We need your help again! Earlier this week, the Administration announced drastic changes and reductions to the federal health programs that support the bleeding disorders community. We talked about the importance of these programs during Washington Days. We are asking you to please call or email the offices you visited in March and ask your lawmakers to reverse the cuts and protect funding for those programs.
What is the issue?
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.
The CDC cuts are of particular concern to our community. The Division of Blood Disorders’ work traces back to the 1980s’ tainted blood crisis, when CDC investigators were the first to discern and warn of HIV’s 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 – 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 “Community Counts” 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.
What can you do?
Please call or email your lawmakers’ offices!
For email, contact the staffer you met with at Washington Days (check your sent mail for the thank you notes). If you no longer have contact information for your lawmakers’ offices, you can call the Capitol switchboard at 202.224.3121 and ask them to connect you.
Say or email:
I am [calling/emailing] 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 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.
