What Else Should I Know About ICER and Its Sickle Cell Disease Value Assessment?


ICER’s assessments are used by private payers, including private Medicare Advantage plans, some Medicaid programs, and the Veterans Administration (VA) to inform formulary development and  utilization management, such as step therapy. ICER’s assessments are precluded by law from being used directly by Medicare. An assessment of low to intermediate value by ICER could lead Medicaid programs, the VA, private insurers, and pharmacy benefit managers to restrict access to the new treatment.

Sickle cell disease advocates shared their concerns with ICER


The American Society for Hematology stated, “ASH, however, has tried to stress why the SCD community is unique and outline our concerns about the potential adverse impact ICER’s assessment could have on recent and future progress of new therapies” – the SCD community is on the cusp of benefiting from new, potentially life-changing, treatments and cannot afford a setback. Sick Cells stated, “We urge ICER to suspend the review at this time, as this review is premature and inappropriate. The lack of published quality of life and real-world data for these new treatments severely limits ICER’s ability to measure the benefit of them.” Several advocates commented as individuals with their personal stories living with sickle cell disease that ICER’s assessment was unable to capture.

Webinar – ICER Draft Evidence Report on Sickle Cell Disease: An Overview, Next Steps and Expectations


We welcomed interested stakeholders, patients, advocates, caregivers and families to join a webinar about the progress of the ICER assessment to-date. ​ICER’s draft evidence report on sickle cell disease was released on January 23, and the webinar will review the contents of the report and provide guidance and information for advocates who may want to provide comments on the report.

Sick Cells Comment on ICER’s Insufficient Stakeholder List


Sick Cells is pleased to submit comments about the Institute for Clinical and Economic Review (ICER) Sickle Cell Disease: Stakeholder List. The sickle cell disease (SCD) community has a vast reach of community-based organizations. Each region of the United States faces its own, unique challenges. With this in mind, each CBO works within its local governments and healthcare systems to increase access to and quality of care for SCD patients and families. Partner organizations of the SCDAA should be evaluated as stand-alone CBOs.

Sick Cells Letter to ICER on Draft Scoping Document


Sick Cells is pleased to have the opportunity to submit comments in response to the Institute for Clinical and Economic Review’s (ICER’s) Draft Scoping Document on treatments for sickle cell disease (SCD). Sick Cells is a patient advocacy organization that aims to elevate the voices of the SCD community. We would like to offer the following suggestions to ICER for consideration.

Sickle Cell Stakeholder Letter


As key stakeholders in the sickle cell disease (SCD) community, we recommend you postpose the SCD review and reschedule the review for a later date. We agree with and understand the Institute for Clinical and Economic Review’s (ICER) overarching mission to ensure SCD patients have access to effective and affordable treatments. After review of the Draft Scoping Document, we have concerns about ICER’s ability to accurately evaluate Crizanlizumab and Voxelotor at this time.