How much is life: a child from Ukraine received an injection of the world's most expensive drug in the USA

A little Odessa citizen Dmitry Svichinsky, money for whose treatment was collected all over Ukraine, on July 16 received an injection of Zolgensma. This is the most expensive drug in the world, its cost is more than $ 2 million. with the BBC.

Photo: Shutterstock

The boy was diagnosed with spinal muscular atrophy (SMA), a rare genetic disease that can be stopped with immediate use of one injection of Zolgensma. The drug is considered the most expensive in the world.

“The moment that tens of thousands of caring Ukrainians around the world have been waiting for and striving for has happened - Dima Svichinsky received the coveted injection,” the “Children, we will make it” association, which is driven by the goal of achieving treatment for children with SMA in Ukraine, announced on Facebook.

Dmitry receives an injection and a two-month rehabilitation course after it at the Children's Hospital in San Antonio (USA).

Thanks to the discount, this entire course in the United States costs $ 250 cheaper than if the drug was introduced in Ukraine, volunteers say.

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“We would like to remind the Ministry of Health that there are still dozens of families with SMA patients in our country who need your attention and help. We urge you to act,” the statement said.

$ 2 million in three months

Spinal muscular atrophy is a rare genetic disease in which, due to a lack of protein, muscles fail, the spinal cord is destroyed, and heart and breathing problems can occur.

Children with this disease, especially when it comes to the first type, like Dmitry's, are doomed to death or severe disability.

Dmitry Svichinsky was diagnosed with the disease in March this year and his parents announced a fundraiser.

The campaign became famous throughout Ukraine, it was supported by the stars of show business, sports and politics.

The boy's father, Vitaly Svichinsky, said that part of the funds were donated by representatives of big business, but most of the money was raised precisely thanks to transfers of ordinary citizens for relatively small amounts.

Fundraising is closed in May.

What is the drug and why is it so expensive

Zolgensma, manufactured by the American company Novartis Gene Therapies, is the first gene therapy drug for spinal muscular atrophy.

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They worked on its development for about 10 years, and its use in the United States was allowed only in 2019.

The principle of operation of the drug is often described as “repairing” DNA - it ensures the replacement of the missing or defective SMN1 gene, which causes spinal muscular atrophy.

Babies who, like Dima Svichinsky, are born with Type 1 SMA have a life expectancy of 2 years.

Zolgensma does not cure the disease 100%, but is able to stop its progression - after the injection, children can breathe independently, sit, crawl and even walk.

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