Andalucia has announced that patients diagnosed with epidermolysis bullosa – commonly known as ‘butterfly skin’ – will soon have access to a pioneering medication.

The drug, recently authorised by both the EU and Spain’s Medicines and Medical Devices Agency (Aemps), is expected to help relieve symptoms, reduce pain and significantly improve the quality of life for those affected.

The announcement was made by regional president Juanma Moreno during a parliamentary control session.

Moreno revealed the news after meeting 12-year-old Leo Gutierrez from Sevilla, who lives with the condition.

The boy attended the meeting alongside his mother, Lidia, as well as representatives from patient associations and healthcare professionals involved in his care.

Moreno explained that the Junta has been working for some time to ensure access to the innovative therapy and confirmed that the drug – called Vyjuvek – should be available in Andalucia within the coming weeks.

The Andalusian Health Service (SAS) has launched an exceptional procurement procedure to acquire the treatment as quickly as possible.

Moreno hopes other Spanish regions will follow suit and that the treatment will be incorporated into Spain’s national healthcare system.

A wider rollout would help expand access and potentially reduce the high cost currently associated with the medication.

The drug has already been approved by Aemps and is now in the administrative phase prior to purchase.

Epidermolysis bullosa is a rare degenerative condition that causes extreme fragility of the skin and mucous membranes.

Even minor friction can lead to painful blisters and wounds, requiring daily care and constant treatment to prevent infection.

The condition can severely affect everyday activities such as eating, walking, dressing and even speaking, as lesions frequently develop in the mouth and other sensitive areas.

Read more Andalucia news at the Spanish Eye.