Sickle cell disease (SCD) — an inherited disorder that causes a person’s red blood cells to become deformed and get stuck in veins, blocking oxygen
flow throughout the body — can cause many complications, including severe pain, stroke, organ failure, and even death. There is no widely available
cure for SCD, and care is inconsistent in the United States and even worse in large parts of the world. 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 f or those living with SCD.
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