#WeAreNotWaiting: The Movement

For years, type 1 diabetics have been told that technology was the answer to their problems, that a solution could be found, that the daily hassles of managing their condition could be fixed by the right mix of hardware and software. Someday soon, just not yet.

The new hashtag, #WeAreNotWaiting, is for the diabetes community that has decided to take matters into their own hands. They’re developing their own apps and other platforms.

What is it?

For the people who have diabetes that are apart of the We Are Not Waiting movement, there’s no doubt  that hacking together their own hardware and software to manage the chronic condition is the only real way forward right now.

The movement came from frustration of the pace that technology to potentially revolutionize lives was being developed. Diabetes may be a pretty common, but managing it on a day-to-day basis definitely isn’t easy.

With type 1 diabetes, the body either doesn’t produce enough insulin, or doesn’t respond to the insulin it makes. The condition means regular monitoring of blood sugar levels through a finger stick test and then adjusting insulin level.

One way type 1 diabetics have to control their blood sugar levels is through an insulin pump. Instead of having diabetics manually inject insulin, an insulin pump can deliver the hormone directly into the body.


What could this mean for diabetics?

The We Are Not Waiting movement is also turning its attentions to closed-loop systems, where the glucose monitor and pump are able to communicate with each other to keep the wearer’s blood glucose more tightly inside the right range.

The brave new world of healthcare hacking still has its problems. One being that it’s outside the regulated world of medicine. Commercial devices and software used to manage or treat medical conditions undergo clinical trials to assess their safety and benefits, and have to be regulated by the US Food and Drug Administration. That means they take far longer to reach the market, and are far more expensive. It also means they come with reasonable expectations of safety among users.

For those developing their own homemade devices, there’s none of that. People writing code and publishing advice on how to build systems are not regulated. They can publish their source code, offer tips and advice to others about how to build devices, but that’s about as far as they can take it.

That means anyone who wants such a device has to build it themselves at home. They need to be convinced about how safe it is, and be confident they have the necessary skills to do so.

For now, the FDA is taking a wait-and-see approach towards homemade diabetic tech. That’s not to say the regulator doesn’t have its concerns about homemade tech.

What happens if the systems break down and users who haven’t had to inject insulin before aren’t confident enough to do so? But, it hasn’t taken any action against those that publish instructions on how to build devices, and has been actively engaging with the DIY community.

Instead, it’s likely that, much like in the software world elsewhere, the majority of people prefer to get black-box systems from a single commercial provider that provides support and updates they need along the way. Others, however, will remain part of the open source community, putting together new systems and sharing them with others on the same path, despite the risks. After all, they’ve waited long enough for the traditional channels to help them.