Here’s a crazy thought: if I tell you that you are sick, you will be. Before you write off this notion, you have to accept that a lot of what happens between our ears determines the state of our health. The “placebo effect,” where more than half the time, even the act of undergoing some sort of medical care – such as a sugar pill, a sham surgery or even a doctor’s gentle words – can make us feel better. The expectation of getting better is harnessed to make us better. Crazy? Not quite.
To complicate things, consider the opposite – the “nocebo effect” – which is also at work. When patients in a clinical trial are told that a treatment could produce unpleasant side effects of a particular sort, those are the ones the subjects tend to report. Humans are very suggestible to both the good and bad effects of treatments. Unfortunately, there isn’t a lot of nocebo research because it isn’t considered ethical to test treatments to see how much harm they can cause. What little research there is, however, suggests that, like the placebo, a nocebo effect does exist and it can be a powerful determinant of health.
To me, the concept of the nocebo helps frame my thinking around medical labels, which are often too quickly dished out by our medical system and which also determine the type of treatment we get. The person who is overweight and eats poorly develops a malfunctioning metabolism and is thus declared a type-2 diabetic. That person might be healthy in every other way, but his wonky blood sugars now have a new label and the person is declared unhealthy with a dark cloud hanging over his head.
Such labels could be positive if they automatically set the person upon the road to health. Yet a lot of research on labelling, notably from other fields, such as criminal justice and mental health, demonstrates how negative labels can influence people’s self-perceptions. A medical label itself may or may not be helpful, but it most certainly leads to treatment, and in our medical system, that treatment is usually a prescription drug of some sort.
Some patients trying to figure out what is wrong with them may be grateful when their physician provides a label and a course of corrective action. But what if the prescribed road to recovery means the beginning of more problems?
Imagine you’ve just been declared a type-2 diabetic, a condition one typically develops as an adult, which is often due to (and hence largely controlled by) one’s diet and level of exercise. The disease is characterized by the body’s inability to process insulin; excessive weight, poor diet and genetics are all contributing factors. Type-2 diabetics have difficulty processing blood sugars. Yet what actually happens is that the blood sugar level, and the eagerness to ‘control’ it, becomes a disease in and of itself. High blood sugar, like high blood pressure and high cholesterol, is only a worry because it is a risk factor for future disease – one that may lead to other medical complications down the road, such as blindness, kidney failure or amputations, which may occur with severe diabetes.
Any newly diagnosed type-2 diabetic would be offered dietary and exercise advice (both necessary and good), prescription drugs (somewhat helpful to control blood sugars, but not all that helpful in preventing complications) as well as blood test strips and glucometers (to measure their blood sugars). These new patients would be taught to pierce their fingers, sometimes several times a day, in order to test their blood sugars.
While a person’s blood glucose level goes up and down throughout the day, new diabetics need to learn how to find their personal ‘normal’ range and then modify it. The Canadian Diabetes Association recommends that all diabetics should aim to get their blood sugars down below seven percent hemoglobin A1c which is a laboratory measurement of blood glucose. Some research has suggested that trying to drive down your blood sugars – using drugs or insulins – can lead to hypoglycemia, or dangerously low blood sugars, which can sometimes be fatal.
Here comes the million-dollar question: How often does this self-testing need to be done? That question is at the heart of a controversy and the backdrop to the belief, held by many physicians, endocrinologists and diabetes educators, that patients with diabetes could significantly benefit from tighter control of their blood sugar. Which is to say more and more frequent self-testing.
Could the label of type-2 diabetic, combined with recommendations to frequently self-test, act as a nocebo, inducing fears of mortality and making people sicker? The use of test strips in the population is skyrocketing and there are concerns that some people are testing their blood sugars as many as six or eight times a day, even when there is no medical rationale for doing so. There is some research emerging that indicates more frequent testing can cause greater levels of depression and anxiety and perhaps lead to worse health outcomes – not better ones.
