Novartis launches raffle for world's most expensive child-saving drug

Novartis has brought to market Zolgensma, a gene therapy to treat spinal muscular atrophy, which affects 1 in 10,000 children. One dose is enough to heal permanently. A dose that costs $2.1 million dollars and which makes Zolgensma the most expensive therapy on the pharmaceutical market. Children who will not have the resources to be treated will have to rely on fate: Novartis has in fact created a lottery to give away 100 doses a year to the "lucky" ones drawn.

SMA is a degenerative disease that affects children aged between 6 and 18 months. In its most serious phase, the very young patient will not go beyond the adolescence phase. Novartis has announced a plan to expand the number of patients who will be able to take advantage of the treatments, through the singular mode of the lottery, which will allow 100 extracts to cure yourself and survive the disease. The first draws took place last Monday.

However, Novartis' initiative has met with resistance from patient groups and patient family associations.

SMA Eurpe welcomed the news of the lottery with "mixed feelings": although "it is appreciated that the program will offer access to the promising treatment option to a number of children", the "health lottery" is "an inappropriate way to address the medical need of this serious illness,” reads a statement

The Novartis storm is compounded by the fact that the pharmaceutical company launched the plan without consulting with the associations of doctors and parents of SMA sufferers.

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