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Dr. James Shapiro, founder of the Edmonton Protocol, and Professor - Surgery, Medicine, Surgical Oncology, at the University of Alberta, believe his team is well on the way to a cure for at least Type 1 diabetes. (Supplied)
from "yo-yo on steroids" to calm ebb and flow

Edmonton Protocol turns diabetic Innisfail resident’s life around; research gets closer to a cure

Sep 15, 2022 | 4:21 PM

For over 51 years, Colleen Preston’s life brimmed with, “constant burden,” thanks to a childhood diagnosis of Type 1 diabetes.

Thousands of insulin doses later, the Innisfail resident has a fresh outlook after two treatments from the Edmonton Protocol at the Alberta Diabetes Institute, situated at the University of Alberta.

Called islet cell therapy, the treatment has been offered through the Institute for over 20 years.

Patients receive an infusion of islet cells, which are obtained from the pancreases of cadavers, or deceased donors.

ALMOST DIED AS A CHILD

“I feel now like part of the normal population. For so long, it’s been hard watching others eat whatever and whenever, not having to consider what it’s doing to their blood sugar, or how much they were consuming. I’ve felt deprived all these years,” says Preston, now 62, recalling her diagnosis day.

“It was traumatic. I’d been quite sick, and my sister was insisting I go to the hospital. We fought our mom on it because the doctor had told her on the phone I just needed fluids and would be fine. But we did go, and they told my sister that if she’d waited another 24 hours, I’d have been dead.”

Doctors knew the pending diagnosis from her fruity breath.

One infusion last summer, and a second this summer, and Preston’s gone from seven blood sugar finger pricks daily to zero.

“I do an occasional one if I feel something might be off.”

NOT QUITE A CURE

Dr. James Shapiro, Professor of Surgery, Medicine and Surgical Oncology, is the man responsible for starting the program, and astutely notes that while the therapy is incredible, there’s one thing it’s not: a cure.

Dr. James Shapiro. (Supplied)

“We’ve transplanted more than 750 times, putting cells into patients’ livers. The challenge has been that organ donors are scarce while diabetes is very common. Also, we must give powerful and risky anti-rejection drugs. This is why we only offer this to patients really struggling,” Shapiro explains.

“We’re looking to improve this. The limitation that is organ donors has led us to try using stem cells as an alternative. This is advantageous because we can create a limitless supply, but also because if we’re transplanting a patient’s own cells into their body — an autologous transplant — then we know they’ll be compatible and the anti-rejection drugs become unnecessary.”

Shapiro says most patients will eventually require small doses of insulin again.

“Some have gone beyond 20 years without it. The fact some go back to it likely reflects how we only put in a relatively small amount. We hope it lasts long, but it isn’t guaranteed,” he says.

“Regardless, patients enjoy periods completely free of insulin and have stable sugar control, so wide swings and dangerous lows are eliminated.”

LIFE WITH A NEW HOPE

Preston’s transplant was a half-day process with two hours asleep, hooked up to an IV for infusion at the U of A hospital.

“Dr. Shapiro’s tremendous amount of research should give hope to other diabetics. My blood sugar was up and down like a yo-yo on steroids, and almost immediately calmed down. I couldn’t control it no matter how closely I watched things,” says Preston, who for research purposes committed to one year before receiving a second transplant.

“Daily for 51 years, I hoped for a cure, and I thought the 90s would be when we got it. In a sense, they were because that’s when Dr. Shapiro started the first transplants.”

Preston could’ve applied for a transplant then, but decided to stick it out and manage the disease as best as possible.

She’s since developed vision problems in the form of blind spots, has neuropathy in her feet, and celiac disease. The hope is those conditions will improve over time. Unrelated, she also survived breast cancer.

Colleen Preston, an Innisfail resident, is off insulin for the first time in 51+ years. (rdnewsNOW/Josh Hall)

“Recently, I went camping with family. In the past, I’ve avoided eating when they do because it wasn’t at least two hours since my last blood sugar or insulin dose,” she laments.

“I have my freedom now to not worry.”

A SIGHT TO BEHOLD

Dr. Shapiro sees the Protocol’s patients daily and marvels.

Seeing the transformation in patients’ lives, and the striking way in which their various numbers change once they’ve received a transplant, he shares, remains astounding 20+ years on.

“We see people on 60 units per day and then when it drops to zero, that’s pretty thrilling for the patient and us,” says Shapiro, who also serves as Tier 1 Canada research chair in Regenerative Medicine and Transplantation Surgery.

“Talking to patients about the transformation in their lives and hearing about them being able to do things they only dreamed of previously, plus not fearing life any longer, it’s incredibly rewarding for our entire team.”

The Edmonton Protocol — named after Frederick Forsythe’s ‘The Fourth Protocol,’ says Shapiro — was the first program globally to report 100 per cent success in patients treated.

Prior, there had never been a series of patients with Type 1 able to stop taking insulin because of islet cell transplants. The therapy is available around the world, but Shapiro’s program will always have the aforementioned bragging rights.

Their 750 transplants have helped more than 315 patients, with funding coming from AHS and various provinces.

“We’re working on it hard, and we firmly believe we’ll get to a cure,” alluding to his 50+ member team. “We’re making good headway and I’m certain that in the end, we’ll deliver.”

According to Diabetes Canada, an estimated 11.7 million Canadians have diabetes or prediabetes, with 5.7 million diagnosed. About 403,000 are diagnosed in Alberta, with the disease costing the province $494 million annually, according to most recent numbers.

To learn more, visit ualberta.ca.

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