Urgent – Community Update and Call to Action

On Tuesday, April 1, a major blow was dealt to our community.

As part of the Health and Human Services (HHS) Reduction in Force directive, there was a major workforce reduction.  Division of Blood Disorders and Public Health Genomics, and the Blood Disorders Surveillance and Epidemiology Branch of the Centers for Disease Control (CDC) were essentially eliminated leaving only two remaining staff, rendering the functionality of these offices inoperable. All staff have been placed on administrative leave effective immediately and all positions will be eliminated within 60 days, leaving the future of these offices uncertain.

The Division and Branch maintain surveillance of the US bleeding disorder population and ensure the safety of the US blood supply and bleeding disorder treatment products by identifying known and unknown blood-borne pathogens.

What does this mean?

• Reduced tracking of the natural history of individuals with bleeding disorders. The CDC Community Counts Data Collection is a national large-scale data surveillance project and repository for bleeding disorders which has taught us about joint disease in men and women with bleeding disorders and helped us to understand comorbidities like high blood pressure, blood clots and heart disease.
• Reduced access to inhibitor testing. The CDC provides clinical lab services supporting HTCs, specifically providing inhibitor testing and other services a lack thereof will disproportionately impact rural and under-resourced areas.
• Reduced blood supply surveillance. The CDC ensures safety of the bleeding disorders community by monitoring emerging blood-borne pathogens in the national blood supply such as HIV, Hepatitis, and more recently, the Zika and Ebola viruses.

What Can We Do?

HFA is hosting an Urgent Advocacy Network Organizing Call via Zoom on Monday, April 7th, at 6:00 PM EST to offer the community an update on this and other rapid policy, funding and administrative changes that pose a serious threat to our community. Since the bad blood era, this is the most significant crisis we have faced; during that time, blood-borne infections became a devastating complication of hemophilia treatment—exacerbated by government inaction. Most importantly, this moment isn’t about politics for us – it’s about protecting the critical safeguards put in place to prevent another tragedy in our community.  We cannot allow history to repeat itself.

Save the meeting link to your calendar