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[SITUATION] · [QUIET] · [HEALTH]

2 clusters · 8 sources · 20 days · First seen about 1 month ago · Last updated 18 days ago

Spinal Muscular Atrophy treatment challenges in Brazil

Overview

In Brazil, challenges regarding the treatment of Spinal Muscular Atrophy (SMA) have emerged, involving both logistical delays and the high costs of gene therapy. While the public health system (SUS) offers the Zolgensma gene therapy free of charge to eligible infants, the medication's high cost has prompted local community fundraising efforts for individual patients facing strict treatment deadlines.

Broader systemic issues persist as health experts warn that delays in diagnosis and treatment are leading to irreversible motor function loss. Data indicates that while SMA Type 1 is diagnosed on average at five months of age, patients face an average wait time of 1.7 years for treatment, significantly longer than in other countries. These delays are attributed to bottlenecks in the implementation of Law No. 14.154/2021, which was intended to expand neonatal screening programs.

Entities

Sistema Único de Saúde · Instituto Nacional da Atrofia Muscular Espinhal · Ministério da Saúde

Timeline

18 days ago

[HEALTH] 8 sources
SMA diagnosis delays in Brazil cause irreversible motor loss
Delays in diagnosing Spinal Muscular Atrophy (SMA) in Brazil are causing irreversible motor loss, as the implementation of expanded neonatal screening via the SUS remains slow across most states.
about 1 month ago

[HEALTH] 2 sources
Zolgensma gene therapy provides lifesaving option for Brazilian SMA patients
Zolgensma, a costly gene‑therapy for SMA, is free for infants in Brazil’s SUS but still requires fundraising for a boy in Rio Grande do Sul who must receive it before age two.

Sources

capitalnews.com.br · imprensapublica.com.br · leianoticias.com.br · metropoles.com · ocafezinho.com · portal.comunique-se.com.br · revistaepoca.globo.com · tribunadaserra.com.br