Sickle Cell Disease Foundation of California Highlights Needs of Adult Patients on World Awareness Day

Sunday, June 19, is World Sickle Cell Awareness Day. The Sickle Cell Disease Foundation of California is one of the organizations focusing on the still-unmet needs of patients affected by the disease, and has announced the opening of multidisciplinary sickle cell disease (SCD) services, an initiative by the Pacific Regional Sickle Cell Collaborative.

On June 19, adults with sickle cell disease in California will emphasize the urgent need for additional services. Later this summer, the LA County Department of Health Services plans to offer clinical services specifically designed for adults with sickle cell disease at the MLK Jr. Outpatient Center in Los Angeles, the city where most California adults are suffering from the disease.

There has been no sickle cell clinic at the MLK Outpatient Center since the closing decades ago of former U.S. Surgeon General David Satcher’s SCD research center at the former King/Drew Medical Center.

The new clinic will fill a major gap in expert health services for more than 1,000 adults in the area and, hopefully, decrease unnecessary treatment delays, pain, avoidable costs, and premature deaths that happen as a result of the very few clinicians that can manage the complications that affect adult SCD patients, according to the Sickle Cell Disease Foundation of California.

Life expectancy among Los Angeles adults with SCD is now under 40 years of age, according to a four-decade observational study.

“The loss of care for patients with SCD over the past two decades is a healthcare tragedy and is a consequence of our system’s lack of recognition and support for the interdisciplinary teams needed to support families and patients with complex, chronic disease,” said Diane J. Nugent, M.D., principal investigator and founding president of the Center for Inherited Blood Disorders in Orange County, California, in a press release. “The new MLK services are at one of many new sites needed throughout Southern California to improve outcomes and quality of life for all patients.”

Mary Brown, president and CEO of the Sickle Cell Disease Foundation of California, said adults with sickle cell disease deserve healthcare providers who “understand the disease, its complications, and their pain. Knowing the MLK staff planning and providing the services gives me great confidence they will meet the community’s needs.”