Wednesday, June 23, 2010

Death by Diabetes

The CDC reports that more than 70,000 people Americans die from diabetes each year, and it's currently listed as the fifth-highest killer in the States following heart disease, cancer, stroke, and respiratory illnesses.

But diabetes is under-reported in causing deaths, and one industry leader has pushed to change that in order to more accurately portray the impact of this chronic condition.

A recent Bloomberg BusinessWeek story (thanks for pointing me to this, @sstrumello) tells us that world-leading insulin-maker Novo Nordisk pushed the U.S. Congress recently to put a provision into the health reform law that requires coronors and doctors to more-frequently list Diabetes as a person's cause of death. That underestimates and changes the overall number-based impact of diabetes, one of the company's Washington D.C. lobbyists says, and having a higher death toll means more government spending and private funding for treatment, detection, and prevention of diabetes. Pending regulations this year will spell out how the new reporting law will be applied, such as when a patient dies from a D-Complication.

But how does the Diabetes Community feel about this, since we're the People With Diabetes who try so hard to lesson our chances of dying from this disease? What does this mean for our own advocacy efforts in trying to motivate the government and private sector to standardize benchmarks and make treatment tools more accurate? Must we die to prove a point that these changes are necessary?

If it's the Death By Diabetes standard that's being looked at more closely, maybe D-Advocates must also turn to these tragic deaths to make our points. Such as when a child or adult Type 1 dies because of a night-time Low that maybe could have been prevented if the insurance company had been more receptive to covering a Continuous Glucose Monitor. Or how a 20% accuracy standard could mean the difference between sleep or coma and death. Or when ketoacidosis claims one of us, and we point to how the BG Level Monitoring could have been better had software allowed us to combine the multiple devices from different company's. Maybe it's just recognizing that product inadequacies happen, and something not working isn't a consequence of "patient error." That a doctor's condescending attitudes or negativity could combine with the high costs of office visits in motivating us to avoid better management altogether, leading to death...

How do we report those of us who may die from a Low, in the middle of the night? Or a Low that causes something such as a drowning, or a fatal car crash? Do those instances have diabetes listed as a contributing factor, one that plays in to the overall numbers rather than just being a person who dies from "natural causes" or asphyxia or car accident? If reported accurately, would those figures then be lumped into data that might used to provide better insurance coverage for CGMs, which might monitor and prevent these tragic deaths?

I don't know what the answer is here. There may not be one, or it may be a huge gray area that no one really wants to talk about. But it's worth thinking and talking about, I'd say.

No one wants these scenarios to happen. But maybe, that's a way to tell the story about why these changes, these better standards, are just as important to us Type 1s as it is for those who fall into the "epidemic" known as Type 2. Maybe it means we do whatever we can in our daily lives for best management, attempt to sidestep that ultimate Death By Diabetes...

But should we fall by the D-Hand, we make sure our stories are told about how we died so the true face of diabetic death is known.

3 comments:

jimt1cgms said...

This is a very powerful post. It makes me sad to believe that more people have to die before we get better health care NOW.

Scott said...

First, excellent post! But I have mixed feelings about listing of diabetes as a cause or contributing factor to the cause of death. First, the motivation for doing so is purely to grow the bottom line, there is no other benefit or reason for doing so, and if you catch my Tweet today from Pharmalot this morning about Novo pulling Mixtard 30 from the UK market, we also see that there is every intent to eliminate all forms of biosynthetic human insulin from the market (in fact, Novo has admitted its goal to do so, see http://scr.bi/b2gDHf for that shocking admission). Second, it has long been acknowledged that the other common causes of death among PWD's are viewed as contributing factors anyway, even if diabetes is not listed as the primary cause of death. Would listing diabetes as a cause of death change anything?

Jeremy Engdahl-Johnson said...

What is the economic burden of diabetes? Proper mgmt and control could save 49,000 lives and $196 million annually. http://www.healthcaretownhall.com/?p=2699