A judge refuses a request for the purchase of medication – CLMais

The boy Miguel Teixeira da Luz, aged 1 year and 7 months, will continue without the remedy that delays the effects of spinal muscular atrophy (AME), a disease diagnosed at the age of 5 months. Two weeks ago, he was hospitalized at the children's hospital Seara do Bem de Lages for a tracheostomy-related bacterial infection

In August, the judge had determined that the state and the municipality had to pay the doses of Spinraza. The remedy should be applied to the four doses of attack and then every four months for maintenance until the end of life.

Each dose of drug imported from the United States costs $ 300,000. With the decision taken in August, the delay was one month for the start of treatment. The family never received the drugs and the boy continued to suffer the degenerative effects of the disease.

A new decision surprised everyone. The juvenile court judge and juvenile, Ricardo Alexandre Fiúza, dismissed the application by judgment of 19 December 2018. This means that the state and the municipality are no longer obliged to pay the drugs. The family can appeal the decision. Cristina de Luz, 28, who accompanies her son in hospitalizations and treatments, reveals that she has learned the existence of this latest decision.

This decision surprises the families

on Tuesday (8). The feeling was powerless, especially since he was accompanying his son in another of the innumerable hospitalizations, which could be avoided if Miguel received doses of Spinraza, she said.

Cristina explains that she is talking with mothers from other cities, facing the same problem, and says that the drug has an effect and improves the quality of life. The family does not know what criteria were used for the determination. Previously, when the first application was denied, the explanation was that there was no scientific evidence to prove the effectiveness of the drug.

The pediatrician Camila Duarte, who accompanies Miguel and prescribes the drug, recommends to every patient with atrophy to consume Spinraza, it does not cure, but it has delayed the symptoms. Next Tuesday (15), the family organizes a demonstration in front of the Forum Nereu Ramos, in Lages, at 15:30, because of the rejection of the sentence.

What is AME

Spinal muscular atrophy? (AME) is a neurodegenerative disease with autosomal recessive inheritance, that is, both parents, father and mother, must possess the disease gene and the embryo inherit the same gene from each. Characterized by weakness and progressive muscular atrophy, SMA impairs simple voluntary movements such as holding the head, sitting and walking.