“<a href="https://time.news/drugs-ubc-italia-fenfluramine-decisively-and-lastingly-reduces-epileptic-seizures-lennox-syndrome/” title=”Drugs: Ubc Italia, "Fenfluramine decisively and lastingly reduces epileptic seizures, Lennox syndrome”>Lennox-Gastaut syndrome is a severe developmental and epileptic encephalopathy that occurs in childhood, in some cases in the first year of life, in others, in preschool age. It is characterized by the association of different types of crises, among which the most handicapping are the tonic or atonic ones, which involve an unexpected, brutal and violent fall, which in turn can cause further damage due to consequences related to head trauma”. This was said by Bernardo Dalla Bernardina, former professor of Child Neuropsychiatry at the University of Verona and scientific director of the Research Center for Pediatric Epilepsies at the Aoui Women’s and Children’s Hospital in Verona, commenting on the news of Aifa’s green light for reimbursement of fenfluramine for the treatment of Lgs, which affects approximately one million people worldwide.
How does fenfluramine improve treatment options for patients with Lennox-Gastaut syndrome?
Interview with Bernardo Dalla Bernardina on Lennox-Gastaut Syndrome and Fenfluramine Reimbursement
Editor: Welcome, Dr. Dalla Bernardina. We’re grateful to have you here today to discuss the recent developments regarding Lennox-Gastaut syndrome (LGS) and the Aifa’s approval of fenfluramine for reimbursement. To start, can you explain what Lennox-Gastaut syndrome is and its potential impact on children?
Dr. Dalla Bernardina: Certainly, and thank you for having me. Lennox-Gastaut syndrome is a severe form of developmental and epileptic encephalopathy that typically manifests in childhood, sometimes as early as the first year of life. It is characterized by multiple types of seizures, with tonic and atonic seizures being particularly debilitating. These seizures can lead to sudden falls, increasing the risk of head trauma and further complications. The impact on affected children and their families can be profound, affecting not only physical health but also cognitive and emotional development.
Editor: That sounds incredibly challenging for both the children and their families. With around one million people affected worldwide, what makes LGS a unique challenge in pediatric neurology?
Dr. Dalla Bernardina: LGS is unique because it often presents with a combination of various seizure types, cognitive impairment, and behavioral issues. Unlike other forms of epilepsy that may be more straightforward to treat, LGS is complex and often resistant to standard treatment options. The seizures can also have a very disruptive effect on everyday life, requiring comprehensive and ongoing management. Each child’s presentation can be different, making it crucial for a tailored approach to treatment.
Editor: Speaking of treatment, Aifa’s approval of fenfluramine for LGS treatment is significant. Can you elaborate on how this medication works and its potential benefits for patients?
Dr. Dalla Bernardina: Fenfluramine is a drug that has shown promise in reducing the frequency of seizures in patients with LGS. It works by affecting serotonin levels in the brain, which can help modulate excessive neuronal firing, a key component in seizure activity. The green light for reimbursement by Aifa means that more families will have access to this potentially life-altering treatment, substantiating the need for effective management options in managing LGS.
Editor: This approval sounds like a crucial step forward. What implications do you see this having for patients and their families?
Dr. Dalla Bernardina: The implications are profound. First and foremost, with fenfluramine now being covered, it alleviates the financial burden on families, allowing them access to essential medication without the weight of exorbitant costs. Furthermore, this adds a valuable tool in the therapeutic arsenal for managing LGS, potentially improving quality of life for many children. It also emphasizes the importance of continued research and development in this field, urging a focus on individualized treatment strategies.
Editor: Given your extensive background in child neuropsychiatry, what practical advice would you offer to families affected by LGS as they navigate treatment options?
Dr. Dalla Bernardina: Families should maintain open lines of communication with their healthcare providers. Each child’s response to treatment can vary, so it’s important to regularly assess the effectiveness of any prescribed therapies. Staying informed about new research and treatment options, like fenfluramine, is also vital. Engaging with support groups can provide additional resources and emotional support as navigating LGS can be isolating. Lastly, prioritizing overall well-being, including nutrition, therapy, and social interactions, plays a crucial role in managing the challenges associated with LGS.
Editor: Thank you, Dr. Dalla Bernardina, for your insights into Lennox-Gastaut syndrome and the recent developments regarding fenfluramine. This information will surely resonate with many families and individuals affected by LGS.
Dr. Dalla Bernardina: Thank you for the opportunity to discuss this crucial topic. Awareness and understanding are essential in driving support and advancements in care for those impacted by LGS.
