Therapy for children with type 1 AME costs up to $ 7 million in the private network
THE Unified health system (Sus) will offer a treatment with zolgensma (Onasassenogen Abeparvoveque) for children with children with Spinal muscle atrophy (AME) Type 1, rare disease that affects body movements and breathing.
According to the Ministry of HealthThe drug, considered one of the most expensive in the world, can be indicated for patients up to 6 months of age who do not have invasive mechanical ventilation more than 16 hours a day.
The forecast was that the therapy was incorporated in 2023, As established in the order of 6 December 2022. But only now, with an agreement between the Ministry and Novartis, will it be available.
The folder and the pharmacist signed last Thursday (20), a performance sharing agreement based on performance. Consequently, the payment of the Ministry will be conditioned on the patient’s result, which will be monitored by a specialized team: the drug is administered in a single dose, in which a virus inserts a functioning copy of the gene affected by the disease in the child’s body.
The agreement provides for the payment of therapy as follows: 40% of the total price at the time of the infusion; 20% after 24 months of infusion, if the patient reaches the neck control; 20% after 36 months of infusion, if the patient reaches the trunk control (sitting for at least 10 seconds without support; and 20% after 48 months of infusion, if the motor earnings are maintained.
The government has not revealed the values. He just said he negotiated the lowest price with Novartis – In the private network, Zolgensma costs up to $ 7 million.
“Brazil becomes part of the six countries to guarantee this drug in the public system. This unpublished agreement will transform the life of these families,” said the Minister of Health, Alexandre Padilha. Among the 2.8 million births lives in the country in 2023, it is estimated that 287 have AME, according to the data of the Brasilian Institute of Geography and Statistics (IBGE).
Starting next week, patients will be able to perform the preparation exams for 28 reference services for AME treatment in Sus. A clinical protocol of therapeutic guidelines, which guides how these patients will be assisted, will be published in the next few days.
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AME is a rare disease that interferes with the ability to produce an essential protein for the survival of motor neurons, responsible for simple gestures of vital volunteers, such as breathing, swallowing and moving.
In the public network, patients with 1 and 2 types are treated with drugs for nusinersen and rediplam. According to the Ministry of Health, in 2024, these drugs had more than 800 requirements issued for treatment.
Source: Terra
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