This was announced by the boy’s father on his wanderer in VKontakte. Matvey, who was diagnosed with spinal muscular atrophy, received the drug on March 7, after prosecutors and bailiffs intervened. The court decision on the need to use the medicine was made back in 2021.
As the father of the child explained, due to the fact that the court decision had not been executed until that time, the doctors decided to double the dose of the drug – Matvey would receive six injections instead of three.
The story of Matvey from Rubtsovsk
The boy was born with spinal muscular atrophy, a rare disease that caused him to have a defective gene for motor neurons. The child was raised money for the foreign drug “Zolgensma” worth more than 100 million rubles, and this medicine was introduced to him. But the boy’s parents believe that another drug is needed to consolidate the effect, namely the drug approved for the treatment of SMA, Spinraza. He makes the “understudy” of that broken gene work. The annual course of the drug costs about 40 million rubles.
In “Spinraz” the boy was refused, and the courts continue even now, on March 16, the next cassation of the Altai Ministry of Health will be considered. One of the reasons for refusal is the lack of evidence of the effectiveness and safety of such combination therapy.
SMA and its treatment
Spinal muscular atrophy is a rare genetic disorder. With SMA, the motor neurons of the spinal cord are affected – this leads to muscle atrophy and paralysis, the gradual extinction of motor and respiratory functions. According to the SMA Families Foundation, about 200 children with this diagnosis are born in Russia every year.
The introduction of “Zolgensma” allows you to replace the missing or defective gene in a child with its functional copy. An injection with this particular medicine is done only once, at the age of 2 years.
“Lethal outcomes after the administration of the drug are quite rare. This happens if parents do not follow the recommendations of doctors, stop taking tests, control the course of treatment. Children should undergo long-term hormonal therapy after the injection "Zolgensma"”, – Dmitry Vlodavets, head of the Children’s Neuromuscular Center of the NIKI of Pediatrics, told the Secret earlier.