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The midway point of our Policy and Government Relations Internship is an excellent time for Jasmin and Dylan to reflect on the first five weeks of their internship. In this blog post, they break down what an average week looks like for them as HFA interns and what the rest of the summer holds.

Jasmin:

As we approach the half-way point in our internship, things have started to slow down on Capitol Hill with the congressional recess. Although things have been a bit less hectic, Dylan and I have kept busy! With some extra time in our schedules, we are beginning to work on our federal and state research projects. With the help of our policy wiz, Miriam, I have been busy reading fascinating articles and studies to help me prepare for my project. I have decided to compare and analyze different healthcare models for my project. I will mostly focus on comparing our system to the United Kingdom鈥檚 single payer system and how each effects patients with bleeding disorders differently. I am interested in exploring this topic as Medicare For All is growing in popularity and may even become a determining factor of the 2020 presidential elections. In fact, in a Kaiser Family Foundation study from April 2019, it said that 56 percent 鈥渇avored a national health plan in which all Americans would get their insurance from a single government plan.鈥 With this issue on the rise, I want to help the bleeding disorders community understand how this change could affect them as we are such a rare and vulnerable patient community.

Additionally, this extra time has allowed us to attend more congressional hearings and briefings that interest us. For instance, we recently attended a hearing聽from the House Energy and Commerce subcommittee on Health about 鈥淪trengthening Health Care in the U.S. Territories for Today and Into the Future鈥 which highlighted the issues facing the territories, specifically Puerto Rico鈥檚 lack of funding and increasing issues after hurricane Maria. We also recently attended a day long Future of Healthcare Summit hosted by The Hill that helped me understand some new technologies, emerging therapies, and issues. 聽Representative Walden from Oregon was a speaker and brought up Sonji Wilkes, HFA鈥檚 Advocacy team member, and her experience with surprise billing and her son鈥檚 hemophilia. This was an exciting moment as Rep. Walden put a spotlight on hemophilia for a moment and advocated against surprise billing, which is an important issue for our community.

Although we are often working individually, HFA鈥檚 D.C. team meets every Monday morning to connect and share schedules. This has been a nice start to my week and I always look forward to hearing and getting to know everyone a bit better! Additionally, we meet with our supervisor, Sarah, at least once a week to allow a time to go over our questions, projects, and events. This time has really helped me explore my ideas and questions, gain insight from an advocacy expert, and reflect on and improve my work. Sarah is always committed to help us improve and provides us with so many great resources and opportunities to continue our growth. We also have been lucky enough to sit in on the Policy, Advocacy, Government, and Education Team calls. We get to hear the team plan and tackle new ideas and getting this insight into their meetings has helped me understand how the PAGE team runs and gives me a great model of communication to follow and learn from.

So far, this summer has been flying by! I am shocked that we are already halfway through our internships and hope I can soak in the rest of my time here. My calendar is beginning to fill up for our last few weeks, with plenty of exciting events and hearings! I am especially looking forward to developing my research paper and participating in our Summer Educational Seminars in Kentucky, which will be a new place for me to visit. Besides my time at work, I have a few visitors to look forward to! I am excited to explore the city with them and show them some of my favorite spots.

Dylan:

Each year, HFA Policy and Government Relations Interns create a policy project that provides insights and informs our knowledge on an important issue in the bleeding disorders community. The goal of these projects is that we, members of the community, become sources of information on these topics, but also that we produce material that can be transformed into usable resources for HFA. My policy project focuses on guiding young adults through the health insurance process which is a real struggle for many of my peers. The bleeding disorders community does not have its own specific resource to guide affected young adults through the process of where to get insurance, how to keep it, and what policies fit our needs. My goal is to build a policy project that can be used throughout our community to inform young adults on this issue in a relatable manner. Young adults in the bleeding disorders community are not always aware how changes to health care policy will affect them, so it鈥檚 important to ensure our communication with them best fits their needs.

While the Affordable Care Act allows young adults to stay on their parent鈥檚 health care until they are 26, we still need to prepare members of our community for this last great leap into adulthood. Creating a resource for young adults on this subject requires facilitating a discussion on many different aspects of health care while keeping it interesting. It鈥檚 important to ensure young adult members of the bleeding disorder community make informed decisions for themselves wherever they are in life because a bad health care decision between 18 and 30 can have a permeant effect on financial health. As a young adult writing this guide for my peers I have a true understanding that we all have different life circumstances, goals, and health needs. My insights as someone who is trying to make these decisions too, gives me a little credibility to highlight this issue. The financial burdens of getting and keeping health insurance will become more manageable if we prepare for them and factor them into our decisions. The process of seeking out the best coverage for your life and health circumstances is important because we should not have to fear the health care system. Health Insurance should be there to cover the costs of our care, not cause debilitating financial injuries with shady exclusions hidden in the fine print.

When my policy project is complete I hope I can transform this resource into a presentation that can be used by bleeding disorder community members all over the country to learn more about health care. Ultimately, the better informed we are, the less likely we are to encounter difficulties we cannot solve ourselves in the health care system. As a young adult who will soon have my own dealings with health care, being literate enough on this subject has already helped me get by and made me a tool to others in similar situations. This project focuses on both the policy and advocacy angles by discussing how to advocate, disclose bleeding disorders, and provides a brief history of health care in America. Each of these views of the health care system and how it developed into what we see today will enrich our abilities as personal and community advocates. When we can better understand the situations behind the obstacles we face, I believe we get better at managing them.

In my other work at HFA, I find that I am getting better and better at developing my soft skills in the professional world while working on these important projects. The summer is flying by and my time in this role is nearing the end as more of my time is spent in research mode to generate the best discussion on these issues the community can have. It is an enticing environment at HFA, where something is always going on and the opportunities to do amazing things for our community are there for the taking. There is a certain thrill that comes with doing a job that matters and has positive effects that you can see. The work that we have done here so far means so much to me because my efforts are part of the valuable work this organization does for the patients in our community at large.

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