David's Reviews > The Forever Fix: Gene Therapy and the Boy Who Saved It

The Forever Fix by Ricki Lewis
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's review
Aug 26, 12

fairly readable account of the false starts and subsequent improvements with gene therapy, centering on story of a young, nearly blind, boy whose vision was improved dramatically, and to a lesser extent on other anecdotes.

The nuances of the preclinical animal research were hard for me to follow, and perhaps the sense that this may be true of many readers was the motivation for including so many human interest stories. Not really a seamless fit, though, in that the one has almost nothing to do with the other. When NBC Olympics coverage delves into athletes' background stories (here's Mo Farah drinking tea at the house in Oregon where he moved to train under Alberto Salazar, and here's his wife talking about the family sacrifices involved in relocation, and.......), it may or may not be to your taste as a viewer, but at least it relates directly to their accomplishments. The life story of the kid with a rare genetic disease could be completely the opposite of what it is, and it wouldn't change the scientific developments involved in (someone else's) fixing the problem in a chicken or pig one bit.

Two interesting side issues she covers well: (a) the phenomenal efforts some parents have undertaken to raise funds for gene therapy trials relevant to their kids' disorders, in order to speed up the otherwise sluggish process of getting NIH grants for early-phase studies etc. etc.; (b) difficulty of interesting big Pharma in funding the research, partly because some of the disorders are rare but also because if it works, it works ("forever fix"). Much more profit to be made in something like cholesterol-lowering drugs, targeting a common condition with a treatment that you have to keep taking indefinitely.


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