Call to Action During the ICER Review


#TeamSickCells is elevating the voices of the SCD community during the ICER’s review of two sickle cell disease treatments: crizanlizumab (Novartis) and voxelotor (Global Blood Therapeutics). Join our Webinars to learn more about the ICER review of SCD treatments. Register to attend Sick Cells’ webinar this Friday (September 5) at 3:30 EST.


  • ICER (the Institute for Clinical and Economic Review) is a non-profit research organization.

  • ICER uses health economics to assess the cost effectiveness and value of new drugs

  • ICER’s assessments may be used by payers to make decisions that can affect the treatment options available to patients.

  • More information about ICER can be found on their website.

Please note: Contributing information or advice to ICER is in no way an endorsement of their work.


  • Thanks to years of advocacy, funding, and research, the landscape for SCD is rapidly changing. Innovation is bringing new options for SCD.

  • As new therapies emerge into the market place, price, access, and coverage become important. Often these decisions are made without the involvement of patients and families.

  • On Friday, August 9, 2019, ICER announced they will be evaluating crizanlizumab (Novartis) and voxelotor (Global Blood Therapeutics) for the treatment of sickle cell disease.

  • ICER will be calculating a price that they believe is fair for these new drugs, and insurance companies may use these values to decide if its worth paying for these new treatments.

  • If ICER’s assessment is going to influence what treatment options may be available, the patient perspective must be at the forefront of the discussion.


  • During the report development, the community will have the opportunity to:

    • Give initial input about SCD from the patient perspective

    • Make comments on the draft documents

    • Register to make oral comments at the public meeting

    • Attend the public meeting


Stage 1:

The “Scoping Document”

On August 30th, 2019, ICER released a draft version of their Scoping Document. This provides an overview of the population, interventions, comparators, outcomes, time frame, and setting of care that will be included in the assessment.

The draft scoping document is open for public comment for three weeks. The community must submit comments to ICER by Sept 20th, 2019.

Attend our webinars to learn about the Draft Scoping Document and how you can get involved! Register to attend Sick Cells’ webinar this Friday (September 5) at 3:30 EST.


Stage 2:

The “Draft Evidence Report”

In January 2020, ICER will release their Draft Evidence Report. This report will include the “cost effectiveness analyses” or “value assessments” of how much they think the new drugs should cost.

Th draft evidence report is open for public comment for four weeks beginning on Jan 22nd, 2020 and commencing on Feb 19th, 2020.


Stage 3:

The Meeting Preparation

The Evidence Report and Meeting Agenda will be released in March 2020 in preparation for the in-person meeting.

Patients and community members will be invited to speak at the public meeting. Those wishing to speak at the meeting must contact ICER via email during the public comment section and provide the name, title, and organization of the speaker.


Stage 4:

The Public Meeting

On March 26, 2020, ICER will present the Evidence Report to a non-governing advisory board.

During this meeting, patients and community members will also share their comments about ICER and the assessment.

Stay tuned in to learn more about this in-person meeting!


Stage 5:

The Final Report

The Final Evidence Report and Meeting Summary will be released in April 2020. Many insurers reference these reports when determining coverage for the new treatments.

Get Involved! - Learn more about #ICER’s review process of Novartis’ crizanlizumab and GBT’s voxelotor for treatment of #sicklecelldisease. Ensure your voice is heard during the ICER review! Join Sick Cells as a key stakeholder in the ICER review!

  1. Join our Webinars. Sick Cells will be hosting webinars to educate the SCD community about the ICER review. Register to attend Sick Cells’ webinar this Friday (September 5) at 3:30 EST.

  2. Email us at We’ll be sending email updates and newsletters throughout this process to let the community know how to get involved.

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