Sharing Your Story on the Hill

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Sharing Your Story on the Hill

Storytelling is a powerful advocacy tool that provides a platform for the SCD community to express concern over health challenges. Sharing tales of personal experiences brings to life the impacts of certain policies and legislation, and inspires leaders and communities to take collective action. The upcoming National SCD Policy Forum is an event that opens the door for SCD advocates to speak with their legislators on what is most important to them and their communities. This blog shares experiences of sickle cell disease advocates who have previously participated in Hill events, and highlights the immense value of advocacy through storytelling. 

What is the National SCD Policy Forum, and Why Does it Matter?

The National SCD Policy Forum brings together sickle cell advocates from around the country for a federal advocacy event that will be held on March 21 and 22. This tri-collaborative event is hosted by Sick Cells, the Sickle Cell Disease Association of America, Inc. and the Sickle Cell Community Consortium. 

The first day of the event includes educational sessions on federal advocacy trends as well as opportunities to “practice your pitch” before meeting with legislators. The day will also feature open discussions on current gaps in SCD policy, providing a chance to brainstorm concrete solutions that would best serve the SCD community. The second day of the event hosts the “Virtual Hill Day,” where advocates will meet virtually with legislators to educate them on SCD issues and policy recommendations. 

The event is a chance to spotlight all the great work that SCD advocates have been doing and bring important issues to legislators’ attention. It also is an opportunity for SCD advocates to hone their advocacy skills by learning, exchanging ideas, and continuing to amplify voices of the SCD community.

Working Together Towards a Common Goal 

The National SCD Policy Forum is hosted by three organizations working in collaboration with each other: Sick Cells, Sickle Cell Disease Association of America, Inc. (SCDAA), and Sickle Cell Community Consortium (SCCC). All three of these organizations have a shared goal of building awareness of federal opportunities for SCD, and educating legislators on funding and policy interventions that support the needs of SCD Warriors and the SCD community as a whole.

“Advocating as a collective can create legislative impact,” said Ashley Valentine, the President and Co-Founder of Sick Cells. “The National SCD Policy Forum enables the SCD community to encourage prompt action from elected officials to support legislation that will improve health outcomes for people living with SCD.”

Warrior Stories

Advocacy may seem scary and best suited for people who have years of research or advocacy experience under their belt, but the truth is anyone can be a powerful advocate. To illustrate this, here are stories of two SCD warriors who last year met with their federal legislators to advocate for SCD priorities:

 Terrance Hill

“My name is Terrance Hill, and I am a 43-year-old who was born with a pre-existing condition called Sickle Cell (SS) which could have disheartened me, but only magnified the word ‘Warrior.’ I advocate to help improve the quality of life for our community of Warriors, since our afflictions are never the same, but the hardships are similar mentally, physically, and financially. 

Participating in a policy forum gives advocates the opportunity to come in contact with their state officials to continue their ongoing conversations on improving care to help ease the burden for the community of warriors. It may seem challenging, but practice makes perfect. Preparing beforehand with toolkits that help with your story, and having a team that will listen to your pitch can improve your purpose. For any ambassadors who desire to participate, look forward to building relationships that will help make a difference in our community of Warriors afflicted with Sickle Cell Disease.”

Levell Strong

“My name is Levell Strong, I am a Sickle Cell Warrior and I advocate because I want to see better care given to my fellow warriors and myself. It was awesome to participate in the policy forum and get a chance to talk to legislators about providing more resources towards sickle cell care. Before the event I was able to help prepare folks on community organizing strategy and why we tell our stories to legislators. During the event I spoke with a group of warriors in Washington state to legislators about co-sponsoring the Sickle Cell Disease Comprehensive Act, which would create a demonstration program through medicaid and appropriate funds to existing Sickle Cell Programs. I feel telling our stories and coordinating alignment really helped the people we talked to understand why more care around Sickle Cell is needed. Even though it was not my first Hill Day I still get nervous and normally make sure to eat and focus on my breathing before speaking to legislators and staffers. My advice for other ambassadors would be just to get involved. I felt very well prepared by the Sick Cells team and look forward to participating again!”

Tips and Reminders 

If you are excited about participating in the National SCD Policy Forum, here are some tips and tricks to make sure your voice is heard and your story can make a tangible, positive impact on the SCD community:

  • Be informative, compelling and concise. You may only have 90 seconds to share your story with legislators, so make sure you know ahead of time what you want to say and what key points you want to get across.
  • Take Terrance’s advice and be prepared before making a pitch. You can either practice on your own or take advantage of resources such as the Share Your Story Toolkit that can help you craft your story.
  • Have a clear call to action. Take your advocacy to the next level by providing your legislators with concrete steps to take to improve SCD policy
  • If you find yourself struggling with nerves, remember that what you have to say is valuable and important. You can always follow in Levell’s footsteps and take a deep breath before speaking. You got this! 
Use Your Voice

Events like the National SCD Policy Forum are a great opportunity to further build upon the work that SCD advocates have done over the years. It is important to remember that your story is the most powerful tool you can use to impact policy decisions. Being an SCD advocate is as easy as using your voice to share your SCD story. 

  • Register to participate in the National SCD Policy Forum by March 10th. Space is limited! Register here!


Published March 2023

Thank you to the 2023 sponsors of our Faces of SCD Storytelling Program

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