On April 1st, the Administration announced drastic changes and reductions to the federal health programs, one being the Division of Blood Disorders CDC, greatly affecting the bleeding disorders community. To discuss these concerns, we welcome a familiar face to many of you - Johanna Gray, federal policy advisor to NBDF and all-around wonderful human. 

 

Presenting Sponsor:

Takeda, visit bleedingdisorders.com to learn more.

 

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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?

 

Call the Capitol switchboard: (202) 224-3121 

*Anyone can call this number and get connected with their Senators and Representative.

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.

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For years, people with hemophilia A waited for a cure, while inhibitor patients were left behind—but now, after setbacks and failed launches of several gene therapies, investors think patients aren’t interested.  By taking this short survey, you can make your voice heard and show investors that our community still wants a durable gene therapy, but this time for both hemophilia A with or without inhibitors. Take the survey here

 

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