2023-09-19 18:30:41
Cystic fibrosis is a genetic disease that causes complications in the respiratory tract and digestive system.
A recently developed medicine might extend the life expectancy of people who suffer from this disease up to 27 years, however, access to this type of medicine in Colombia is very limited, which creates a via crucis for families seeking to provide a better quality of life for their children who suffer from this disease.
In dialogue with Mañanas Blu, when Colombia is on the air, Giselle García, mother of two children with cystic fibrosis, gave details of what her experience has been like and what the biggest limitations in that process have been.
To be able to have the doses of trikafta, the medicine that children require to control this disease, there are a series of administrative and authorization processes that become a real ordeal for families.
“So that the child was given the medication it was with a pediatric dose, my son had to weigh 28 kilos so that it might be given to him. The Invima permit was obtained. But it is not profitable to sell those doses,” he said.
“It changed my son’s life and ours, following my son was dependent on oxygen he now has another life, it is an impressive change, it is sad to feel this existential anguish every month,” the woman said on Blu Radio.
Below is the woman’s story:
You may be interested in:
1695157554
#administrative #crucis #authorization #medicine #patients #cystic #fibrosis
