“Battle.” “Soldiers.” “Victory.” When members of the Ukrainian Diabetes Federation (UDF) talk about living with diabetes, they use the language of war.
If it’s a war, Valentina Ocheretenko is on the front lines. A theoretical physicist, she devoted 45 years to caring for a daughter with diabetes and founded UDF during Soviet leader Mikhail Gorbachev’s perestroika reforms. It was a pioneering non-governmental organization as the country moved towards independence.
And as literal bombs fall on Ukraine, Ocheretenko is raising up an army of staff and volunteers to continue the battle against diabetes – with the help of a $150,000 grant from Direct Relief. These activists are doing everything from distributing glucose monitoring equipment to affected areas of Ukraine, to focusing on education efforts and galvanizing people with diabetes, to advocating for a new treatment center and other essential services. The goal is to see as many people as possible through the war – and to continue their work after it ceases.
The 2021 Diabetes Atlas of the International Diabetes Federation (IDF), the organization that linked Direct Relief to the UDF, counted 2.3 million people with diabetes in Ukraine, 230,000 of whom are dependent on insulin. The Russian invasion has displaced many of them across the country, trapped them in Russian-occupied territory, or sent them abroad as refugees. All of this makes caring for people with diabetes – and distributing the medical supplies that keep them alive – even more complicated.
“A beast even more frightening than diabetes”
Children with diabetes “have a lifelong diagnosis that they will not be able to handle without a battle,” said Galina Michno, who recently started a UDF branch in Kharkiv, Ukraine’s second-largest city. Kharkiv has been under bombardment from the outset of the invasion, and Michno is coordinating medical care and aid for people of all ages confronting diabetes in dire circumstances. “Now we have a beast even more frightening than diabetes. That is war,” she said.
One of Ocheretenko’s longtime associates, Svetlana Galayeva, recalled that education and rehabilitation were priorities before the war for children living in Odesa, a Ukrainian port city famous for its joie de vivre – and now one of Russia’s main strategic targets.
Galayeva was drawn to the movement when her son, now an adult, developed Type 1 diabetes at the age of six. She recalls special education sessions for children with diabetes from Ukraine, Kazakhstan and Belarus at Artek, a famous Soviet-era summer camp in Crimea that was run by Ukraine after 1991 until Russia annexed the Black Sea peninsula in 2014.
After Russia invaded on February 24, the world became a medical minefield for people with diabetes. For Ocheretenko, the threat of the war itself was less alarming than its impact on the people her organization works to support.
“I had no fear from the first minute,” she said. “There were explosions outside my windows. My first thought was to have water and prepare food for my daughter…Then the calls started coming in with questions. People were used to our help. Many asked for advice, especially those who had fled abroad.”
A path forward in wartime
When Russia began its attack on Ukraine, Ocheretenko received instant offers of support from diabetes associations in Kazakhstan and Georgia. But formerly close colleagues in Russia immediately broke all ties. She turned down an offer of insulin supplies from Direct Relief – those are going to the Ministry of Health – saying that the UDF cannot ensure temperature and other logistical controls. Instead, UDF is distributing glucose monitors and testing strips donated by Direct Relief.
“Thanks to Direct Relief, adults received glucose monitors for free for the first time,” Ocheretenko said during a Zoom call from Kyiv, interrupted, for a change, not by air raid sirens but by a thunderstorm.
As of August 15, Nadezhda Karapysh, Ocheretenko’s top Kyiv volunteer, had mailed packages of OneTouch Select blood glucose strips (donated to Direct Relief by LifeScan for the benefit of Ukraine) to a carefully verified list of recipients across Ukraine, from the Chernihiv region to Melitopol before it was occupied, and to soldiers on the frontlines. Karpysh became a volunteer 20 years ago when her grandson was diagnosed with diabetes. Now he is fighting to defend Ukraine.
In a comment on the UDF’s Facebook page, a doctor expressed profound gratitude for the test strips and described the difficulties of treatment for people with diabetes.
“Thank you for taking care of our patients,” he wrote. “Thanks to you, I received test strips for the first time in my life. I rejoiced to the point of tears for them. Endocrinological assistance for residents of rural areas is at zero! There are no screenings, we detect the disease at the stage of complications!”
