Losing more than jobs: What the CDC cuts mean for our community
Responding to the effective elimination of the Division of Blood Disorders
On April 1, the U.S. Department of Health and Human Services (HHS) announced a restructuring that effectively eliminated the Division of Blood Disorders and Public Health Genomics at the Centers for Disease Control and Prevention (CDC). For many, this news went unnoticed. But for those of us in the bleeding disorders community, it felt like the ground shifted beneath our feet.
In a recent must-listen episode of the BloodStream Podcast, Johanna Gray, federal policy adviser to the National Bleeding Disorders Foundation (NBDF), articulated the collective anxiety many of us feel and the many unknowns we face. “What we do know is that virtually all of the people who worked for the Division of Blood Disorders have lost their jobs,” she said. “We don’t know what that means for the grant programs and the activities that those people have been supporting and/or funding for many years.”
BloodStream co-host Amy Board added, “We don’t know if the programs are going away. All we know is that the staff was eliminated. And if the staff’s eliminated, then who can administer the program? And it’s so chaotic. And who is going to be our champion?”
The Division of Blood Disorders and Public Health Genomics has been a cornerstone of our community since the 1980s. Its work in surveillance, research, and education has been instrumental in improving the lives of those with bleeding disorders. The division’s laboratory housed blood samples dating back to 1996, serving as a critical resource for ongoing research. Programs like Community Counts collected vital data on joint disease and inhibitor prevalence, informing treatment strategies and improving patient outcomes.
Gray emphasized the importance of surveillance programs in public health: “If we don’t understand what’s happening, how can we design interventions to try and solve problems? We only know that HIV is transmitted through blood because of the hemophilia community and what happened in the ’80s.”
The elimination of this division raises pressing questions: Who will now oversee the safety of our blood supply? Who will continue the essential research and data collection? And why was this decision made without broader public discourse?
The silence surrounding this decision is deafening. It’s not just about the loss of jobs or programs; it’s about the erosion of trust and the uncertainty it brings to a community that relies on these services for survival.
What can you do?
Call the Capitol switchboard at 202-224-3121 to get connected with your senators and representative. The BloodStream Podcast shares the following script you can use on the call:
“I am calling as a member of the bleeding disorders community and as a constituent to ask that you protect the federal hemophilia programs at the CDC. The recent HHS restructuring eliminated essentially all of the staff at the CDC’s Division of Blood Disorders, where the hemophilia programs are housed. These programs:
- Help to collect important data on bleeding disorders which in turn helps lead to new and more effective treatments.
- Provide funding for education and outreach to increase patient and provider understanding of hemophilia.
- Help to protect the safety of our nation’s blood supply.
I’m very worried about what this means for people with bleeding disorders and our country.
Please work to restore the staffing and activities of the CDC Division of Blood Disorders.
I am relying on you, as my Senator/Representative in Congress, to take action to ensure that the staff for this program are reinstated and to work to protect the funding for this critical program.”
As members of this community, we cannot remain silent. We must advocate for the restoration of the CDC’s Division of Blood Disorders and Public Health Genomics. Our lives depend on it.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
About the Author
Leave a comment
Fill in the required fields to post. Your email address will not be published.