Disponible en / Available in: Español
The Spanish Federation of Cystic Fibrosis, together with the associations of Cystic Fibrosis of the different autonomous communities, calls a concentration in Madrid on September 8, coinciding with the World Day of the disease, to demand the financing of new treatments that slow down the deterioration produced by Cystic Fibrosis in people with the F508D mutation (the most common in our country and one of the most aggressive).
From the Respiralia Foundation and the Cystic Fibrosis Association of the Balearics we join the claim of the Spanish Federation of Cystic Fibrosis so that doctors specialized in Cystic Fibrosis can have the latest-generation medicines such as the Orkambi or others that are on the doorstep be approved
It has been three years since the European Medicines Agency (EMA) gave its authorization to Orkambi, while in Spain patients continue to wait for the Ministry of Health and the laboratory that markets the medicine to reach an agreement regarding their price. In addition, there is another medicine (Symdeko), already approved by the FDA in the United States, which we believe will soon receive approval by the EMA and is indicated for the same type of patients.
We can not keep waiting while the health of people with Cystic Fibrosis continues to deteriorate. Therefore, we are going to mobilize to demand the urgent financing of these medicines and that they can begin to be supplied as soon as possible among the patients who need them.
There will be two concentrations, one at 11:00 am in front of the Ministry of Health (Paseo del Prado, 18) and another, at 1:00 pm in front of the Vertex Pharmaceuticals laboratory headquarters (C / Marqués de Villamagna, 3).
You can read our press release here (Spanish version).