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Newborn screening for NMD
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Registered: 01-08-2013
Posts: 61
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As this is already being discussed legislatively for other NMD's, maybe its time to start the discussion.
http://www.bellaonline.com/articles/art180851.asp/zzz
Registered: 08-02-2009
Posts: 204
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Okay, I'll play "devil's advocate" for a minute...in the article she writes about testing for 31 core and 26 secondary disorders, total 57 tests.

Testing for KD/SBMA costs around $300 to $500 per person; $400 times 57 disorders is $22,800 per person. Who is paying for this? The taxpayer or the insurance policy holder?

If you add in the fact that the symptoms of SBMA don't show up until age 35 or so, and the disease is rare, I don't think it's cost-effective to do the test on everyone at age 0. Would you have done anything different if you knew you had SBMA at age 5 or age 10?

I might agree to do the KD test on male grandchildren of men who had KD....but that's much different (in cost) than doing the test on everyone.
Registered: 01-08-2013
Posts: 61
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I'm not advocating for or against, the link was sent to me as a regular monthly article. The costs of mass screening drop dramatically with volume as many diseases are a slight shift in focus away from another. The cost is also compared to the productivity losses and ongoing medical testing costs later in life of mis (or missed) diagnoses.
The surprise in the article for me is how much is already being done and the lack of input or discussion from those affected.
Should a pharmaceutical company, insurer, or health care provider have input in deciding which diseases ought to be screened in newborns without any input from parents. Where is (or was) the discussion?
Early screening for KD and other NMD's may reveal large numbers of asymptomatic or marginally affected carriers (both male and female) which could lead to other avenues of study; it could lead to larger numbers for studies, and the potential for a pre-symptomatic cure; or it could lead to large numbers of unemployable or uninsurable individuals.
The scope of what is already being considered is impressive (see http://www.ncbi.nlm.nih.gov/pubmed/16735255 )
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