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«There is a serious disease, which is called spinal muscular atrophy, which affects children and which for some years has had a resolutive therapy which, if administered in time, changes the fate of these people who become essentially healthy. It is one of the most expensive drugs in the world, the single administration costs approx 2 million euros, and which the Campania Region has already guaranteed for some years, making our center the first center for the quantity of administrations of this drug. Yesterday this drug was given to a 21-day-old baby girl, it’s kind of a record.” She announced it Rodolfo Conenna, director general of Aorn Santobono-Pausilipon of Naples.
«This – explained Conenna – will probably allow the little girl to live not a short life of handicap, but a life of a normal person. It is a beautiful thing beyond the value for the Santobono, but because it is the Region system that has produced an extraordinary response, starting with the Department that has prepared the project to screen all newborn children to find out if they are carriers of this disease, which allows the disease to be recognized very early, up to the Birth Centers involved in screening, the Ceinge which carries out the investigations and the Santobono which carries out the therapy. Giving the life-saving drug to a 21-day-old baby is a great success, the result of an increasingly strong integration system between the various components of the Campania health system”.
The president of the Campania Region Vincenzo De Luca spoke of «beautiful and significant news. For some time – he added – we have been carrying out checks on all children who are born with regard to rare and hereditary diseases. This gene therapy, which the Region finances with enormous costs in collaboration with Ceinge e Novartis, if administered in the very first days of life, it changes the fate of the little girl who from a life of ordeal becomes a normal life. It’s something we should be proud of, it’s one of the many extraordinarily beautiful things we do in Campania but which we don’t talk about. But that’s not a problem, the important thing is to get things right and save the lives of the children».
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