Reversing Decades of Neglect to Improve Care for Adults with Sickle Cell Disease
In 2019, the Center for Inherited Blood Disorders (CIBD) and the Sickle Cell Disease Foundation (SCDF) came to Perry Communications Group (PCG) in search of a policy solution to improve care for adults with sickle cell disease. Due to decades of neglect and suboptimal care, California adults living with the inherited disorder were dying in their early 40s.
To ensure this vulnerable patient population was neglected no more, PCG designed a public affairs campaign that not only improved awareness of sickle cell disease but also articulated to policymakers the urgent need for specialized, comprehensive care. As a result, CIBD and SCDF secured funding in the 2019 State Budget to launch Networking California for Sickle Cell Care (NCSCC), the state’s first network of comprehensive sickle cell disease clinics.
THE RESULTS:
- Secured $15 million in the 2019 State Budget followed by $5 million in the 2024 State Budget.
- NCSCC established a network of 12 clinics in regions most impacted throughout the state, delivering specialized, compassionate care and trained hundreds of sickle cell specialists and primary care providers through a range of clinical programs, including comprehensive SCD guidelines, compassionate and culturally competent care, intensive boot camps, pain management workshops, and expert-led lectures.
- Launched the Neglected No More coalition to continue to empower patient voices that have been historically silenced and amplify reach, engaging like-minded patient advocacy organizations, chambers of commerce, social justice leaders, provider groups, and advanced practice registered nursing associations.
PCG continues to work with both CIBD and SCDF in an ongoing manner, providing public affairs, media relations, and social media support. Recent work includes securing a 10-part series in The Sacramento Observer, California’s most prominent Black newspaper, “Painfully Aware: Understanding Sickle Cell and Its Impact on the African American Community.” In addition, the PCG team developed a comprehensive toolkit for Sickle Cell Disease Awareness Month 2024, ensuring advocates, their family members, and friends are empowered to educate their networks about SCD and how they can make a difference.