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April 27, 2012


John Stauber's article fairly well covers some of the ongoing issues surrounding prion disease diagnosis and surveillance. I expect nothing less as his book, Mad Cow USA, co-authored with Sheldon Rampton remains one of the few books world-wide to discuss the suffering and plight of Creutzfeldt-Jakob disease(CJD)victims. This book should be on the must read list for any young person entertaining a career in biotechnology or healthcare. A good follow-up to this book for your readership would be Pathological Protein by Philip Yam.

How and when American journalists cover these breaking stories provides a rare opportunity to clarify long held public misconceptions and re-shape public opinion. To date over 200 cases of variant CJD(vCJD) have been diagnosed world-wide. The vast majority of these cases have occurred in the UK in their teen and young adult population. The link between BSE and vCJD was finally disclosed by the UK government in 1996 after a decade long campaign of denial. To date 5 cases of vCJD transmission are attributed to the transfusion of blood or blood products.

It is my understanding that the U.S. has diagnosed only 3 cases of vCJD to date. All cases were diagnosed in residents from another country. The most recent cases of vCJD diagnosed on this continent were in Canada in October 2010 and if I recall correctly, Brazil.

That said, perhaps your blog contains an important error in type or understanding that you may want to consider clarifying. For those that have waged an ongoing, uphill battle for prion disease recognition, support, policy change and research, such fundamental errors remain the biggest obstacle.

Here are some important take home points:
Currently the U.S.tests less than 1% of the cattle population for BSE. Scrapie has not been eradicated from this country. CWD has now been identified in 20 U.S. states, 2 Canadian provinces,and S. Korea. This while the USDA scrapped its National Animal Identification System (NAIS). This nation's latest BSE case was sent to Iowa for testing. Iowa remains one of 8 states where the reporting of human prion disease is not mandated. Illinois, California and Washington state only started mandated reporting of CJD in 2008 at the height of the nation's largest beef recall. Since then, Washington state, the location of our first BSE disclosure in 2003, now posts a higher proportion of sporadic CJD cases than the national average. Dementia diagnosis still requires neuropathological evaluation meaning cases of Alzheimers, Parkinson's with dementia, Lewy Body Dementia, CJD, Frontotemporal dementia, ALS with FTD,etc. all require evaluation of brain tissue via biopsy or autopsy for proper classification. Illinois "wisely" mandates reporting in only those cases that get neuropathological confirmation.(Very cost effective from Capone's hideaway). The U.S. has extremely low autopsy rates compared to the other developed nations. Therefore, misdiagnosis remains the theme of the day! Italy mandates autopsy in 100% of their suspect CJD cases. Italy did not think it had BSE but once it started testing, over 100 BSE cases have been identified. Italian researcher Gianluigi Zanusso found a link between atypical BSE (Texas and Alabama cows were atypical) and sporadic CJD. I could easily go on but that would defeat the final point.

The loopholes in the Feed Ban were just closed in April 2009... on paper that is. How a policy is enforced is far more important than the paper it is written on. The Farm has not left Pharmaceuticals. The tragic CJD lessons from the cadaveric human growth hormone programs and the scrapie lessons from the Louping ill vaccine event remain important and relevant chapters that have essentially been "disappeared". In a Global economy, the lessons that were not taught or discussed are proving a key emerging infectious disease challenge for the 21st century students.

In closing, UK journalist and activist Ms. Christine Lord lost her son Andrew Black to vCJD in 2007. Her story can be followed on the Justice for Andy website. She is currently in the process of writing a book about her journey to be published later this year. If any one journalist or any network is to speak correctly to and about variant CJD (vCJD) from this country, they need to source and interview the UK sufferers themselves.

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Great quotes

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