To direct the Secretary of Health and Human Services to carry out a program under which the Secretary will collect data with respect to sickle cell disease in the United States, and for other purposes.

Plain-English Summary

This bill would require the Secretary of Health and Human Services (HHS) to create and run a national data collection program focused on sickle cell disease in the United States. Sickle cell disease is an inherited blood disorder that affects the shape of red blood cells, causing serious health complications. The goal of the program would be to gather consistent, reliable information about how many people have the disease, how it affects them, and how it is being treated across the country.

Currently, comprehensive national data on sickle cell disease is limited, which can make it difficult for researchers, doctors, and policymakers to fully understand the scope of the problem or track whether patients are getting effective care. By directing HHS to systematically collect this information, the bill aims to fill those gaps and create a clearer picture of how sickle cell disease impacts Americans nationwide.

The people most directly affected by this bill would be the roughly 100,000 Americans — predominantly Black Americans — who live with sickle cell disease, as well as their families and healthcare providers. Better data could lead to improved research funding, more targeted treatments, and stronger public health policies. The bill would primarily affect federal health agencies responsible for managing and reporting the collected data, and could also involve hospitals, clinics, and state health departments that contribute information to the program.

The bill has been introduced in the House of Representatives and referred to the House Committee on Energy and Commerce, where it will be reviewed before any further action is taken.