The ECHR decided to provide a nine -year -old girl with a diagnosis of spinal muscle atrophy access to treatment

On April 7, the ECHR satisfied another 39 rule (a petition for urgent measures) and decided to provide a nine -year -old girl who was diagnosed with spinal muscle atrophy (SMA), access to treatment corresponding to her condition and execute the decision of the National Court on the immediate provision of Spinraza

Despite the fact that the ECHR has repeatedly satisfied the petitions for urgent measures in the interests of children with the SMA, and the authorities found the opportunity to quickly execute these decisions, not all regions have established the provision of medicine.

A special situation has developed in Tatarstan, where 29 children with SMA expects prescribed treatment at once. After attempts to reach the regional authorities through appeals, in March, parents reached an unlimited picket.

In January 2021, due to an increase in tax for Russians, the income of which exceed five million rubles a year, the Circle of Good Fund was created at the federal level. It is planned that he will be responsible for the drug support of children with rare diseases. Having learned about the planned changes in financing, the authorities of Tatarstan chose not to purchase a medicine at the expense of the regional budget and wait for the work of the fund. Children whose health status worsens every day cannot wait until the regional and federal authorities decide who should pay.

It is expected that the satisfaction of urgent measures by the European court will accelerate the process of providing expensive spinraza to children from Tatarstan.

Congratulations to Olya Kiselev on the next successful petition and the family \\ SMA Family Foundation with a systematic and effective struggle for patients!

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