The family of a girl with a lubricant sued the Novosibirsk Ministry of Health due

The Central District Court of Novosibirsk adopted a lawsuit of the girl’s parents with spinal muscle atrophy (SMA) to the Ministry of Health of the region. Officials refused her a vital, spinraz.

The father of five-month Sofia with SMA Vladimir Darbinyan filed a lawsuit against the regional Ministry of Health due to the refusal of the vital medicine of Spinraz. The Central District Court of Novosibirsk accepted it, the case card said. The meeting is scheduled for July 30.

Spinal-muscular atrophy is a genetic disease that affects the motor neurons of the spinal cord. Creeps are most often sick. Over time, such patients stop breathing and swallowing, and to one degree or another, mobility to one degree or another, their limbs cease to bend, the skeleton is deformed.

The Ministry of Darbinese said that the budget for drugs for patients with orphan diseases was approved in December 2019, but they did not receive additional funds in 2020 (a copy of the response is at the disposal of Taiga. Info). In June, the Ministry of Health turned to the regional Ministry of Finance for the allocation of additional funds for medicines.

“Given the adverse prognosis in the economy related to the elimination of the consequences of the spread of coronavirus infection, the allocation of additional funds at the moment is not possible,” the family of officials said.

The ministry noted that it plans to contact the regional Legislative Assembly with a proposal to expand the list of orphan diseases, the financing of which is transferred to the federal level. The Ministry of Health added that in the presence of “spinras” will provide them with Sofia “first of all”.

“From the answer of the local Ministry of Health, only one thing is clear: there is no money, but you hold on,” the girl’s mother Anastasia Darbinese wrote on Instagram. - In which case, you are number one in line. No terms, clarity is zero. These answers cannot arrange us. We are fighting the disease every day. Every day, our daughter loses thousands of motor neurons and weakens. And we decided to look for the truth in a different plane, so we went to court. The case will be considered next week. ”

According to the public procurement website, the state -owned enterprise of the Novosibobblefarm region concluded three contracts totaling 129.9 million rubles for the purchase of Spinraza. Another purchase is listed as canceled.

Taiga.info told the story of Sofia in detail. She does not hold her head, hardly turns over and almost does not move her legs.

Spinraz is the first registered drug for SMA in Russia. According to the mother of the girl Anastasia Darbinyan, his Sofia was recommended by the federal consultation of doctors from the Moscow Nicky of Pediatrics. Veltishchev, the family also has the conclusion of the regional medical commission, a response from the Ministry of Health of the Russian Federation, which states that "the issue of ensuring the medicine is transmitted to the regional Ministry of Health."