SCD is a group of inherited blood disorders caused by the presence of an abnormal form of hemoglobin. Though it is a disease fraught with various complications that disrupt the lives of patients and their families, it has yet to receive the national attention required to advance care for the individuals living with the condition. As the US healthcare system strives to innovate and improve care delivery for all Americans, the climate is ripe for meaningful actions to be taken to advance care for individuals with SCD.

In November 2020, Sick Cells and Avalere Health convened a multi-stakeholder group of patients and caregivers, patient advocates, government officials, payers, manufacturers, researchers, and medical professionals through a dialogue, “Taking Action on Improving Quality of Life for Individuals with Sickle Cell Disease.” The goal of this meeting was to collaborate and develop consensus-based solutions that will advance treatment and management of SCD in the near term. These solutions ultimately informed the development of the roadmap—a document intended to serve as a practical resource to assist healthcare stakeholders in identifying solutions they can implement to improve outcomes for SCD patients. As a patient-centric guidance to SCD stakeholders, the roadmap includes 4 inter-related domains, as described in the figure below, that comprise an extensive framework for advancing SCD care:

• Improve Provider Support and Education: Given the intricacies of SCD care, not enough providers have the comprehensive training and expertise to care for individuals with SCD. Structured medical education and ongoing training of all providers who are likely to treat SCD patients can lead to better outcomes to patients when they present to the clinical setting.
• Advance SCD Care Delivery and Innovation: Similar to other chronic conditions, SCD requires evidence-based, innovative care delivery. There are opportunities to develop integrated delivery models focused on complication prevention, management, and treatments in collaboration with multi-providers, patients, and their caregivers.
• Support Evidence Generation for SCD: Advancement of SCD management and treatment requires evidence-based interventions and solutions. Vast opportunities are available for stakeholders to conduct research to understand factors that lead to improved patient outcomes and optimal management of the condition.
• Advance Health Policy and Advocacy to Improve SCD Quality of Care: Advocacy is an important tool to increase national, state, and local focus on SCD. It must receive legislative support in order to achieve the goal of improving patient outcomes. Health policies that affect treatment reimbursement, adequate insurance coverage, and funding for research and community-based organizations support must be evaluated to improve outcomes for individuals with SCD.

Individuals with SCD often face difficulties accessing high-quality care as they cope with multiple complications associated with the condition. Although conditions such as hemophilia and cystic fibrosis do not affect nearly as many individuals as SCD, individuals with those conditions experience better access to care and health outcomes. Execution of solutions presented in this roadmap might advance health equity and reduce existing disparities. Avalere and Sick Cells are collaborating with various stakeholders to actualize the various solutions proposed in the roadmap and are open to future collaborations.

Robust details on the solutions presented can be found by downloading the full strategic roadmap.

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