Disponible en / Available in: Español
The General Directorate of Planning and Pharmacy approves the purchase of Kaftrio in the Balearics, after several months of delay with respect to the rest of Spain.
A hopeful drug
Kaftrio has come to change the lives of many people with Cystic Fibrosis. The Balearic Government has been the last one in approving the purchase of this medicine of last generation, with many months of delay with respect to the rest of communities of Spain.
Since last Tuesday, April 19, the medical team at Hospital Son Espases has had this drug at its disposal through the ordinary route and not through the emergency route, as it was until now.
An effective treatment if taken at the right time
This decision of the Regional Pharmacotherapeutic Commission of the Balearic Islands is important because it allows to improve the health of people with Cystic Fibrosis without having to wait for a drop in their state of health to give them this medicine.
Confidence in the good judgment of the medical team
Now it is time to wait for the medical team to decide which people need this drug before others, so patience must be based on the confidence that it will be based on scientific criteria.
Target population of the drug in the Balearic Islands
Of the 79 people with Cystic Fibrosis that the Respiralia Group has registered, 40 of them have a copy of the F508del mutation. Of these, 5 have been transplanted and, therefore, cannot take Kaftrio. Of the remaining 35, 25 are 12 years old or older, so they will be able to receive this treatment with the indications approved by the AEMPS to date.
What is Cystic Fibrosis?
Cystic Fibrosis is a genetic, serious and degenerative disease that to date has no cure.
It mainly affects the respiratory, digestive, reproductive and sweat glands.
The treatment for Cystic Fibrosis includes antibiotherapy, a healthy and hypercaloric nutrition and respiratory physiotherapy combined with endurance exercises.
You can see the infographic published by the Cystic Fibrosis Spanish Federation in this link (Spanish version) or see how Dani tells us what this disease is for him in this vídeo (Spanish version).
Currently, more than 2000 mutations are known in the gene that is defective in people with Cystic Fibrosis, although only about 150 mutations are described as causing the disease.
Statistics show that 1 in 5,000 people in Spain has Cystic Fibrosis (1 in 6,400 in the Balearic Islands) and 1 in 35 people is a carrier of a gene that causes the disease (1 in 40 in the Balearic Islands).
In the Balearic Islands there are 76 known diagnosed cases, but statistics speak of between 85 and 90 possible cases.
The awareness project of the Respiralia Foundation aims to raise awareness of this disease in order to discover those cases of people who have Cystic Fibrosis but have not yet been diagnosed.