Over the last decade in endocrine practice I have had the opportunity to speak to many individuals and groups of individuals with type 1 diabetes (T1D). I sometimes ask: “What messages were you given about diabetes when you were first diagnosed?” The responses often speak of the burden of life with T1D: “I was told I would become blind if I couldn’t control my sugars.” “I was told I should never have children.” “I was pretty sure I’d be dead by the time I was 50.” These responses also reveal the negativism of our profession toward this condition. This negativism can only be counterproductive.
It’s not that “bad outcomes” don’t occur in T1D. Unfortunately, we all still see patients who have suffered dreadful complications. Indeed, I think that students and residents believe that T1D almost inevitably leads to disability. Yet we know that these complications are potentially preventable through good control of blood glucose. No wonder the relationship between physician and patient has been fraught with blame. “I lied about my sugars, because I knew my doctor would be angry if I said how bad I’ve been.”
Yet having the power to affect the outcome of your own medical condition is a mixed blessing. Sometimes we ask another question in clinic: “If you develop a medical condition, would you prefer a condition for which you take a set treatment that might or might not work, without reference to how hard you try? Or would you prefer a condition with an outcome almost wholly dependent on how well you learn to adjust your own treatment and live with your condition constantly in mind?” In theory, having the opportunity to cope well and positively influence prognosis is good. However, it comes with a heavy burden of responsibility. If a person with diabetes suffers complications, he or she must have been a “bad” diabetic.
The problem is that it is just not that easy to be good at glucose control in insulin-deficient diabetes. In a way it seems pretty straightforward. After all, people with T1D don’t have a metabolic syndrome; they are not particularly hypertensive or dyslipidemic until or unless nephropathy develops. In fact, people with T1D lack only the ability to make insulin. In most other conditions of hormone deficiency replacement is simple. But of all the hormone replacements we use, insulin is by far the most difficult to manage. Not only is normal insulin secretion a very intricate and precisely regulated function, but there is a very narrow margin for error. For many patients with T1D, the disruption and danger of hypoglycemia outweigh the potential long-term benefits of good control.
For many years, people with diabetes have lived with guilt and complications, in large part because the tools that they were given to control blood glucose forced them to choose between hypo- and hyperglycemia. Fortunately, the tools we can now offer to our patients are improving by leaps and bounds, and the philosophy of diabetes care is changing. Diabetes educators, including physicians, understand that it is all very well for us to be experts, but it is the patient who must become expert in self-management. The doctor cannot tell the patient how much insulin to take every day and expect any reasonable result. This approach only leads to more hypoglycemia. We realize that our job is to help patients understand how best to use insulin in a flexible fashion to keep good blood glucose control through the course of a naturally variable schedule of food and activity.
The three articles on T1D in this issue will explore this new and more positive approach. What better than to forestall the condition altogether? Dr Metzger’s article discusses past, present, and future options for preventing autoimmune loss of beta cell function. The first article by Dr Fung and colleagues outlines methods for more physiological use of insulin to achieve better and safer glucose control. The second article by Dr Fung and colleagues explores the phenomenal success of the Edmonton protocol for pancreatic islet cell transplantation, which has sent waves of excitement through the diabetes community. The UBC Islet Transplant Program described in this article has treated 12 patients to date.
These days, when I see a patient with newly diagnosed diabetes, I can honestly give a message of hope.
—Clarissa Wallace, MD, FRCPC
Royal Columbian Hospital, New Westminster, BC
Dr Wallace has accepted payment for speaking and honoraria for attendance at consultants’ meetings from all of the major pharmaceutical firms involved in diabetes care, including Novo Nordisk, Eli Lilly, and Aventis.