At the same time, in mid-July one of the wartime benefits for people with diabetes was rolled back. By government order, an insulin copay of 15 percent was re-instituted for some categories of patients. “Here we go again,” wrote Ochertenko in a Facebook post. “People often don’t even have enough money for food,” as the war approached its six-month mark.
In August, Direct Relief delivered a seven-week supply of long-acting insulin that it had secured from the Eli Lilly Company for distribution around the country by the Ministry of Health.
“Dropped to zero”
Ocheretenko is dealing with a collapse in services – when she was first interviewed for this story in late June, the few endocrinologists left in Kharkiv were overwhelmed. Smaller cities under direct attack were left with none. Fortunately in the major city of Dnipro, practically all remained in place.
But she’s also concerned about problems that existed long before the war and will likely continue after it ends – particularly those related to diabetes education, a major focus of UDF.
“My firm conviction is that it doesn’t depend on the type of insulin,” Ocheretenko said. “Even the most modern kind won’t work well if a person is not taught” about how to use it and how to control diabetes.
One of Ocheretenko’s main criticisms of Ukraine’s healthcare reform is that it shut down a nationwide network of diabetes schools that she had helped build up. “Within several years the level of knowledge dropped to zero,” compounding the socio-economic factors that are the main cause of diabetes in Ukraine. The UDF is developing a new educational program called Dialeader.
“We are helping to bring victory”
Before the war, Michno had no personal experience with diabetes, but had an invaluable background in building networks. She had become a successful Mary Kay cosmetics representative in the 1990s when the American firm became popular in post-Soviet countries. “We had American training sessions in sales and marketing,” she said. “Then we needed beauty.”
Now, she said, “we are helping to bring victory.”
As Russian missiles rained down on Kharkiv, thousands of residents sheltered in the metro. Michno and her daughter started by handing out healthy snacks there.
She and her family took refuge at a family dacha, or country home, in the region, where she is developing a diabetes education network and connecting people with diabetes to treatment, with a focus on the elderly and children. Michno says “the entire country has ended up in a horrific situation” and children with diabetes “in an even more horrific” one.
The rural area where Michno is now living and working is sheltering a large number of displaced persons from Kharkiv and the Donbas region who were unable to leave the country. Many of them have diabetes; there is no functioning treatment center for preventative endocrinology and diabetes care; and long distances and lack of money make it increasingly difficult to get any care.
Michno is seeking funding to create a treatment center and organize educational events, psychological support, and activities to support people with diabetes and their families. She is also experimenting with social media platforms as a way to unite people with diabetes. (Instagram does not work for those over 45, she said.)
“At war their whole life, like soldiers”
Until recently, Odesa had not been hit hard, and the local UDF was helping Kharkiv.
There were 344 children with diabetes in Odesa before the invasion, and 178 as of mid-June, when Direct Relief spoke with Nadezhda Goncharenko, deputy head of the city’s health department. Many children had left the country with their mothers early in the invasion, and many elderly people remained, or sought shelter in what seemed to be safe cities, including Odesa.
Disruption of medical supplies can be traumatic. Goncharenko says there are occasional problems with obtaining “imported insulin and especially with analogs” and that there is still a significant need for glucose meters and testing strips, as well as needles for insulin injections pens. “Humanitarian aid has helped a lot” with maintaining insulin supplies, she said.
Galayeva said her son’s diabetes has resulted in leadership skills useful in wartime. An IT specialist, he now runs Odesa’s UDF branch, while she continues to help as a volunteer.
People with diabetes “are more stress resistant since they are at war their whole life, like soldiers,” she said, and many are fighting now. “My son has friends who are healthy. He can gather them together, explain things and they understand.”
“People with diabetes have shorter lives in peacetime as well,” said Ocheretenko in a follow-up email. “We’ll probably never find out how many among the dead had diabetes,” since it is harder for doctors to treat people with diabetes when they suffer trauma or injury.
She compares people with diabetes to tightrope walkers who are constantly fighting to maintain their balance “with no days off,” at risk of being knocked off by a squall at any moment.
“War has a cruel face, and it is doubly cruel” to people with diabetes, wrote Ocheretenko. She signed off with the hashtag #NO_WAR.