Disponible en / Available in: Español
In this new informative capsule the Respiralia Group presents the talk with Juan Da Silva about the fight against CF and the defense of the rights of our collective.
Solidarity as a driving force in their daily lives
Juan Da Silva is father of two girls, one of them with Cystic Fibrosis. He is president of the Cystic Fibrosis Galician Association, of the Cystic Fibrosis Spanish Federation and of the Cystic Fibrosis Spanish Foundation, besides being employed in a company of his land, Galicia.
Since her daughter was born, as you can see, she dedicates a lot of time to the fight against Cystic Fibrosis and to the defense of the rights of the families of our collective.
Your legacy in the Cystic Fibrosis community
In his second term as president of the Federation, he has marked the lines to empower Cystic Fibrosis associations throughout Spain, promoting training in quality management, and has managed to position this entity as representative of the whole group before the central administration, especially the Ministry of Health, which is who makes most of the decisions that affect us.
The challenges we must face in the short term
The Federation, mainly, but also the Associations and the collective in general, have the challenge of obtaining the approval of the use of the new drugs for children under 12 years of age as soon as possible.
Specifically, we will fight to make Kalydeco available for children from 6 months to 2 years; Orkambi from 2 to 6 years; Symkevi and Kaftrio from 6 to 12 years.
High level of bureaucratic complexity in the Spanish healthcare system
The complexity of the process of approval and purchase of this drug in Spain must be highlighted, given that the transfer of competences to the 17 communities slows down this process, so the role of the Associations, with the support of the Federation, is to put pressure on the authorities and medical teams to speed up the bureaucratic procedures.
Anyone interested can help
Juan Da Silva encourages all families to help their respective associations, not only financially, but with the knowledge or skills that each one has and that can add value to the work of the Association.