Zolgensma: World’s most expensive drug will be covered by health plans

Zolgensma: Medicamento mais caro do mundo vai ser coberto pelos planos de saúde

Zolgensma – Last Monday (6), the National Health Agency approved the incorporation of the medicine Onasemnogeno Abeparvoveque, in the list of mandatory coverage of health plans. The medicine, popularly called Zolgensma (Novartis), is used in the treatment of patients with AME (Spinal Muscular Atrophy) type I, with up to six months of age.

Zolgensma (Photo: Reproduction/Trinuna do Paraná)


The condition required by the ANS is that only children who are not on invasive mechanical ventilation for more than 16 hours a day can receive the treatment. The forecast is that the therapy will be included in the List of Supplementary Health Procedures, within 60 days.

The director of Norms and Qualification of Operators of the ANS, Jorge Antônio Aquino Lopes, said during the meeting about the inclusion in the list of medicines, that “It is extremely important in the therapeutic arsenal to have these new technologies, especially with regard to pediatrics”.

The news that Zolgensma will be provided by health plans was well received by civil society organizations representing SMA patients.

For the physiotherapist and vice president of the Brazilian Association of Carriers of Hunter’s Disease and Other Rare Diseases, Fernanda Batista, the decision will avoid new lawsuits in court for access to medication.

“Until today, children who have health insurance needed legal action, because the drug is considered the most expensive in the world. It costs around R$ 12 million” highlighted.

Still according to her, across the country, 194 children have already won the right to receive a single dose of medication through the courts and the inclusion of the medication will save patients precious time.

“We waste time using the medication, which must be administered up to two years of the child’s life. (With the decision), we shorten this access, since it is regulated via the health plan.” stated.

Zolgensma is the first treatment, with a single intravenous application, with advanced resources that is positively recommended by Conitec (National Commission for the Incorporation of Technologies in the Unified Health System).

In December of last year, the inclusion of the medicine in the Unified Health System (SUS) treatments for children up to six months old was approved. The drug must be made available in the public network within 180 days.

Featured photo: Zolgensma. Playback/Bruno Pecanha

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