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Old 07-24-2017, 02:12 PM   #6
sir shovelhands
Ten Point
 
Join Date: Mar 2014
Location: Houston
Hunt In: Texas
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Quote:
Originally Posted by Livin'2hunt View Post
In the U.K., a one year old baby named Charlie Gard is now going to die because the single-payer system would not permit the child travel to the United States for the treatment and cure awaiting his arrival. The parents had to sue Parliament in order to permit the treatment because he was locked into mandated single-payer. If Charlie would have received treatment early after diagnosis, his life could have been saved but the protracted litigation will prohibit effective treatment. This IS a death panel system. Forgive me if I don't see the upside to it.
While I agree that it's ridiculous that the courts should be able to tell parents they can't get experimental treatments to help their child, I should point out that there is no "cure" for encephalomyopathic MDS as it's a genetic disorder.

The experimental treatment (nucleotide bypass therapy) provides the building blocks of the genetic material that the body cannot produce due to the disorder. It does not correct the inability of the body to produce said material.

Unfortunately it's only been tested on children with the TK2 gene mutation (if you google Arturo Estopinan Jr, you'll see what a child kept alive with the treatment has to endure), whereas Charlie has a RRM2B gene mutation (which also affects his brain). So there's no certainty the treatment would have a similar effect on Charlie (conversely, maybe it might have worked better; can't draw a conclusion with no data).

Regardless, the treatment doesn't cause any problems, so it couldn't have hurt to try. I'm all for experimental medicine in such scenarios.
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