martes, 12 de noviembre de 2013
Hopefully for the good of many , which is solved
12/11/2013 The Cystic Fibrosis Spanish Federation claims that more advanced drugs for the disease, available in Europe, not reaching Spain On the occasion of the celebration of the European Week of Cystic Fibrosis , from 18 to 24 November 2013 , a meeting in the European Parliament . The next November 14, 2013 from 13-15 hours a meeting held in Brussels , in the European Parliament, professionals and people with Cystic Fibrosis in Europe to try to implement the standards of treatment of the disease. There are about 40,000 people with Cystic Fibrosis in Europe , but depending on where they live , have a different prognosis . Solutions to improve the quality of life and survival with relatively low cost , affordable , come to take important steps towards equal access to quality treatment across Europe. In Spain it is necessary to equate the treatment of CF than in many other European Union countries . The Cystic Fibrosis Spanish Federation reports that more advanced drugs to treat the disease are coming to Spain , because the government is not willing to bear the costs . Even European countries with worse economic situations are administering these drugs , which relieve the symptoms of cystic fibrosis and can help control the disease so that people have a completely normal life . It is clear that cuts in health benefits that are occurring in Spain , along with the reduction of investment in research , are jeopardizing the quality and even life expectancy of children and young people with cystic fibrosis , restricting the right to receive the most advanced and appropriate treatments for this disease. The meeting to be held in the European Parliament on 14 November, and attended by representatives of the Spanish Federation of Cystic Fibrosis, these inequalities are discussed and possible solutions that would achieve a reduction in the gap in access to quality treatment and chances of survival for people with CF in Europe. Both the European Cystic Fibrosis Association , as the Spanish Federation , believe that an important step to improve the quality and life expectancy of people with this disease is the development of " European standards of treatment," the result of a collaborative effort patient organizations , clinicians and researchers across Europe . These standards should be adopted and implemented by all member countries of the European Union . For this we need the support of the authorities and policy makers. Their efforts could create conditions for a qualitative leap towards better treatment and care of people with this Cystic Fibrosis , and also help other rare diseases . More than 40,000 lives are at stake .