Doctors continue to insist that if they were currently giving Zolgensma to little Oliver, they would not follow lege artis (a procedure that corresponds to the highest level of scientific knowledge) and the treatment could have fatal consequences for him.
When deciding whether physicians can administer a particular drug to a patient, they must always be based on the patient's current medical condition and the latest medical knowledge. As this is a new drug, the number of patients is gradually increasing and other new findings and expert recommendations are emerging. In February, when FN Motol was the only specialized center in the Czech Republic to prepare this specific treatment program (to make Zolgensma available to Czech patients), the worldwide number of applications was about 350. Since then, the number of children treated outside clinical trials has doubled. Extensive experience with the application of Zolgensma has led, among other things, to new internationally recognized recommendations. The European expert group, which is MUDr. Jana Haberlova, Ph.D. from the Department of Pediatric Neurology, 2nd Faculty of Medicine, Charles University and Motol University Hospital, based on the knowledge gathered from around the world, reached a fundamental consensus, which will soon be publicly published and binding on us. It is recommended to consider the current health status of the patient very carefully for severe conditions.
"I am very sorry about how the whole situation turned out. At the beginning, my parents and I believed that treatment would be possible, and I and the entire Motol University team did our best. Oliver was included in a special program aimed at administering Zolgensma, and we began to work intensively to set the optimal conditions for its application. " says MUDr. Jana Haberlová Ph.D., chief physician of the Neuromuscular Center of the Department of Pediatric Neurology, 2nd Medical Faculty, Charles University and University Hospital Motol. Thanks to the care provided at the Pediatric Clinic of the 2nd Medical Faculty of Charles University and the Motol University Hospital, Oliver's health stabilized significantly. Despite some advances, according to our medical opinion, his clinical condition is not sufficient for Oliver to manage the possible complications that he is more likely to experience after receiving Zolgensma - as well as in two patients (Max, Adam) who already have Zolgensma in in recent weeks at FN Motol received. "I am a doctor and I must act in the best interests of the child. I understand that emotions are on Oliver's side. But I, as a doctor, can't just deal with emotions. I can't ignore his current state of health knowing that he would endanger his life. " emphasizes MUDr. Haberlová.
Today, the risks of administration and possible expected complications in connection with the administration of Zolgensma to little Oliver were again explained to the parents several times in the specialist outpatient clinic, in the presence of both the attending physician and the head of the clinic.
FN Motol also offered the parents, and it is up to them to decide whether they will want to continue with Oliver in the care of the Pediatric Clinic of FN Motol. Here, Oliver could continue symptomatic treatment, which should further improve his clinical condition.
Motol University Hospital is ready, as stated by MUDr. Jana Haberlová has repeatedly said that in the future he will reassess Oliver's current state of health and consider a possible administration of Zolgensma.
Press Release: Opinion - Administration of Zolgensma to Oliver
A hospital spokeswoman told the media.