Long Lives, Lived Well
60 years of thriving with diabetes
William Rounds was 11 months old when he was diagnosed with diabetes. It was April 1923, and Rounds had good timing. Just a few months before, a team of Canadian scientists had announced the discovery of something they called insulin. The news changed the course of Rounds's life—and made medical history.
Rounds, who is now 85, may have lived with type 1 diabetes longer than anyone else on Earth. As a boy, he never missed a day of school. But he did miss out on a lot of the things his classmates took for granted: He had his first taste of birthday cake at the age of 27, when his doctor, the eminent diabetologist Elliott Joslin, told him that he and his new wife could risk a slice of angel food cake.
Throughout his childhood, Rounds and his parents kept a close eye on his urine glucose levels. Using the standard method of the time, his mother boiled water on a Bunsen burner to test his urine several times a day. At 14, Rounds took over his own monitoring, sometimes leaving school in the middle of the day to walk a mile back home. The syringes he used for insulin injections were made of glass; the needles were thick and forbidding.
Now retired and living near Fort Worth, Texas, Rounds—who is hard of hearing—never knew life any other way. "He's always taken good care of himself," says his wife, Dorothy. "He accepted that it was his problem to deal with, and he did."
In the 85 years since Rounds was diagnosed, the experience of living with diabetes has changed a lot. Many of those changes have come in the 6 decades since this magazine was founded: Home glucose monitoring, synthetic insulin, and even seemingly simple things like disposable syringes were all introduced after 1948. And yet many of the things Rounds struggled with as a boy in the 1920s are familiar today. "The daily work of care, the tension over how far to go and how to not let it be the only thing in your life: Diabetes demands so much of people, and always has," says Chris Feudtner, MD, PhD, MPH, a pediatrician at the Children's Hospital of Philadelphia and author of Bittersweet: Diabetes, Insulin and the Transformation of Illness.
Still, it's easy to forget that until the discovery of insulin, diabetes was a death sentence. People diagnosed between 1900 and 1919 had a 50 percent chance of surviving 2 years. Ninety-five percent were dead within a decade. Insulin changed all that almost overnight. But within just a few decades, it became clear that insulin was a powerful treatment, but no cure. As people with diabetes began living longer, they developed complications ranging from blindness to nerve damage. The last 60 years have been a struggle to deal with this reality. Since insulin was identified almost a century ago, researchers have been chasing another breakthrough on the same scale, to no avail. Instead, the story of diabetes has been one of incremental advances, a slow, steady fight against one of the most complex and difficult problems in medicine.
Al Lewis leaves his home every weekday at 6:30 in the morning and bikes 30 minutes to his office at the University of British Columbia, where he is a professor in the Oceanography department. Previously, he would have topped off a week of daily bike riding with a swimming race, but since a back injury sidelined him 2 years ago he hasn't been able to compete. Still, the injury hasn't squashed his competitive spirit. In fact, the Vancouver resident partly credits his good health to this competitive drive—in both exercise and managing his diabetes. "If you're competitive with yourself, you're going to try and improve the nature of what you're doing," he says. "I'll get back in the water again," he adds. "The individual [with diabetes] can achieve almost anything that a person without diabetes can achieve. It takes a lot of effort to do it, but that effort is no different than any other effort."
Diabetes in the days before insulin was a grim diagnosis. What we think of today as type 2, now the much more common version, was extremely rare; the vast majority of cases were type 1. And since the first symptom of type 1 diabetes is often a tremendous thirst as the body loses its ability to process carbohydrates and flushes glucose out in the urine, for thousands of years, diabetes was identified by this combination of thirst and urination. One English surgeon in the 1600s called it "the pissing evile."
Indeed, urine featured heavily in early identification of the disease. Egyptian sources first identified the illness 3,500 years ago. The Greek physician Arataeus, writing around 100 A.D., coined the term diabetes from the Greek for "pass through." And at least as far back as the Middle Ages, doctors tested for diabetes by tasting patients' urine. A telltale sweetness (or "mellitus," from the Latin for "honey") from the sugar being passed through the kidneys was one way to diagnose the disease. But making a diagnosis was about all a doctor could do.
