(Adnkronos) - Aifa ha ammesso alla rimborsabilità fenfluramina per il trattamento della sindrome di Lennox - Gastaut, Lennox - Gastaut, una grave encefalopatia dello sviluppo ed epilettica che colpisce circa un milione di persone in tutto il mondo. Dopo il via libera ottenuto nel 2022 per la sindrome di Dravet, quello concesso ora da Aifa offre ai neuropsichiatri infantili nel nostro Paese una nuova opzione terapeutica in grado di migliorare le prospettive di salute dei pazienti. Fenfluramina si è infatti dimostrata efficace in almeno il 50% dei pazienti sia sul piano di controllo delle crisi, sia sul piano della qualità di vita. Uno degli aspetti più complessi nella gestione della sindrome di Lennox Gastaut è il passaggio del paziente dall’età pediatrica all’età adulta, un momento di transizione complesso che comporta il cambio dell’equipe medica che segue il paziente.
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00:00Until recently, patients with Lennox-Gastaut syndrome, a serious encephalopathy of the
00:09development and epilepsy that affects about a million people around the world, did not
00:13have drugs able to offer significant and long-term improvements.
00:17Today, thanks to the free way of AIFA, the reimbursability of fenfluramine, children's
00:22neuropsychiatrists in our country have available a therapeutic option capable of improving
00:27the patient's health prospects.
00:57The mission of the reimbursability of fenfluramine plus the Lennox-Gastaut syndrome agreed by
01:04AIFA is for UCB Italy an important step forward.
01:09Because we are talking about a rare pathology in which the therapeutic outlook is not yet
01:16sufficient to meet the needs of these patients, because they typically speak with resistance.
01:24Fenfluramine is able to reduce epilepsy in a decisive and long-term way and therefore
01:31contribute in a clear way to the quality of life of the patient and his family, but also
01:38to the whole picture of the comorbidities that are accompanied in this pathology.
01:45One of the most complex aspects in the management of Lennox-Gastaut syndrome is the transition
01:50of the patient from the pediatric age to the adult age, a complex moment of transition
01:54that involves the change of the medical team that follows the patient.
01:57There would be a need for institutionalized paths in which the transition follows a path
02:05that certainly cannot be carried out in a single moment, in a single day.
02:10For example, with structured ambulatories that start in adolescence, around 14-15 years old,
02:16the ambulatory provides visits with the presence of the pediatric neuropsychiatrist, the neurologist
02:22and other professional figures such as the psychiatrist, the physiatrist, but also the social assistant,
02:27in some cases the psychologist is very important, and slowly accompany the patient to move
02:33towards the adult environment.