‘This isn’t a panic — it’s a catastrophe’

As Saratov Region runs out of insulin, ‘Meduza’ discovers medicine shortages all over Russia

On May 21, a photograph appeared on the Russian social media site VKontakte in a group called “Typical Saratov.” It depicted a long line in one of the city’s major hospitals: diabetes patients had been waiting for several hours to receive insulin, and the photographer himself said he was forced to go to a private clinic to purchase the lifesaving drug. The photograph’s caption pleaded, “Saratov is tolerating disaster. How many more diabetics will die?” A year earlier, a nonprofit organization that provided aid to people with diabetes closed in Saratov after it was declared a “foreign agent.” Then, local diabetes patients began facing obstacles to insulin access thanks to new Health Ministry regulations. Meduza discovered that not only Saratov but a range of Russian cities are currently “tolerating disaster” when it comes to insulin access.

It was Andrey Konstantinov who posted a photograph of long insulin lines in a Saratov hospital. His common-law wife received a diagnosis of Type 1 diabetes 20 years ago, but her work schedule does not allow her to stand in line to receive the free insulin allotted to her. Andrey, whose schedule is more flexible, picks up the medication instead, but even he doesn’t have enough free time to match the hours it takes to receive insulin in Saratov today.

“They used to give out three needles a month. In the last year, they’ve started giving out one — that’s enough for 10 days. But on May 13, I came in, and there was no insulin. I came back three days later — still no insulin. I came on Monday, May 21, and there was insulin, but the line to get it was enormous. I asked the people waiting who was there for something other than insulin. Two or three people raised their hands. The rest were sitting there waiting for their prescriptions to be filled.”

Commenters replied to Konstantinov’s photograph to highlight their own difficulties receiving insulin. “I bought a single vial for 890 rubles (about $14) because I don’t have the option of waiting in line,” one woman wrote under the username Nas Tya. “That vial will last a week… Can a granny with an 8,000-ruble pension afford to buy a vial for 890 rubles? This isn’t a panic—it’s a catastrophe!”

The day after the photo appeared on VKontakte, the regional government’s Health Ministry sent investigators to the Saratov hospital in question. It then announced that “the line is unrelated to insulin” and called Konstantinov’s photograph “fake.” The government commission claimed that repairs were ongoing in the building and some health care workers were transferred from one of its wings to the other, leading to a patient bottleneck. Yevgeny Primakov, a State Duma deputy for Saratov Region and a member of Russia’s ruling party, wrote on Facebook a couple of days later to call on local residents not to “be led into Navalnyness.” Primakov, the grandson of a former Russian prime minister, explained that “What happened here is that some people in a single corridor got bored during repairs at the doctor’s office, and we’re being told about how those devils didn’t give out insulin.”

That day, Konstantinov was again unable to receive the free insulin allotted to his family, and he was forced to buy the medication in a commercial pharmacy for 887 rubles (almost $14) per dose. Soon afterward, he was contacted by local Health Ministry representatives and the head doctor at the clinic. They explained that the interruptions were caused by supply line problems outside the hospital’s responsibility and offered to “develop a plan to end the deficit” together. Konstantinov said he could not get a clear answer when he asked what exactly they meant.

“I’ve seen what happens to people who write to the prosecutors’ office,” Konstantinov told Meduza. “It’s all long, tedious, and usually pointless. At least half a year goes by between the petition and the result. So I didn’t contact the prosecutors’ office. If the social media post had an effect, that means that’s enough for now.”

There have been interruptions in Saratov’s free insulin supplies since summer 2018. The problem extends to other medications diabetes patients need.

According to a large number of Saratov patients surveyed by Meduza, insulin shortages began in July of 2018 both in the city of Saratov and in Saratov Region.

Darya Ivanova, whose surname was changed at her request, has only been able to find insulin for her 14-year-old son over the phone. The family lives in the city of Marx, and Ivanova’s son has had diabetes since age two. “Puberty is the hardest time for a diabetic,” she explained. “That’s why, in February, the doctors switched us over to Tresiba, a new long-acting insulin. I asked them specially whether it would always be realistic to get ahold of it. They said yes. A few months ago, I realized: there’s no medicine. A week went by, a month, another month. It got to the point where there was only enough insulin left for one day. I’ve been writing everywhere—the Health Ministry, the prosecutors’ office. I got to the regional government, and I asked, where should I take my child — straight to the morgue? And then, after we called [regional Vice Premier for Social Development Valentina] Grechushkina, after we called [Duma deputy] Primakov, then we finally got a pack of Tresiba.”

