Now that I have mailed my proposal off to my stepmother, I have started doing some of the background research for my ideas. In particular, trying to identify which states currently require reporting to the CDC. I feel this list must exist somewhere - I can't be the first person interested in finding the information - but I certainly can't find it online. I am taking the approach of searching by each state, but I am not finding the information online there either. It appears it may take many phone calls (possibly just one to the CDC), but I am not quite at the point where I'm ready to be calling people and telling them about the organization. I feel a little stuck, but I'm still plowing away, hoping I will stumble across a great resource to give me the information.
But, without further ado, I give you Part II of my ideas:
1. Advocate funding for better prion disease tests, particularly a blood test.
The difficulty in diagnosing prion diseases is a major roadblock to ensuring all cases are identified. While research is already underway to develop more efficient tests, better funding for organizations conducting this research is needed to develop the test as quickly as possible.
To further this goal, the APDA will contact professors of neurology Elias and Laura Manuelidis at Yale University to gather more information on their 1980’s study of 46 randomly selected patients who reportedly died from Alzheimer’s. The autopsies conducted revealed six patients had actually died of CJD.[i] The APDA will identify researchers willing to do a follow-up study. If indeed many CJD patients are being misdiagnosed with Alzheimer’s, this has enormous implications for the true number of CJD cases. Brain biopsy and autopsy are currently the only ways to definitively diagnose CJD. These methods may be traumatic to patients and families, thereby reducing the number of people being tested for the disease. A simpler, less invasive test will be an important step in obtaining an accurate number of CJD cases.
Identifying all cases of prion diseases in the United States is absolutely necessary, as it may show the disease is not as rare as currently believed.
[i] D.T. Max, The Family that Couldn’t Sleep: A Medical Mystery (New York: Random House Trade Paperbacks, 2007), 216.
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A list of states which currently mandate reporting of CJD can be found in the information pamphlets/package provided free of charge by CJD Aware. Their director, Christy Brom, has made following this issue one of her primary goals. Currently 8 states do not mandate any type of CJD reporting.
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