The Junta de Andalucía has announced that it will finance the treatment for the disease known as “butterfly skin”, a rare pathology that causes extreme skin fragility. The Andalusian president, Juanma Moreno, confirmed that the Andalusian Health Service (SAS) will facilitate access to the drug Vyjuvek for 45 patients in the community, among them the Sevillian boy Leo, whose case went viral after demanding the treatment in the European Parliament.
The drug has an approximate cost of 100,000 euros per month per patient, which makes it one of the most expensive medicines approved to date. The Board hopes that it can be available in a matter of days or weeks and that this initiative will encourage other autonomous communities to also incorporate it into their healthcare systems.
"The first thing we have done has been to listen to them and try to find formulas, drugs, to access them and that can help them. Leo has given voice and face in the European Parliament to all these patients," Juanma Moreno pointed out, who also wanted to thank healthcare professionals and the association that accompanies patients, highlighting “the invaluable and tireless work they have been developing”. Moreno also stressed that this advance is “something we must celebrate, that is worthwhile” and defended that “real politics is this: working to improve the lives of others”.
Vyjuvek is the first gene therapy specifically designed to treat dystrophic epidermolysis bullosa, the most severe type of this disease. It works by introducing healthy copies of the gene responsible for producing type VII collagen, a key protein that holds the skin layers together. In this way, the treatment promotes wound healing, reduces pain, and decreases the risk of infections, significantly improving the quality of life of patients.
The disease, popularly known as "butterfly skin", causes blisters, wounds, and scars with the slightest touch due to the extreme fragility of the skin. In Spain it is estimated that around a thousand people live with this pathology, of which about 200 suffer the most severe forms. In Andalusia there are 45 patients with this variant, who will be the main beneficiaries of the treatment.
The Andalusian Government hopes that the decision will contribute to extending access to this medication throughout Spain and that, with the increase in demand, the price may be reduced in the future. Meanwhile, for those affected and their families, the arrival of Vyjuvek represents an unprecedented hope to alleviate daily pain and improve their quality of life.