In May, Ivanova was once again unable to receive Tresiba for free. A single pack of the medication that is meant to last a month costs more than 6,000 rubles (about $92). “Of course, if I start calling again, they’ll solve the problem again,” Ivanova said. “But I think it’s not right. I shouldn’t have to wait at their doorstep once a month to get this medicine — it should just be there in the pharmacy.”

Olga Bogayeva, a 28-year-old who carried Russia’s most severe disability classification, also contacted various institutions multiple times because she could not access other medications for people with diabetes that the local Health Ministry is supposed to buy in the same way it purchases insulin. Bogayeva stopped receiving the medications she needed in January of 2018. Doctors told her that Saratov’s Health Ministry was unable to obtain sufficient quantities of the medications, and she would either have to wait or buy them herself. The young woman’s health declined: her leg had to be amputated, and she developed a kidney disease. In October of 2018, Olga Bogayeva died. A subsequent prosecutorial investigation sparked several criminal cases. That same month, Saratov Oblast Health Minister Vladimir Shuldyakov resigned.

In 2018, an organization that helped patients obtain insulin in Saratov closed down. A student campaign leader for Vladimir Putin prompted authorities to label the group a “foreign agent.”

A year before Olga Bogayeva’s death, in the fall of 2017, local prosecutors began investigating the Saratov Regional Social Organization for Disabled People with Diabetes, one of the region’s oldest nonprofit organizations. The group was founded in 1995. The investigation against it was triggered by a complaint submitted by a second-year medical student named Nikita Smirnov, who also led the local student campaign group for Vladimir Putin. The young man wrote that the nonprofit’s international financing caused him concern. The organization had received more than half a million rubles ($76,800) in sponsorships from the Russian branches of international pharmaceutical companies like Novo Nordisk and Johnson & Johnson from 2014 through 2016.

The “expert” entrusted with writing an evaluation of the nonprofit’s activities was Saratov Legal Academy history professor Ivan Konovalov, who has written several articles on the suppression of liberal “color revolutions.” In his written and oral court testimony, Konovalov spoke of the “subversive character” of the nonprofit’s activities, saying it “creates a foundation for discrediting government agencies” and “gives foreign partners information on so-called unhealthy areas in the region.”

In his own address to the court, attorney Nikolai Dronov suggested that the prosecutorial investigation and the subsequent trial were a form of “revenge” against the organization’s leader, Yekaterina Rogatkina, for the fact that she had publicly criticized government health officials. Rogatkina found work in the diabetes aid organization in the early aughts after her own child was diagnosed with the condition. Together with her colleagues, she ran seminars, conferences, and a summer camp for children. More importantly, though, she put pressure on the local health ministry, which was responsible for purchasing and ensuring the quality of medications, needles, test strips, and other essential treatment materials.

On May 28, 2018, the District Court of Saratov labeled the organization a “foreign agent” and handed it a 300,000-ruble fine (about $4,840 at the time). Yekaterina Rogatkina was individually fined 50,000 rubles (about $800). After prosecutors demanded that the organization be included in Russia’s registry of “foreign agents” in the fall of 2018, the group dissolved. Yekaterina Rogatkina declined to comment to Meduza.

Saratov Region has one of the worst insulin distribution systems in Russia. New Health Ministry requirements have led to insulin deficits in other regions, too.

In July 2018, not long before Olga Bogayeva’s death, Russian Prime Minister Dmitry Medvedev directed 35 million rubles (about $564,500) in additional funding to Saratov Oblast to purchase medications for patients who receive government aid. The funding increase was supposedly “due to an increased number of recipients.” In 2018, a total of 1.8 billion rubles (about $29 million) in local and federal government funding were spent on providing medications to aid recipients in Saratov Region.

Nonetheless, judging by the current availability of insulin, that flood of cash was unable to correct for the shortage of diabetes medications. According to industry experts and pharmaceutical company employees who spoke with Meduza, the insulin crisis in Saratov Region is the result of a badly organized government purchase system on one hand and the inability of local Health Ministry officials to overcome those systemic difficulties on the other.

How the government insulin acquisition system works in Russia

Endocrinologists at local clinics submit requests for their patients’ medications based on a registry that shows how much of which medications an individual doctor’s patients need. The endocrinologists’ requests must include both returning patients and patients who are new or who have recently transferred from one group to another. A list of federal aid recipients (individuals with an official disability status) is created separately, as is a list of regional aid recipients (everybody else). Then, a doctor has to defend the request in front of the head endocrinologist of a hospital, explaining any changes in the amount of insulin required — a patient’s condition may have changed, for example, or new patients may have entered the system. Finally, an expert from the regional Health Ministry collects all the local endocrinologists’ requests and transfers them to their ministry’s medical provisions department. Only then does the regional Health Ministry decide on the volume of its purchases based on the data received and post an auction for filling those purchases on a government purchases website.

