The Jair Bolsonaro government will release the maximum sale price of Zolgensma, a drug used in children with spinal muscular atrophy (SMA) – a compound considered the most expensive treatment in the world.
There is still no definition of prices or when this increase will be carried out, but a minute of the meeting of ministers of the Council of the Chamber of Regulation of the Medicines Market (CMAD), held on January 2 and obtained by Folha de SP, points out that the value may increase from R$ 2.9 million to R$ 6.5 million.
The Ministers of Justice (Anderson Torres), Economy (Paulo Guedes) and Health (Marcelo Queiroga) are part of the CMED council.
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The product does not exist in Brazil, nor is it on the list of medicines available in the SUS, meaning that families who need treatment have access only through judicial measures.
SMA is a rare disease that causes weakness, hypotonia, atrophy and progressive muscle paralysis, which can lead to death. This happens due to a change in the gene responsible for encoding the protein needed for muscle development.
The Ministry of Health states that it has already paid for 75 deliveries of zolgensma, a total of R$ 715.7 million spent. Now, with the change in the price ceiling, the government hopes to negotiate an incorporation of the drug into the SUS, making its importation cheaper.
The change also brings the ceiling closer to the market value that Novartis, the company that makes the drug, charges in the market. Even so, the price stipulated by the Brazilian government is far from the R$9.7 million requested by the company.
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