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People with Cystic Fibrosis join the World Day of Rare Diseases
The objective of the World Rare Disease Day is to raise awareness about rare pathologies and to place value on research for the prevention, diagnosis and treatment of them.
The Cystic Fibrosis Association of the Balearics and the Respiralia Foundation join the Cystic Fibrosis Spanish Federation, FEDER (Rare Disease Spanish Federation), the European Organization of Rare Diseases (EURORDIS), the Ibero-American Alliance of Rare Diseases (ALIBER) and the International Network of Rare Diseases (RDI) in celebration of the World Rare Disease Day, which will take place on February 28 and whose objective is to give visibility to the reality suffered by people with rare diseases.
In Spain, World Day 2019 is entitled “Rare diseases: a comprehensive challenge, a global challenge” and wants to contribute to a global approach to these rare diseases, promoting a Resolution of the UN General Assembly to integrate them into planning of universal coverage, because guaranteeing universal access to health means guaranteeing access to the diagnosis and treatment of all people with rare diseases, regardless of where they live and the pathology with which they live.
It is essential to guarantee equity and equality access to all orphan drugs, contributing to the harmonization of access criteria as well as the unification of medication valuation reports. In the case of Cystic Fibrosis, the new medicines that are appearing and that treat the underlying cause of the disease, are being approved in many European countries (Italy, Germany, Holland, Sweden …) while in Spain we are still waiting for their funding by part of the National Health System.
The Cystic Fibrosis Balearic Association and the Respiralia Foundation unite in this way with the demands of FEDER and the global challenge of achieving real equity and equality in the treatment of these diseases. For its part, the Association and the Foundation request the Ministry of Health to solve the situation of inequity that is occurring in Cystic Fibrosis with respect to other countries of the European community. Situation that has been increased with the decision of the Canarian government to finance the drug Orkambi unilaterally, due to the lack of response from the Ministry, and thanks to which several patients from that autonomous community are already beginning to receive it.
We still do not understand how the Ministry can not reach an agreement with the laboratory when other countries around us and an autonomous community of our country have opted to facilitate their access and the European Medicines Agency has already approved the indication of Orkambi for children from 2 to 5 years, as well as another drug, Symkevi, for the same mutation and also for several more mutations. It is necessary that there is an urgent solution to avoid further suffering.
People with Cystic Fibrosis and their families have hopes placed in the next Interterritorial Council of the National Health System, which will be held on March 4, one day before the dissolution of the cameras.