Cystic fibrosis, an aggressive and expensive disease that needs a law

It is serious but does not spread and does not affect intellectual ability. Cystic fibrosis is a disease genetic and incurable which over time strongly damages the lungs.

Fibrocystic patients are, from an early age, frequent candidates for bipulmonary transplantation. Just as the case we have been covering since With well-beingfrom Federico Rivero, who is still recovering very well.

The diagnosis is made by neonatal screening, compulsory in our country by the law 24.438 (sanctioned in 1994). The disease also affects the pancreas, responsible for producing the enzymes needed for metabolization food. As a result, people with this disease are at constant risk of malnutrition if they do not receive enzyme supplements At each meal.

Right to live better

From Civil Association "Your air, my hope" report that many children and young people with the disease are dying from lack of access treatment. Improve the quality of life of people living with cystic fibrosis and that of their families, there is a law in the parliamentary process that needs the signatures of citizens to get their approval.

"Only one of the necessary drugs costs more than $ 300,000.This covers only one month of treatment that can not be interrupted without causing irreversible lung damage," they claim.

A broadcast campaign

On the other hand, Argentine Association of Cystic Fibrosis convenes a solidarity choir concert conducted by Martín Santoro to be held on Sunday, September 8 (World Day of this disease) at 6 pm in the auditorium hall of the Italian club of Buenos Aires (Av. Rivadavia 4731, BCA).

With the celebration of World Day of Cystic Fibrosis It is intended to shed light on the global situation in the management of the disease and to contribute to the development of minimum standards of treatment. This includes the availability of drugs, equipment and specialized professionals in this rare disease.