Blog: Intern Introspective #2

Capitol rooftoop

Congressional hearings, Hill Days and health webinars, oh my!

Four weeks into the HFA internship and I have been able to do each of these along with so much more. Finally, being at this internship means I can continue to pull the thread – if you will – on various healthcare issues that affect the bleeding disorders community and have been on my mind for some time. Being at the internship and in D.C. for some time has helped me gain a better idea of who & where to take my various questions to regarding these issues. My main topics of interest include legislation related to the Hemophilia Treatment Centers (HTC) network, Pharmacy Benefit Managers (PBMs), and Medicaid unwinding. Learning more about these various issues may come in many ways.

Last week, for example, my fellow HFA intern Karina and I tagged along for the Hemophilia Alliance’s Hill Day. The Hemophilia Alliance is “not-for-profit organization that comprises federally funded hemophilia treatment centers (HTCs) that either have, or are seeking to have, pharmacy programs under Section 340B of the Public Health Service Act.” On the visits we were each paired with teams from different states. As one of the few Floridians, I was teamed up with Team Georgia. In preparation for our visits on the hill, I learned about the 340B drug pricing program and how it relates to the HTC network. Although I was already aware of the HTC network and most of the services provided, I did not realize the history of how it was founded and funded. As I shared with congressional staffers, HTCs are a shining example of comprehensive healthcare done effectively and efficiently that should continue to be supported by the 340B drug pricing program.

When it comes to PBMs, my journey on learning more about them began during my previous internship in Congress. Here, I was able to visit in-person congressional hearings on health. Fast forward to my internship at HFA, I can reflect on these hearings and consult with members of our Public Affairs team to gauge if and how this issue is being addressed within our community. As for Medicaid unwinding, this is important to me because I am from Florida, the fourth highest state in the nation for Medicaid recipients. Regardless of one’s option on Medicaid, there is a clear need for reform to patients who have preexisting conditions or fall in the Medicaid gap. It has also been interesting – to say the least – following how different states are handling these issues in Medicaid. While the approach and patient needs vary by state, I am certainly making note of what legislation sounded good in theory but bad in practice and vice versa.

As I continue to learn more about healthcare and health policy, I cannot help but think back to when I felt overwhelmed learning about health insurance as a younger teen at my local chapter’s events. Some years later, I knew I wanted to know more which led to my participation in Tallahassee Days and eventually Washington Days. Today, I consider myself an advocate but naturally I still have many questions. My internship experience at HFA so far has shown me that having questions is more than okay, it is great. I have found that there is always something new to learn, especially when it comes to healthcare policy and finding new avenues to advocate for the bleeding disorder community.

Noemy E. Diaz-Burgos (she/her/hers), 2023 Summer Intern