Monterey.- “It outweighed any illusions,” says Mexican youth Leslie Muoz González, who as a child was able, thanks to the economic sacrifice of his family, to access an expensive drug that saved his life. .
His delusion, he confirms, was “exactly a cure, or almost a cure, for cystic fibrosis (CF), allowing us to reach adulthood as I am living now.”
The genetic disease suffered by Leslie Munoz Gonzalez is chronic, progressive and, if left untreated, is terminal.
According to expert estimates, 3,000 to 5,000 people suffer from it in Mexico, but their life expectancy in the country is only 20 years on average.
Despite the fact that there are already state-of-the-art drugs that can extend the lives of CF patients indefinitely, the Mexican government still doesn’t distribute any of them.
“Tricapta has given me life, it has given me to be able to expand my lungs, to breathe freely, something I hadn’t done in a long time,” Leslie says of that drug. Which it started taking a year ago and which emerged in the pharmaceutical market a few years back. only two.
After a fierce legal battle between her and her family, on June 8, the young woman from Tamaulipas won the government’s right, through Pemex, to freely distribute the expensive drug produced by Vertex Laboratories in the United States.
However, at present, the parastatal from which the girl’s parents have retired has not complied with the order issued by the 13th District Judge in Ciudad Madero, Tamaulipas.
Trikafta is a drug that, according to experts, is highly effective against CF, but must be taken for life and has a monthly cost of more than 30 thousand dollars, which means more than 7 million pesos annually to the patient’s family. have to spend.
In the United States, Canada, Australia and European countries, Tricapta and three other state-of-the-art CF drugs are already distributed by local public health systems.
In them, the life expectancy of a patient is 50 years or more. In Mexico, however, the Federal Commission for Protection against Sanitary Risk (Coffepris) also has not approved Vertex’s new drug, which would be the first step for its nationwide distribution. “Trikafta is not a psychotropic and does not require a special permit.
Leslie’s mother even processed a permit to import it, “Pemex doesn’t do it because it doesn’t want to,” says Zamira Ayala, an attorney at the office that defends the family based in Tampico, Tamaulipas.
Meanwhile, the director of the Mexican Association of Cystic Fibrosis (AMFQ), Guadalupe Campoy, believes that if the government’s argument is the high cost of the drug, CF patients are “having a harder time in any case because they Up to five are hospitalized or six times a year”.
CF is an aggressive disease that attacks the respiratory, digestive and even reproductive systems, although according to experts most patients die from pulmonary complications. Some doctors even recommended that Leslie Munoz’s family get her admitted for a lung transplant.
However, since he has started taking Trikafta, his life has changed and his lungs are recovering.
“Leslie improved incredibly, she was always on oxygen, she could barely walk because she was drowning; now she can go running, she has improved a lot”, Campoy says.
“Everyone who takes these drugs is off the list for lung transplants because they no longer need them,” he says.
Although there are more than 2,000 types of CF, triptans was the most effective drug for the condition presented by Leslie Munoz, now 30, most of which depend on supplemental oxygen and are caused by an attack of lung infections. disease.
Leslie Munoz says, “I request the authorities to allow us to enter this drug, that it be given to patients, that they understand that it is not just a cure, but that it is an opportunity to live.”
(with information from Alejandro del Toro)