Pamplona (EFE).- The Spanish Cystic Fibrosis Federation is celebrating its biennial congress in Pamplona this weekend. This is happening in the face of hopes for drugs that can “stop the disease and change your life in 70% of cases, although 30% continue treatment without this type of treatment.”
This was pointed out by the president of the Navarre Cystic Fibrosis Association, Cristina Mondragon, at the opening of the VIII Congress. This time it is called “Days of change, days of hope” and takes place at an “exciting” moment for patients.
In this regard, Minister of Health Carolina Darias spoke via videoconference to highlight the positive evolution in access to treatments for this disease over the past year. He cited a milestone in December 2021 when the drug Kaftrio was included in NHS funding for victims aged 12 and over.
Also for pediatric patients
“This meant “before and after” for a very important number of people, the opportunity to live by improving the quality of life of patients,” the minister emphasized.
To this progress, Darias deepened, adding the dosage approved last week of 37.5 milligrams of Kaftrio for children up to 30 kg. With the format for pediatric patients, public funding for all indications and presentations of this medicine is complete.
As for the congress, it features presentations by various experts who will focus on the challenges of living with cystic fibrosis, advances in its treatment, and recent advances in finding the ultimate cure.
To this end, various roundtables and workshops will address topics such as Minority Mutations: The Following Treatments in Development, Mental Health in Cystic Fibrosis, Breathing Physiotherapy and Exercise, Healthy Recipes, Early Access to New methods of treatment in Spain” or “Effects of new modulators in cystic fibrosis”.
In addition, there is a poster room at the congress where research staff or specialists can present their work and exchange knowledge.
Cystic fibrosis affects one in every 3,000 newborns, and there are more than twenty cases in Navarra, most of them children and young adults. It is a degenerative and chronic disease that mainly affects the respiratory and digestive systems and is a serious health problem that, in advanced cases, may require a lung transplant.
Edition: Maria Montoya