Head of Russian Human Rights Council calls to faster put SMA cure on essential drugs list
MOSCOW, October 7 (RAPSI) – Chair of Russia’s Human Rights Council Valery Fadeyev has asked the Russian Government to faster include Spinraza medication on the list of vital and essential drugs, a statement on the advisory body’s website reads.
Accoring to the human rights advocates, adding Spinraza to this list is the best decision ensuring the safety of children’s life.
In August, the Health Ministry recommended that Spinraza, the trade name for Nusinersen medication, is to be put on this list next year.
Russian Children’s Rights Commissioner Anna Kuznetsova stated that it is to become an important step in treatment of children suffering from spinal muscular atrophy (SMA). She noted that this is positive news both for families where children suffer from SMA, and regional authorities currently financing procurement of expensive drugs for such children.
The Children Ombudsman Office press service informed earlier that although by now official SMA statistics in Russia had not been collected in full, charity SMA Families reported about 900 SMA patients in need of treatment at the total cost of 42.6 billion rubles (about $570 million at the current exchange rate). The Office, in turn, reported dozens applications a year from parents of children suffering from SMA claiming they could not get Spinraza. This year, there were registered 58 such applications.
The Health Ministry’s recommendation to put Spinraza on the list, Kuznetsova noted, constituted an important stage of cooperation of her Office with relevant authorities, which is to result in a substantial reduction of the cost of the drug; the Spinraza manufacturer has already decided to fix the exchange rate at the average level for year 2019, what makes standard Spinraza package almost 500,000 rubles (about $6,800) cheaper; in total, the medication is to be procured at a price 25% below the current average price.