Live with it

Live with it

Over the years, we have reviewed countless drugs and devices. We have seen the introduction of several innovations which have helped make diabetes management easier for the patient. It seems like every year there is another way cool whiz bang and now cloud enabled device. Given that drugs take longer to move from the pipeline to the front lines this pace of innovation is slower but still present. However, what we haven’t seen, or at least not consistently, is an understanding of what an average patient goes through each and every day.

Now we are not talking about the 10% of the patients who are actively engaged with their diabetes. Nor are we talking about the 20% of patients who will never be actively engaged. No, the folk we’re talking about are the 70% of patients in the middle, patients who know they have diabetes, they know it needs to be managed. Yet for this group the motto is “I want to live with my diabetes not for my diabetes. I want diabetes management to part of my life but not to run my life.” This is the group of patients we think about every day and by our way of thinking this is the group drug and devices companies should think of when developing new drugs and devices.

The biggest problem is it is this group of patients who concerns fall on deaf ears. Since they are not actively engaged with their diabetes and not overly vocal companies tend to listen to the 10% of patients who are actively engaged. This group is very vocal because they get it already. Ironically this actively engaged group also does not listen or understand why this larger group of patients is not actively engaged. They tend to be very provincial thinking there is something wrong with these patients because they aren’t actively engaged.

Now there is actually a very simple solution to this problem, live like a person with diabetes for two weeks. Diabetic Investor has always had a great deal of respect for companies which have their employees use the devices they make even if they do not have diabetes. Obviously, this cannot be done for drugs but it can be done for the devices that deliver some of the drugs. Perhaps this experiment would give these employees who do not have diabetes a better appreciation for what a patient goes through each and every day.

Think for a moment how this would change their thought process. They just might find it’s not a bundle of fun to test their glucose levels 4 times per time. Or worry about every meal they eat. They might just learn that diabetes is not just managed by the patient but their family too. Try and imagine what it’s like to sit down with your children or spouse and explain to them what they must do during a hypoglycemic event. We’ve said it before and will say it again managing diabetes is a job, a job with no off days. This is true regardless of which therapy regimen a patient follows.

Even worse there are few outward rewards for the patient who does the heavy lifting. It’s not like losing weight something which people notice. A well-managed patient does not walk into a room of friends who say “Hey great job your A1c is in range.” From the moment, a patient is diagnosed they are told what to do, when to do it often times without being told why they should be doing it.

There is no way a person who does not have diabetes can understand the psychological toll diabetes management brings. How for many of us it would be great if we could take a day off, not worry about what we eat, if we have all our stuff with us. The reality is for the vast majority of patient’s diabetes is something they would rather not have in the first place. This is why studies have shown that patients would sacrifice years off their life expectancy rather than do all things they are told to do. Each glucose test, each pill they swallow, each insulin injection is just a reminder that they have a chronic disease. A disease they would rather not have in the first place. A disease which even when well managed offers no outward rewards or acknowledgment.

Let’s go back to our weight loss example, think of how great it feels when someone acknowledges the effort. How great it feels when you walk in that room of friends and they say; “Hey you look great keep it up.”

People with diabetes are not robots they are humans with emotions. And for most patients these emotions play a major role in their diabetes management. They are not like the 10% who get it and will do what they need to do because they have become enlightened and educated.

Perhaps the best way to think about this is the millions of people who continue to smoke. There is no dispute that smoking is not good for your health. Yet millions of educated people still smoke. Why? Because they enjoy it, even with all the well-known issues they still smoke. Even as cigarette taxes have gone up, even when most states don’t allow smoking indoors, even with warning messages on packs of cigarettes millions still smoke. Today there are drugs, patches and smoking cessation programs but millions still smoke. It’s well documented that a person who quits smoking will not just improve their health but save money, lots of money. Yet millions still smoke.

Diabetes is the seventh leading killer. The complications from poorly controlled diabetes are well known. Today we have some the best drugs and devices ever. So why then is the average A1c nearly 9%? It cannot be these people are stupid. The answer just might lie elsewhere and perhaps if more people understood what it’s like to live with diabetes they would listen more attentively. They would not just listen to the 10% who already get it. They would treat these people as people and not robots.

As Momma Kliff used to say; “There is a huge difference between listening and understanding.”