‘Tears of joy, finally’ Russian rapper Morgenshtern helps family raise enough funds for multi-million-dollar SMA treatment
In December 2019, Ilya Khudoba was diagnosed with spinal muscular atrophy (SMA), a disorder that costs millions of dollars to treat. His parents turned to Instagram to raise money for the drug their toddler needed. But it wasn’t until Russian rapper Morgernshtern “blew up” their crowdfunding campaign that the donations started pouring in. Khudoba’s parents were able to announce the happy end of their fundraising efforts on September 14 — three days after Morgenstern released a video in support of Ilya, in which the rapper admitted that he decided to help the family in an attempt to stave off problems with the police.
With the help of Russian rapper Morgenshtern, three-year-old Ilya Khudoba’s family raised enough money to fund his spinal muscular atrophy (SMA) treatment. Khudoba’s mother, Evgeniya Polyan, announced that the family had reached their fundraising goal in an Instagram post. “Our collection is closed! We did it! You did it! My hands are shaking and my thoughts are in a whirl,” she wrote on September 14. “I’m trying to pull myself together, but it seems like my heart is simply bursting. And the tears [are] tears of joy, finally.”
Ilya Khudoba, who lives in the town of Timashevsk in Russia’s southern Krasnodar territory, was diagnosed with spinal muscular atrophy in December 2019. His mother began using Instagram to raise money for his treatment in February 2020. At first, she and her husband were collecting funds to buy the medication Spinraza, but they later decided to go with another drug — Zolgensma, which requires a single injection (unlike Spinraza, which is administered several times a year).
Manufactured by the Swiss multinational pharmaceutical company Novartis, Zolgensma is considered the most expensive medication in the world. A single injection costs around $2.13 million. In total, Ilya Khudoba needed 168 million rubles ($2.3 million) to fund his treatment.
Russian rapper Morgenshtern gave the family’s crowdfunding campaign a boost in late June. In a YouTube video, he urged his fans to donate to Ilya Khudoba’s treatment. Ilya’s parents, who at that point had raised 30 million rubles (about $412,000), said that Morgenshtern “blew up” their fundraiser. In the two days after the rapper posted the video, they received seven million rubles ($96,000) in donations.
On September 11, the rapper posted a 40-minute video in support of Ilya. Morgenshtern said that he started helping the child because his mother is a police major and he wanted to “score some points” with the police; he had been informed that police officers were planning to plant drugs on him. Three days after the video went live, Ilya’s family had received the remaining 50 million rubles ($685,750) they needed to fund his treatment.
The exact number of people in Russia with spinal muscular atrophy is unknown. In late 2020, the registry maintained by the charitable foundation SMA Families included 1,070 patients, 840 of whom are children. However, the foundation estimates that the actual number of SMA patients in Russia is between 3,000 and 5,000 people.
The SMA drug Zolgensma isn’t registered for use in Russia. There are two other registered treatments: Spinraza and Evrysdi. They both cost hundreds of thousands of dollars and, unlike Zolgensma, a single dose isn’t enough. The Russian government is supposed to pay for Spinraza and Evrysdi, but the high cost of the drugs means patients often have difficulty obtaining treatment. Authorities launched criminal cases for negligence following the deaths of three SMA patients in Siberia earlier this year.
The Circle of Kindness Foundation, which Russian President Vladimir Putin established in early 2021 to help children with rare diseases (using revenue from increasing personal income tax for Russia’s high-earners), has purchased Spinraza and Evrysdi for nearly a thousand children in Russia. The foundation also reached an agreement with Novartis on supplying Zolgensma to Russia, noting that the manufacturer made “serious concessions” on the price. So far, Circle of Kindness has approved the purchase of Zolgensma for six children; the foundation plans to purchase dozens of doses of this drug starting in 2022.
Translation by Eilish Hart
Cover photo: MORGENSHTERN / YouTube