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The Parliament of the Balearic Islands has hosted this morning the photographic exhibition “Self-care of Cystic Fibrosis. The endless story that can change” of the Cystic Fibrosis Spanish Federation. The President of the Balearic Government, Marga Prohens, and the President of the Parliament, Gabriel Le-Senne, have presided over an act that has counted with the presence of Councilors of the Balearic Government, Deputies of all the parliamentary arc, the President of IMAS, Guillermo Sánchez, the Councilor for Economic Promotion and Local Development of the Consell Insular, Pilar Amate, the President of the Respiralia Foundation, Teresa Llull, the President of the Cystic Fibrosis Balearic Association, representatives of collaborating companies and members of the Cystic Fibrosis Balearic Association.
This exhibition will remain at the Parliament of the Balearic Islands until Friday, February 9 at 14:00 hours.
Evolution of CF treatment
The photographic exhibition depicts part of the daily treatment that must be carried out to try to control the progression of this degenerative disease.
We talk about treatments to open the airways through inhalation and nebulization of medications, airway clearance through respiratory physiotherapy exercises and reeducation to effort, antibiotics to control infections, vitamins and food supplements, various hospitalizations, hygienic measures ….
All this is essential in the fight against this disease.
Authorities have shown interest in learning more about CF and its treatments
The President of the Balearic Government, Marga Prohens, the President of the Parliament of the Balearic Islands, Gabriel Le-Senne, the Minister of Health of the Balearic Government, Manuela Garcia, the President of IMAS, Guillermo Sanchez, and the Councilor for Economic Promotion and Local Development of the Consell Insular, Pilar Amate, as well as several deputies and deputies followed with attention the explanations of the Director of the Respiralia Group, Carlos Pons.
A story that can change
Since the gene that produces this disease was discovered in 1989, much progress has been made, although, in the eyes of people with the disease and their families, perhaps at a slower rate than desired.
In November 2021, after three years of delay with respect to the United States, the Ministry of Health reached an agreement on the price of the drug Kaftrio, a drug that was administered in the Balearic Islands 5 months later than in other communities, but which is changing the lives of the people who take it.
Kaftrio is indicated for people who have at least one F508del mutation, approximately 70% of the population with Cystic Fibrosis. People who are taking Kaftrio are improving their lung function, their quality of life, being able to do more physical exercise and some of them have even managed to get off the transplant waiting list.
A paradigm shift in the treatment of Cystic Fibrosis
It is a medication that is changing the paradigm of this disease. However, we must be cautious not to fall into the temptation of not carrying out certain aspects of the treatment, since it is a new medication that we have to see what effects it has in the medium and long term.
We do not forget the 30% of the CF population that cannot take Kaftrio
As entities dedicated to the treatment of Cystic Fibrosis we should be happy for those who are taking it, but aware that we have 30% of the population with Cystic Fibrosis who do not have access to these modulators.
For all these people we send the message that we will not stop fighting for them. We will not stop fighting until we find a cure for the disease. We will not stop looking for treatments that can also help them to improve their quality of life, just as Kaftrio is doing for some of them.
A 2024 focused on research
In 2024, we will continue to support research projects that contemplate these less frequent mutations, such as the stem cell research project to combat inflammation in respiratory diseases, the phage therapy research project, already supported since last year, and others that will be submitted to the assessment of the Board of Trustees of the Respiralia Foundation.