Campaign Reaches Upwards of Five Million Viewers, Raising Awareness of a Long-Neglected Disease
(ONTARIO, CA) – Continuing their efforts to bring equitable care to California adults living with Sickle Cell Disease, the Sickle Cell Disease Foundation (SCDF) launched a public service advertising campaign highlighting the openings of specialized adult Sickle Cell Disease clinics across the state.
Appearing on social media, in newspapers, on billboards and through streaming audio services, SCDF’s “Neglected No More” campaign reached more than five million Californians in the first half of 2022. The campaign highlights Networking California for Sickle Cell Care’s (NCSCC) creation of a groundbreaking continuum of care for adults living with the inherited blood disorder, which is saving lives and reversing decades of neglect.
“I was diagnosed with this disease at 2 months old and the ugly truth for many adults with SCD is that over time finding great and consistent care hasn’t gotten any easier as we grow into adulthood. Access to quality care is extremely hard to find,” said Jennifer Fields, MPH, Implementation Strategist of the Sickle Cell Disease Foundation. “I can’t express how much of a blessing it is to now have a care network of not only one but 12 specialized clinics with compassionate, knowledgeable providers throughout the state. Because of traveling for my career, I’ve experienced many healthcare systems across the country. The network has delivered the best top-of-the-line service when I needed it most. Every single person with SCD across the globe should never be required to live without this kind of care.”
Four years ago, Californians living with Sickle Cell Disease were virtually ignored by providers and policymakers alike. Thousands of people, who are primarily Black and Hispanic, had no access to the care needed to keep them well and prevent their premature deaths. This forced individuals to present to the emergency room in crippling sickle cell pain crises, where many were turned away and labeled as drug-seeking due to systemic racism and the absence of knowledgeable providers.
“UCSF Benioff Children’s Hospital Oakland is proud to be a NCSCC participating clinic, providing care for individuals living in the greater Oakland Bay Area,” said Ward Hagar, MD, Director, Adult Sickle Cell Center, Children’s Hospital and Research Center Oakland. “The Neglected No More Campaign has given us the resources and infrastructure to identify and to connect with so many more people in need and we hope to serve more and more adults over the next few years.”
In 2019, Assemblymember Mike Gipson (D-Carson) sponsored legislation to address the shameful lack of Sickle Cell Disease care in California, securing $15 million to create the NCSCC. Since its inception, the NCSCC has developed a network of 12 clinics throughout the state, trained and credentialed providers, and built a team of community health workers to conduct patient outreach and address the challenges that have kept patients from receiving the care they need and deserve. This model, a full partnership between community and health care services, is helping patients experience, for the first time, continuity of care and preventing devastating complications that result in avoidable emergency room visits or hospitalizations due to pain or severe anemia.
“We are grateful to Assemblymember Gipson and Governor Gavin Newsom for providing the resources that have allowed us to bring inclusive care to adults living with Sickle Cell Disease throughout the state,” said Mary Brown, President and CEO of the Sickle Cell Disease Foundation. “State leaders must continue to prioritize funding for Sickle Cell Disease so that this lifesaving and groundbreaking Network exists long-term for adults in need.”
With a proven track record of success, the NCSCC is now setting its sights on maintaining quality care while it transitions into a sustainable model within California’s innovative care delivery systems.
If you or a loved one is in need of care, or if you are interested in learning more about the NCSCC, visit https://sicklecellcare-ca.com/about/.
About Networking California for Sickle Cell Care
Networking California for Sickle Cell Care (NCSCC) is the state’s first and only network of specialized adult Sickle Cell Disease clinics. The Network was developed through advocacy and stakeholder engagement supported by data. Learn more by visiting www.sicklecellcare-ca.com.
About the Sickle Cell Disease Foundation
The Sickle Cell Disease Foundation (SCDF) was incorporated in 1957 and is the first and oldest Sickle Cell Disease community-based organization of its kind in the nation. As the only organization in California approved to provide Hemoglobin-Trait Counseling Services and direct the Sickle Cell Educator/Counselor Certification Training Course, SCDF provides life-enhancing education, services and programs for individuals living with Sickle Cell Disease. SCDF broadens public awareness, delivers effective advocacy initiatives, and promotes innovative therapies to ultimately find a cure. Learn more by visiting www.scdfc.org.