This controversy came under the spotlight last year when a national group in the US that sets medical guidelines suddenly withdrew a diabetes guideline after research found that aggressive control of blood sugar could harm patients or even kill them.
So who and what are behind the push to test and retest our blood sugars? We know that repeated testing is very good for the multi-billion-dollar diabetes industry whose profits have grown enormously over the years as the numbers of people wearing the type-2 diabetic label continue to climb. We now have the industry-created term “pre-diabetes,” which, as far as I can tell, is a way to fear-monger people even before they are stuck with the new label. This rise in new type-2 diabetics is of great interest to marketers of all kinds, eager to exploit new markets for glucose test strips, glucometers, drugs, insulins and other diabetes paraphernalia.
The experts down at the Canadian Diabetes Association (CDA) admit there’s no clear idea of how often a person should carry out self-monitoring of blood glucose for patients who are not taking insulin. According to the CDA, “Self-monitoring should be individualized according to the type of treatment and level of control.”
This recommendation counters a report put out this summer by the Canadian Agency for Drugs Technologies in Health (CADTH), a publicly funded agency that produces weapons-grade evidence on the value of drugs and technologies. CADTH scientists determined the “routine use of blood glucose test strips for self-monitoring of blood glucose is not recommended for most adults with type 2 diabetes.” They even went on to say if you are not taking insulin, but might be taking oral antidiabetes drugs, self-monitoring will not lead to any better blood sugar control. Basically, you are wasting your time.
The Canadian Diabetes Association, despite some outstanding work supporting diabetes care in Canada, has a tendency to come down with an “industry-friendly” take on things, especially when drugs or devices (and the CDA’s funders) are involved. On other issues, the CDA lobby tends to align with its pharma funders, and we’ve seen it influencing provincial drug plans on a whole range of things, especially in trying to get public coverage for new drugs and devices like insulin pumps. It’s not like we haven’t seen this before: a disease group whose priorities get somewhat addled due to its pharma funding and which ends up adopting an opposite position to the best evidence available.
At the end of the day, I wonder what governments can do. Other researchers in Canada, who have examined spending patterns related to blood glucose test strips, have concluded that about half the patients using these test strips are considered at low risk for hypoglycemia and are probably using these strips unnecessarily. These researchers have come to similar conclusions as my own: that excessive testing of blood glucose in type-2 diabetics is costly; much of it is unnecessary and it’s probably harmful.
This might not matter if we weren’t in economic trouble everywhere you look, but the costs of irrational blood testing are staggering. With each test strip costing about one dollar, and with thousands of type-2 diabetics in BC, possibly testing themselves several times a day, the BC taxpayer is probably wasting in the neighbourhood of $50,000 a day on useless and likely harmful blood test strips. That amounts to about $18 million per year. In BC, the revenue paid out for blood test strips puts them in the top 20 most costly items on the formulary.
Doesn’t our health system have many other things we could spend $50,000 per day on?
Even with type-2 diabetes, we know nothing works better than proper diet and exercise so wouldn’t this wasted money be better spent on more exercise and diet-based approaches to staving off the ravages of diabetes? I think so.
The issue comes down to political will and my question is this: do governments in Canada have the courage to stand up and create policies based on the best evidence or will they continue to roll over and allow the taxpayer to get screwed by the interests of experts and disease groups?
In many similar situations, where there’s evidence of useless and potentially harmful healthcare spending, we all wish that our elected officials would look for the best way to use our healthcare dollars. In BC, with a $2 billion deficit on the horizon, you’d think our public decision makers might want to stop paying for test strips. That’d be a start, at least.
In the meantime, watch out for those labels. Make sure that any label that someone wants to apply to you doesn’t come with a downside. There are lots of nocebos out there waiting to make you feel worse than you already do.
Alan Cassels is a drug policy researcher at the University of Victoria and author of The ABCs of Disease Mongering, an Epidemic in 26 Letters. firstname.lastname@example.org