SUS will offer a new treatment, using the drug Nusinersena (Spinraza), for patients with type 2 spinal muscular atrophy (SMA). Type 1 patients Since November 2019, the Ministry of Health decided to expand its use.

This decision came after a public hearing held in March of this year, when the community heard about the proposal. Given the “large amount of contributions received and disruption by the community,” according to the ministry, a public hearing was held and type 2 treatment was incorporated.

The decision came against a recommendation from the National Committee for Integrating Technologies (Conitec) in February. According to the entity, there was not enough scientific evidence for a favorable recommendation, considering the high investment required to establish for types 2 and 3 treatments. But the public hearing upended the situation, at least for type 2 patients.

AME is a genetic disease that interferes with the body’s ability to produce a protein that is essential for the survival of motor neurons. Without it, nerve cells die and people lose control and muscle strength, and are unable to move, swallow, or even breathe. The condition is degenerative and incurable.

EBF has four subtypes, distinguished according to the age of onset of symptoms. The first type is the most dangerous type of disease. Its incidence is one case for every six to 11 thousand live births.