‘Children shouldn’t pay the price for political games’ Russia switched children with cystic fibrosis to a drug never tested on humans. Parents say it’s making them sicker — and Putin’s friends richer.
In January, Russia forcibly switched children with cystic fibrosis from a proven U.S.-made drug to a “new” treatment that’s never been tested on humans — one that’s supplied by a company with ties to friends of President Vladimir Putin. The reported effects were both immediate and catastrophic: parents say children prescribed the drug are deteriorating even faster than when the disease is left untreated. But doctors are reportedly refusing to document the side effects due to “orders from above.” The independent outlet Okno spoke with parents of cystic fibrosis patients in Russia to understand the impact of the switch — and found that officials are now threatening families for refusing the untested medication. Meduza shares an abridged translation of their report.
Earlier this year, Russia’s Health Ministry forcibly switched children with cystic fibrosis from Trikafta — a clinically tested medication made in the U.S. — to Trilexa, an Argentinian “analogue.” Patients across Russia all described the same severe adverse reactions to the drug in conversations with Okno. Just three or four days after starting Trilexa, children began experiencing elevated blood pressure, rapid heart rate, chest and stomach pain, persistent coughing, decreased lung function, pharyngitis and other inflammatory conditions, along with spikes in blood sugar.
“For the first time in six years of singing […] my son Bogdan couldn’t participate in an international vocal competition,” said Natalya Savchenkova from Buryatia. “He was scheduled to perform three pieces, but after switching to Trilexa, his condition deteriorated so badly he can’t even go to school anymore. For 35 days, we tried to ‘convince’ his body that Trilexa is the same as Trikafta — but it’s not!”
A federal medical board had approved Trikafta for Bogdan back in June 2022. His mother says the drug worked wonders. “Before Trikafta, his condition was classified as very severe,” she said. “But once he started Trikafta, everything changed for the better. Over two and a half years on the drug, he didn’t even cough. He never had pharyngitis. He started first grade in 2022 and didn’t get sick once.”
Trikafta is internationally recognized as a breakthrough treatment. A 2023 study showed that early use of Trikafta could more than double the average life expectancy of cystic fibrosis patients to 82.5 years. And while Russian officials have labeled Trilexa an equivalent to the American-made treatment, it’s never undergone clinical trials in humans.
The Savchenkov family — and many others with children suffering from cystic fibrosis — learned after the fact that a company called Irwin (the Russian distributor for Trilexa) had won the government tender to supply the medication their children rely on. As it turns out, the state-run Circle of Kindness Foundation — a Putin initiative that oversees all government procurement of expensive, life-saving medications for children in Russia — had simply refused to purchase Trikafta and allocated 11.2 billion rubles (about $134 million) to purchase Trilexa instead.
“We were never given any official explanation,” said Savchenkova. “No one asked for our consent [to switch medications] — we didn’t sign a thing. They just handed us the Trilexa and said, ‘Take this. There’s no Trikafta.’”
‘Experimenting on children’
Doctors across Russia began replacing the proven treatment with the untested one at the end of 2024, doing so without parental consent — even for underage patients. Later, it came to light that physicians who had previously documented marked improvements in children’s conditions while on Trikafta had quietly revised those medical records. Instead of listing the drug by its brand name, they switched to noting only its active ingredients — allowing officials to purchase untested “analogues” like Trilexa.
In response, parents organized protests, accusing the Russian government of “experimenting on children” to benefit a politically connected supplier. They say that profits from Trilexa sales are going to individuals with close ties to President Vladimir Putin. Those interviewed pointed to one name in particular: Gennady Dyumin, the father of longtime Putin ally and presidential aide Alexey Dyumin.
As Meduza has previously reported, Gennady Dyumin sits on the board of directors at Pharmeco, Irwin’s parent company. “Irwin was founded in 2018 near Moscow and has since secured around 14,000 government contracts worth more than 119 billion rubles [$1.4 billion],” a pharmaceutical industry expert told Okno. “Now you see where the lobbying power comes from.”
