Madeleine is ready to receive the most expensive medicine in the world that will change her life completely. The baby who suffers from Spinal Muscular Atrophy (SMA) type 1 will receive the long-awaited Zolgensma vaccine thanks to a large solidarity collection and the influence of Santi Maratea who set out to move heaven and earth to get IOMA to authorize the supply of this drug to the little girl.
Zolgensma is a vaccine from the Novartis laboratory that has a value of more than two million dollars, is applied only once in the patient and ensures a better quality of life. It directly replaces the missing or defective gene and prevents this genetic neuromuscular disease from continuing to affect the nerves that control muscle strength and movement. The option offered in Argentina for SMA patients is Spinraza. A treatment that is much cheaper, costs 800 thousand dollars, is applied 4 times a year and for life. Spinraza slows down the disease but does not slow it down because it does not attack the gene that the patient has defective. Therefore, families who have children with SMA and who want what they consider to be the best for them ask that Zolgensma be covered by the State, social works or prepaid. It is a struggle of parents against bureaucracy while the disease, which does not understand times, advances on their children. Emmita and Madeleine made it and it’s a small big win but there are still many patients waiting to have the same opportunity.
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