Participating in a marathon is a pretty amazing feat for anyone, but five people taking part in the 26.2-mile Bank of America Chicago Marathon on Oct. 7 share something that makes this amazing feat extra special: all of them were formerly dependent on insulin, but have had an islet cell transplant and are now living their lives diabetes-free!
Islet cell transplantation is what connects the five together as members of the athletic team Cellmates On The Run (!), going after the opportunity to compete in marathons, triathlons and other endurance fitness events together. In addition to the Chicago Marathon, Cellmates will also participate in the Chicago Half Marathon in September and the NYC Marathon in November!
Aside from the fact that it’s so cleverly named, the team serves as a research funding mechanism for the Chicago Diabetes Project (CDP) headquartered at the University of Illinois Hospital and Health Services. A global collaboration of scientists working on islet cell transplants, encapsulation, and new cell creation, the CDP is modeled after the Human Genome Project and has conducted 10 islet cell transplants in Phase I clinical trials since the program began in 2004.
So far, all of the transplant patients successfully came off insulin.
As the only program of its kind, the CDP helps raise money for its research by recruiting transplant recipients to be a part of the Cellmates team. Founded in 2009, the team has a total of 180 runners, ranging in age from 17 to 70 and including beginner athletes and experienced marathoners. Team organizers estimate about half of the team has a specific D-connection, with about 10% being type 1 PWDs — including the five islet transplant recipients who are technically not type 1s anymore! — and about 40% being people who have family or friends with diabetes.
While only 10 have gone through this Chicago-based research trial, hundreds of patients across the U.S. and globally have had these Islet cell transplants done in the past few years. This procedure, which is still in the clinical trial phase, is currently the only way to “cure” a PWD. But it’s not a complete cure because there are a lot of imperfections to the process. Most importantly, anyone undergoing this procedure must be on lifelong immuno-suppressant drugs to keep the autoimmune system from destroying the foreign islet cells.
Also, there’s the sourcing issue. For the average PWD, it takes 2-3 pancreases obtained from cadavers (organ donors) to do an islet cell transplantation. Several pancreases are needed per procedure because islet cells are incredibly fragile and many of them are destroyed in the transplant process. Keep in mind that there are only approximately 15,000 cadaveric pancreases available in the country each year — definitely not enough to cure everyone with diabetes! This is one of the reasons behind the push for using embryonic stem cells to create islet cells.
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. You can read the details of how it’s done here.
The Chicago Diabetes Project, along with other research centers, is working on ways to transplant the islets into patients without the need for immuno-suppressant drugs. Because of the low number of available islet cells and the dangers of the drugs, not just any PWD can get a transplant. PWDs who wish to be part of the studies must demonstrate that their quality of life with the disease 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.
Such is the case for Suzi Johnson, a 55-year-old transplant recipient and runner for Cellmates, who says that the Chicago Diabetes Project changed her life after she developed hypoglycemia unawareness.
“The severe blood sugar swings left me both physically and emotionally drained and occurred without any warning that a life-threatening condition existed,” explained Suzi, who was diagnosed 18 years ago at age 37. “When friends and family became apprehensive about leaving me alone, I feared that I was soon going to lose my independence or, the worst-case scenario, my life.”
Suzi researched her options and discovered the CDP, a four-hour drive from her home in Decatur, IL. After applying and being accepted into the trial, she received her islet transplantation in 2007 and has been completely off insulin ever since.
“I have energy and zest for life now that enables me to get up early four times per week to walk or jog 15 to 20 miles per week, and I intend to increase that a little each week in preparation for the marathon,” Suzi says. “Being free from insulin has given me such confidence that I quit my 20-year paralegal career to follow my passion and open my own dog boutique. I help people train dogs and I show dogs in both obedience and the sport of agility. Life is good!”
If you happen to be interested in joining the Cellmates team, you don’t need to be a hardcore marathon runner, either. One of the transplant recipients, 67-year-old Judith-Rae Ross, who was diagnosed with type 1 in 1979, is walking the Chicago Marathon to support the research that changed her life.
“Walking the marathon proved to me that I’m not a diabetes hostage anymore,” explains Judith, who received her transplant in 2009. “I’m living an exciting, insulin-free life. I’m walking the marathon again because I want to be a foot soldier for the cure. If my walking helps raise money, then I’ll tromp the 26.2 whenever Dr. Oberholzer asks me to do so.
Support the Cellmates?
There’s still time to be a part of Cellmates on the Run and take part in the Chicago Marathon!
The team is accepting new participants until Sept. 1, and all new runners (or marathon walkers) will need to raise a minimum of $1,000. But if you’re not up for a marathon, you can still support the research by donating to the team. All of the donated money goes directly to the research. Last year, the Cellmates team raised a total of $300,000 and they’re shooting for $500,000 this year!
That seems to us like money well spent to support a cause they call a “functional cure” for diabetes. Right now, islet cell transplantation is the only thing that has taken a PWD off insulin for an extended period of time. Sure, there’s no guarantee that the islets will last forever. We know that the immune response doesn’t just stop once it’s attacked the islet cells at diagnosis, so it’s still there running the background (marathon pun intended).
But this is promising research that has so much potential! We hope researchers at institutions like CDP are able to find better ways to source islet cells, transplant the cells more efficiently, and safer ways to protect the islets from our immune systems.