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.
Read More
- ‘There’s no money. You shouldn’t come here.’ Russian doctors and families are fighting to access the medicine sick children need to survive
- The ventilator problem Russia has way more machines that can keep coronavirus patients breathing than Italy did — but that doesn’t mean the pandemic will be any easier.
- ‘Entire families are brought in as patients’ A photo report from inside the ‘red zone’ of a coronavirus hospital in Tver, where more than 200 patients are being treated
What's SMA?
Spinal muscular atrophy (SMA) is a rare group of neuromuscular disorders, which result in the loss of motor neurons, and cause muscles to gradually weaken and waste.
What's Spinraza?
In the United States, the F.D.A. approved Spinraza as a treatment for spinal muscular atrophy in 2016, but it comes at a very high cost. At the time of its approval the New York Times reported that one dose had a list price of $125,000. Patients require multiple doses per year and the cost of the first year of treatment alone is around $750,000.