“There is a serious disease called spinal muscular atrophy that affects children and for some years now there has been a curative therapy that, if administered in time, changes the destiny of these people who become substantially healthy.
It is one of the most expensive drugs in the world, a single administration costs around 2 million euros, and the Campania Region has been guaranteeing it for several years, making our center the first center for quantity of administrations of this drug.
Yesterday this drug was administered to a 21-day-old baby girl, it's a kind of record". This was announced by Rodolfo Conenna, general manager of Aorn Santobono-Pausilipon of Naples. "This – explained Conenna – pwill 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 Santobono, but because it is the Region system that has produced an extraordinary response, starting from 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 the screening, the Ceinge that does the investigations and the Santobono that performs 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 about “good and significant news. For some time now - he added - We screen all children who are born for rare and hereditary diseases.
This gene therapy, which the Region finances at enormous costs in collaboration with Ceinge and Novartis, if administered in the very first days of life changes the destiny of the child who from a life of ordeal becomes a normal life. It is something that should make us proud, it is one of the many extraordinarily beautiful things that we do in Campania but that are not talked about. But it is not a problem, the important thing is to do things and save the lives of children”.
Article published on May 31, 2023 - 19:34 pm
