Spinal Muscular Atrophy (SMA) is a genetically caused degenerative disease in the neuromuscular system. The motor capacity of the whole body is compromised by the absence of protein, which makes the motor neurons remain in good condition. Motor control, strength, breathing and the simple act of swallowing are compromised. Everything that requires motor coordination is affected.
According to experts, AME remains a progressive risk for life.
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Neuropediatrician Alexandra Prufer says there are treatments and medications available for the condition.
“There are non-drug and drug therapies. They must be started as soon as possible. Early in the disease, to have the best possible effect. The later treatment is started, the less benefit. What happens is the degeneration, the dysfunction of the motor neurons. And over time, the neurons die, and it will be unrecoverable. They are not replaceable by others.”
Medication for AME will be funded by health plans
For the treatment of the disease, as directed by the National Supplementary Health Agency (ANS), it was approved in last Monday, the 6th, the use of the medication Onasemnogeno abeparvoveque, popularly known as Zolgensma (Novartis). It should be offered as remedy mandatory for patients with type I for up to 6 months.
Zolgensma medication is recommended by the National Commission for the Incorporation of Technologies in the Unified System of Health (Conitec), as it acts as the first part of the treatment, that is, there is no need to repeat the dose. According to Prufer, the medicine is inserted into the cell in patients up to 2 years old, causing the body to start manufacturing the protein to generate good motor functioning.
What news is among the best for the treatment of the disease certainly received great approval from the families of patients with SMA and society in general. Physiotherapist Fernanda Batista, from Rio de Janeiro, reported that the decision to make patients free of charge will generate less access to the Judiciary for a social justification:
“Until today, children who have health insurance needed legal action, because the drug is considered the most expensive in the world. It costs around BRL 12 million.”
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