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Earlier this month, HFA introduced you to Jasmin and Dylan, our summer Policy and Government Relations Interns. Jasmin and Dylan have been busy in D.C., attending congressional hearings and learning the ropes of working for a national nonprofit organization. During their second week, Jasmin and Dylan experienced first-hand the planning and execution of our sixth annual Patient Fly-In. Read their accounts:

Jasmin:

Last week, I was lucky enough to participate in HFA鈥檚 sixth annual patient fly-in! For the fly-in, we visited our senators and representatives on Capitol Hill. I prepared by reading different bills of importance, researching current health policy, and looking into my representatives voting record. We also met as a team to discuss the plan for our meetings and go over tips for talking to our legislators.

Although our community is consistently advocating for access to quality and affordable care, we had a few specific policies we were concerned about, including step therapy, short-term plans and enhancing affordability.

Step therapy was one of our main issues as 鈥渇ail first鈥 protocols are extremely dangerous for people with chronic conditions if they prevent access to essential medication. For bleeding disorders patients, the consequences of 鈥渇ailure鈥 are life-threatening, such as increased risks of major bleeds and the associated long-term effects. Therefore, we advocated for patients with bleeding disorders and other conditions to get an exception and protections to this protocol. In the House of Representatives, House of Representatives Bill 2279, the Safe Step Act, was introduced in April and would protect patients like the bleeding disorders community from step therapy protocols. H.R. 2279 is bipartisan legislation and many states already have step therapy restrictions in place, including my home state of California.

Additionally, we asked for support for protections against short-term plans. Short-term plans undermine the Affordable Care Act standards for quality coverage and absolutely do not meet the needs for patients with bleeding disorders. Short-term plans often appear inviting to healthy individuals, which drives them out of insurance markets and ultimately makes the premiums go up for people with pre-existing conditions who need more quality coverage. Currently, there are bills in both the House of Representatives and the Senate that would roll back the 2018 rule that expanded the availability of short-term plans, Senate Bill 1556聽and House of Representatives bills 1010聽and 987. In our hill visits, we asked our representatives to support these pieces of legislation and explained how they benefit the bleeding disorders community.

The last request we made to our legislators was that they support measures to enhance affordability of health insurance, such as Senate Bill 961and House of Representative bills 1868and 1870. These bills would expand eligibility for premium subsidies.

Overall, the hill visits were successful and everyone did a great job advocating for the community and sharing their stories! Coming to the fly-in and meeting with representatives can appear intimidating and nerve-racking, but legislators and their staff are very friendly and open to what you have to say 鈥 you do elect them after all!

After we finished our meetings for the day, HFA held a congressional reception. We got the chance to network and chat with all sorts of people! At the reception, Dylan and I each gave a speech and shared our experiences with bleeding disorders. I was nervous, but excited to work on my public speaking and share my story! In the end, it went great and everyone was extremely kind.

The advocates for the bleeding disorders community really inspired me over the weekend and it was an honor to get to know them. Their stories and experiences are unique and powerful, each one deserves to be heard and I could not be happier to work with them.

2019 Interns Jasmin and Dylan, right, pose with members of the Advocacy Leadership Council

Dylan: 81 Hours in Washington

The period between 8:30 a.m. on June 9 and 5 p.m. on June 12 lasted roughly 81 hours and for the staff of Hemophilia Federation of America it included a particularly impactful series of events. In this time HFA鈥檚 new Advocacy Leadership Council had its first formal meeting since Symposium, HFA鈥檚 largest fly-in group since they began their program in 2013, descended on Capitol Hill, and our community鈥檚 own Sonji Wilkes, Director of Advocacy for HFA, testified in a four-hour hearing before the House Energy and Commerce Committee鈥檚 Subcommittee on Health. It鈥檚 safe to say that without the intense work and dedication of the full HFA staff and numerous community advocates, none of this could have occurred so smoothly. Here are my highlights from these 81 Hours in Washington:

Trainings

Jasmin and I were able to partake in the ALC trainings on Sunday, June 9, gaining a far deeper understanding of the unique policy issues which affect the bleeding disorders community. Training included time discussing the current state of health care in America since the ACA and the numerous administrative cuts to it. This year our legislative advocacy efforts focused on step therapy, surprise billing, and short-term insurance plan legislation. The protections for our community that these bills outline are dramatic. However, working with so many communities advocates whose stories emphasize the importance of these efforts, was the most meaningful part of this saga. The trainings were the first part of a series of events that gave me a new appreciation for how lucky I have it. My journey as a member of our community was driven by stigmas not symptoms and the cost they had on my family, yet even this resonated with our community members who share similar experiences.

On the Hill

On June 10, I participated in five congressional meetings with community members from South Carolina, Oklahoma, and my home state, Ohio. As empowering as it is to tell your own stories to legislators, it was amazing to see these advocates getting a response and breaking through the party barriers that always seem to come up around conversations about health care. By coincidence each member of our group had an incredibly relevant story to the advocacy issues we went to the Hill to support. The group鈥檚 ability to smoothly transition from one issue to the next with a powerful story was part of what made the day on the hill the most impressive I have ever seen, including during my time as an intern for Senator Brown of Ohio. We were able to get through to legislative staff who represent some members who infrequently align with our policy priorities, which really restored my faith in the fact that anyone really can make a difference by speaking up and speaking out.

The Reception

The congressional reception for many of the community members is a moment of relaxation to cap off a long day; for HFA staff, this is another duty to fulfill and another opportunity to court change makers. House and senate staffers were invited to enjoy our company as we presented advocacy awards to members of Congress who have been allies to our community in the previous year. The event included food and thus interns and staff flocked to learn more about the issues important to our community and score some free apps. I was only the constituent for two of the meetings that occurred earlier that day, so it was ironic that while trying to call my nerves about my upcoming reception speech I happened to sit down next to the Deputy Chief of Staff for Ohio Senator Rob Portman. I was able to do more at the reception with my story to educate this high ranking official about our community than in the meetings earlier in the day. Using the training I received with the ALC, I was able to engage with a woman who is instrumental making the concerns of constituents like us into black letter law. After introducing her and the legislative aide for health to other Ohioans at the reception before my speech, I was able to address the room and make a great impression as a resource about bleeding disorders for this office. We were even able to give them the leave behind packet from our meetings to further provide relevant information on our policy goals. It was a great night, and this made it even better.

The Hearing

On top of everything else we did during this period, HFA鈥檚 own Sonji Wilkes was called to testify before the House Energy and Commerce Subcommittee on Health about surprise billing. This day presented a unique opportunity for our community to be the foremost patient perspective on this issue which plagues nearly everyone in our community at some point. It was an intense experience to witness Sonji bravely discuss the issues her family faced because of this despicable practice. While Jasmin and I were mostly there for moral support, we made ourselves useful getting snacks for Sonji and other HFA staff when a vote caused a much-needed intermission from the hearing. Advocacy can take many forms in many ways, but it鈥檚 not often that our advocates get to be part of relevant policy discussions at the highest levels; through Sonji鈥檚 testimony, we were all given a voice that day.

Final Notes

The 81-hour period discussed throughout this post was one of the most exciting stretches in my life. Being on the move and working under pressure energizes me. Perhaps that鈥檚 why I wanted to take part in this internship at HFA and am so happy working here. I could not be prouder to be part of a community that can rise to the occasion in so many different circumstances to make its voice heard on the things that matter most to us. I met so many new people and realized just how high the stakes are for what we do here.

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