Photo by Mykenzie Johnson on Unsplash. Used under an Unsplash license.

Editor's note: November 14th is the International Diabetes Day.  I have a daughter who has type one diabetes; it is an autoimmune condition that develops mostly in children and young adults and has almost no genetic explanation. My daughter was nine when she was diagnosed, and our lives were for a long time divided between before and after. But we live in Europe, where people living with diabetes receive a lot of free medical care from the state.

The following story, which was published in Russian by Holod Media and translated by Global Voices, is about a young woman who lives in Russia, where the state is providing practically no help — especially in the smaller, more rural towns. Global Voices is republishing the article, edited for length and clarity, as part of a content sharing agreement with Holod. 

In 2023, Russian authorities announced that they would intensify their fight against diabetes and allocated additional funds for this from the national budget. But in reality, many people outside the capital, Moscow, who are forced to spend money on managing their disease for life, are barely making ends meet. Alena, 23, is from Yelets and lives on the standard salary for her city, RUB 25,000 a month (USD 250). To make ends meet, she skimps on essential medical supplies, risking a diabetic coma. The free provisions given to diabetics by the state are insufficient. Here is Alena's story, told in her own words, about how she navigates life with diabetes in Russia.

Alena's story

Sometimes, I have the same nightmare: my last insulin pen breaks, and all the hospitals are closed. I have these anxious thoughts: what if my blood sugar drops and I don’t have test strips or insulin? I sit and think: what if I can’t work? If I don’t have any money, what will I do? What will I eat? How will I buy insulin?

I see ads saying, “Diabetes is no longer a disease! It’s a lifestyle.” My grandmother even called me, saying she’d read that diabetes is manageable with a healthy diet and insulin. I didn’t want to upset her, so I agreed, but I felt a burning indignation. People often say it’s easy to live with diabetes in Russia because everything’s supposedly “available.” They don’t want to believe that our prosperous state can’t provide basic medications for those with chronic illnesses.

When I was diagnosed with diabetes, I was 15. It’s been eight years now that I’ve been injecting myself with needles several times a day. Four or five times a day, I inject insulin into my stomach with a special pen. I also constantly prick my fingers with a lancet to get a drop of blood for a test strip to measure my blood sugar.

From an early age, doctors at the clinic taught me that although the needles for the syringe and for the test strips are single-use, you should reuse them several times to save money. I still do that now: I use the same needle for several days. The needles get dull and start to struggle to pierce the skin. My fingertips get hard and crusted over. My stomach develops lumps that prevent insulin from absorbing properly. The effect of the hormone makes many diabetics develop a protruding belly — I have one too, even though I’m generally thin. It didn’t happen because of the insulin itself but rather from the lumps that develop from the injections. I’ve accepted it — though I know many diabetics try to get rid of it with massages and creams — but I just try to choose clothes that don’t cling to my stomach.

Changing the needle with each injection is too expensive, both for me and for most people with low salaries. A pack of 100 pen needles costs RUB 1,500 (USD 15). A pack of 25 lancets for a glucometer costs RUB 350 (USD 3.5). And 150 test strips cost RUB 2,300 (USD 23).

Doctors recommend measuring blood sugar upon waking and before bed, before every meal, and two hours after eating. If you feel unwell from low blood sugar, you should measure it, then measure again after taking insulin or eating something sweet to see if the levels have balanced. Even if you don’t follow this fully, to live a normal life, you need to measure your blood sugar five to seven times a day.

This is necessary for stable blood sugar levels throughout the day — every day — for life. We eat different foods like ordinary people. We get sick, we experience stress that causes sugar spikes. So, it’s important to measure it often to understand what’s happening in our bodies, how the diabetes is progressing, and whether complications are imminent. The complications can be severe: damage to the eyes, kidneys, nerves, and joints, diabetic ulcers on the limbs, and more.

But I don’t have enough income to buy as many strips as I need to live normally. I buy as many as I need to survive.

Because of this, I often rely not on glucose readings but on how I feel, though even after years with diabetes, it’s hard to recognize when my blood sugar is dropping until it’s at a critical level. I feel okay, but then check and see my level is at two — almost pre-coma. I’ve had such episodes, and they take a long time to recover from. If you don’t measure your blood sugar regularly, like me, you risk death.

Though I try to control my diet, blood sugar, and exercise, I still have complications from diabetes. My leg nerves don’t work well, which I think is partly due to the lack of state support for diabetics. It’s so tiring to decide each time if I can use a test strip to check my sugar or if I need to save it for later.

Technically, needles for syringes, lancets, and test strips are supposed to be free. But I’ve never received needles or lancets from my clinic; only one pack of 50 test strips per month, enough to check my blood sugar once a day. The strips from the clinic are low-quality, so I switched to a European glucometer that I bought myself — my life is worth it. I keep thinking: now I’ll start earning more, and I’ll finally measure my sugar regularly!

I’m studying for a master’s in law and working freelance as a tutor. My income is inconsistent: in good months, I earn RUB 25,000 rubles (USD 250), the average for my region, where legal assistants make around the same and baristas even less. I’m from central Russia and incomes are a bit higher here than in more rural villages. There, salaries are as low as USD 12,000 rubles a month (USD 120). And there are diabetics there too.

In 2022, the Russian state changed its free insulin offerings, so I had to buy insulin on my own. I had been getting NovoRapid for years and was used to it, as each insulin acts differently. They switched to Fiasp, which worked well, but then they replaced it with a Russian insulin brand. I read reviews about it — people said it caused issues like numbness or had no effect at all, so I bought foreign insulin, spending RUB 4,000 a month (USD 40). Including needles and strips, my medical expenses totaled RUB 7,000 monthly (USD 70), about 28 percent of my monthly salary. In March 2024, Russia cut state purchases of Fiasp by 95 percent, and once the current supply runs out, the government will likely only provide the Russian equivalent to all diabetics.

The difference between big cities like Moscow and regions like mine in terms of state support for diabetics is huge. I see on social media that diabetics in cities can get imported test strips for free, while I buy them myself because my clinic doesn’t provide them. My parents even offered to get me registered in Moscow for better treatment, but why should I have to move to get quality care?

The constant expenses push many diabetics to move to big cities or work overtime just to afford the necessary treatments. For me, a luxury would be an insulin pump that delivers insulin automatically or a continuous glucose monitor that constantly measures blood sugar levels. These devices are expensive and not provided for free to adults with diabetes in Russia.

A good glucose monitor costs RUB 4,000 (USD 40), and in a month, it costs 8,000 (USD 80) rubles to maintain. A quality insulin pump costs around RUB 300,000 (USD 3,000), plus ongoing maintenance. I want a high standard of living and plan to have a child, which means I’ll need continuous glucose monitoring for nine months, costing about RUB 100,000 (USD 10,000). I’ll need to save up.

I don’t want to be dependent on anyone. When I tell my mom how poorly the state provides for diabetics, she says, “Your dad and I will help if needed.” But I tell her, “You won’t be able to help me my whole life.” I want the state to provide me with basic comfort.

My boyfriend, who works as a lawyer, recently offered to buy me that glucose monitor, but I said no; I don’t want to get used to nice things because it’ll be harder to give them up later. For me, it’s not about earning a lot or advancing in a career; jobs can be lost. What’s more important is achieving changes in government policy. That’s why I’m taking time to speak to a journalist, hoping it will draw attention to the issue.