Special to the OBSERVER
A new campaign looks to connect Californians living with sickle cell disease with comprehensive care.
The “Neglected No More” public service advertising campaign was launched by the Sickle Cell Disease Foundation in December and highlights “sickle cell warriors” and the openings of specialized adult sickle cell disease clinics across the state.
The campaign highlights Networking California for Sickle Cell Care’s creation of a groundbreaking continuum of care for adults living with the inherited blood disorder.
“I was diagnosed with this disease at two 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, Sickle Cell Disease Foundation’s implementation strategist.
“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 health care 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, primarily Blacks and Hispanics, had no access to the care needed to keep them well and prevent their premature deaths. This forced individuals in crippling sickle cell pain crises to the emergency room, 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 an NCSCC participating clinic, providing care for individuals living in the greater Oakland Bay Area,” said Ward Hagar, director of the adult sickle cell center at 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 Networking California for Sickle Cell Care. Since its inception, it 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 Gov. 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.”
The Neglected No More campaign aims to raise awareness around sickle cell disease and elevate patient voices that have been silenced far too long. Supporters and people with sickle cell disease can follow the campaign on social media through the hashtag #NeglectedNoMore.
This article is part of a series that highlights sickle cell’s impact on the African American community and how medical professionals are working to remove barriers to care and ensure that patients get the treatment they deserve.