Michigan Advocacy Update
On April 1, the US Department of Health and Human Services (HHS) sent termination notices to an estimated 10,000 employees, carrying out its previously announced plan to reduce staff and reorganize its divisions. One of the many HHS offices that was impacted was the Division of Blood Disorders and Public Health Genomics (Division) at the Centers for Disease Control and Prevention (CDC). According to reports, all but two Division staff were placed on administrative leave, with termination expected at the end of 60 days. These experts have played a vital role in research, public health programs, and data collection for our community.
We are deeply concerned about the impact this will have on the bleeding disorders community. The Division of Blood Disordersā work traces back to the 1980sā tainted blood crisis, when CDC investigators were the first to discern and warn of HIVās transmissibility through blood and blood products. To this day, the Division serves the bleeding disorders community and the nation at large through its public health surveillance activities ā including maintaining a laboratory with blood samples dating back to 1996. The Division also funds the collection of key data on bleeding disorders through its āCommunity Countsā program, and supports educational outreach to increase patient and provider understanding of hemophilia and its complications. Elimination of the Division, its clinical repository, and its institutional knowledge would be a huge loss for the bleeding disorders community. These cuts will impact Hemophilia Treatment Centers and key research initiatives. The Great Lakes Regional Hemophilia Network and HFM are actively working to respond to federal program changes impacting our community and HTCs.
We need your help! Join us by reaching out to your federal elected officials to protect these essential programs. You can also contact your state elected officials to ask them to encourage their federal counterparts to safeguard these critical programs and help them understand their importance. This is not a political issue but a matter of public health and safety.
We are requesting that Congress:
- Immediately restore the Division of Blood Disorders and Public Health Genomics and the Blood Disorders Surveillance and Epidemiology Branch.
- Establish an emergency transition plan to ensure continuity of critical services until full restoration is achieved.
- Meet with representatives from the bleeding disorders community to understand the real-world impact of these cuts.
To find your federal and state Senator or Representative’s contact information, click here.
You can use the script below to get started.
Dear [Senator or Representative],
I am [calling/emailing] as a member of the bleeding disorders community and as your 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 CDCās 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 nationās blood supply.
I am relying on you, as my elected official, to take action to ensure that the staff for this program are reinstated and to protect the funding for this critical program.
Thank you,
[Your Name]
While there are still many uncertainties, please email advocacy@hfmich.org with any questions you may have. HFM will provide alerts to our community if there are other changes that could impact care and services.
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Thank you for helping our community be heard.
