The Minister of Health, Ximena Aguileraclarified that the evaluation that the portfolio has made when offering help to the little boy’s family Tomás Ross, who suffers from Duchenne muscular dystrophy (DMD)has not been based on the high cost of the drug – which is around 3.5 billion pesos in the US – but rather it has not been approved in Chile by the Institute of Public Health (ISP).
Camila Gomezthe mother of the 5 and a half year old boy, has been walking from Ancud to Santiago for about a month to raise awareness about DMD, as well as to raise funds to fund the treatment, which consists of the application – a single once in a lifetime – of the drug Elevidys, from the specialized biopharmaceutical company Sarepta Therapeutics, and which was approved last year by the Food and Drug Administration (FDA) through “accelerated approval.”
“They left me with no alternative”the parent said last week in Cooperative, pointing out that months before he had met, without success, with Minister Aguilera. Days later, and still in the middle of his journey from the south, Gómez spoke again with the head of the Minsal, but did not agree to the help proposal, consisting of carrying out the treatment in a Chilean hospital – “not certified” for this by the American laboratory – after the family paid for the medicine.
“The only thing we were missing was 15 percent of the goal, and then the Ministry of Health just appeared,” he also criticized.
In this framework, Minister Aguilera pointed out this Thursday that “the Ministry’s evaluation is not based on the cost of the drug, As many times it has been tried to make known, but in the approval situation that that medicine has.
“The drug has an approval that is called ‘rapid approval’ and is done by the Federal Food and Drug Administration of the United States, and that it is an approval that has been made with a result that is called ‘substitute’, that is, there is still no evidence that the result that this medication gives translates into a clinical response,” he explained.
Likewise, he stressed that he has offered the family the help that the State can provide in this case.
“The help we can provide to the mother and father, in the event that they would like to administer the medication here in Chile, is to facilitate the importationprocedures that are carried out through the Institute of Public Health, and its administration in a public establishment“said the health secretary.
But “when asked the mother, she prefers to administer it in the United States, we certainly respect her decision, and we will continue to be willing to support the mother in everything she needs,” Aguilera stated.
He confirmed, meanwhile, that President Gabriel Boric will receive Camila Gómez in La Moneda next Wednesdayat 1:00 p.m.
The Minsal also committed to sending indications to the project on rare diseaseswhich is in the Senate Health Commission, with the objective of defining the type of pathologies, identifying patients, accompanying them in treatments and explaining when the State can or cannot finance medications.
The campaign raised through the website Ayudatomas.com reports that the collection to date reaches 3,000 of the 3,500 million pesos required, that is, 85% of the goal.
