source: American Society of Hematology

year: 2017

authors: Susan Claster, Ellen Rothman, Mary Brown, Judith Baker, Diane J. Nugent

Introduction: In 2005 the life expectancy for adults with sickle cell disease (SCD) in Los Angeles (LA) county was 35-38 years (Powars 2005), lower than the national average. Lack of access to care was a significant factor in these early deaths. By comparison, the lifespan of patients in the UK National Health Service is much longer (Gardner 2016). In 2009 the only comprehensive adult sickle cell program in LA outside the Kaiser system closed. The California Department of Public Health found that 51% of the adults in CA with SCD live in LA county (Paulukonis 2014). Thus the majority of the 1500 adults living in the largest county in the US have had no access to comprehensive care for over 7 years. The problem is especially acute in southern LA county where many of the adults reside. The dearth of programs for adults drives them to seek recurrent care in emergency departments. Recognizing this as a county-wide public health issue, the LA Department of Health partnered with the Pacific Sickle Cell Regional Collaborative (PSCRC) in 2015 to establish an advanced practice medical home at the Martin Luther King Jr. Outpatient Center to fill this important gap in services. Results: After intense and focused planning, including a PR campaign, the clinic opened August 2016. The staff includes a hematologist with expertise in SCD, a primary care provider, a nurse educator and two community health workers trained by the Foundation. In the first 10 months we have cared for 23 patients. All but two of these patients are from the south LA county area. The age range of the patients is 20-62 years of age. The majority of the patients are genotype SS. All patients were on Medicaid or Medicare insurance. This first cohort of patients is notable for health complications due to lack of coordinated, preventive services. This was measured by a number of indicators: outpatient visits in the 12 months prior to coming to MLK, immunizations, iron overload, and use of Hydroxyurea (HU) (Table 1). One quarter of the patients had no care other than ED or inpatient care for the 12 months preceeding their first visit to our clinic. 100% of the patients had were missing one or more adult immunizations (hepatitis B, tetanus, pneumococcal disease, meningitis, seasonal flu, HPV).Three patients are severely iron overloaded due to multiple transfusions as inpatients with no hematology follow up to address chelation issues. One of those patients required a liver transplant. 39% of the patients (9 patients) seen were eligible for HU but were not on the drug. 17% (4 patients) were on the drug but were noncompliant or poorly managed with episodes of neutropenia. Of those 13 total patients, 11 are now on HU with good compliance and excellent monitoring of drug.

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