The Diabetes Dilemma
Doug Philp is caught between a rock and a hard place. The 37-year-old president of the Canadian Diabetes Association (CDA) can and does wax eloquently about recent advances in diabetes care. But, every time he does, someone somewhere seems to think he or she’s got one less thing to worry about. “I’ve gone on door-to-door campaigns,” Philp says, “and a lot of people say, ‘I thought diabetes was taken care of. You’ve got insulin, haven’t you?'”
Indeed, yes. As every schoolchild knows, Banting and Best discovered insulin in 1921 – it’s the biggest medical story in Canadian history – and it’s led people to assume that diabetes has been cured. “That’s a misconception a lot of people have,” Philp says. “All insulin does is keep you alive. In fact, prior to the advent of insulin, diabetes was a more certain death sentence than AIDS.”
What it comes down to, Philp says, is that “diabetes is well known, but it’s not known well. It seems like everybody knows somebody with diabetes. But very few people have even a basic understanding about what it is, how severe it is, and what it’s doing to individuals, and to our economy and our society.”
It’s an uphill battle, he concedes. “For e general public to perceive something as a public health issue, it generally has to be scary, like mad cow disease: `Can I get that? If I don’t think I can, I’m not going to be concerned about it.’ With diabetes, most people seem to think that if they scrape the icing off their cake – their great-aunt always did that – then it’s manageable.”
Philp’s own knowledge of insulin and diabetes wasn’t much better than anyone else’s, he admits, until 11 years ago. That’s when he discovered that he had developed Type I diabetes [see Symptoms of diabetes) Overnight, he was insulin-dependent, facing a lifetime of blood-glucose monitoring and insulin injections.
“If I go off insulin today, I won’t live through the year,” he says. “It simply allows me to stay alive, and then I manage the rest of my lifestyle to stay healthy — my activity and my diet and my blood sugars.
“A lot of people are looking for a pill they can take in the morning that makes them perfectly healthy, but that’s not how our bodies work. We need to manage our diet and our activity, and a lot of people don’t want to do that. They don’t have time or they’re working too hard, or they don’t have the motivation.”
In coming to grips with his own diabetes, Philp learned a lot about what he calls the dichotomy of the disease. “We’re facing epidemic growth of a disease that’s already at epidemic proportions. At the same time, with the right tools and knowledge, it can be very manageable. The problem is, you have to know you have it. You have to have access to those tools and that knowledge, and you have to have the desire to apply it. So, the good news is, diabetes can be very manageable. The bad news is, an awful lot of people can’t [manage their disease], or don’t.”
Donna Lillie, Director of Research and Professional Education for the CDA, agrees that people still aren’t getting or reacting to the message. Diabetes is a huge public health issue, Lillie says, “that we absolutely have to get a handle on.”
That was a message that came through loud and clear at the national diabetes conference in Ottawa in May – that diabetes has to be perceived as a big problem by every interest group, including government, the public at large, and, Lillie says, “certainly those people who don’t yet have the disease. That this sense of risk has to be reinforced.”
After a good number of years working in “the diabetes world,” Lillie believes the message about diabetes should be perfectly clear, even simple, yet it’s apparently not reaching people the way it should. Her biggest fear is that, “all of a sudden, we’re going to turn around with huge numbers of people with diabetes and say, ‘Why didn’t somebody tell me this was happening, or that we were going to get to this point?’ I hate to think we’re going to go that far.”
Of course, there’s nothing like a good crisis to wake people up. “Isn’t it unfortunate that things have to go that far? That there are very good ways we can prevent or delay Type II diabetes and that you can have a tremendous impact on it in this country, and on this population, as we age. We can look after people better without having all the complications of diabetes.”
Whichever type of diabetes you have, the key to proper management is, to begin with, education. Learn as much about your illness as you can. Ask your doctor for a referral to an endocrinologist or certified diabetes educator. Some hospitals have diabetes education programs, which are covered by provincial medical plans and health insurance; there are also private education clinics, though their services aren’t usually covered by provincial insurance plans.
The second factor in diabetes management is control. The nine-year Diabetes Control and Complications Trial (DCCT), which reported its findings in 1993, clearly demonstrated that intensive treatment of individuals with Type I diabetes delays the onset and progression of long-term complica-tions. Since that landmark study was completed, other studies have suggested that similar conclusions can be drawn about the effects of intensive control in Type II diabetes as well.
What the studies mean, in short, is that people with Type I diabetes have to maintain a program of careful monitoring of blood sugars and regular insulin injections; in Type II diabetes, it means careful monitoring of blood sugars and strict attention to weight, diet, exercise and nutrition. According to Montreal endocrinologist Jean-François Yale, if people with diabetes are screened for complications (such as retinopathy, an eye disease common in diabetes patients, and kidney failure) on a regular, periodic basis, the onset of complications can be postponed, sometimes indefinitely. “If we intervene very fast, we now have very effective means of preventing them,” he says. “Laser therapy in the eyes, for example, can stop the progression of eye disease, if it’s started early.”
