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The Cystic Fibrosis Spanish Foundation has asked the Congress of Deputies to join the commemoration of World Cystic Fibrosis Day, on September 8, approving an institutional declaration in which the Congress publicly expresses its solidarity with all the people who live with this disease and declare the Chamber’s commitment to the care and protection needs of this group.
Cystic Fibrosis (CF) is one of the most frequent serious genetic diseases and an incidence in our country is estimated to be around one in every 5,000 births, while one in every 35 people are healthy carriers of the disease, which is approximately 1,5 million people. However, as it is a rare disease, its visibility is lower, so all efforts to make it known will result in greater attention and awareness towards people who suffer from it.
It is a chronic disease of genetic origin that affects different organs, mainly the respiratory and digestive systems. For people with CF, contracting any other disease that affects the respiratory system is especially dangerous. Therefore, the COVID-19 crisis in which we find ourselves generates a special concern in the entire group.
With the commemoration of the World Cystic Fibrosis Day, promoted by the CF International Association (CFWW), it is intended to shed light on the global situation in which people living with this disease find themselves and help the development of standards of treatment. This includes access to the most appropriate medication, creation and greater endowment of resources of the Multidisciplinary Reference Units in CF, as well as support for the research of new treatments and new forms of administration of drugs that help improve adherence to treatment and a higher quality of life for people with Cystic Fibrosis.
For this reason, the Spanish Cystic Fibrosis Foundation, made up of the CF Spanish Federation (made up of patients and family members) and the CF Spanish Society (made up of doctors specializing in the disease), has requested the Congress of Deputies to Join the commemoration of this day with an institutional statement, which will be read by the President prior to one of this week’s plenary sessions, in which Congress publicly expresses its solidarity with all people with Cystic Fibrosis and declares the commitment of the Chamber with the aforementioned care and protection needs, which are fundamental to improve the quality and life expectancy of patients.
The president of the Spanish Cystic Fibrosis Society and vice president of the Foundation, Dr. Óscar Asensio, urges all parties to work together in favor of CF: “We must take the opportunity to move forward together with the example achieved during the Covid pandemic, moving towards the use of telemedicine as well as accelerating the arrival of treatments that can clearly change the prognosis of the disease. The administration, regulatory agents, civil and scientific society together with the pharmaceutical industry should direct their efforts in that direction.”.
The president of the Respiralia Foundation, Teresa Llull, expresses, in this sense, her confidence in the commitment of the parliamentary groups to the collective: “It is the first time that an initiative in this sense has been promoted in Congress. The parliamentary groups have attended it and have not hesitated to show their support in this way to our entire community. We are very happy and grateful for the support and we hope that it will serve as a beginning to continue improving the care in our group, recognizing and articulating evaluation criteria of the Multidisciplinary Units in CF, which will help to recognize the work done by professionals, improve their coordination, and avoid confusion and uncertainty for families when receiving the diagnosis. On the other hand, the current situation is putting the focus on Covid-19 but it is very necessary to continue advancing in the processes of access to treatments already approved and others under negotiation, something that requires the commitment of all the groups involved and that from the Respiralia Foundation and the Balearic Association of Cystic Fibrosis we are going to work so that it is carried out as soon as possible”.
