Insulin Smugglers Strive to Save Lives

ST. CLOUD, Florida -- A letter to U.S. President Bill Clinton, 300 vials of insulin and a Canadian missionary got help to diabetic children in Krasnodar, a region in southern Russia.

But two Floridians -- a spunky diabetic girl and her mother -- made it all work.

Kaitlyn Bubb, 7, and her mother, Tammy, have developed a quasi-clandestine network to deliver insulin to an area where treatment for juvenile diabetes is decades behind the United States.

Their efforts have already paid off. Last month, Ivan Kotunov, 13, received medical treatment in the United States, and even visited Orlando theme parks and a camp for diabetic kids. More important, insulin began arriving in the isolated town where the boy lives.

"They're basically saving those kids' lives," said Tom Schroder, president of the local chapter of the Juvenile Diabetes Foundation.

Earlier this year, the Bubbs didn't even know where Krasnodar was. But they now know that there, between the Black Sea and Ukraine, as in most areas outside Moscow, insulin is in short supply and treatment for juvenile diabetes is rare.

Juvenile diabetes is an incurable disease that prevents the body from breaking down sugars and starches. Without insulin, diabetics build up high levels of glucose in their blood and urine, and only insulin can control those levels. If untreated, diabetics face comas, blindness, nerve damage, stunted growth and circulation problems that may result in amputations.

Juvenile diabetes can also cut life expectancy by 20 years. But diabetics can lead normal lives by measuring the sugar level in their blood and taking shots of insulin.

In Krasnodar, that was nearly impossible. Ivan had lapsed into comas at school, and his mother feared problems with his eyes. Ten other diabetic children in town already showed effects of untreated diabetes: blindness and stunted growth.

Ivan, a solemn boy who likes to read Chekhov and Pushkin, is a normal size for his age, but his skin is sallow and his eyes sunken.

"I'm given outdated insulin and, when they have it, I'm not given enough," Ivan's mother, Irina Kotunova, said through a translator. She journeyed to Florida with her son and son's teacher, courtesy of the Bubb family. They all stayed at the Bubbs' home here. Getting insulin into Krasnodar became a top priority after Kaitlyn read about the Russian youngster in a newsletter on juvenile diabetes. "I told my mom I wanted to help,'' Kaitlyn said.

First, she addressed a letter to Clinton in care of his chief of staff, Erskine Bowles, whose son has diabetes. "Rich or poor, American or Russian, all diabetic kids need insulin to live," she wrote.

Kaitlyn wanted Clinton to bring up the issue with President Boris Yeltsin at their summit last March in Helsinki, Finland, but the leaders where busy with weighty issues like NATO expansion and arms control. Nevertheless, a state department official called a week later, offering to help reach insulin manufacturers about distribution in Russia.

Unwilling to accept bureaucratic delays, the Bubbs mailed insulin and other medical supplies. They changed tactics, however, when they discovered that shipments to Russia often end up on the black market. They were also concerned that parents would have to pay high duties on the medicine.

So the Bubbs turned to Cliff VanVolkingburgh, a missionary from Ontario who frequently visits Russia. They located him through a neighbor who works for Campus Crusade for Christ. Several phone calls later, VanVolkingburgh received 120 vials of insulin that he carried to Krasnodar in his suitcase.

Bubb has since lined up many missionaries from North America as couriers. They carry supplies even if they are visiting towns hundreds of miles from Ivan's home. Fearful that Russian authorities will stop deliveries, the Bubbs will not identify the towns.

"We will go to any town to get insulin," said Ivan's teacher, Lyudmila Radchenkl. She already has made long trips in a beat-up car to pick up insulin for her favorite student. While in Florida, she served as a translator for Ivan and his mother.

After arriving July 9, Ivan visited several doctors who offered their services free of charge. For fun, he toured Sea World and practiced English with Kaitlyn, who likes to read him the book "1,000 Questions and Answers.''

The youngsters also measured their blood-sugar levels together several times a day, pricking their fingers with needles and placing the blood on a white strip of paper. They then inserted the strips into a hand-size machine that shows blood-sugar level. Ivan learned how to use the device himself. In Russia, he used a decades-old testing method that required him to boil his urine.

Kaitlyn, meanwhile, wants to tell Russian authorities to do a better job of getting insulin into Krasnodar. And, as Bubb can attest, "When a 7-year-old tells you to get insulin, you do it."