By Sophia Kishkovsky
” Battle “. “Soldiers”. ” Victoire “. When members of the Ukrainian Diabetes Federation (UDF) talk about living with diabetes, they are using the language of war.
If it’s a war, Valentina Ocheretenko is on the front line. A theoretical physicist, she spent 45 years caring for a girl with diabetes and founded the UDF during Soviet leader Mikhail Gorbachev’s perestroika reforms. It was a pioneering non-governmental organization as the country moved towards independence.
And as real bombs fall on Ukraine, Ocheretenko is raising an army of staff and volunteers to continue the fight against diabetes – with the help of a $150,000 grant from Direct Relief. These activists do everything from distributing blood glucose monitoring equipment in 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 has ended.
The 2021 Diabetes Atlas from 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 depend on the insulin. The Russian invasion displaced many of them across the country, trapped them in Russian-occupied territories 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.
“An even scarier beast than diabetes”
Children with diabetes “have a lifelong diagnosis that they won’t be able to deal with without a battle,” said Galina Michno, who recently opened a UDF branch in Kharkiv, Ukraine’s second-largest city. Kharkiv has been under bombardment since the invasion began, and Michno coordinates medical care and aid for people of all ages facing diabetes in dire circumstances. “Now we have an even scarier beast than diabetes. This 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 Odessa, 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 now adult son 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 war itself was less alarming than its impact on the people his organization supports.
“I wasn’t scared from the first minute,” she said. “There were explosions outside my windows. My first thought was to get some water and to 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 way forward in times of war
When Russia launched its attack on Ukraine, Ocheretenko received immediate offers of support from diabetes associations in Kazakhstan and Georgia. But former close colleagues in Russia immediately severed all ties. She declined an offer of insulin supplies from Direct Relief – these go to the Department of Health – saying the UDF cannot provide temperature and other logistical checks. Instead, UDF distributes blood glucose meters and test strips donated by Direct Relief.
“Thanks to Direct Relief, adults have received blood glucose meters for free for the first time,” Ocheretenko said on a Zoom call from Kyiv, interrupted for change, not by air raid sirens but by a thunderstorm.
On August 15, Nadezhda Karapysh, Ocheretenko’s top volunteer in Kyiv, had mailed packets of OneTouch Select blood glucose strips (donated to Direct Relief by LifeScan to benefit Ukraine) to a carefully checked list of recipients. across Ukraine, from the Chernihiv region to Melitopol before its occupation, and to soldiers on the front line. 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 deep gratitude for the test strips and described the treatment challenges 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 tears for them. Endocrinological assistance for rural residents is zero! There is no there is no screening, we detect the disease at the complication stage!”
At the same time, in mid-July, one of the wartime benefits for people with diabetes was canceled. By order of the government, an insulin quota of 15% has been restored for certain categories of patients. “Here we go again,” Ochertenko wrote in a Facebook post. “People often don’t even have enough money to eat,” as the war neared its six-month mark.
In August, Direct Relief delivered a seven-week supply of long-acting insulin it had obtained from Eli Lilly for nationwide distribution by the Department of Health.
“Fallen to zero”
Ocheretenko faces a collapse of services – when she was first interviewed for this story in late June, the major city of Dnipro did not have a single endocrinologist, while in other regions the few endocrinologists were overwhelmed.
But she is also concerned about issues that existed long before the war and are likely to continue after its end – particularly those related to diabetes education, a major focus of the UDF.
“My firm belief is that it doesn’t depend on the type of insulin,” Ocheretenko said. “Even the most modern type won’t work well if a person doesn’t learn” how to use it and how to control diabetes.
One of Ocheretenko’s main criticisms of Ukraine’s healthcare reform is that it closed a nationwide network of diabetes schools that she helped set up. “Within a few years, the level of knowledge has fallen to zero”, aggravating the socio-economic factors which are the main cause of diabetes in Ukraine. The UDF is developing a new educational program called Dialader.
“We are helping to bring victory”
Prior to the war, Michno had no personal experience with diabetes, but had invaluable experience in networking. She had become a successful representative of Mary Kay cosmetics in the 1990s when the American firm became popular in post-Soviet countries. “We had American sales and marketing training sessions,” she said. “So we needed beauty.”
Now, she says, “we are helping to bring victory.”
As Russian missiles rained down on Kharkiv, thousands of residents took refuge in the metro. Michno and her daughter started by distributing healthy snacks there.
She and her family have taken refuge in a family dacha, or country house, in the area, where she is developing a diabetes education network and linking people with diabetes to treatment, with a focus on older people. and children. Michno says that “the whole country has been left in a horrible situation” and children with diabetes “in an even more horrible situation”.
The rural area where Michno currently lives and works is home to a large number of displaced people from Kharkiv and the Donbass region who have not been able to leave the country. Many of them suffer from diabetes; there is no functional treatment center for preventive endocrinology and diabetes care; and long distances and lack of money make it increasingly difficult to obtain care.
Michno is seeking funds to establish 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 doesn’t work for people over 45, she said.)
“In war all their lives, like soldiers”
Until recently, Odessa had not been badly affected and the local UDF was helping Kharkiv.
There were 344 children with diabetes in Odessa before the invasion, and 178 in mid-June when Direct Relief spoke to Nadezhda Goncharenko, deputy head of the city’s health department. Many children had left the country with their mothers when the invasion began, and many elderly people remained or sought refuge in what appeared to be safe towns, including Odessa.
The disruption of medical supplies can be traumatic. Goncharenko says there are occasional problems with obtaining “imported insulin and especially with analogues” and that there is still a significant need for glucometers and test strips, as well as needles for insulin injection pens. “The humanitarian aid has helped a lot” to maintain the insulin supply, she said.
Galayeva said her son’s diabetes taught her leadership skills useful in wartime. A computer specialist, he now heads the UDF branch in Odessa, while she continues to help as a volunteer.
People with diabetes “are more resilient to stress because they’ve been at war all their lives, like soldiers,” she said, and many are fighting now. “My son has friends who are healthy. He can bring them together, explain things to them and they understand.”
“People with diabetes also have shorter lives in times of peace,” Ocheretenko said in a follow-up email. “We’ll probably never know how many people who died had diabetes,” because it’s more difficult for doctors to treat people with diabetes when they’re suffering from trauma or injury.
She compares people with diabetes to tightrope walkers who constantly struggle to maintain their balance “without rest days”, at risk of being knocked down by a gust of wind at any moment.
“War has a cruel face, and it is doubly cruel” for people with diabetes, Ocheretenko wrote. She signed with the hashtag #NO_WAR.