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In this informative capsule, we are joined by Jorge Busquets, father of a young man with cystic fibrosis who, until recently, had Mycobacterium abscesus and Staphylococcus aureus. We talk about what an association can do in cases like this.
Evolving Therapeutics’ involvement
His son Jorge was rapidly losing lung capacity, was weak, and was losing weight, so he was called in for pre-lung transplant tests.
Thanks to Evolving Therapeutics, a company created with funding from the Respiralia Foundation, Jorge was able to benefit from compassionate use phage therapy treatment to combat the mycobacterium.
A mistake that could have been very costly
His mutations were not included in the list of mutations approved by the Ministry of Health for the drug Kaftrio, so he was initially unable to take it.
Thanks to research by the Respiralia Group, a transcription error was discovered in one of the mutations in Jorge’s medical history. This spelling mistake meant that neither of his two mutations appeared on that list.
Once corrected, it was discovered that this mutation is indeed being studied in other countries, so scientific evidence could be obtained for his pulmonologist to request the medication from the hospital.
The process was not easy, as the hospital was reluctant to provide Kaftrio, but between pressure from the pulmonologist on the hospital management and from the Association at the political level, the treatment was obtained.
More phages for complete recovery
Evolving Therapeutics also provided phages to combat staphylococcus. With all this, Jorge noticed an improvement after 3 or 4 days.
After 10 days, he had his first test and had improved by almost 10%. Since then, he has continued to improve, both physically and in terms of self-confidence, as well as the quality of life for the whole family.
The strength of the group versus the individual
As Jorge says: “A group can exert pressure; a single person always comes up against a wall.”” As Grupo Respiralia, we will never stop fighting for the rights of everyone in our community.
#TogetheragainstCF