That didn't stop physicians from treating patients with everything from baking soda to opium over the centuries. Eighteenth-century Scottish physician John Rollo prescribed diabetic patients a decidedly unappetizing menu of "plain blood puddings" and "fat and rancid old meats." Once it became clear that diabetes had something to do with sugar, a common treatment was feeding people extra carbohydrates—a sure way to make things worse. Pioneering European practitioners theorized in the late 1800s that if too much food was fatal, perhaps the cure lay in restricted diets. The approach reached its height in the Morristown, N.J., clinic of the stern Frederick Allen. In his 1919 book Total Dietary Regulation in the Treatment of Diabetics, Allen advocated putting patients on diets of less than 1,000 calories a day; if they continued to show signs of sugar in their urine he cut their food back further and further. "There was no limit," writes University of Toronto historian Michael Bliss in his classic book The Discovery of Insulin. "In the most severe cases the choice came to this: death by diabetes or death by [starvation]."
Grim as they sound today, Allen's methods represented the height of pre-insulin diabetes care. Starvation diets typically bought patients about two more years of life. But in the end, says Feudtner, "diabetes was thought of as a hopeless, uniformly fatal disease. Everybody died and the deaths were unpleasant."
Insulin changed everything. When the first experimental samples started to trickle out of Frederick Banting's University of Toronto lab in the spring of 1922, the effects were miraculous. One of Banting's patients was 15-year-old Elizabeth Hughes, the daughter of a U.S. Supreme Court justice and secretary of state. She was being kept alive on a diet of 889 calories a day and weighed 45 pounds when she was brought to Banting's clinic in Toronto. Hughes began taking insulin in the fall of 1922. Within two weeks, she was eating 2,400 calories a day and gaining weight fast. "To think that I'll be leading a normal, healthy existence is beyond all comprehension," Hughes wrote to her mother shortly afterwards. "Isn't that unspeakably wonderful?"
Diabetes went from death sentence to chronic illness practically overnight. "Type 1 diabetes was a fatal disease, and insulin stopped that," says Bliss. "We do have medical miracles, and the coming of insulin is a great example of one."
As insulin became readily and reliably available (a process that took several years) doctors accustomed to seeing their patients waste away and die witnessed "near resurrections," in the words of Elliott Joslin. These early patients were pioneers—and optimists. "Up until then, serious diabetics hadn't survived, so everything was new. This was the first time people were living with diabetes," Bliss says. "Most people thought so long as they were reasonably sensible diabetes wouldn't be a problem. The symptoms could be erased." Research, Bliss says, nearly came to a halt in the 1920s and '30s.
But for all the excitement, insulin was a treatment, not a cure. After the initial elation of the discovery wore off, people realized that they still had a long, difficult road ahead. Taking insulin was a tremendous struggle, from the monitoring to the adjustment of dosage.
Sixty-seven years after a doctor told her she would never survive past her teens, LaDonna Schoengarth is living an active and relatively complication-free life. Though she underwent quadruple bypass surgery in 2002, today she still works out three times a week. "I do that faithfully," she says. "The first week I thought, Are you crazy? But after I got going, I don't think I could do without it." Schoengarth credits her longevity to the support of others. She attends diabetes clinics and support groups in her area and wrote a diabetes cookbook for her hospital. "They say knowledge is power. Getting involved and going to one of these clinics is important," she says. "It was helpful for me to share that with others."
With reliable home blood tests still more than half a century away, people typically had to test their urine for sugar up to four times a day. Under ideal conditions, this took at least a quarter of an hour. A dropper full of urine had to be mixed with a teaspoon of a special solution in a test tube and heated in boiling water for 3 minutes. The process wasn't just time-consuming, it was logistically difficult: People had to plan their days around access to boiling water, not to mention testing supplies. And all this work resulted in readings that were maddeningly vague, with none of the specificity of today's blood glucose monitors.
Still, the urine testing was child's play compared to insulin injections. The introduction of insulin marked the first time injections became a routine event and the first time needles and syringes saw wide use outside of a hospital. "Many doctors worried that patients placed in charge at their homes with dosing the correct amount of drug and administering their own injections would make potentially lethal mistakes," Feudtner writes in Bittersweet. The fears proved unfounded, but injections were still a major challenge.
