OBJECTIVES : Spinal Muscular Atrophy (SMA) is a rare genetic disease involving the loss of nerve cells called motor neurons in the spinal cord. To date, pharmacological treatments are scarce. Studies have presented genetic modifications as a major therapeutic target. Nusinersen is one of the therapeutic alternatives that emerged recently. This study aims to describe the registered purchase profile of nusinersen in the Brazilian Databank of Healthcare Prices (from Portuguese, Banco de Preços em Saúde, BPS).

METHODS : A research was conducted in the BPS, using, as research filters, period (Jan/01/2017 to Jan/07/2020) and item (“nusinersena, concentração:2,4 mg/ml, forma farmacêutica: solução injetável”). Acquisition type, date and modality, municipalities, state, quantity, price and weighted average were defined as study variables. Descriptive analyses were performed to evaluate these data. Federal Government purchase were not evaluated. Costs are expressed in 2019 Brazilian Real (BRL).

RESULTS : Ten nusinersen purchases were registered in BPS from October/2018 to September/2019, all from São Paulo Health State Secretary (municipalities: Bauru [N=2] and São Paulo [N=8]). Total volume purchased was 158 vials of nusinersen, which accounted for a 44.9 million BRL (weighted average price: 298,863.77 BRL). All registered acquisitions occurred by judicial demand. Six purchases were performed through bidding waiver, while four were through tendering process.

CONCLUSIONS : All registered nusinersen purchases in BPS were from judicial demand in the state of São Paulo. These results might indicate that states and municipalities could still suffer from nusinersen judicial demand, even after the product incorporation by Brazilian Unified Health System in April/2019.