Tight control of Type 1 diabetes saves lives, but it's tough

Here's more evidence that for people with Type 1 diabetes, strict blood sugar control matters – in this case, it actually reduces the risk of early death. But another study reveals the grim reality: Those with the condition still die about a decade sooner than those without.

As someone who has lived with Type 1 myself for over 40 years – I was diagnosed in 1973, at age 9 – I can tell you that keeping my blood sugars in control 24/7 is incredibly difficult. And that's despite having the knowledge on how to do it, as well as the health insurance that covers my test strips and insulin pump supplies. Many others with Type 1 diabetes don't, which helps explain the gap between what the studies say is best practice and what happens in real life.

Back in 1993, the landmark Diabetes Control and Complications (DCCT) trial demonstrated what many in the field had believed but hadn't proven: If people with Type 1 diabetes strictly controlled their blood sugar levels shortly after being diagnosed they could often avoid the complications that high blood sugar can cause over time. People in the "intensive" treatment group for seven years had dramatically lower rates of eye, nerve and kidney damage.

After that study ended, most of the original 1,441 participants have been followed in their regular lives, under the management of their personal physicians. And intensive control is now urged for everyone.

The study published Tuesday in JAMA, the journal of the American Medical Association, shows that those people now have roughly the same level of blood sugar control, regardless of whether they were in the intensive or conventional treatment group in the 1980s. But the people who got intensive treatment decades ago were less likely to have died, with 33 percent fewer deaths.

The actual numbers of deaths were 43 versus 107. In both groups, the top causes of death were heart disease and acute complications due to either excessively high or low blood sugar levels.

The study is the first to show that tight control prolongs life in type 1 diabetes.

But another study in the same issue of JAMA shows that achieving that kind of control isn't easy. In a database analysis of all 24,691 adults in Scotland with type 1 diabetes from 2008 to 2010, researchers found that life expectancy was reduced by 11 years for men and 13 years for women compared to the general population.

So if we know tight control works, what's the problem?

"There continues to be inadequate access to advanced diabetes technologies, education and support from health care professionals and at times even family encouragement, which all need to improve," endocrinologists Dr. Michelle Katz and Dr. Lori Laffel from Boston's Joslin Diabetes Center point out in an accompanying editorial.

Indeed. From personal experience, I can add that controlling Type 1 diabetes is a tough job. Just this morning, my blood sugar was 211 mg/dl. That's too high. Recommendations vary, but in general blood sugar should never go above 140 mg/dl and should be lower in the morning.

Last night before bed my blood sugar was also in the 200s; I was working late, and stress hormones alone can raise blood sugar. So I told my insulin pump to give me a small "correction" dose to lower it. But I held back giving the full amount that my pump recommended because, as always, I feared over-correcting and dropping too low during the night. The fear of not waking up in the morning because of low blood sugar is a constant in the life of those of us with Type 1 diabetes, and it's one of the main reasons we struggle to stay in control.

A device called a continuous glucose monitor can help with that by constantly keeping tabs on the wearer's glucose levels and issuing an alarm if blood sugar drops too low. I wore one of those in 2008 and 2009, but stopped because it wasn't accurate enough and the need for constant calibrations drove me crazy.

I'm thinking about getting one again, but am not anxious to add a whole new layer of out-of-pocket copays to my already steep levels from other diabetes supplies. At least that option is open to me, but for so many it isn't.

As Katz and Laffel note, "Patients, families and the health care community await more steps forward." Copyright 2019 NPR. To see more, visit https://www.npr.org.