited to pursue legislation through Congress, and has further opened me up to the world of advocacy. I hope to do more work like this event in the future.

Matthew: Experiencing the overwhelming passion and support from the fly-in has motivated me to support the community as much as possible going forward. I hope to be proactive this summer in finding ways to do so outside of what we already have planned!

Entourage or Jurassic World? 

Adam: Since I haven’t seen Jurassic World, I have to go with Entourage.

Matthew: I just finished up watching the whole Entourage TV series, so I’d have to go with the former. I haven’t seen the movie yet but it should be an interesting culmination to the ~8 years the show was on.