New Clinic in LA County to Close Gaps for Adults with Sickle Cell Disease

Posted August 04, 2016 by Sonya Spillmann, RN

Sickle Cell Blood Being Drawn
The new sickle cell disease clinic Los Angeles County will bring critical care to an underserved area.     
In California, 51 percent of adult patients with sickle cell disease (SCD) live in Los Angeles County, which lacks an adult SCD clinic. As a result, coordinators from the U.S. Health Resources and Service Administration’s Sickle Cell Disease Treatment Demonstration Program (SCDTDP) decided to address this gap in care.

“We got into this work because people were dying, and dying unnecessarily. Our goal is to give them life,” says Mary Brown, President and CEO of the Sickle Cell Foundation of California and member of the Pacific Sickle Cell Regional Collaborative (PSCRC), one of the SCDTDP’s four regional grantee teams.

The PSCRC was eager to decrease the gap in care for adults with SCD in Los Angeles County’s public health system. Working with the Los Angeles County Department of Health Services, the partners decided on opening a comprehensive sickle cell clinic as a solution for this underserved and highly complex adult population.

“We are constantly modifying our services to match the community’s needs,” says Ellen Rothman, MD, Chief Medical Officer of the Martin Luther King, Jr. Outpatient Clinic

Along with Rothman, Susan Claster, MD, Adult Hematologist at the Center for Inherited Blood Disorders (CIBD); Judith Baker, DPH, CIBD, Policy Director for PSCRC; and Mary Brown, President and CEO of the Sickle Cell Disease Foundation of California, have worked intensively to prepare for the clinic’s opening. With a mission statement of “The Care You’ve Always Wanted,” the Sickle Cell Clinic at Martin Luther King, Jr. Outpatient Center will open on August 2.

Unlike pediatric patients with SCD, who typically receive standardized care from knowledgeable providers, older teens and adults do not have the same access to comprehensive care, despite the increase of SCD-related complications associated with the progression of disease, such as severe pain. Patients with SCD are living longer into adulthood, yet the number of knowledgeable Healthcare providers for this age group has not kept pace.

“There are very few places an adult with SCD can go where providers feel comfortable treating them,” says Claster. “This will be a place they can come for consistent care by providers trained to understand the complexities of their disease.”

Based on the concept of a medical home, the LA County center will deliver comprehensive care to patients with SCD. With primary care embedded into its service, the clinic will provide both primary and specialty care in a highly integrated and collaborative environment. Claster will staff the clinic and the patients will have access to a multi-disciplinary team of primary care providers who can provide behavioral and mental health services, pain management and alternative therapies like yoga, social work and community health workers. The MLK Jr Outpatient Center is also home to a wide range of specialty care services. If a healthcare need cannot be met locally, patients will also have access to the full scope of LADHS services.

The Sickle Cell Disease Foundation of California will provide a community health navigator and a community health worker to do initial patient screens. They will assess current health care and insurance status and assist with moving medical records.

“We are devoted to documenting impact,” says Baker. “We want to get the center off the ground in the most thoughtful, feasible and careful way---with our minds, ears and hearts open---making course corrections as we go.”

Because of the complexity of their care, the clinic plans to see six or seven patients a day. They anticipate having a clinic population of 300 patients.

In the future, Baker intends to “design and conduct research and surveillance to document the impact on morbidity, mortality and cost through robust impact evaluations.” She adds, “I’d also like to capture qualitative data on patient satisfaction, experience of care and knowledge about their disorder from their own perspective.” All data will be collected and managed by LADHS and shared as appropriate with partner organizations. Already, the Centers for Disease Control and Prevention (CDC) expressed an interest in a data collection partnership with the clinic.

“The primary goal in launching this clinic is to build capacity for effective, integrated care that honors the humanity of our patients. We hope the clinic will be replicable, sustainable, and high impact. We hope that our experience will inform the care provided to other communities of individuals with sickle cell disease and, in a broader view, any patient population who lives with complex health conditions,” Rothman says.


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