European Court of Human Rights orders Russia to provide life-saving medicine to infant with rare neuromuscular disorder

The European Court of Human Rights (ECHR) has ordered the Russian authorities to provide six-month-old Ada Keshishyants — an infant diagnosed with spinal muscular atrophy (SMA) — with access to the life-saving medication nusinersen (marketed as Spinraza). This was reported to Meduza by the human rights organization “Justice Initiative.” 

The ECHR sent the decision to the Russian Justice Ministry on May 6. The Justice Ministry now has until May 27 to update the ECHR on the infant’s health and to confirm that she has received treatment.

On April 14 a district court in Stavropol confirmed that local doctors had prescribed Keshishyants with the vital medication Spinraza, thereby obligating the local Health Ministry to provide her with this drug. However, the ministry challenged the decision.

The organization Justice Initiative told Meduza that due to a lack of medication, the infant’s condition worsened and on April 27, she was put on a ventilator.

Justice Initiative’s lawyers believe that this decision from the ECHR will help hundreds of Russian who are unable to access the medication Spinraza in their respective regions.