Sick Cells Publications

Through our programs, projects, and partnerships, Sick Cells is always working to expand our knowledge of the SCD landscape and then give that knowledge back to the community. The below publications share our findings and recommendations from what we’ve learned.

Publications Archive

Medicaid Access and Landscape Review

In April 2022, Sick Cells conducted a survey of decision-makers at state Medicaid programs. Survey findings were supplemented with an environmental scan to illuminate the state of access to SCD therapies in Medicaid—where there are challenges today and how access to therapies could be improved.

Sick Cells My Life with SCD Patient and Caregiver Survey Results: Inputs for the 2019 ICER Review

Sick Cells developed and fielded an online survey to gather U.S. patient and caregiver work and activity impairment, and out of pocket costs to include in the ICER review of the medications as contextual information. Analyses included 452 respondents, representing 287 patients and 165 caregivers. Results were presented at the 2020 National SCDAA Convention on October 14, 2020.

White Paper: Traditional Value Assessment Methods Failing Communities of Color and Exacerbating Health Inequities

Sick Cells worked with Partnership to Improve Patient Care (PIPC), National Minority Quality Forum (MNQF) and Axis Advocacy to compose a white paper looking at the current methods of cost-effectiveness analysis. This white paper examines ways that current methods fail to reflect true value to patients and will offer recommendations regarding methods to address this inequity.

Roundtable on Resources for Sickle Cell Disease Caregivers: Meeting Summary

Sick Cells partnered with the Caregiver Action Network (CAN) to strengthen their Caregiver Help Desk to serve the sickle cell disease (SCD) community. This report explains our findings and outputs from this work.

Proyecto de Alcance Hispano para Promover la Equidad (Proyecto HOPE): Reporte Final

El 18 de agosto del 2021, Sick Cells fue anfitrión de una discusión de mesa redonda con individuos de la comunidad Hispana quienes viven con la enfermedad de células falciformes (ECF) o quienes cuidan por familiares con ECF. El enfoque de la discusión era de identificar brechas educativas claves, crear herramientas educativas dirigidas para llenar estas brechas, e informar nuestras recomendaciones para los grupos interesados. Este reporte es un resumen de nuestros hallazgos.

Hispanic Outreach Promoting Equity (HOPE) Project Final Report

On August 18th, 2021, Sick Cells hosted a multi-stakeholder roundtable discussion with individuals from the Hispanic community who live with SCD or care for loved ones with SCD. The goal of the roundtable was to understand SCD within the Hispanic community, identify key educational gaps, and create targeted educational tools to fill those gaps. This report is a summary of our findings.

Advancing Care for Sickle Cell Disease: A Strategic Roadmap

Sick Cells and Avalere Health partnered to host a multi-stakeholder dialogue to discuss and identify barriers to accessing quality care. Through this dialogue, we have developed a strategic roadmap to advance the care and lives of people living with sickle cell.

Advancing Stakeholder Engagement with Medicaid

Since 2019, Sick Cells has worked to highlight the patient voice in coverage decision meetings by training advocates to share their story. To date, Sick Cells has trained over 25 individuals to advocate for sickle cell disease coverage in their state. This paper outlines the process Sick Cells follows to ensure the patient voice is reflected and prioritized in Medicaid coverage decisions across the country, and reviews current barriers and potential solutions to improve stakeholder engagement at these Drug Utilization Review Board (DURB) and Pharmacy & Therapeutics (P&T) committee meetings.

Coverage for SCD Summit Convening Proceedings Report

Sick Cells hosted a first-of-its-kind multi-stakeholder summit to discuss the changing landscape of healthcare coverage for sickle cell disease (SCD), called The Coverage for SCD Summit. This report contains proceedings and recommendations from this summit, which are intended to inform next steps to drive collaborative efforts and address gaps in access and coverage for SCD treatments.

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