Teen allergic to insulin undergoes first-in-Canada operation

Andrew Duffy 4 minute read June 25, 2021

Sacha Cardinal, 17, holds the Accu-Chek DiaPort system, a highly specialized device made by Roche that infuses insulin into the abdominal cavity. CHEO

Sacha Cardinal confounded her doctors at CHEO.

The 17-year-old from Alfred, Ont., had been managing Type 1 diabetes without trouble since being diagnosed with the condition at the age of three. Then, in February 2020, she went to hospital with ketoacidosis, a build-up of acids in the bloodstream caused by a lack of insulin.

“That’s when we realized the insulin was not being absorbed correctly by my body,” said Sacha, a Grade 12 student at l’École secondaire catholique de Plantagenet.

She also had painful welts at the site of her insulin injections on her arms and legs. “It was as if someone had punched me there,” she says.

Sacha had developed an allergic reaction to her thrice-daily insulin injections. Less than three per cent of all diabetics will develop an insulin allergy, but Sacha’s condition was rarer still: Her body continued to react even when doctors changed insulin preparations or used them in combination with antihistamines or steroids.

A battery of tests revealed the injections were causing inflammation in a layer of fat beneath Sacha’s skin.

Her condition was life threatening, said CHEO endocrinologist Dr. Alexandra Ahmet, since it also meant that her body was not absorbing enough insulin, the hormone missing in diabetics.

“We reached out to colleagues across Canada and around the world to say, ‘Have you seen this? How do you manage this?’ But people didn’t have any experience,” said Ahmet, an investigator at the CHEO Research Institute. “It meant there was no clear-cut approach.”


Early this year, in February, Cardinal was admitted to CHEO to manage her condition — she was put on an insulin IV — while doctors figured out a plan of action. They tried immunosuppressants, commonly used to treat rheumatoid arthritis, and also exposure therapy, a procedure that slowly releases small amounts of insulin into the body. Nothing worked.

Then Ahmet found a European case report describing a similar patient who had received a novel treatment: a medical device that infuses insulin into the abdominal cavity. (Common insulin pumps deliver insulin under the skin.)

But the Accu-Chek DiaPort system, a highly specialized device made by Roche, was not approved for use by Health Canada.

“This was the perfect solution because it bypassed the skin where her allergy was,” Ahmet said, “but it was not available in Canada.”

So Ahmet and her colleagues launched an all-out effort to bring the device to CHEO. She sought Health Canada approval through the special access program, contacted Roche Canada officials and searched for doctors who could demonstrate the device.

“We needed someone to teach us how to insert it and how to use it,” Ahmet said. “We also needed to pay for it.”

The device was not covered by OHIP or private health insurance because it had not been approved for use in  Canada.

Roche Canada agreed to help. It paid for the device and financed the travel of an experienced German surgeon, Dr. Claus Kiehling.

COVID-19 created more problems, and Ahmet had to negotiate with border officials to get the surgeon into the country.


Earlier this month, Kiehling arrived, and on June 17, he led the surgery to implant the device, which has successfully delivered insulin without triggering an allergic reaction from Sacha’s body. The implanted port — it has a catheter that leads to the abdominal cavity — can be connected to a portable insulin pump.

Sacha is now the only person in North America using the device. She was released from hospital on Wednesday, just in time to attend her Grade 12 drive-thru graduation ceremony.

“It has been a hell of ride,” said Sacha, who plans to study criminology at University of Ottawa. “I’m happy to be home and feeling better.”


Her mother, Sylvie Gelinas, thanked the CHEO medical team for working so hard on behalf of her daughter. “It has been a long and stressful process, especially with COVID,” said Gelinas. “There were so many unknowns.”

There are still more hurdles to overcome: The special insulin used with the device is not covered by OHIP or health insurance, and a Gofundme page has been set up to help Sacha’s family afford the supplies, which can cost up to $15,000-a-year.

What’s more, Sanofi, the company that makes the insulin, has also warned that it plans to discontinue the line in 2022. “The device can’t be used without it,” said Ahmet, “but there are 70 people worldwide using this device for various reasons, and I’m very hopeful that something can be done.”

Ahmet said she’s proud of the work CHEO staff did to address Sacha’s situation, and she hopes their experience can help other patients with rare conditions. “We worked very, very hard on this and many, many hours, but without it, where would Sacha be?” she said. “I’m so happy for Sacha and her mom: It’s very hard for a teenager to be in hospital that long and be in pain.”


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