Cystic fibrosis 2012 national day
25 April 2012 – fourth Wednesday of April
on the occasion of the celebration of the national day of 2012, the Catalan Association of Cystic Fibrosis (ACFQ), and the Spanish Federation of Cystic Fibrosis (FEFQ) rejected the cuts taking place in research and science at the State level, as well as in health in some autonomous communitiesdue to the economic crisis.
Cystic Fibrosis (CF) is one of the most common serious genetic diseases and an estimated incidence in Catalonia environment to one of every 5,300 births, while one in every 25 people are carriers healthy disease. Is a chronic genetic origin affecting different organs, especially the lungs and pancreas.
in recent years has made much progress in knowledge and treatment of the disease but, nonetheless, remains a pathology without healing. Therefore, the promotion of research, is very important that brings us closer to a possible cure of the disease and to the improvement in treatments. Reduce investment in science and research will be a blow to the evolution in the improvement of the quality of life of people with serious diseases such as Cystic Fibrosis.
the Catalan Association of Cystic Fibrosis, the Federation and associations that we are believe that the exit from the crisis cannot be realized endangering progress achieved in the field of health and research in recent years, and reject the cuts that are likely to impair the quality of life of people who depend on continuing treatments and a daily medication for keep on living.
We need to maintain what we have achieved and do not want any backlash, if not quite the contrary, we want all new treatments that will appear are incorporated in the portfolio of services and are available to all CF patients according to medical criterion and not economic.
It is also essential that, with the support of all, ensure the existence of a health system universal, public and free, fully accessible for persons with chronic diseases, such as Cystic Fibrosis. Spanish health system is one of the most profitable healthcare systems in the world. Spain is one of the developed countries that invests less in health (9.7 of the GDP, while in France is 11.8 per cent; in Germany 11.6%, Netherlands 12%; and United States 17.4%), and which offers performance far superior to the average of the European Union.
On the other hand, the Catalan Association of Cystic Fibrosis, the Federation and associations that we are continue calling for the introduction of the detection of the disease in all the newborn babies and throughout the national territory. In the first quarter of 2012 joined Cantabria and Valencia the list of autonomous communities that Yes incorporate this diagnostic test, but there are still four where does: Asturias, Navarra, Castilla – La Mancha and Ceuta. It is imperative that this newborn screening from becoming implanted in all Spain and that there is no territorial differences, that it is necessary to ensure an early diagnosis of the disease and prolonging the life expectancy of people with Cystic Fibrosis. Catalonia was the first autonomous community where neonatal screening began in 1999 and have been diagnosed more than 100 patients who have seen improved its quality and life expectancy.
