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Russia’s Children Ombudsman backs SMA cure to be put on essential drugs list

14:16 04/08/2020

MOSCOW, August 4 (RAPSI) – The Russian Children’s Rights Commissioner Anna Kuznetsova believes that the adding of Spinraza medication to the Governmental list of vital and essential drugs is to become an important step in treatment of children suffering from spinal muscular atrophy (SMA).

The Health Ministry has earlier recommended that Spinraza, the trade name for Nusinersen medication, is to be put on this list next year.

Kuznetsova notes that this is a 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 informs that although by now official SMA statistics in Russia have not been collected in full, charity SMA Families reports 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, reports dozens applications a year from parents of children suffering from SMA claiming they could not get Spinraza. This year, there have been registered 58 such applications already, the statement reads.

The Health Ministry’s recommendation to put Spinraza on the list, Kuznetsova notes, constitutes 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.

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Russia’s Children Ombudsman backs SMA cure to be put on essential drugs list

14:16 04/08/2020 The Russian Children’s Rights Commissioner Anna Kuznetsova believes that the adding of Spinraza medication to the Governmental list of vital and essential drugs is to become an important step in treatment of children suffering from spinal muscular atrophy (SMA).
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