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Advocacy

The mission of Sick Cells is to improve the quality of life and care for people living with sickle cell disease (SCD). Our approach to creating everlasting change includes helping shape public policy, educating the SCD community to be highly engaged advocates and harnessing the power of impactful storytelling. Through these efforts we will end the stigma of SCD and create greater awareness in the general public overall.

To address these challenges, Sick Cells is working to:

Overview of Advocacy Programs

Sick Cells achieves its mission through two advocacy programs: the Faces of SCD Storytelling Program and the Ambassador Program.

Faces of SCD Storytelling Program

Sick Cells documents the lives of people with SCD and their support systems. The purpose is to highlight the resilience of the community and complex challenges the community faces through the voice of the patient. The goal is to eliminate stigma by showing truths from the patients.

What We’ve Learned from Listening to the Community
  • Increased need for data dissemination
  • Increased need for sickle cell trait awareness
  • Demonstrated need for community advocacy tools at the local and federal levels
  • Increased diversity in SCD representation
  • Opportunities to increase participation of family members as SCD advocates

Ambassador Program

Sick Cells’ Ambassador Program is unique in educating and leveraging the skills of diverse advocates as well as serving as a policy hub for the larger sickle cell community including other SCD organizations. Sick Cells has a diverse network of patient advocates that we connect to current events.

What We’ve Learned from Working in the Community
  • Increased need to recruit diverse ambassadors from the SCD community to engage with federal and state legislators
  • Increased need to educate ambassadors about key policy issues impacting SCD
  • Increased need to equip ambassadors with tools for ongoing advocacy at local and federal levels
  • Increased need to host ambassador forums

Overview of Advocacy Priorities

Our federal and state advocacy efforts support our mission of elevating the voices of individuals with sickle cell disease. Here is a list of our current and ongoing policy priorities.

Access and Coverage

At Sick Cells, it is a priority for us to help people get health coverage and ensuring access to essential services and treatment. Access our up-to-date data that we use to advocate for improved coverage.

Policy & Legislation

Learn more about our work to advocate for policies and legislation that improves the lives of those with sickle cell disease.                                                                                           

Value and Cost

Understanding the value of sickle cell treatments has become a priority across the sickle cell disease (SCD) community. Learn about our work to inform value assessments and costs related to SCD.

Overview of Annual Events

Sick Cells hosts two events each year to promote advocacy efforts across the SCD Community: Ambassador Policy Forum and Coverage for SCD Summit.

Ambassador Policy Forum

Every year, our Ambassadors come together for the annual Policy Forum. This event showcases the power of what the sickle cell disease community can bring as a united voice.

Coverage for SCD Summit

This collaborative forum brings together payers, providers, pharmaceutical manufacturers, patient groups, researchers, care teams, and policymakers to discuss ways to tackle the complexities of coverage and access to SCD treatments and care.

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