The family of Murilo Gabriel Costa Nascimento, 4, from Sumaré (118 km from São Paulo), went to court asking the federal government to buy the drug Elevidys, from Sarepta Therapeutics. The therapy — indicated for the treatment of patients with Duchenne muscular dystrophy , which causes progressive muscle weakness — costs more than R$15 million and is not sold in Brazil.

In the first instance, the Court ruled in favor of the Union . The family appealed and won. On Thursday (20), the family’s lawyer, Letícia Novo, told the reporter that the government appealed. When the decision becomes final, the lawyer also intends to petition the Court for Amil Assistência Médica Internacional SA to pay for the procedure.

Applied in a single dose, Elevidys was approved in 2023 in the United States by the FDA (American Food and Drug Administration) for patients aged 4 and 5 years. Authorization was granted based on phase 1 and 2 clinical trials, which indicated an increase in microdystrophin protein in children in this age group undergoing therapy.

The pharmaceutical company Roche Farma Brasil submitted the registration request to Anvisa (National Health Surveillance Agency) in October 2023.

Source: Folha de S.Paulo.