Improving Access to Care for 6,000-7,000 Californians with Sickle Cell Disease
Using population-based data, the California Sickle Cell Data Collection program (an initiative of PHI's Tracking California) has established public health surveillance system for sickle cell disease, working to understand the impacts of the rare disease and to inform stakeholders.
$15M committed toward the enhancement of adult sickle cell disease care in California
Chronic Disease Prevention, Data, Technology & Innovation, Healthy Communities
Public Policy Advocacy
Paul English, PhD, MPH, Susan Paulukonis, MA, MPH
In 2012, the number of people living with sickle cell disease in California was unknown. Thanks in part to surveillance work by Tracking California’s California Sickle Cell Data Collection program, researchers now have revealed that there are about 7,000 people living throughout the state with SCD.
Using population-based data, the program has established public health surveillance system for sickle cell disease, working to understand the impacts of the rare disease and to inform stakeholders. Their research has identified which California counties have the most SCD patients, and found that the majority of adults with SCD are going to the emergency room more than had previously been believed.
Because there are limited providers and resources for the thousands of Californians suffering from SCD, the California Sickle Cell Data Collection Program helps to increase access to critical medical care. For example, program data found that there were 2,100 people with SCD in Los Angeles County—and that South LA had no medical clinic that served those with SCD. As a result of these findings, in 2016 the Martin Luther King Jr Hospital opened a dedicated sickle cell disease adult healthcare clinic to serve patients in need.
Since its inception in 2015, the California Sickle Cell Data Collection program has hosted renowned speakers on wide-reaching topics related to sickle cell disease, its impact, care, and healthcare utilization. With an average of 120 participants per webinar, the impact is significant for this rare disease. Over 1,000 people have tuned in to the program’s webinars since they began.
In May 2019, the program presented their comprehensive findings at a Sacramento hearing on challenges faced by Californians across the state living with SCD. Shortly after, the Assembly Bill 1105 was passed by the legislature and signed by Governor Newsom to support more clinics and knowledgeable care providers in the state, workforce development for this disease, and surveillance capacity. As of December 2019, California’s legislature has committed $15 million toward the enhancement of adult sickle cell disease care.
In data from 2016-2018, the California Sickle Cell Data Collection program calculated a median age of death of 53 years—up from their first assessment of 43 years. This good news demonstrates that preventative health interventions for complications of the disease are working, while also signifying the need for continued investment in understanding SCD and improving care.
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