(ANSA) - TARANTO, AUG 21 - Federico Musciacchio, the 3-year-old boy from Taranto suffering from SMA (spinal muscular atrophy) type 1, the most serious, did not make it. solidarity for the purchase of Zolgensma, one of the most expensive life-saving drugs in the world, worth over 2 million euros.
His father Saverio, brother of the Congrega dell'Addolorata, last April in the procession of Holy Thursday had been among the bearers of the sdanghe (wooden beams) of the statue of the Addolorata teaching of devotion and thanks for the support received for the care of his son.
Only in March of last year the Italian Medicines Agency had allowed the use of the Zolgensmac gene therapy with the national health system for all children affected by Sma1 who fall within the weight of 21 kilos.
In this way, the limit previously existing in Italy linked to the age of 6 months was exceeded and which forced families to raise funds to reach the amount necessary to buy and administer the very expensive drug in another country.
Even little Federico had thus been able to begin therapy.
On a similar story, which concerned the possibility of administering the drug to Paolo, a child of just over two years of the province of Bari affected by SMA1, the rift between the governor Michele Emiliano and the professor Pierluigi Lopalco took place, so much so that this
the latter decided to resign as Apulian health councilor because he believed that, on the basis of the pallets set by Aifa in Italy, the child could not be subjected to gene therapy from which he would not have benefited.
(HANDLE).