Today, U.S. Department of Health and Human Services (HHS) Secretary Xavier Becerra released the following statement to celebrate September as National Sickle Cell Awareness Month:

“While medical advancements bring us closer to cures, too many individuals with Sickle Cell Disease and their loved ones still face stigma and challenges to obtaining the care they need. With increased awareness and investment, we can improve the quality of life for people affected by this disease and find new, potentially curative treatments,” said HHS Secretary Xavier Becerra.

Sickle Cell Disease (SCD) is the most common inherited blood disorder in the U.S., affecting more than 100,000 Americans and disproportionately affecting Black and Hispanic Americans. This September HHS joined the community of individuals impacted by this disease, drawing attention to the unique issues and barriers people living with sickle cell disease face.

From data collection and research to the approval of new therapies, HHS is answering the call, and supporting critical programs to helping people with SCD live healthier lives.

This month, in observance of National Sickle Cell Awareness Month:

• The Centers for Disease Control and Prevention (CDC) expanded the Sickle Cell Data Collection program from 11 to 16 states, and will host a Sickle Cell Data Collection Summit from September 26-29 to describe how CDC’s data will improve the lives of people with Sickle Cell Disease.
• The Centers for Medicare & Medicaid Services (CMS) will release a Sickle Cell Disease Action Plan, which outlines activities across the agency to advance care for SCD, including new efforts to improve the quality of care for individuals with SCD and to help patients afford potentially life-saving treatments.
• The Food and Drug Administration (FDA) continues to support the Sickle Cell Disease research and development pipeline, including by participating in a Patient-Led Listening Session on Sickle Cell Disease to hear from patients and caregivers.

• The National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute (NHLBI) released new resources to help patients manage their symptoms and learn about clinical trials, as well as stories of individuals living with Sickle Cell Disease.
• The Health Resources and Services Administration (HRSA) continues to support programs that span across the Sickle Cell Disease system of care, including newborn screening, diagnosis, access to treatments, early intervention, and successful transition into adult care. HRSA’s Sickle Cell Disease programs have a national reach, with $15.2 million invested in fiscal year 2023 in 91 sites and grantees throughout the country.