2023-05-01 16:15:00
On the sidelines of the presentation of the concert by Pierre Lemarchal, president of the Grégory Lemarchal Association, this Saturday May 6, Jordi Barre hall in Pollestres, his friend and initiator of the event Stéphane Mathieu, president of Mucovie 66, talks regarding this drug, Kaftrio®, marketed in January 2022. A medicine “revolutionary” who is “A tremendous hope for our children with cystic fibrosis.”
Stéphane Mathieu, tell us regarding this next concert for the fight once morest cystic fibrosis, a show of French songs performed by Pierre Lemarchal, back on stage ten years ago?
It will take place this Saturday, May 6, at the Jordi Barre hall in Pollestres. The doors will open at 7 p.m. and the concerts in the plural, since the first part will be provided by Lyvan, a singer-songwriter from here, will begin at 8 p.m. If Lyvan will sing songs of his own mixed with French standards, Pierre Lemarchal will once once more be the worthy and moving interpreter of Serge Lama and Jacques Brel, two artists dear to his and our hearts. All in favor of the Grégory Lemarchal Association, who died of illness at the age of 24. A show initiated by Mucovie 66 and supported by around thirty partners.
In concert, Pierre Lemarchal, who has been singing since he was 15, likes to perform his two favorite artists: Brel and Serge Lama.
In January 2022, the American laboratory Vertex Pharmaceuticals developed a revolutionary drug: Kaftrio. You who are intimately affected by this disease through your son, Romain, 21 years old, how do you view this new triple therapy?
It is indeed with full knowledge of the facts that I can allow myself to say how much, at least on my son, the beneficial effects of this therapy were quickly felt. In addition, this medication has no side effects and no major constraints: 2 tablets morning and evening, at fixed times if possible. At the end of the fifth day of his treatment, when he had a breathing capacity reduced to less than 30% and he was getting out of breath at the slightest effort, he confided to me that he was breathing better and having the impression that his chest released an enormous weight. A year later, he regained 95% of his capacity and regained stronger health. He now leads an almost normal life as a young adult. And he is not the only one in this case, children and teenagers from families who are members of Mucovie 66 can testify to their “rebirth” thanks to this treatment.
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More than 700 people affected will be able to benefit from it. What do you think of this great progress?
I’m happy regarding that, of course. But I am also thinking of the 35% of patients – carriers of rare mutations, lung transplant recipients – currently awaiting an effective therapeutic response. This is why all of us, associations, volunteers, collaborators, donors, must continue to fight and remain united, strong and united in the face of cystic fibrosis.
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