After a long history of neglect in California, people living with SCD are finally beginning to access the care they need to extend the length and quality of their lives.
While the pandemic exposed a number of glaring health inequities for people of color, there has existed a devastating health inequity for Black Californians long before COVID-19 came on the scene. In the world of sickle cell disease (SCD), a disorder that primarily affects Black and Latinx communities, is at the intersection of racism and a healthcare system where we find Black lives are discounted, uncared for, and ultimately forgotten.
SCD causes debilitating and deadly symptoms, including chronic pain, stroke, lung, and kidney and liver failure and is often falsely referred to as a “Black disease.” Most cruelly, people with SCD also experience the depths of system racism and implicit biases that cause lower quality of care.
Sudden and severe
The emergency room is a very common place to seek care because the complications of SCD are unpredictable and severe. But due to poor provider understanding of SCD and the invisibility of their symptoms, patients presenting in the emergency room are often given a bus ticket and sent home.
“You’re not hearing me. I’m used to pain, but this is unusual. This is scary,” said Phillip Okwo, a patient living with SCD after being told to go home, drink water, and take better care of himself by a doctor.
Due to the lack of knowledgeable providers and equitable care for adults living with SCD, the diagnosis feels like a death sentence for many. The average life expectancy for Californians living with SCD is 43, compared to the national average of 78. Los Angeles is home to one of the state’s largest populations of people living with SCD, with approximately 2,100 adults and children who have it — and experts say there are actually many more.
Addressing inequity
Thanks to the hard work of SCD experts, advocates, and policymakers, this glaring health inequity is now being addressed. In 2019, Assemblymember Mike Gipson (D-Carson) introduced legislation to build a network of adult clinics throughout California, which was secured in Gov. Gavin Newsom’s 2019 Budget Act, and led to the creation of Networking CA for Sickle Cell Care. The network is the state’s first and only system of specialized SCD clinics, with an initial focus in Los Angeles County.
The MLK Jeffrey Smith Sickle Cell Clinic, a ground-breaking facility designed specifically to meet the complex healthcare needs of adults with this disease, was opened in the heart of South Los Angeles. A division of the L.A. County Department of Health Services, the clinic employs professionals trained to treat SCD, and offers pain management, outpatient appointments, child-to-adult transition services, coordination with clinical trials, community outreach, and education.
Two years into the three-year scope of the project, the network welcomed 10 additional adult Sickle Cell Disease clinics including locations in Alameda, Fresno, Kern, Orange, Sacramento, San Bernardino, San Diego, and San Mateo counties.
Importantly for the first time, the network is now gathering patient-generated, real-world data and evidence to drive culturally competent treatment, create value-added care plans, improve outcomes, and establish best practices.
Just the beginning
After a long history of neglect in California, people living with SCD are finally beginning to access the care they need to extend the length and quality of their lives. Networking for California Sickle Cell Care continues to strengthen its commitment to work with patients and empower the community. Through improved access to high-quality outpatient care and medications to prevent painful complications and organ damage, patients will no longer need to resort to emergency rooms or hospitalization for continuity of care.
Thanks to the network and California’s innovative funding, thousands of Californians living with SCD can begin to get access to the care they need and deserve.