Stem: Sofia died, victim before new law - ANSA.it

Into ROME – “On 2 June a dead girl suffering from Spinal Muscular Atrophy (SMA1) on 8 April that he had won the appeal to be able to submit to treatment by the method Stamina.” This was stated by the president of Stamina, David Vannoni, reporting that the little girl was “fourth on the waiting list” to the Civil Hospital of Brescia. For Vannoni it is “the first death caused by the Law” On stem approved by Parliament in late May. “With the okay of the judge families have a vested right.”

Into “With the first text of the Senate – said Vannoni – the child could be cured immediately. So you are stretched times and hopefully it will not be the first of a long series.” It is, Vannoni, “people who do not have time to wait. This creates a short circuit that affects children and adults and is no longer a dispute between Vannoni and scientists.” The President of Stamina states: “do not want to exploit it, but there are hundreds of families who are winning appeals and with a court order have a vested right that can not be violated by the state.’m Urgent cases for compassionate therapies. Dall ‘ April 8 to June 2 was, however, already been too long. ” The small, reports Vannoni has shut down to a respiratory crisis and the family “is willing to denounce the Civil Hospital of Brescia and the Ministry of Health is looming because the murder.”

STEM CELLS: THE GIRL WITH SMA1 Civitavecchia, HAD 6 MONTHS – E ‘dead to six and a half months for a respiratory crisis, the small Pirisi Sofia, suffering from Sma 1 and waiting to start therapy with the method Stamina. He had the same name of the little Sophia, the Florentine girl of three and a half years suffering from metachromatic leukodystrophy for which it was launched a few months ago, the collection of signatures to enable it to continue their treatment by the method Stamina.

STEM: MINISTRY BODIES AT WORK IMMEDIATELY – “Since the day after the approval of Law 57/2013 by the Senate, were held technical meetings sponsored by the Ministry of Health between the Institute Institute of Health, the Italian Drug Agency and the National Transplant Center, to define the organizational and technical aspects related to starting the trial of the method Stamina, scheduled for July 1 next. ” The Ministry of Health’s response to the criticism of David Vannoni on the alleged detention of procedures for the testing of therapies with stem cells. “In the last of the four meetings, one this morning at the Ministry of Health, have been examined – says the Ministry – the procedures for testing the method Stamina that will be the subject of a decision of the Ministry. E ‘expected involvement in appropriate meetings representatives of Stamina in order to share the method of preparation used in the trial. “