Earlier this month, Brazil’s National Supplementary Health Agency (ANS) included drug Zolgensma on the list of treatments that private health insurance plans must cover. The cost of the medicine, which is a one-time gene therapy used to treat a rare disorder known as spinal muscular atrophy (SMA), is in the millions of dollars. Previously, patients’ families could only get their hands on the medication after going to court.
By October 2021, court decisions had forced Brazil’s Health Ministry to fund the treatment of 46 patients at a total cost of USD 79 million. The average drug cost of USD 1.7 million per patient is more than three times the maximum purchase price set by local drug market regulators.
The lawsuit expenses corresponded to 3.8 percent of the Health Ministry’s entire pharmaceutical expenditures in 2020, and would have been enough to procure 4.3 million Covid vaccine doses. Lawsuits against states and private health insurance plans resulted in additional orders for payment, including for children older than 2 years, for whom the therapy is not recommended in Brazil.
Now, it is up to HMOs to supply Zolgensma to insured patients aged up to six months old, with type-1 SMA, and who are off ventilation for more than 16 hours a day. Patient advocacy group Iname says 49 percent of babies with type-1 SMA fit the criteria.
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