The Type I Diabetes DIY Movement That Will Not Wait

A person living with type one diabetes often feels as if their condition dictates every aspect of their life. While, in their view, regulatory bodies and device manufactures have been slow to find a real, lasting cure for type one, the people struggling to live their lives with it have taken matters into their hands.

While regulators have said miscommunication between regulatory bodies and manufacturers has resulted in delays, manufacturers researching and developing the technology are doing their best to be the first approved.

The movement of diabetes patients known as We Are Not Waiting has encouraged those struggling with type one to “hack” or build their own devices to find the right insulin dosages and rates for them. The number of people using these technologies is growing rapidly.

Although using your own device carries risks and has not been approved by regulatory bodies such as the Therapeutic Goods Association in Australia or the Food and Drug Administration in the United States, there have been positive results in studies on the users.

Still the people who hack, build, and use their own devices do so at their own risk. These practices pose many concerns for healthcare professionals, and it is generally suggested that people who augment their own devices should regularly see a diabetes healthcare professional.

Closed Loop Systems

One of the biggest complaints of people suffering with type one diabetes is the prolonged development of a closed loop pump system, or an “artificial pancreas” that communicates glucose levels to the insulin pump without having to manually dose the insulin. This is where the ingenuity of necessity comes in. Users with type one diabetes are closing the loop themselves.

With open source platforms, the knowledge to make these two devices communicate has spread. People in the community have the mindset that they are entitled to treat themselves how they see fit—by developing new solutions and sharing them with people who also have type one.

At this point, there is only a “hybrid” closed loop system. The Medtronic 670G is only available in the United States. It is a hybrid system because, although the pump and glucose monitoring device communicate, the user has to control insulin doses themselves. This technology and others like it are often very expensive and proprietary, only communicating with the manufacturer’s products, which also sets limitations on the product.

Not only do manufacturers eliminate the option to use the sensing device of the person’s choosing, the factory settings prevent users from customizing the device to establish a personalized glucose range, or set personal alarms.

Some of these devices are not being used to their full potential, and the We Are Not Waiting Movement aims to give users with diabetes the ability to automate their devices with a computer or phone. That way, CGM data is communicated and the insulin is delivered accordingly.

Open Source Projects

The first open source do-it-yourself project was Nightscout, otherwise known as “CGM in the Cloud.” This resource gave people with type one the ability to monitor their CGM through a secure website. Originally developed by parents of children with type one, the technology also creates graphs and reports using the data attained from monitoring glucose levels.

DIYAPS, or do-it-yourself artificial pancreas systems, are also available at no cost from open source projects. There are currently three of these hybrid closed loop systems available.

OpenAPS uses a continuous glucose monitor and connects it to the insulin pump through a small computer that can be monitored and controlled by a phone. AndroidAPS on the other hand, sends glucose information straight to an Android and communicates with the pump through Bluetooth technology. A similar technology is Loop, iPhone’s receiver for glucose monitoring also communicates through Bluetooth with a communication device called RileyLink.

Helping Patients

A specialist firm that works with medical negligence claims related to diabetes mismanagement recognizes health professionals cannot recommend DIY technologies to people because they have not been through the regulatory process.

Yet, there will always be people who accept the risk and choose to take a DIY approach. The specialists recommend continued support from healthcare professionals. Understanding the medical, legal, and professional issues is crucial, the law firm states, so professionals can support those with diabetes in whatever they decide to do.

Patients believe in their right to care for themselves, and they have built their own closed loop systems and shared the information across the internet. Although these systems are not approved by regulatory bodies, they have provided some relief to those suffering from the condition. Education is key. By knowing the risks and understanding the technology, patients can choose whether they want to build their own closed loop system until manufacturers and regulators can provide this technology to the public.