Advocacy Series: Highlighting Rare Across America
As I mentioned in part one of our two part series on Advocacy, the role of advocacy in rare disease helps to ensure that policymakers and legislators know about challenges facing rare disease families, patients, and caregivers. In this post we are going to be looking at one of our ambassadors, Drew Freedman, and his experiences directly interacting with legislators to advocate on behalf of the histio community.
Last month. Drew was fortunate enough to people able to participate in the Rare Across America program run by the EveryLife Foundation. Rare Across America helps to give rare disease advocates a voice in state and federal policy. In 2022’s Rare Across America there were 416 rare disease advocates participating in meetings with their federal legislators, 242 meetings with Members of Congress or their staff and 48 states plus the District of Columbia (where Drew calls home) participating.
Drew is a histio warrior, having been diagnosed with Langerhans cell histiocytosis shortly after being born. After living in and out of the hospital for about four years, receiving chemotherapy, and having multiple surgeries, he has been free of histiocytosis for 22 years. Drew dedicates his time to spread awareness about histiocytosis so that those out there who are in search of help like his family was, will know about the resources, specialists, and community that the Histiocytosis Association provides.
Why do you participate in advocacy?
Prior to being diagnosed with LCH, my family was extremely confused and worried as no one could seem to find out what was happening to me. Given that histiocytosis is a rare disease, I don’t believe it is the first thing people think of it when in a similar situation. I want to make sure that the histio community has a voice and receives the proper recognition it deserves so we can make sure those that need help will receive it. Additionally, I want others that are going through those confusing times like my family went through to know that they are not alone. We will continue to speak for them and ensure that we are doing everything possible to make sure they have all the resources they need.
In your opinion, what is advocacy accomplishing?
It is expanding our histio community from just those directly impacted by the disorder to all of those around. We want to ensure that we are providing the proper resources and detecting any histiocytic disorders as early as possible.
Tell us a bit about advocacy week(s) with EveryLife; what has the opportunity provided and how have you engaged?
I was fortunate to hear from the Rare Disease community about the challenges that other organizations and individuals go through. Sometimes we get stuck in our own bubble that it takes an organization such as the EveryLife Foundation to give us access to each other. I was fortunate to speak with an individual from my local elected representative’s office and advocate for the Rare Disease community, but especially for those impacted by Histiocytosis.
The Histiocytosis Association participates in advocacy all year round by sitting on several panels and committees to help share the patient voice with key stakeholders including the National Comprehensive Cancer Network (NCCN), the Patient-Centered Outcomes Research Institute with the FDA (PCORI), and the National Center for Advancing Translational Sciences (NCATS). We also engage in discussions with state and national policy makers to advocate for more effective policy surrounding newborn screening, telemedicine, and access/development timelines and genetic counseling.
One of the easiest ways to get involved is through EveryLife Foundation. You can contact us at firstname.lastname@example.org to receive more information or explore their website to save the date for the next advocacy week (there are often 2-3 opportunities every year)! If you do participate, we can help you prepare your one-sheet to send to your local representatives and EveryLife will help you with the presentations. They are generally done in a group with others from your state or region, so you will have heaps of support going into these. The more representatives across all states who are focused on supporting healthcare policies that will benefit rare disease, the more likely we are to see change. You can make an impact!
I would like to give another huge thank you to Drew for sharing his story and his experiences with Rare Across America and all he advocates for histio.