For many Russians with “orphan diseases,” as rare illnesses are called, it is a routine practice to ask friends or relatives going abroad to bring them the equally rare medicines unavailable at home.
But soon, bringing back much-needed medication could land good Samaritans in prison for five years.
Furthermore, a severe curb is being considered on foreign-made drugs available in Russian pharmacies — which currently get no less than a third of their supplies from abroad.
Health care is the latest industry to come into the crosshairs of Russian lawmakers, whose already rampant regulative zeal has been exacerbated recently by Western sanctions that have triggered a wave of patriotism-induced protectionism.
The overregulation of medical imports could lead to public unrest and endanger the lives of many seriously ill Russians, charity activists say.
The bills against medication imports are still pending review in the State Duma, and a senior lawmaker pledged to The Moscow Times to see them amended before their approval.
But the situation is still indicative of the authorities’ general neglect of the public’s needs, said Irina Yasina, a prominent economist and disabled people’s rights campaigner.
“Their paradigm is, ‘we ban the good stuff so you just use domestic sh--,’” she said bitterly.
Death by Import Ban?
A bill criminalizing the import of drugs, nutraceuticals or dietary supplements that are not certified in Russia was passed in a first reading in the Duma in the summer.
This covers all orphan drugs, which can never be certified in Russia because the procedure requires extensive human testing here — which is impossible because there are simply not enough patients.
The bill’s remaining two readings are due to take place during the Duma’s fall session, which kicked off last month.
Critics, including Yasina, voiced fears that the import ban could force patients with orphan diseases to either move abroad or, if they cannot afford to do so, die at home without their meds.
The situation is not actually that critical, said Snezhana Mitina, head of the Union of Rare Disease Patients and Patient Organizations, because the state health care watchdog Roszdravnadzor has rules for importing uncertified medication for personal use that would not be affected by the bill.
“No fear-mongering, please. It’s a crystal-clear procedure now: Get an official paper here, another there, five days and you’re clear to import,” Mitina, who is bringing up a child who suffers from an orphan disease, said by phone.
Her stance was backed by a spokesperson for Gift of Life, a large charity that imports medication for people with orphan diseases under Roszdravnadzor guidelines.
But neither could say how many of the estimated 13,000 Russian patients with rare diseases import their medication without paperwork.
National Drug Security
Trade and Industry Minister Denis Manturov said last month that a draft decree to limit medication imports would be filed with the government this month.
He backpedaled recently, saying the ban will be limited to state tenders, leaving private companies free to import drugs. But his original proposal is the latest in a string of calls to curb drug exports, an idea that the government has been toying with for a while.
The idea was previously mentioned by Prime Minister Dmitry Medvedev and several members of the Federation Council, the parliament’s upper chamber.
Medvedev said in May that domestic produce must account for 90 percent of Russian drugstore stocks by 2018.
The move is needed to enhance national security, he said. The Russian government has scrambled to boost domestic industries after the country was hit by Western economic sanctions over Moscow’s alleged backing of the pro-Russian insurgency in eastern Ukraine.
Up to 80 percent of medication in Russia is foreign-made, the Kommersant newspaper reported last month.
Imports account for 30 percent of the produce range in Russia, but those are the most efficient and popular drugs, Sergei Kalashnikov, head of the Duma’s health committee, told The Moscow Times.
“I just don’t believe in such a ban. It would be a death sentence to people with orphan diseases,” said patients’ rights activist Mitina. “They’re just trying to scare the EU.”
She conceded that a ban was more realistic if it excluded orphan medication, but said it would still cause a “social fallout.”
Her comments were echoed by Kalashnikov, who called a drug import ban “the most stupid thing we could possibly do, and a direct threat to the population.”
Pass First, Fix Later
Apparently caving in to public pressure, bill co-author Irina Yarovaya said last week that the draft would be amended to exclude drugs imported for personal use, though it remained unclear whether people who bring in medicine for friends or acquaintances would also fall under the exemption.
Kalashnikov also pledged to have the bill amended to exclude people bringing in orphan medication for non-commercial use — i.e. friends or relatives.
But until that actually happens, promises are unlikely to reassure those for whom the proposals could become a matter of life and death. In recent months, Russian authorities have shown a predilection for fast-tracking criticized proposals, saying any flaws can be identified and removed after the bills and decrees come into effect.
Examples include state registration for popular bloggers, which remains mostly unimplemented, and a restrictive insurance deposit for credit card operators in Russia, which was later quietly lowered.
Even possible harm to the population is not a guaranteed deterrent to legislators, as evidenced by the infamous ban on U.S. adoptions of Russian children in 2012, which saw hundreds of orphans denied new families, even when adoptions were already in progress. In at least one case, a seriously ill child due to be adopted died from a lack of medical treatment that reports said was only available in the U.S.
“They just don’t care about ill people,” Yasina said. “A ban is never the solution. If you want people to buy domestic, just produce better-quality stuff.”