"Just don't eat sugar." That was the only rule doctors gave Richard Vaughn to control his type 1 diabetes. So for years Vaughn stayed away from all sweets—but he lived off carbohydrates. "I ate hundreds of carbs every day. From the mid-'40s to the mid-'80s, I ran high blood sugar." All that changed when Vaughn learned about carb counting. Sixty-three years after his diagnosis, he says his diabetes is under control, thanks to his diet, blood glucose monitoring, and insulin pump. Despite what he calls minor complications, Vaughn, a retired college professor, says he is healthy. He walks 3 miles a day and enjoys doing carpentry work around his house. "I truly feel I am blessed and that I have very good health," he says. "There are very many nondiabetics who have health problems much worse than mine."
By today's standards, the glass, rubber, and steel contraption once used to inject insulin several times a day is like something from a horror movie: The needles alone had to be wide enough to slip a thin piece of wire through to keep them from clogging. "These are big honking needles," Feudtner says. "There ain't no disposable anything. It's really stunning." After each use, the entire apparatus had to be boiled or soaked in alcohol to sterilize it.
Minneapolis retiree Merilee Knoll, who was diagnosed with type 1 diabetes as an infant in 1949, still has vivid memories of the childhood injections her grandmother gave her. "The needles were kept in shape with a stone, and we had a thin piece of metal to feed through the needle and the tip to keep insulin flowing. We never had a spare syringe, and the needles came in a plastic holder that held two," she says. "When the last needle bent and broke it was time to get another set. When they broke off and were still in your skin, I did not like that."
Early insulin was sometimes of poor quality, and erratic potency could result in low blood glucose (hypoglycemia). The risk of hypoglycemia made it hard for people with diabetes to hold jobs, and contributed to a social stigma. "It was embarrassing to have episodes in front of my friends, at school, or anywhere. I kept my blood sugars higher in order to prevent them, but then we did not have good testing devices so it was hard to know where you were," Knoll says. "In those days I felt there was no recourse, there was no happy medium."
And as the first children with type 1 began living into adulthood, they learned even insulin shots and cumbersome urine tests weren't a guarantee of good health. Fred Whitehouse, MD, now a doctor at Henry Ford Medical Group in Detroit, began his career making rounds with Joslin at Deaconess Hospital in Boston in the 1950s. The patients Whitehouse saw as a young intern were no longer dying. Instead, they were showing up with a host of less straightforward complications. "By the mid-1940s, it was well-known that there were problems with the eyes and kidneys and nerves," Whitehouse says. "It became apparent in the 1950s that heart disease was a problem, too."
Over the course of 65 years, Barbara MacDonald went from injecting insulin with thick glass syringes to using an insulin pump. "I can eat more things. I have better control of the insulin," she says of her diabetes management using the gadget she calls the most helpful recent innovation. Though MacDonald, a retired administrative assistant, has had some complications—she lost three toes to neuropathy and underwent triple bypass surgery—she's positive about the success she's had with diabetes. As for others with fewer years behind them? "I hope they won't be afraid or feel they're less because they have it. I think that's something I had to fight. I felt that I was less than everybody else," she says. But that feeling didn't hold her back: "I did anything a normal kid would do. Not much stopped me."
Whitehouse says the early optimism of patients and doctors was dampened by the realization that they had just scratched the surface of an incredibly complicated problem. For people with diabetes, the news that they weren't out of the woods could be a bitter blow. "They told everyone, 'You won't be around to see your graduation, your wedding, children, work, retirement, grandchildren,'" Knoll recalls. "This gave the impression, 'Why try anyhow? I'll be dead in a few years.'"
The response—driven largely by patient advocacy groups like the American Diabetes Association (ADA), founded in 1940—was a new push to understand the complications associated with diabetes and how to grapple with them. Alongside the focus on new technologies and treatments came a simple idea that diabetologists like Elliott Joslin—who died in 1962 at the age of 92—had been advocating since the turn of the century: Empower patients to take control of their treatment, and their results would improve. "What I think was a great revolution in diabetes management took place in the '70s with serious diabetes education," says Bliss.
