Brasília – Brazil’s House of Representatives held a solemn session this Wednesday (10) to mark Spinal Muscular Atrophy (SMA) awareness month.

Congresswoman Flávia Morais (PDT-GO) emphasized the importance of keeping the subject visible throughout the year, noting that SMA is a rare, degenerative, and progressive genetic disease affecting 1 in 10,000 newborns and one of the main genetic causes of infant mortality. She recognized advances such as the inclusion of nusinersen in SUS but advocated for type 3 patients to be included in treatment protocols, the expansion of neonatal screening, and the creation of a multiprofessional support network.

Congresswoman Fernanda Pessoa (União-CE) stressed the importance of women’s presence in politics, especially on sensitive issues like rare diseases. She underscored the urgency of public policies for SMA focused on early diagnosis, treatment access, and dignity for patients and their families. She also mentioned a meeting with the Health Minister about expanding neonatal screening and called for more concrete government actions.

Congressman Dr. Fernando Máximo (União-RO) highlighted the need for more attention to SMA patients, defending greater investment in diagnosis, treatment, research, and follow-up. As a physician, he reinforced the importance of empathy, respect, and dignity in patient care.

Natan Monsores, general coordinator for rare diseases at the Ministry of Health, reaffirmed the government’s commitment to improving care for SMA patients. He explained that the Ministry is strengthening the neonatal screening program, now under the rare diseases coordination, and working on its expansion despite high technological costs. He noted that Brazil is one of the few countries to provide all three main SMA therapies through SUS, including gene therapy, and stressed the importance of listening to specialists, industry, and especially families in shaping policies.

Other speakers included Dr. Thaís Bomfim Teixeira, geneticist from APAE Anápolis, who defended early diagnosis and highlighted successful cases with neonatal treatment; Ana Paula, founder of Instituto Proclame, who criticized the exclusion of type 3 patients from SUS coverage; Diovana Loriato, president of INAMI, who criticized Conitec’s delays; and Dhiogo Bento, from the Goiânia Rare Diseases Association, who praised scientific advances but demanded immediate implementation of expanded screening, reference centers, and equal access.

Source: Câmara dos Deputados

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