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| prion protein |
Wednesday, February 2, 2011
Finally, an alternative to 14-3-3 protein in the diagnosis of CJD!
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All of this fanfare for a rare, transmissible disease process that is still not reportable in all 50 states.
A test that will revolutionize ante-mortem diagnosis and blood screening of prion disease. My question as the family member of an sCJD victim: Will those that test positive be given their results? (Or is this test, at this time, merely intended to suit the needs of the FDA, the American Association of Blood Banks and the American Association of Tissue Banks?)
That very important basic right to know is a current events dilemma in the UK that vCJD victims and their families are fighting for and have been battling ever since the trialing of screening tests began.
Potential for early diagnosis? Doctors don't like diagnosing this disease now. It is a common theme reported by CJD victims. It is all about the untold stories behind "missing obvious hyperintensities" on the MRI and witnessing testing of the CSF for syphilis and herpes while "14-3-3 not looked for"(the RT QUIC can be just as easily "not looked for"); hearing that the doctor or hospital refused to autopsy; the doctor refused to write CJD on the death certificate; the doctor never told us it was CJD, etc.
I hope to see all who are so excited about this screening test standing up swiftly and advocating for the individual(s) on whom it will be used to screen. Their right to an early and accurate diagnosis!! A right that should not be dependent upon medicine's ability or inability to provide effective treatment! We are 200 years into scrapie observation and research. Human prion screening tests are preceding treatment options by at least a decade or two depending on the effects of a global recession. Medical breakthroughs for this patient population have long been stalled by lack of open access to patient information on a rare disease.
If the patient was truly at the center of the care model, I wouldn't have to ask for such help and vCJD victims would be allowed to share their stories on our soil. These are the moral dilemmas created by medicine. This is the New Tuskegee. How will this test be utilized by American medicine?
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