It was an era of dramatic change as advocates pushed to make information more readily available to health care providers and patients alike. Diabetes educators began helping patients help themselves. Says Bliss: "They realized treating the disease wasn't just about a doctor writing a prescription. You had to help the patient take control." In the past decade, the Internet has once again revolutionized the lives of people with diabetes, who are no longer isolated and uninformed. "Since the Internet came along and information is so readily available, diabetics are getting a better picture of what can be tried with their own disease," says Knoll. "It's nice to know you are not alone. Until the Internet I never knew there were so many older diabetics alive today."
Research has also made considerable leaps. The difference between type 1 and type 2 diabetes was defined in the 1950s, helping doctors refine treatments. Insulin itself got better, evolving from early products derived from pulped pig pancreas to synthetic human insulin produced in test tubes (including the first practical usage of recombinant DNA technology). Slowly, doctors and scientists developed specific treatments for complications—laser therapies for the eyes, for example—that made huge differences. "We've had a triumph over complications in the last 25 years," says Bliss. "It's not total by any means, but it's clear that we've really expanded the capacity of insulin-dependent diabetics to stay on top longer in life."
Years ago, Lynn Wickwire was a member of a national advisory board on diabetes, proclaiming to Congress the need for greater diabetes research. "I used to badger people and say, 'You need to study people who've had diabetes for a long time,'" he says. Now he's participating in one of the studies he advocated for: a look into why some people with diabetes live long and relatively complication-free lives. His take: "It is genetic, but it also is this mindset … I'm a glass-is- half-full kind of guy, and I hold the belief there's nothing I can't do." Wickwire, who works for a health care advocacy organization, balances his positive attitude with hard work, heading to the gym four days a week and golfing in his spare time. "I don't care what's going on, I'm going to exercise come hell or high water," he says. "Tight control matters—diet, exercise, and insulin. You have to constantly manage this disease. This is part of your life, so get on with it."
A lot of that progress is thanks to tools now considered almost commonplace, like home glucose monitoring. But many of the things people with diabetes now take for granted actually hit the market fairly recently. The invention of the first home glucose monitor in 1971 may be one of the most important innovations in diabetes care since the discovery of insulin. The device was 7 inches long, weighed 3 pounds, and was about as thick as a transistor radio. It had to be plugged in to work. Called the Ames Reflectance Meter, it used light to read special strips of paper coated with chemicals that required what the directions called "a large drop of blood." A doctor with type 1, Richard Bernstein, MD, was the first person to test it. But the idea of home glucose monitoring met stiff resistance from hospitals at first, arguing that lab tests' superior accuracy trumped the convenience of glucose monitoring machines. (They also stood to lose lucrative lab testing fees.) Until the late 1980s, monitors were only available by prescription. In 1986, the ADA, the U.S. Food and Drug Administration, and the Centers for Disease Control and Prevention issued a statement in favor of home testing. Since then, the glucose meter has shrunk to the size of a child's hand, and innovations such as continuous glucose monitors have made further strides.
Easy, convenient monitoring has had a tremendous impact on quality of life. On a Tuesday evening this summer, 85-year-old Rounds went to see an outdoor big band concert in nearby Fort Worth with his wife and children—and two grandchildren. Says Dorothy Rounds: "We wanted to eat on the lawn, and being able to take a test kit anywhere you go means my husband could just fill his syringe and picnic with everybody else."
Yet the incredible advances in understanding and treating diabetes in the past 60 years sometimes obscure a reality doctors and public health officials are increasingly grappling with. A century ago, diabetes ranked with diseases like polio and tuberculosis as a fatal, uncurable illness. But while medical science has all but eliminated TB and polio, diabetes has frustrated generations of scientists looking for a cure. "[With] polio you had a bug—they found out it was a virus," says Detroit physician Whitehouse. "There isn't any bug in diabetes."
Not only that, but the incidence of diabetes has grown exponentially since Diabetes Forecast first rolled off the presses. Part of the explanation is a happy one: Insulin made it possible for people with type 1 to survive and thrive, meaning there are far more people living longer with the disease. But the vast majority of the growth is new cases of type 2, in part as a result of changing lifestyles worldwide. According to the International Diabetes Federation, diabetes care accounts for between 5 and 10 percent of the world's health care budget. "We're dealing with an epidemic," says Bliss. "In terms of the demand on society's health care resources, diabetes is much more serious than it was in 1920. It's a whole new chapter that poses old and new problems."
Additional research by Katie Bunker and Tracey Neithercott.
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