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Members of all the Cystic Fibrosis associations of Spain concentrated on Saturday September 8, International Day of Cystic Fibrosis, in front of the headquarters of the Ministry of Health and the Vertex Pharmaceuticals laboratories to demand an agreement for the financing of the Orkambi medicine.
At the initiative of the Spanish Federation of Cystic Fibrosis, all associations in Spain related to the disease were present at the concentration to demand a financing agreement for new medicines such as Orkambi.
This medicine has been approved in the United States for 3 years, almost 3 years approved by the European Medicines Agency and more than 2 years with the approval of the Spanish Medicines Agency. Our claim is based on our belief that specialized doctors should be able to have it at their disposal for those cases that they deem necessary. In Spain, more than 200 people meet the requirements (homozygous DF508 and over 12 years old) to be able to be beneficiaries of the drug, 12 of them in the Balearic Islands. As long as the Ministry and Laboratory do not agree on funding, we are losing lives along the way.
In Europe, up to 13 countries have already approved the medication. While it is an expensive drug, the solutions offered by going to the root of the problem and not to resolve the symptoms, means that there are not so many infections, so many intravenous antibiotic treatments, so many hospitalizations, etc. In short, disease is stopped and quality of life is gained.
In a short time there will be other new generation drugs, such as Symdeko, which will stop the disease to people with Cystic Fibrosis with other mutations. Will we have to wait so many years for funding? We can not afford it.
#OrkambiYA #SymdekoYA
