UK Patient Voices Winner 'Nerdabetic' Explains Diabetes DIY Technology

Chatting with T1D Advocate Kamil Armacki in the UK

DM) Hi Kamil. As always, let’s start with how diabetes came into your life…

KA) I have been a type 1 diabetic for just over 6 years now. I was diagnosed on the 4th of April 2012.

I went to my family doctor with some minor PE injury (I was 14 and passion for volleyball can quickly turn into injuries) and my mum just mentioned that I had lost a lot of weight recently, so my doctor took a sample of my blood for lots of tests. My blood glucose was about 590 mg/dL. My diagnosis happened in a middle of a huge life change as my family (me, mum, dad) were in a middle of moving from Poland to the UK. I was diagnosed about three months before our move and at that point, all the paperwork had been sorted for months and my diabetes wasn’t going to stop it — even though I had been in the hospital for about three weeks after my diagnosis.

Wow, you stayed in the hospital for a full three weeks?

In Poland, as soon as you are diagnosed, you basically ‘move’ to the hospital and go through this (in my opinion) comprehensive program which ensures that you and your family are ready to deal with everything. I was ‘studying’ diabetes books; I would have lessons with different nurses, my endo, and other HCPs. They would even do verbal tests and my parents were so nervous about them. My Polish health team was in touch with me after the move and the transition was incredible.

I am still the only person in my entire family with type 1 diabetes and nobody has type 2 either.

Give us a taste of the diabetes tech and tools that you personally use?

OMG, where do I start? So, I use a community open project system called Loop which automatically makes basal adjustments to keep me in range for as long as possible. This system uses an older Medtronic pump with RileyLink and CGM (Freestyle Libre with MiaoMiao Transmitter but recently switched to Dexcom G6).

Other than that, I use the ‘nerd’ classics like Apple Watch to do my boluses, and Amazon Alexa to check my glucose level. In terms of my family, my mum loves Nightscout and Dexcom share; she said that this is the one thing I need to have before studying abroad. But recently, we became IFTTT obsessed — that stands for “If This Then That,” and it’s an easy free way to get your apps and devices working together.

One very incredible connection is controlling lights in our home, and so my room lights and living room lights flash three times when I approach a low glucose level. IT IS INCREDIBLE. My personal favourite was the waffle maker integration — configured so the waffle maker in our kitchen would turn ON every single time I was approaching a low blood glucose level, so I could treat my hypo with a bad-ass hot chocolate waffle. I don’t recommend this, as it is not a ‘recommended hypo treatment.’ In fact, I had to turn this function off as it was actually relatively difficult to make waffles when you are low. {chuckles}

How did you first start using the open source, DIY diabetes technology and embracing #WeAreNotWaiting?

My journey with the #WeAreNotWaiting movement started about two years ago when someone mentioned it to me in a Facebook group. I only started researching this spectrum of devices properly when I got my first insulin pump, the Medtronic 640G, and I was blown away. About six months after that, I started using Loop (the iOS equivalent of hugely popular #OpenAPS). I couldn’t believe how incredible this DIY technology is and I knew straight away that this was something that is going to truly change my life. I have been fully embracing it ever since — mainly online on my YouTube channel, where I have been trying to explain complex systems like OpenAPS using as simple language as possible.

Diabetes technology is certainly changing quickly! Any observations on what you’ve seen since your diagnosis just six years ago?

In my opinion, the biggest change has been the change of patients and manufacturers mind-set from categorizing diabetes technology as medical devices to categorizing them as lifestyle devices. We no longer categorize our CGMs, pumps and meters as medical devices; they are part of our lifestyle.

Another huge change has been industry’s drive to lower the cost of our devices. Dexcom, Abbott, Medtronic are investing thousands into extending sensors, so we can refer to CGMs as a ‘necessity’ instead of a ‘luxury.’ This movement is only going to accelerate as CGMs are more popular and companies benefit from economies of scale and we can see further cost reductions.

