An estimated 300,000 people in Russia live with type 1 diabetes. Dina, a resident of Ulyanovsk who has lived with the diagnosis for nearly thirty years, told OstWest that the illness was accompanied by stigma from childhood, while shrinking state support has made everyday life for patients extremely costly. The piece was first published by OstWest.
Dina says type 1 diabetes is often treated as the patient’s own fault. She recalls that at school, children were warned that the disease might be “contagious,” and one girl was refused admission to the Artek camp after being awarded a trip because of her diagnosis. In adulthood, she says, the prejudice remains.
Type 1 diabetes requires constant control: a mistake with an insulin dose can quickly lead either to a dangerous spike in blood sugar or to loss of consciousness. Dina says she spent years living by alarms, checking her levels at night and again in the morning.
In 2017 she began using an insulin pump, and in 2019 she connected an “artificial pancreas” system: a monitor, pump, and phone linked by Bluetooth, with an algorithm adjusting insulin delivery. She says this finally allowed her to sleep calmly at night.
The situation worsened after February 2022, when logistics problems emerged. In May 2024, Dina says, an ultra-fast insulin left the market, even though it had allowed patients to eat immediately after injection. Now it has to be purchased abroad, for example in Turkey. At the same time, Chinese monitoring systems that entered the market reportedly show major inaccuracies, and, she says, the cost of such an error is a person’s life.
In the spring of 2025, she says, adults stopped receiving monitoring systems even when medical commissions had approved them. Dina challenged this in court: she won in the first instance but lost on appeal. Children under 18 receive disability status, which guarantees supplies, but once they come of age that status is removed, and so is the support, even though pump and monitoring costs alone amount to about 20,000 to 25,000 rubles per month.
“We do not live for diabetes, we live with it. Life itself comes first, and the illness is simply always nearby, but it should not define a person,” Dina says.