This little Russian girl has won a ‘lottery’ to get a free dose of the world’s most expensive drug.
Hairullina Varvara, 2, is suffering from SMA (Spinal Muscular Atrophy) which gradually destroys muscles and nerve fibres in the body.
Varvara’s parents learned about the terrible diagnosis of their long-awaited and beloved daughter in June last year where they were told that there was a treatment that completely stops the disease in its tracks but there was one snag – it costs almost GBP 2 million and was not available on local health insurance.
The problem was made worse when their daughter’s condition continued to worsen, and although the treatment stops the disease, it cannot improve the damage that has already been done.
So it was a race against time for the family from Ufa, the capital and largest city in the Republic of Bashkortostan in Russia.
They raised GBP 100,000 of the money needed through a fundraiser when a miracle happened on 11th January.
That was the day when the parents were told they had won a lottery organised by the Swiss pharmaceutical company Novartis to give the girl a life-saving injection of Zolgensma worth RUB 160 million (GBP 1.6 million).
Zolgensma is a gene therapy medicine that has shown high efficiency in clinical trials and was approved in the United States on 24th May 2019 for use in patients with SMA under the age of 2.
Novartis provides about 100 doses of medicine per year for free. Once every two weeks, an independent committee draws lots among the submitted applications.
According to the news site Komsomolskaya Pravda, Varvara’s parents posted the good news on social media, saying: “Friends, we are delighted to announce this! Varvara won a lottery to get Zolgensma from Novartis. A neurologist called us and told us the good news!”
The youngster won the life-saving injection a month before turning two years old, which is the upper limit of age for when the drug should be administered.
Meanwhile, Varvara’s parents have agreed to transfer the money they have collected to other children in need of treatment.
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Story By: Feza Uzay, Sub-Editor: Marija Stojkoska, Agency: Newsflash
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