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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

2024 Sick Cells FAQ on Gene Therapies

In light of the new FDA approvals for CASGEVY™ from Vertex Pharmaceuticals/CRISPR Therapeutics and Lyfgenia™ from bluebird bio, Sick Cells wants to provide up-to-date information for the SCD community.

SNL Response Letter, December 2023

This letter is a response to the Saturday Night Live (SNL) skit titled “Yankee Swap” that aired on December 16, 2023. 

Community Health Equity Research and Promotion (CHERP) Initiative Report

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.

Medicaid Issue Brief #2: Variation in the Use of Step Therapy Protocols Across Medicaid Plans for SCD

This issue brief analyzes the use of step therapy protocols for sickle cell disease therapies across state Medicaid programs, and explores limited protections established by state legislation.

Medicaid Issue Brief # 1: Examining Prior Authorization For Sickle Cell Disease Therapies In State Medicaid Programs

This issue brief explores current prior authorization policies for sickle cell disease therapies under state fee-for-service Medicaid programs to highlight variations across states and identify opportunities to build consistency and transparency in establishing policies for prior authorization.

Finding Equity in Value: Racial and Health Equity Implications of U.S. HTA Processes

This paper is co-created by IVI and Sick Cells in pursuit of a shared goal to advance racial and health equity in and through the practice of HTA in the U.S. In the United States, the healthcare system is vast and involves many actors. This paper focuses on how racism can influence health technology assessments (HTAs) and determination of “value” when assessing new treatments.

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.

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