The State of Sickle Cell Disease

To highlight the urgent need for change, in 2016 and 2018 SCD stakeholder groups issued report cards on the state of the disease based on surveys of individuals with SCD, family members, caregivers, health care providers, researchers, advocates, industry representatives, and global health leaders. In 2020, SCD stakeholder groups conducted a follow-up survey to measure progress. While this 2020 report card suggests we are making progress in most areas, the scores also indicate that we have much to do to improve the state of care for those living with SCD.