Introduction to the Pacific Sickle Cell Regional Collaborative For Policymakers
Despite advances to reduce preventable morbidity and mortality in sickle cell disease (SCD), the most common inherited blood disorder in the United States, widespread implementation of evidence based therapeutics, policy, and health care delivery interventions into practice remain unrealized. This unfortunately places SCD as a tragic example of health disparities since its identification over 100 years ago. These implementation gaps exacerbate SCD complications — pain, increased risk of infection, stroke, anemia, acute chest syndrome, bone disease and organ damage. As a result, health related quality of life is often poor and lifespan is significantly shortened in the absence of knowledgeable healthcare providers, particularly for adults.
Social determinants of health frustrate building and sustaining SCD health systems and health outcomes. In our nation, SCD most commonly affects individuals of African American and Hispanic descent. Economic disparities pose access barriers to receiving treatment. Many reside in disadvantaged communities and rely upon government health insurance. The sickest with SCD are unable to work, and thus have only Medicaid. Fewer and fewer providers are willing to see these complex patients with public insurance due to the low reimbursement rates.
Healthcare workforce shortages further impede access to care: few adult providers are trained to manage SCD, and there are dwindling numbers of adult hematologists. This aggravates the creation of transition programs for youth with SCD who reach adulthood. Furthermore, there is no regional SCD public health capacity building effort to address systems gaps at the patient, health care provider, and policy levels. Bottom line: the quality of care for SCD is poor, due to a lack of access to specialty services; and insufficient reimbursement to sustain or build the community based multidisciplinary teams needed to prevent complications and improve health outcomes.
The Pacific Sickle Cell Regional Collaborative (PSCRC) seeks to build a regional system for SCD clinical services, policy, and workforce to improve the health outcomes, decrease morbidity and mortality, and maximize health related quality of life. Our collaborative includes SCD Comprehensive Care team representation from all 8 states and the Pacific basin, State and Territorial Departments of Public Health (including Title V Maternal and Child Health and Medicaid), surveillance, and family-to-family community based organizations. The Pacific Region encompasses roughly one-third of the continental U.S. land mass. Its population is one of the most diverse in the nation. Care will be provided in community hospitals and clinics, academic medical centers, federally qualified health centers and within primary care provider (PCP) networks. The Collaborative leaders have decades of experience in building and sustaining regional systems of care for other complex genetic blood disorders. We can therefore leverage resources and use this expertise to supplement and enhance HRSA funding to create a sustainable SCD healthcare delivery and community support program.