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.
Holy shit. With refusal to take being punished.