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The Respiralia Foundation and the Cystic Fibrosis Association of the Balearics, together with the Cystic Fibrosis Spanish Federation , demand greater agility in access to drugs approved in Europe
The Respiralia Foundation, the Cystic Fibrosis Association of the Balearics, together with the Cystic Fibrosis Spanish Federation and the associations of 38 European countries, join one more year in the initiative created by the European Cystic Fibrosis Society to celebrate the European Week of this disease, from November 16 to 22, 2020, with the aim of improving the quality and life expectancy of people who have this pathology.
Cystic Fibrosis (CF) is the most common serious genetic disease in Europe. It is a chronic and degenerative disease that mainly affects the respiratory and digestive systems. It is estimated that the incidence in our country is one case in every 5,000 live births (1 in every 6,400 in the Balearic Islands), while one in every 35 inhabitants are healthy carriers of the disease. In recent years, much progress has been made in the knowledge and treatment of the disease, especially thanks to modulators of the CFTR protein that, although they do not cure, have managed to stop the deterioration in people with certain mutations.
There are currently about 40,000 people with Cystic Fibrosis in Europe (73 in the Balearic Islands), but depending on where they live, they have a different disease prognosis. The European Cystic Fibrosis Week is an event to claim that all these people have the necessary treatments, regardless of the country in which they were born, and can improve their quality of life and survival thanks to the creation of referral units and access agile and fast to the new CFTR protein modulator drugs (Kalydeco, Orkambi, Symkevi and Kaftrio, the latter recently approved by the European Medicines Agency and pending approval by the AEMPS).
Existen unos “Estándares europeos de tratamiento”, que son resultado de un esfuerzo colaborativo de las asociaciones de pacientes, médicos e investigadores de toda Europa, y que deberían ser adoptados e implementados por todos los países miembros de la Unión Europea. Para ello necesitamos el apoyo de las autoridades y los responsables políticos. En España, la Declaración Institucional de apoyo a las personas con Fibrosis Quística, aprobada el 8 de septiembre por unanimidad en el Congreso de los Diputados, fue un primer paso importante, que hemos visto replicar por otros parlamentos autonómicos. Estos esfuerzos podrían crear las condiciones para dar un salto cualitativo hacia un mejor tratamiento y cuidado de las personas con Fibrosis Quística, y también ayudar a otras enfermedades raras.
In our country, as claimed by the Spanish CF Foundation in the “Manifesto for Cystic Fibrosis“, it is necessary to equalize the treatment of this disease throughout the national territory, based on European standards and providing units of reference to the hospitals that treat the most CF patients and that lack them, also recognizing them at the national level by the SNS. In the Balearic Islands, as Dr. Antonio Moreno, Deputy Medical Director of the Son Espases University Hospital, has commented, the preliminary procedures for the creation of this necessary Cystic Fibrosis unit have already begun.
With the current health crisis produced by Covid-19, it is essential to strengthen the medical follow-up of patients, complementing it with new telemedicine tools, both due to the possibility of new confinements and the need to avoid contacts and possible cross infections, given the special vulnerability of people with CF.
On the other hand, access to new treatments that are appearing cannot be subject to economic negotiations between the laboratory and the health system of each country, but it should be a right of patients to receive it once the drug has obtained approval from the European Medicines Agency, as happens in other countries of the European Union. In addition, it is necessary to support research and access to new antibiotics and new forms of presentation of these that help those people with Cystic Fibrosis who still do not have treatment with modulators of the CFTR protein.
