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

Indirect Cost Burden of Sickle Cell Disease on Patients and Care-givers in the United States

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.

2023 Medicaid Access and Landscape Review for Sickle Cell Disease Final Report

Sick Cells conducted an annual environmental scan of state and managed care organizations under Medicaid to present coverage and access criteria for SCD disease-modifying therapies and opioid management. This report highlights the challenges and opportunities for community advocacy to support change in Medicaid policies.

Issue Brief #3: Policy Overview of Opioid Management for Sickle Cell Disease Across State Medicaid Plans

Sick Cells has created 3 Issue Briefs as part of our 2023 Medicaid Landscape and Access Review Project. This Issue Brief reviews the current landscape of opioid policies for sickle cell disease under fee-for-service Medicaid programs to highlight potential barriers across states.

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.

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