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“Trilexa didn’t go through clinical trials at all,” said Lyudmila Galkina, the mother of 10-year-old Masha from the Kirov region. “Of course we protested — but when the doctors told us there was no alternative, we had no choice. But four days in, my daughter’s pulse shot up from 70 to 125, sometimes 129. That’s tachycardia! Her blood pressure started swinging between 133/76 and 101/70. She began having problems with her central nervous system — hallucinations and insomnia. Along with chest pain and a persistent cough. Then, after catching a virus, she developed bronchitis. Her weight plummeted.”
Doctors refused to record any of these side effects in Masha’s chart, Galkina said, insisting the symptoms were “not significant.” Other mothers from the Novosibirsk, Ulyanovsk, Vologda, and Buryatia regions confirmed that pediatric specialists in their regions also refused to document adverse reactions to Trilexa. “I’ve already filed a complaint with the prosecutor’s office about the refusal to convene a medical board and document the side effects,” one mother said. “They even denied us a second medical review. I’ll probably have to take this to court.”
‘Children should be above politics’
Sources told Okno that in the Ulyanovsk region, doctors are refusing to formally document Trilexa’s side effects, but have quietly begun reducing doses of the drug, promising to eventually discontinue it entirely. In other regions, however, parents have been forced to make this decision on their own.
“Of course I panicked and stopped giving it to her,” said Lyudmila. “Do you think a pulse of 130 is normal for a 10-year-old? And blood pressure near 130, when her usual is more like 110? And a whole week without sleep? Then they started threatening me with child protective services — saying they’d take my daughter away. But they still refuse to supply the drug that gave her back a normal life two years ago. ‘All the money’s been spent on the Argentinian version,’ they say.”
Parents of a boy with cystic fibrosis in the Vologda region made a similar decision. “After we stopped the drug, some of the symptoms eased — he gained a bit of weight, his appetite returned, and his blood sugar levels stabilized,” said his mother, Natalya Savina.
Other parents say doctors have pressured them into restarting the medication — threatening to involve Child Protective Services and have the children removed from their homes if they refused.
“I eventually gave in, even though what the doctors demanded was illegal,” said Savina. “But once he started taking it again, his condition worsened — more weight loss, a drop in lung function, digestive problems, rising blood sugar, and fatigue. I submitted a request to have the side effects officially recorded, but today that request was denied.”
Recurring lung infections, pancreatic damage leading to pancreatitis and diabetes, vulnerability to infection, and insufficient weight gain are all typical symptoms of cystic fibrosis when not treated with targeted therapies.
“Trilexa has brought all those risks back with a vengeance — it’s not just ineffective, it’s making things worse,” said one mother, who asked not to be named for safety reasons. “In just one month, my child lost two kilograms (4.5 pounds). He only weighed 37 (81.5 pounds) to begin with. Why should my child have to die just because a bunch of men saw a chance to get rich?”
Some parents believe the issue isn’t just about money — but about politics. Katerina Sinebryukova, a mother from Krasnodar Krai, said her child’s doctors refuse to take responsibility for the drug’s ill effects. “They always dodge it,” she told Okno.
“There’s real danger here, and I believe the main reason they’re pushing it, despite that danger, is political,” Sinebryukova continued. “We all hear about how children should be above politics. But in practice, we see the opposite. This isn’t even import substitution, if this comes from Argentina. They’re just willing to buy anything for our kids as long as it’s not from the United States.”
Like many parents, Sinebryukova continues to protest and refuses to give her daughter the untested medication. But she says public demonstrations have become rarer. Many parents, she believes, have been silenced.
“The juvenile division of the police comes around and says, ‘We’ll report you to child welfare. We’ll take your children because you’re unfit parents.’ Just because we refuse to poison our kids,” another mother told Okno. “Then the politicians start threatening us with being labeled ‘foreign agents.’ Parents of sick children!”
Yan Vlasov, head of the Public Council for the Protection of Patients’ Rights under Russia’s federal healthcare watchdog, has reportedly openly told parents that they could lose custody of their children and be declared “foreign agents” if they continue to resist Trilexa.
“Children shouldn’t have to pay the price for political games,” Sinebryukova said. “These powerful men can do what they want on their geopolitical playgrounds — but our children are innocent.”
Cover image: Cavallini James / BSIP / Universal Images Group / Getty Images