JDRF DIY Statement

JDRF UK have recently announced their position on DIY technologies, which are on the rise among the open diabetic community

The Type 1 diabetes charity says it acknowledges the rights of the diabetes community to use such tech systems, but it does not endorse these models.

Loop Hardware
Image Credit Diabettech.com

In its DIY Diabetes Technology Statement, JDRF UK said: “JDRF UK cannot endorse the use of DIY tech systems as these products are not regulated and the use of them may carry risks. The organisation, however, respects the rights of people with type 1 diabetes to choose treatments that best fit their needs and how they manage the condition, including the use of DIY technology.”

DIY homemade artificial pancreases have been created by tech enthusiasts for the past several years with a wider adoption as the hardware/software to do this becomes more widely available. The DIY solution utilises commercial available insulin pumps and CGMs using a third party device/phone to intergrade the two.

The use of these methods has allowed people to enhance their diabetes management and it’s estimated that there are over 100 people using this type of technology.

DIY Closed Loop Software

As yet there have been no official clinical studies of these DIY systems but JDRF states “There have been peer-reviewed presentations and publications on the results of DIY systems that have shown clinical benefit.”

These systems have led to improved HbA1c levels and reduced the time spent where blood sugars are out of range.

In 2017, JDRF announced its commitment to aid open-protocol artificial pancreas systems through the awarding of grants to support certain projects.

Important: DIY systems should and have only been used by people who have a stronger understanding of diabetes and IT. It’s not recommended to make any changes to your insulin pump or CGM as this could cause risk to your own health of those you are caring for.

Medtronic Closed-Loop Breakthrough

Medtronic, yesterday, announced it has received Breakthrough Device Designation from the US FDA for its Personalised Closed Loop (PCL) insulin pump system – currently in development.

The PCL technology is designed to automate insulin delivery in a way that is real-time, personalised and adapts to the user; very much similar to AAPS. The system will also provide insights and predictive diagnostics unique to the individual, with a goal of dramatically simplifying diabetes management.

The FDA Breakthrough Devices Program helps patients receive quicker access to new technologies. Under this program, the FDA will provide Medtronic with priority review and communication regarding device development and clinical trials; thus speeding up the time to get new devices to market.

The statement does not specify which devices will use the PLC system but based Medtronic roadmap and the given descriptions it is most likely going to be the 780G and/or 890G. The development of these, alongside the FDA breakthrough, should get these devices to market significantly quicker.

Click the link for the full press release: FDA PLC Press Release

New CGM from Ascensia and POCTech

There has been a recent announcement that a new CGM from Chinese company POCTech & Ascensia will be released at some point this year with clinical trials under way.

Ascensia have entered into a global alliance with POCTech with he CT-100 is already available within selected markets. Ascensia will commercialise and have distribution rights in 13 markets where POCTech does not yet distribute, They have also agreed to co-develop next-generation products which will build on POCTech’s existing technology.

Their first CGM available in these 13 markets will be the CT-100B using their ‘Unique 4 electrodes sensor’ to improve accuracy and reliability. A second feature of this CGM is that the transmitter has a replaceable battery. However, the drawback being that this needs to be changed at every sensor change which, at the time of writing each sensor only has a 7 day usable life.

I’m sure both the sensor life and battery replacement frequency are soft limitations and will be extended by the WeAreNotWaiting community much like the Dexcom G5 and G6 products.

No official pricing has yet to be released for the CT100B but rumour is that pricing will undercut the Dexcom G6 drastically ensuring a quick adoption in the CGM market.

Known specifications at present are:

  • 30mg/dL – 450mg/dL Sensor Range.
  • 7 Day Sensor Life.
  • 2 year Transmitter Life with weekly CR16320 battery replacement.
  • 2 year Receiver life with built in rechargeable battery.
  • Pricing: TBC

User Manual

Dexcom Day

So after giving in and waiting for the individual funding process/decision from the NHS Trust. We have decided to self-fund Dexcom for a few months to get a feel for it and get some numbers together to further help with the individual funding case with the Trust.

First impressions are really good, very simple clear instructions, very user friendly app which guides you through each step of the insertion and configuration.

William on the other hand was far from impressed about having this thing attached to his arm. No tears or major pain from the insertion just a little moan and manly complaining about what was now semi-permanently attached to his arm, nothing that a bribe of Calpol couldn’t resolve.

We are now two days in and hes accepted the fact that this is now part of him and will be attached to him for a very long time; i suppose its like a tattoo or piercing, slightly annoying and weird at first but you soon forget that its actually there.

The thing he has yet to adjust to is no longer having finger pricks to check his blood sugar levels, its been part of the routine for the last 6 months its hard for him to understand why we have stopped all of a sudden.

The Numbers at the moment are shocking, it seems like the week we decide to set this up is the week we are having numbers from hell even just looking at the times we would manually check. Hes just bouncing from high to low back to high. Some of these would have been missed without and has made me realise how many hypos/hyper’s we have actually missed especially as he has no awareness of what his bloodsugars are doing.

Williams blood sugar for the past 24 hours

We are trying not to micromanage or make any major adjustments over the first week to try and get a real understanding of what his blood sugars are doing especially around meal times and when he is at pre-school. Its making me see the real benefit of a pump too being able to temporary decrease/increase his background insulin when needed to keep his BS more consistent and i’m sure ill go into more details when we get the pump.

Here comes the TECH!

So after a few days researching which would be the best phone to use for looping i have been recommended a nexus 5x by a few people on the AAPSCombo facebook group, Thanks Guys and Girls!

The phone is a fairly decent spec for the price as I managed to pick one up on gumtree for £50 second hand after the first one i got from eBay had a faulty charging port. Bonus of this is the fully refunded me and I’ve kept the device, only looking around £20 to get this fixed to may use this as a standby device should anything untoward happen with the first.

  • Weight: 136g
  • Size 147 x 72.6 x 7.9mm
  • OS: Android 8.1
  • Screen size: 5.2-inch
  • Resolution: 1080 x 1920
  • CPU: Snapdragon 808
  • RAM: 2GB
  • Storage: 32GB
  • Battery: 2,700mAh

My plan is to get this setup ready for Dexcom(CGM) and Pump….just got many questions including the following:

  • Can AAPS be installed and configured without a Pump/CGM?
  • Can Nightscout be installed without a pump/CGM?
  • Does Nightscout work with just a CGM to log data?
  • What happens with AAPS when the phone goes out of range of the pump or CGM?
  • If doing a suspended/temp basal does it just revert this to normal levels if CGM data is lost or the pump looses connection with the phone?

I do have a million more questions that i’m sure ill get the answers too either by my own findings or the friendly people on various social media platforms, I’m keeping a track of these under a Q&A section of the blog which can be found here…

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