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20 Dec 2019

Novartis/Avexis invents gene therapy by drawing lots. AFM-Telethon is outraged!

Illustration for article: Novartis/Avexis invents gene therapy by drawing lots. AFM-Telethon is outraged!
Novartis has announced a free access program for Zolgensma, the gene therapy approved in the US for spinal muscular atrophy and currently undergoing approval in Europe and Japan. In very specifics ways...

The Swiss company and its subsidiary Avexis plan to make 100 doses of gene therapy available free of charge to children under two years of age, in 2020, in countries that do not currently have marketing authorization.

This will be done by drawing lots among babies under two years of age eligible for gene therapy whose medical files would have been sent to the company by their doctors. This weekly draw will involve several thousand children worldwide. But "good news" (!!!!): it will be possible for babies to compete several times in the draw on which their lives depend ! 

AFM-Telethon is outraged that such a program based on a draw has been imagined and, a fortiori, proposed to parents whose child with severe spinal muscular atrophy is condemned to die in the short term.

How is it possible to imagine that a child's life can be the jackpot in a lottery?