A World Health Organization study released in the spring observed that people are, in general, living longer. At the same time, the WHO document said, it’s one thing for all of us to be living longer; it’s quite another if we don’t have quality of life. Then it’s a very difficult struggle. “And that’s the message with diabetes,” Lillie says. “We know that people can live a better quality of life if their diabetes is managed well.”
The problem is, a huge percentage of people with diabetes don’t know they have the disease. As Maureen I. Harris, Ph.D., observed in a 1993 paper in Diabetes Care, “It is apparent that the prevalence of undiagnosed diabetes is about equal to that of diagnosed diabetes; or undiagnosed diabetes represents [approximately] 50 per cent of all diabetes in the U.S. population. This is true for each age group, sex and race.” In Canada, the situation isn’t as dire (a recent U.S. report noted that the incidence of diabetes in the States is at its highest level ever), but it is serious. The CDA estimates that 1.5 million Canadians have diabetes, while half that number again – some 750,000 people – have diabetes and don’t know it. Why? The leading reason by far is that most people (at least with Type II diabetes, which comprises about 90 per cent of all cases) aren’t symptomatic until something else – their kidneys, their heart, their eyes – goes wrong. “We know that in many instances, people are only just being diagnosed who probably have had diabetes for five to seven years,” Lillie says. “That means the damage has been done.”
Philp considers himself lucky, given the damage he could have suffered. Because of his involvement with the CDA, he’s enjoyed access to people who’ve educated and counselled him and made him a better diabetes self-manager than he might otherwise have been. So far, at least, he hasn’t suffered any of the complications of the disease, but he has met far too many people who haven’t been so lucky: “I’ve met people who’ve had limbs amputated, gone blind, are on dialysis, have had organ transplants, heart attacks, stroke.”
Lillie and her colleagues see people “all the time” who’ve been diagnosed with diabetes only because other problems led them to seek care: “They’ll go to the eye doctor, who’ll notice enough changes in the eye to say, ‘How long have you had diabetes?’ And that poor individual does a double take and says, ‘I don’t have diabetes’.”
Even among the diagnosed diabetic, there’s often a lamentable lack of understanding about the disease, a situation that may be compounded by healthcare professionals who “may not be fully up to speed on the major issues and the severity and impact of diabetes,” Philp suggests.
“We know that roughly 70 per cent of people who’ve been diagnosed with diabetes haven’t seen a diabetes educator or been to a diabetes education centre, either for lack of access, whether it’s geographic or a waiting list problem. And 70 per cent of the people who land in an emergency ward because of diabetes, because of low blood sugar or complication, have also never been to a diabetes education centre.
“That may be because a physician doesn’t know about our support network in Canada or doesn’t think it’s important enough to refer his or her patient to it, or the person with diabetes doesn’t think it’s important enough to follow up.”
Those are some of the problem areas the national conference in Ottawa hoped to address. Representatives from industry, government, consumers and specialist groups – as well as a range of other healthcare groups, such as Heart and Stroke and the Kidney Foundation-studied – issues and developed strategies.
Among their recommendations were suggestions for improving access to care in every region of Canada, as well as a number of ways of improving data and information flow, both between health professionals and as public education.
Delegates also recommended the adoption of an idea that originated in the States: A screening program for people at risk of developing diabetes: Anyone over the age of 45 would be tested regularly (every two years or so) for diabetes. If they’re in a high-risk category they’d be tested more frequently.
The legislative response is still “a work-in-progress,” Philp says. Costs are still being worked out, but, “by capturing people with diabetes early, you’re spending a nickel to save a dollar. You’re doing screening and early education and early intervention, as opposed to doing all that as well as amputating a person’s feet or treating them for blindness.”
In the meantime, new treatment options are available – new drug options, new therapy options for the treatment of complications, as well as new research showing that the use of some cardiovascular drugs has a tremendous impact on lowering blood sugars as well.
On the surface at least, it appears people are more concerned about diet, activity and lifestyle than they were a generation ago. But Baby Boomers, on average, aren’t in very good shape, Philp says. “They’re overweight, entering their 50s and that’s where our big population boom in people with diabetes is coming from. They’re carrying too much body weight between their shoulders and hips. It puts them at serious risk.”
The growing incidence of diabetes is partly a reflection of our aging society. It’s also reflective of lifestyle, Lillie says: “There’s no question we’re living longer, but we’ve tended to decrease activity and gained weight, which just adds to the diabetes. That’s the lifestyle-preventative type of model that can be looked at that could prevent or delay diabetes long-term. If people were living a healthier lifestyle, there’s no question those strategies could have an impact.”