Awards Honor Long Lives With Diabetes
Lilly and Joslin medals support decades of type 1 and insulin-dependence
In 1938, Elizabeth Tarbox was rushed in her parents’ car to Boston because a doctor had told her mother Tarbox was 24 hours from falling into a coma. Her parents had to borrow money from her uncle in order to make the trip. When Tarbox arrived, she says a very caring doctor, Elliott Joslin, MD, diagnosed her with type 1 diabetes. Tarbox was 4½ years old. In June 2014, she attended a ceremony to receive a 75-year Lilly Diabetes Journey Award for having managed her diabetes with insulin for such a long time.
At the ceremony, several others received medals, too. “There were quite a lot of patients there who got 25-year awards, there were a few 50-year awards, but I was the only one with a 75-year award,” says Tarbox. “I felt like it was an accomplishment, which I had never thought of before.”
The Lilly Diabetes Journey Awards program, formerly LillyforLife, began in 1975 as a way to recognize people in the United States who have been able to successfully manage their type 1 diabetes for decades. The awards honor people who have been living with insulin-dependent diabetes for 10, 25, 50, and 75 years or more. Those who have managed their diabetes through the changing landscape of treatment have proven that they are resilient and good role models for others dealing with the condition.
For Tarbox, 80, some of these lifestyle changes took place immediately. In addition to her father injecting her with insulin every day, Tarbox had to go through some dietary changes that were hard for her to understand at that age.
“One day my mother made blueberry pie, and she served everyone at the table, but I didn’t get any,” she says. “I started to cry, and my mother said this was the last time she would be serving dessert at the table.”
As time went on, the dietary changes became routine. Tarbox could have absolutely no sugar—at birthday parties, she wasn’t allowed to eat a piece of cake—and her food was weighed and rationed for every meal.
While Tarbox isn’t as strict with her diet today, that doesn’t stop her from craving certain foods. “I still say, ‘I wonder what it would be like to sit down and eat anything I want to eat,’ ” she says. “And to this day, if I could eat any dessert, it would be blueberry pie.” Of course, carb counting and adjusting insulin allow Tarbox and anyone on intensive insulin therapy more freedom today in food choices—even pie.
Tarbox has navigated many such treatment changes through the decades. One challenge: Learning to use different types of insulin as the medication changed over the years. Tarbox also had to master carb counting, which was not something she had to do in the past. But, despite the changes, Tarbox says she is used to managing food and her blood glucose levels, and she’s careful to have something to eat in her purse or car just in case she has a bout of hypoglycemia (low blood glucose), which is a side effect of taking insulin.
Aside from episodes of hypoglycemia and some eye complications over the years, Tarbox says she’s lived a normal, happy life. She credits her health to diligence in diabetes management. “If you aren’t going to live by diet and do your testing regularly, you’re not going to see yourself through 50 years of diabetes,” she says. “You’ve got to be careful about what your body is doing.”
What Medalists Teach Us
Another program that recognizes people living with type 1 diabetes for 25, 50, 75, and 80 years is run by the Joslin Diabetes Center in Boston. The program started in 1948 when Joslin, a pioneer in the study and treatment of diabetes and the same man who treated Tarbox, began awarding medals to all type 1 diabetes patients who survived 25 years with the help of insulin, says George King, MD, director of research at Joslin and professor of medicine at Harvard Medical School. In the 1970s, the program was converted to the 50-Year Medalist Program because advancements in care helped most people live with diabetes for more than 25 years. While the program no longer gives medals for those living with diabetes for 25 years, it does offer a certificate.
In 2004, the program shifted again as Joslin researchers began studying the medalists who had lived with type 1 diabetes for at least 50 years. Anecdotal evidence suggested that this group escaped many of the complications associated with diabetes, such as blindness, kidney failure, and nerve disease. “We have studied over 960 patients and we are scheduled and funded to study over 1,000 patients,” says King, “and we have found that 35 percent of them really do not have much eye, kidney, or nerve disease, so the anecdotal report is correct.”
This is true for study participant and 50-year medalist Maria Storm, 65, who says she is lucky not to have any diabetes-related complications. “I am extremely fortunate in that I am a very healthy person,” she says.
Storm walks the fine line between diligent diabetes management and living her life to the fullest. “I take good care of myself, but I don’t obsess about it,” she says. “I don’t feel it’s a burden in any way, and I don’t think it’s ever stopped me from doing anything I wanted to do.”
Now researchers are in the process of figuring out why people like Storm don’t develop complications despite long-duration type 1 diabetes. King says they have found a few preliminary reasons. One is that the medalists are very active. He says many, even at 70 or 80 years old, are long-distance runners, bicyclists, and even ballroom dancers. Storm stays active by walking her two dogs daily and swimming twice a week.
They have also found that the pancreas still makes insulin—although in minuscule amounts—in many of the medalists in the study. “This changes the whole thinking about treatment for type 1 diabetes,” says King. “If they still have insulin-producing cells, then you can try to regenerate them rather than have to transplant foreign cells.”
He says these findings will help guide researchers toward new therapies, and he emphasizes that the success rate of finding new treatments is much higher when you start with the patient. “That is why clinical research and clinical care [are] so important,” he says. “It’s so important for us to pay attention to our patients and what they are telling us, and take that to developing new drugs.”
Claiming Your Medal
Lilly Diabetes Journey Award: People living with type 1 diabetes for 10, 25, 50, or 75 years—and health care professionals and caregivers on their behalf—can submit an application online.
- Go to bit.ly/LillyJA.
- Select “patient” or “health care provider.”
- Fill out the form with details such as when you were diagnosed and the year you began insulin therapy.
- Wait four to six weeks for your application to be processed.
- If you have questions, call 1-888-545-5115.
Joslin 50-Year Medalist Study: The program is open to anyone who has had insulin-dependent diabetes for 25, 50, 75, or more years. You do not have to be a Joslin patient to apply, but some documentation of diagnosis is necessary.
- Go to joslin.org/medalist/apply_now.html.
- Print the application packet.
- Fill out the Release of Protected Health Information form to request records.
- Send all paperwork to:
Medalist Study, Room 378
Joslin Diabetes Center
One Joslin Place
Boston, MA 02215