Sick Cells hosted the hybrid Empowered Patient Leaders Workshop on June 26, 2025 in Washington, DC and online. This participatory event convened patient leaders, caregivers, providers, patient organizations, and other stakeholders to strengthen their capacity in developing patient-centered core impact sets.
To assess coverage and access restrictions in state Medicaid programs for therapies prescribed to individuals with SCD, Sick Cells contracted Artia Solutions to conduct an analysis of coverage policies in the 50 states and the District of Columbia. Sick Cells identified commonly used pharmacy benefit products indicated to treat complications of SCD to include in the analysis. Using comprehensive formulary and medical policy data provided by Artia Solutions, augmented by Sick Cells research, we analyze coverage policies for state fee for service (FFS) programs and managed care organizations (MCOs) for SCD therapies.
This report is a tri-collaborative effort with Sick Cells, the National Donor Marrow Program (NDMP), and the Sickle Cell Reproductive Health Education Directive (SC RED). This health equity project, titled Transplant Equity and Awareness for Sickle Cell Disease (TEA for SCD), aims to increase stem cell donation and raise awareness about Bone Marrow Transplant (BMT) as a treatment option for sickle cell disease (SCD) within Black and Hispanic communities across the U.S.
In 2020 the Institute for Clinical and Economic Review (ICER) assessed three newer medications, Crizanlizumab, Voxelotor, and L-Glutamine for SCD. In collaboration with ICER, Sick Cells, a U.S. based advocacy organization, developed and fielded an online survey to gather U.S. patient and caregiver work and activity impairment, and out of pocket costs (OOPCs) to include in the review of the medications as contextual information
In 2023, Sick Cells conducted our Community Health Equity Research and Promotion (CHERP) Initiative. This project focused on critical themes such as lived experience, access to care, cultural barriers, patient-provider relationships, stigma, and mental health. Our journey involved engaging with diverse subpopulations within the sickle cell community, including the Aging, Hispanic/Latinx, Incarcerated/Formerly Incarcerated, and LGBTQIA+ communities. This report provides a comprehensive overview of the strategies employed in outreach, emphasizing the importance of clear communication, establishing a single point of contact, and respecting the unique circumstances of potential participants.
To assess coverage and access restrictions in state Medicaid programs for therapies prescribed to individuals with SCD, Sick Cells contracted Artia Solutions to conduct an analysis of coverage policies in the 50 states and the District of Columbia. Sick Cells identified commonly used pharmacy benefit products indicated to treat complications of SCD to include in the analysis. Using comprehensive formulary and medical policy data provided by Artia Solutions, augmented by Sick Cells research, we analyzed coverage policies as of February 2023 for state (FFS) programs and managed care organizations (MCOs) for SCD therapies.
Sick Cells worked in collaboration with the University of Southern California Hematology Utilization Group Studies (USC HUGS) and the Comparative Health Outcomes, Policy, and Economics (CHOICE) Institute at University of Washington School of Pharmacy, to identify and assess core elements of value to be incorporated into SCD research measures.
Sick Cells collaborated with the University of Pittsburgh to study the barriers to accessing disease-modifying treatments.
Sick Cells collaborated with QC Medica and Vertex Pharmaceuticals to survey individuals living with sickle cell disease (SCD) on the impacts of the disease on quality of life and health quality.
Pfizer worked with Sick Cells to develop a survey to understand how much different features of potential sickle cell treatments matter to people with sickle cell disease and caregivers of people with sickle cell disease.
