Call to Action During the ICER Review

Sick Cells, the Sickle Cell Disease Association of America (SCDAA) and a multi-disciplinary task force are working with ICER to inform the evaluation of the clinical and economic impact of new treatments for SCD. We are asking patients and caregivers to complete the “My Life with Sickle Cell Disease” survey that will be live on Thursday, January 16th. The results of the survey will impact the ICER review in several ways:

  1. It will allow ICER to more accurately measure the impact SCD has on day-to-day activities.

  2. It will give caregivers a voice, which is often missing from clinical trial data.

  3. It will help ICER put a price tag on some of the expenses that result from SCD. Specifically, the survey will capture information about out-of-pocket costs and how much is spent out of cash or bank accounts to help manage SCD.

There are important areas of ICER’s report that may lack data, so completing the survey can help inform these critical pieces of the report. The survey closes on January 31st. Read more about ICER and its impact on the SCD community, here.

Take the Patient and Caregiver Survey here.