Spain authorizes gene therapy for butterfly skin patient in Ceuta

Spain’s Ministry of Health has authorized the National Institute of Health Management (INGESA) to fund a gene therapy treatment for a patient in Ceuta suffering from epidermolysis bullosa (EB), a rare condition commonly known as ‘butterfly skin’.

The treatment, known as Vyjuvek (beremagene geperpavec), is a topical gene therapy designed to treat wounds caused by dystrophic epidermolysis bullosa. The disease is characterized by extreme fragility of the skin and mucous membranes, which can lead to blisters and wounds from minimal friction or trauma.

The annual cost for the treatment is approximately 300,000 euros. INGESA has already requested the first four units of the medication. Due to specific storage requirements, the treatment must remain frozen until preparation. Once received at the Ceuta University Hospital, pharmacy professionals will prepare the medication under controlled conditions before it is dispensed to the dermatology department for clinical application and patient monitoring.