“Regions can decide for themselves whether to purchase the annual volume of medications [for patients who receive them for free] all at once or by the quarter. As a rule, regions buy insulin for a whole year, a small number buy enough for half a year at a time, and an even smaller number buy it quarterly. In recent years, for whatever reason, Saratov Region has bought insulin by the quarter,” a source within a company that produces insulin told Meduza.

The Headway Company, which tracks government bidding competitions in the pharmaceutical industry, looked into the Russian insulin sector specifically at Meduza’s request. It found purchasing problems not only in Saratov Region but in the country as a whole. First, the number of bids that are canceled has risen significantly due to insufficient company participation, administrative errors, and other causes. According to the Headway Company’s calculations, a full 15 percent of the insulin purchase auctions declared so far in 2019 have not been completed, as opposed to 8 percent in 2017 and 10.1 percent in 2018. Second, in some regions, the amount of insulin purchased in 2019 was far less than half the average quantity purchased in previous years. Saratov Region is one of those problematic areas.

Insulin purchases in Russian regions, 2016 – present. Regions with an especially low supply relative to demand are highlighted in pink.

Russia’s federal diabetes registry, which is compiled from information submitted on the local and regional levels, indicates that 83,000 people in Saratov Oblast have been diagnosed with diabetes. Of those patients, 4,100 have type 1 diabetes, and the rest have type 2. For the most part, type 1 patients are the ones that require daily insulin shots, but insulin is occasionally prescribed to type 2 patients as well.

The bids Saratov Region has already accepted for 2019 indicate that by the end of the spring, the regional government had purchased 31 percent of the insulin its patients needed for the year as a whole. That figure is far from the worst in the nation: in Tyumen Region, only 6 percent of the estimated annual demand had been purchased, and in the Tyva Republic, barely any insulin was purchased at all. At the same time, it is clear that regions where insulin was left over from 2018 have managed to avoid serious shortages this year. According to Headway’s calculations, the remaining areas currently experiencing severe insulin shortages are Amur, Belgorod, Ryazan, Tyumen, Yaroslavl, and Krasnoyarsk Regions as well as the Komi Republic.

A source in a Russian company that produces insulin told Meduza that Saratov Region has shut down about half of its bids for purchases of genetically engineered human insulins, the most popular group of insulins for medical use.

Saratov’s bureaucrats aren’t the only ones having trouble making bids happen effectively and on time. In 2018, Russia’s federal Health Ministry issued Order No. 1380, which changed reporting requirements for medical purchases and forced officials to spend several months learning how to prepare the documents needed to meet the ministry’sn ew regulations. Then, in early 2019, order No. 871 took effect. The order was meant to decrease the cost of government drug purchases by mandating that auction organizers set the lowest possible starting price, which would decrease even further in the course of the auction. In the next auction, the base price was to be set at the average price offered at the previous auction, after which it would decrease even further.

The most important players in the Russian insulin market are three foreign companies with factories on Russian territory (Novo Nordisk, Sanofi, and Eli Lilly) and three Russian companies (Geofarm, Medsintez, and Pharmstandart). These companies sell their products primarily through the government’s purchasing system. A source in one of the companies complained to Meduza that because of that high level of competition, insulin prices on the Russian market are among the lowest in the world, and the companies feel there is no sense in dumping any more resources into it. Those conditions have led insulin companies to read each regional auction’s conditions carefully and avoid entering ones where base prices have been cut.

“A lot depends on the human dimension here,” the source told Meduza. “There are regional bureaucrats who, even in the conditions the Health Ministry’s orders have created, manage to figure out the rules and set realistic prices on their auctions. They’re not afraid to defend those decisions. And then there are bureaucrats who just don’t care. They set up one senseless auction after another, and their regions suffer from medication shortages, but at the same time, prosecutors don’t hunt them down and accuse them of raising prices in their auctions.”

Alexander Kolokolov, the press secretary for Saratov Region’s Health Ministry, told Meduza that its competitive purchase proceedings have been “completely fine.” “There is insulin in the region. There’s even a small surplus,” Kolokolov said. “The competitions don’t always go flawlessly — there are problems that come up both with the contests and with delivery. All the problems our diabetes patients experience are solved on an individual basis,” he continued, “and they are solved very promptly.”

Anna Mukhina, correspondent for Free News

Translation by Hilah Kohen