Restore Cut Services Now!

This week more than 275 community advocates gathered for an emergency Zoom call organized by the Hemophilia Federation of America (HFA) to confront a growing crisis: the abrupt dismantling of the CDC’s Division of Blood Disorders and Public Health Genomics and all branches – Blood Disorders Surveillance and Epidemiology, Hemostasis Laboratory, and Public Health Genomics. These sweeping staff reductions—triggered by an April 1 Reduction in Force (RIF)—have effectively halted decades of progress in bleeding disorders care, public health surveillance, and blood safety monitoring that has protected Americans since the “bad blood era” of the 1980s.

What’s At Stake

Threat to Public Health Surveillance

The Division was responsible for vital national surveillance of bleeding disorders, including programs like Community Counts, which provided crucial data on joint disease, comorbidities, and treatment outcomes. Without this surveillance, we lose the ability to track disease progression and evaluate treatment effectiveness, which impacts clinical care and research.

Loss of Laboratory Services

The CDC offered specialized inhibitor testing, essential for patients on factor replacement therapy, particularly in rural and underserved communities. The elimination of these services increases health disparities and raises treatment costs, as inhibitor development can make therapies ineffective.

Compromised Blood Supply Safety

The CDC’s role in monitoring blood-borne pathogens, including HIV, Hepatitis, Zika, and Ebola, in the national blood supply is severely weakened. This surveillance system was established after the “bad blood era,” when individuals with bleeding disorders were infected through contaminated blood products. Without adequate monitoring, we risk repeating past mistakes.

No Transition Plan

The RIF occurred without a clear plan for continuing essential public health functions. With only two remaining staff members, operational continuity is not possible, and the loss of decades of institutional knowledge is imminent.

Request to Congress

1. Immediately restore funding and staffing to the Division of Blood Disorders and Public Health Genomics and the Blood Disorders Surveillance and Epidemiology Branch.
2. Launch an investigation into the decision-making process behind these cuts and their impact on public health.
3. Develop an emergency transition plan to maintain continuity of critical services.
4. Meet with bleeding disorders community representatives to understand the real-world consequences of these cuts.

This is not a political issue but a matter of public health and safety. The bleeding disorders community has already endured the devastating consequences of government inaction during the “bad blood era,” and we cannot allow history to repeat itself. Lives depend on the restoration of these critical CDC functions.

How You Can Take Action

• Schedule an in-district office visit or plan for a drop-in visit with your House Member of Congress and your US Senators now. Take advantage of the April 14-25 Congressional recess.
• Download and review “How to Connect with Your Lawmaker“, which serves as a helpful tool for making in-District visits.
• Stay connected by joining your local organization, following HFA on social media @hemophiliafed, and joining the Advocacy Network for further guidance on coordinated advocacy efforts.