June 28, 2016 -- At least 85 people and counting are managing their type 1 diabetes with an artificial pancreas system they built themselves.

Dana Lewis is one of them.

The Seattle-based data analyst created a system with her husband Scott Leibrand, a computer network and systems engineer, in 2014.

Since then, she rarely has emergencies where she has to eat carbs because her blood sugar drops a lot. With that peace of mind, she sleeps better at night.

The system “has completely changed my life with diabetes,” Lewis says. “The obvious outcome is improved blood glucose, but the reason I originally started it is I wanted the freedom and the safety to fall asleep every night and not worry about dying in my sleep.”

Lewis belongs to a growing number of people hacking into and rigging up their monitoring and insulin delivery devices, called the “We Are Not Waiting” movement. Rather than wait for the FDA to approve available technology that can improve the quality of their lives, the scrappy group of movers and shakers is coming up with its own innovative solutions for managing various chronic conditions.

“The We Are Not Waiting movement is patients saying, you [FDA and manufacturers] have to make this possible, but if you’re not, we’re not going to wait,” Lewis says.

And now, they have some research to prove that their devices work.

Eighteen people who built their own systems were included in a study run by Lewis and Leibrand that they presented earlier this month at the American Diabetes Association’s annual meeting held in New Orleans.

The first-of-its-kind study showed that for people using the artificial pancreas, their blood sugar was more often within the goal range, their A1c (average blood sugar over a period of months) was lower, and most participants slept better. All had previously used an insulin pump and monitor to control their blood sugar levels.

Although promising, more research needs to be done with larger groups of people to know if they truly perform better.

“Users caution that DIY APS implementations require significant effort to build and maintain, and pointed out that these systems cannot be considered a 'technological cure,' but were extremely satisfied with the 'life changing' improvements associated with using an APS,” Lewis and Lebrand wrote in the study.