What would you say about the differences in diabetes tools and care between the UK and US?

That is a very hard question. Let me start by saying that I don’t fully understand the US healthcare system. A private healthcare system is incredibly hard to get your head around for a European. In terms of technology, I think that diabetes technology (pumps, CGM) is a lot more popular in the US. This is just my personal opinion based on observations in the online diabetes community. In the UK, insulin pump funding is still incredibly hard to get. Also, I think the UK / European market has more choice when it comes to varieties of insulin pumps and CGMs compared to the US. This is probably because of FDA’s high level of regulation in the US.

How did you get started becoming an active content provider in the DOC (Diabetes Online Community)?

I didn’t know about the online community for a very long time. I only found out about it about two years ago. As noted, it started in various Facebook groups and other social media channels, where people would ask me lots of questions about diabetes technology like how to turn Freestyle Libre into ‘real’ CGM and it got to a point where I would answer the same questions multiple times a day.

So I decided to start a YouTube channel called Nerdabetic (previously Diabetic Energetic) as I noticed that there was a need for someone to try to explain some things about technology and help people realize that is it not so difficult. So I have been trying to explain various things from DIY Artificial Pancreas projects to Freestyle Libre with various success for about a year now, and I love doing my tiny bit for this community.

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What diabetes advocacy are you/have you been involved with?

Aside from my online efforts — I really enjoy making informative videos about diabetes technology for my YouTube channel! — I have been involved in a wonderful patients organization called the European Patients Forum (EPF). They work with patient groups in public health and health advocacy across Europe. I was invited to their Summer Training Course for Young Patient Advocates in Vienna, Austria. It was a truly incredible opportunity to meet amazing patient advocates from 23 European counties, including advocates with different chronic conditions (diabetes, hemophilia, Parkinson’s disease, etc.)

Congrats on that. In terms of diabetes, what do you see as the biggest overall challenge right now?

Funding. I know that this is a very basic concept, but sadly it is still true. Healthcare providers around the world need to adopt a long-term approach to funding. Countless studies show that increase in funding directly corresponds with a reduction of diabetes complications and our DOC needs to keep fighting for more funding.

What can the diabetes industry do better?

INDUSTRY NEEDS TO LEARN TO COMMUNICATE WITH US. Almost all companies from the Forbes Global 2000 list have feedback systems in place, and not a single diabetes company has that. These companies have decided to create a special department which has only job: listening to customers feedback. So, you can go to apple.com/feedback and suggests what you would like to happen with the next iPhone.

I believe that our community’s pressure on Apple is the reason why Abbott received permission to access iPhone NFC chip (currently, Abbott is the only company in the world that has this exclusive access). Imagine the same situation with Dexcom. We would be able to give our feedback on their G6 app — on sensor size, what we expect from their partnership with Verily and more. So to reiterate: THEY NEED TO LEARN HOW TO COMMUNICATE.

Obviously you’re a big fan of innovation, but how do we square that with access and affordability?

I am a big believer in Research and Development and long-term approach to things, so I strongly believe that innovation will allow companies to reduce CGM manufacturing costs, test strips costs and the cost of diabetes technology in general. We have already seen that happen with companies like Abbott. They have learned a lot from their CGM ‘Freestyle Navigator’ and used all of that R&D into developing Freestyle Libre, which is a huge hit worldwide, mainly due to the low price point. Libre has been a conversation starter in Europe, and it is now available in almost all European countries and is covered by some national healthcare systems.

Great to hear. What are you most looking forward to at the Innovation Summit?

Meeting with fellow members of the community. Being in the same room as some of the most influential members of our community is a huge honour and I am so grateful for this opportunity. I know that this is the place for all diabetes technology lovers and my glucose is already rising from excitement about this event and in-depth conversations with tech lovers.

Thanks for taking the time to talk, Kamil. We look forward to seeing you soon at the Innovation Summit!