Recent reports in the news about illness resembling variant Creuzfeldt-Jakob Disease (the human form of Mad Cow Disease) have raised the question in my mind about whether certain results from tests performed in 2004 are being withheld from public release. I am concerned over the possibility that the first human rest in the U.S. from vCJD acquired in the U.S. may have already occurred. (The rest of Charlene Singh was actually the first confirmed rest from vCJD in the U.S., but she is believed to have acquired her infection in England.)
If true, this is an event of enormous historical importance. Like the first rest from AIDS, it may be the precursor of a major epidemic of preventable illness. It would not serve the public interest to withhold this information or delay its release, if this event has occurred. I have no information which indicates that this event has occurred. I have no information at all. That is why I am seeking the information which would resolve this question.
On December 28, 2004, I sent a letter to the CDC FOI office, following the instructions given on their website here:
I requested "any records in the possession of the CDC regarding the results of any tests performed by or for the National Prion Disease Pathology Surveillance Center between October 15, 2004 and December 15, 2004 on human central nervous system tissue".
According to CDC's FOI page, I should have received a postcard from them acknowledging receipt of my request when it was logged into their system. I also should have received a response within 20 working days.
I did not receive a postcard or any other communication. On February 4, 2005, I called their phone number, and their spokesman confirmed that my request had been received and logged as case number 05-0278. I was told that the records I had requested had been received by the CDC FOI office from the laboratory involved, and the records were in the process of being reviewed for release. In a subsequent phone call on March 14, 2005, I learned that the requested records had been received on January 20, 2005, and that the records are still in the process of being reviewed.
This is an extraordinary long delay in the release of these records. This delay does not lessen my concern.
