As someone who's been doing islet cell transplants for 20-plus years now, Dr. Jose Oberholzer in Chicago wonders why more people with diabetes don't know about the procedure as an option.
Sure, it's not mainstream right now, but the Illinois surgeon and researcher thinks islet transplantation is on the verge of becoming more common as it nears a stage where it will no longer be considered "experimental."
The next couple of years could be game-changers, and Oberholzer -- who leads the islet transplantation project at the University of Illinois at Chicago (UIC) -- says he hopes these procedures, currently reserved for a select few who can demonstrate critical need, will become more common.
"This is a life-changing experience for those who are eligible, and yes, they say that it's a 'functional cure' to them," Oberholzer told us in a recent phone interview. "Really, this current time is the most exciting we've had in this field."
We've shared the details with you previously about this Chicago-based program and its fundraising efforts. The Chicago Diabetes Project (CDP) is modeled after the Human Genome Project and is a global collaboration of scientists working on islet cell transplants, encapsulation, and new cell creation. The now 10-year-old project has conducted about 38 islet cell transplants in "experimental" clinical trials during that decade, while hundreds of transplants have also been done globally.
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Oberholzer has been leading the project since its inception in 2004, and has overseen a few hundred research implants, plus three dozen or so completed in human patients in the past 10 years. But even those who are well-connected and cared for in diabetes aren't aware, and that's something Oberholzer hopes to change.
Four women who had islet transplants a few years ago were gathered in Chicago recently, chatting about their experiences of being completely off insulin and also their involvement in marathon running. Suddenly, another PWD joined in that conversation, Oberholzer recalls:
"A young woman asked in disbelief, 'Wait a second, what do you mean by the phrase 'remember when we were diabetic and had all those terrible lows while running? Did you get rid of type 1 diabetes through running?' The four women burst into laughter and said, 'Young lady, you cannot literally outrun diabetes, at least not type 1. No, we all had an islet cell transplant and are functionally cured, kind of...' The young woman was completely shocked and didn't even know what that was."
Oberholzer says the PWD asking the question was intelligent, very involved in the diabetes community, and had been living with type 1 for many years, but had simply never heard of islet transplantation.
"Of course, the vast majority of type 1 diabetic patients do not need a transplant, but there are thousands of type 1 diabetics struggling through life and for some of those, a transplant can really be a good option," he said.
How Transplantation Works
The procedure itself takes just about an hour, and is basically a "big injection" into the portal vein of the liver, done while the patient is awake but drowsy. Oberholzer says he spends half his time on actual transplants, and the other half on researching aspects like immuno-suppresants and islet-sourcing. Because of the low number of available islet cells and the dangers of the drugs, not just any PWD can get a transplant. You have to demonstrate that quality of life is currently very poor, and that living with diabetes (because of hypoglycemia unawareness or other complications) is worse than the dangers that come from a transplantation procedure.
Transplantation isn't a complete cure because there are a lot of imperfections to the process -- specifically, finding enough sources for the islet cells and the need for lifelong immuno-suppressant drugs to keep the autoimmune system from destroying those foreign islet cells.
"This isn't mainstream for everyone, but for those who are handicapped by hypos... these options are here. There are a lot of patients out there living a pretty horrible life, and doctors just tell them to try harder. It's not working, and this could be an option."
— Dr. Jose Oberholzer, on islet cell transplantation
After one year, 90% of patients remain off insulin, but that rate goes down over time. About 60% of transplant patients remain off insulin at the five-year mark, and Oberholzer says it's not clear yet what the success rate will look like after 8 or 10 years.
"We're never going to be at 100%, and that's an unfortunate reality of life," he says. "It's really difficult when someone comes in and needs to restart on insulin because the islets aren't successful anymore. That's like someone stabbed me in the heart. But you're talking a five-year vacation from diabetes, and that's priceless for those who have been able to say that."
A Mission to Cure
Oberholzer, who was born in Morocco but grew up in Switzerland, says he's known since he was a child that he wanted to "help find a cure for diabetes." He isn't diabetic himself, but his cousin was diagnosed at age 8 in the mid-70s, so he was exposed to this illness from an early age. Once he became a doctor and eventually a surgeon, he started working on kidney and pancreas transplants in a lab in Switzerland.
In the years that followed, Oberholzer's become an internationally known expert in the field.
He trained at the University of Geneva and the University of Alberta in Canada (home of the "Edmonton Protocol" that modern islet cell transplantations are modeled after), and he later led the Islet Transplant Program in Geneva and the GRAGIL islet consortium until he came to Chicago in 2003. About seven years ago, he added UIC's "chief of the transplant division" to his resumÃ© and that's added his expertise in robotic surgery for organ donation (a non-invasive way to remove organs from living donors).
Looking back at how the procedure has changed through the years, Oberholzer sees many significant improvements, despite the fact that issues of immuno-suppresants and iset-sourcing remain the biggest hurdles.
"At the point we are today, I'd say that if we had enough cells, we'd have thousands who would want to have this procedure done -- even with the medications needed," he says. "There's been a lot of progress, but it's not a mainstream therapy yet."
Oberholzer believes that we're within two or three years of seeing the FDA approve islet cell transplantation beyond the clinical trial phase. Once that happens, the procedure may be performed on up to 400 or 500 patients a year in the U.S.
"That's still a ridiculously small number when compared to the number of people who might need this, but if you're one of those diabetics, it's life-changing," he said.
My guess is that despite the immuno-suppressant drug risks and the fact that your need for insulin may return over time, many a PWD would sign up for this "big injection" if given the chance.
There's a lot of potential here, and we sure as hell hope that researchers at institutions like CDP are able to find better ways to source islet cells, transplant them more efficiently, and protect the islets from our immune systems in safe, lasting ways.
After all, what PWD wouldn't want to be "cured," if only for a few years?