Brasília – Participants in a public hearing held today by the Senate’s Human Rights Committee (CDH) advocated for the free provision of nusinersena for patients with type-3 spinal muscular atrophy (SMA). Currently, the Unified Health System (SUS) provides the drug free of charge only for the more severe SMA types 1 and 2.

The committee noted that the National Commission for the Incorporation of Technologies into the SUS (Conitec) is reviewing the possibility, although no Conitec representative attended the hearing—drawing criticism from Senator Flávio Arns (PSB-PR), who led the debate.

During the hearing, patient representative Vanessa Nicolao highlighted that Conitec had previously dismissed scientific evidence supporting nusinersena’s efficacy in type-3 cases, citing cost concerns of up to R$9 billion over five years. Neurologist Felipe Franco da Graça cited five years of data confirming the drug’s effectiveness in preventing further motor decline.

The Ministry of Health’s Coordinator of Rare Diseases, Natan Monsores, stressed the need for rigorous assessment processes and pledged to open dialogue between patients and Conitec while enhancing clinical support through SUS.

Two patient testimonials underscored the urgency: one patient reported temporary judicial access to nusinersena, which improved her mobility and reduced tremors—though access was later halted following STF rulings. Another shared the daily challenges of living with progressive limitations, expressing that the decision to deny the drug disregarded their lived realities.

Source: Agência Senado

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