The US Centers for Disease Control and Prevention’s Division of Blood Disorders has put nearly all staff on administrative leave, sparking concerns from experts about the impact on a vital program collecting data on sickle cell disease. The 10-year-old Sickle Cell Disease Data Collection program provides critical insights into patient populations, treatment trends, and access to care.
The division oversees programs serving over one million Americans with inherited bleeding disorders, including sickle cell disease and thalassemia. Doctors and public health experts say the sudden changes without clear communication about plans for the future’s future of the division’s programs are alarming.
The American Society of Hematology has urged HHS Secretary Robert F. Kennedy Jr. to reinstate the Division of Blood Disorders. The program aims to raise awareness, direct healthcare resources, and expertise where they’re needed, particularly in underserved communities.
Sickle cell disease is a genetic disorder affecting Black and Hispanic Americans, causing chronic pain, unpredictable episodes, and tissue damage. Experts warn that the lack of specialists can lead to mistreatment and inadequate care, emphasizing the need for robust leadership and expertise.
The changes have raised concerns about halting research progress and jeopardizing care for patients with blood diseases. The Division of Blood Disorders at the CDC has been instrumental in growing the Sickle Cell Data Collection program, and experts fear that staffing changes will erode leadership and momentum.
Source: https://www.iowapublicradio.org/health/2025-04-21/sickle-cell-experts-worry-as-cdcs-division-of-blood-disorders-staff-put-on-leave