Congressional Requests


Creutzfeldt-Jakob Disease Foundation Advocacy Day

July 15, 2013


We ask for Congressional support in maintaining the National Prion Disease Pathology Surveillance Center’s (the NPDPSC) appropriation for FY 2014 at a level that does not decrease by more than four percent of the FY 2013 appropriation. This would allow the NPDPSC to survive and continue to develop more efficient detection methods while providing an acceptable level of prion surveillance.

We also request that the appropriation for the prion disease surveillance program for FY 2014 be separated from that of the chronic fatigue syndrome (CFS).


The NPDPSC is funded entirely by the Centers for Disease Control and Prevention (CDC) from funds allocated by Congress. The CDC traditionally keeps approximately half of the appropriation. Below are the FY10-13 Congressional appropriations allocated to CDC for the prion program.

FY10 Funding: ~$5.474M

FY11 Funding: ~$5.373M 

FY12 Funding: ~$4.969M

For FY 2013, the CDC was notified it will receive an appropriation of $4.710M.Although this is a reduction it will allow the Center to survive and continue to develop more efficient detection methods while providing an acceptable level of prion surveillance. This will continue to be possible only if it remains at around 5% or less. If the reductions are higher, rigorous national prion surveillance will be impossible.

Background: Why the NPDPSC is important

1. The National Prion Pathology Surveillance Center (NPDPSC) is the only organization in the US that monitors human prion diseases and is able to determine whether a patient acquired the disease through the consumption of prion contaminated beef (“mad cow” disease) or meat from elk and deer affected by chronic wasting disease (CWD). CWD is an endemic prion disease of elk or deer in the United States.

2. The NPDPSC also monitors cases in which a prion disease might have been acquired by infected blood transfusion, from the use of contaminated surgical instruments or from contaminated human growth hormone.

3. The NPDPSC also plays a decisive role in resolving suspected cases or clusters of cases of food acquired prion disease that are often magnified by the media stirring intense public alarm. To date, the NPDPSC has examined over 4,700 suspected incidents of prion diseases and has definitely confirmed presence and type of prion disease in nearly 2,800 cases.

4. The NPDPSC represents the last line of defense in safeguarding US public health against prion diseases because the United States ─ unlike other countries such as Canada, the United Kingdom and other European Countries and Japan ─ does not have a robust animal prion surveillance system.

5.  The NPDPSC offers assurances, to the countries that import (or are considering importing) meat from the United States, that the U.S is free of indigenous human cases of “mad cow” disease. Recently South Korean health officials resumed importation of US beef to their country after a visit to the NPDPSC provided assurances regarding rigorous human prion surveillance (see letter).

Major reduction of funding to the NPDPSC would eliminate an important safety net to US public health making the US the only industrialized country lacking prion surveillance which in turn would jeopardize the export of US beef.