Speaker 1: Having diabetes sucks so much. I went rogue. Yep. I hacked my insulin pump Type one, diabetes affects over 1.6 million a with 65,000 new cases each year, it can be stressful, exhausting and scary because of all the calculated decision making [00:00:30] you need to make with insulin. But a community of hackers has built a code that hacks into their pumps to make living with diabetes easier and, and more affordable. Now, before I get into the details, here's a quick background on my diabetes journey.
Speaker 1: In may of 2021, I was diagnosed with type one diabetes at the age of 30 years old type one means that the pancreas [00:01:00] doesn't produce insulin is a hormone that regulates blood sugar without it glucose levels in the blood rise and can cause some life threatening health complications. Luckily with the introduction of diabetes technology like continuous glucose monitors and smart insulin pens and insulin pumps, diabetes has become easier, easier than ever to manage. Those are all great innovations. Don't get me wrong, but I quickly got tired of all the decisions [00:01:30] I needed to make when I had to dose myself with insulin and the repercussions that followed. If my blood sugar went too high or too low causing me to feel sick. So this led me on a search for experimental treatment. That's when I discovered a community of hackers and thousands of others who felt exactly the same relentlessness as I was feeling. And it's more than that. It's an entire movement known as we are not waiting. They've created [00:02:00] an artificial pancreas that can be controlled right on your phone or watch. And it gives users more options for which insulin pump they want to use. I've been using one of these systems for six months and I haven't looked back. Plus my blood sugar levels have not been better, but there's a big catch here. These forms of treatment are technically legal and you have to build the apps yourself
Speaker 1: Before [00:02:30] I go any further. It's important for me to emphasize this is not medical advice. This is highly experimental and you take full responsibility for building and running this at your own risk. I'm showing you what is out there and my personal journey while trying it. So how do they do it? How does it compare to FDA approved treatments on the market? And why did a group of hackers offer up an artificial pancreas [00:03:00] as a gift to the world? Let's find out, oh, and I put links to all of this stuff down in the description. If you're looking for more information about diabetes or the systems I mentioned today, check those out.
Speaker 1: The system I use is called loop loop is one of a few open source applications that uses a sophisticated algorithm to predict and manage blood sugars loop creates what is called a closed loop [00:03:30] system. Hence the name, it involves a few different things. First there's the insulin pump. This pumps insulin into the body throughout the day. Next there's the continuous glucose monitor or CGM. This reads blood sugar levels. Every five minutes. These two devices combined with a sophisticated algorithm create a closed loop system, which can calculate how much insulin should or shouldn't get pumped based on current glucose readings, [00:04:00] it's as close as we've come to an artificial pancreas on conventional pump therapy or insulin by injection. The user needs to make a lot of decisions on their own. This system takes a lot of those decisions out of the user's hands.
Speaker 2: If their blood sugar's dropping, they have to lower their, their insulin on their own. Or if their blood sugar is going up after the meal, they may give extra corrections on their own. So they need to make measured [00:04:30] decisions, not based on any sort of algorithm or mathematical equation. Just sort of like by guesstimating. The nice thing about Luke is that it makes those critical decisions for you so that you don't overestimate or underestimate your ins insulin.
Speaker 1: That's Mary Rose, my diabetes educator. She helped me get set up on loop. When I told her I was switching over, she didn't professionally recommend it to me, but she wanted to make sure that I was safe because let me be [00:05:00] clear, Luke, isn't FDA approved. It was developed at a time when other closed loop systems didn't exist. In fact, it pushed big pharma to get there. And today loop still holds more customization control and insights on pump data than any other system on the market loop. Doesn't take away all of the decision making. I still need to log when I'm eating food on my phone, I just click the food button, log the amount of carbs. And then I have food type. And this is really [00:05:30] powerful. This goes based off of the glycemic index of food. Some foods will affect your blood sugar faster, some slower.
Speaker 1: So as you can see, I've got a lollipop, a taco, and a pizza. I can also click the plate. I have even more options. It lets me know that that absorption time is two hours and it will dose me with insulin based off of that glycemic index. Also unique to loop is the apple watch app where I can BOS for food. I can log my carbs or just view my blood sugars. Let's dive deeper into the app. Here's [00:06:00] my dashboard. And you can see right on top. That is my glucose levels. And then this other dotted line is where my blood sugar is going at the bottom. You've got active carbohydrates. This is a really interesting feature. You can tap in here. And it shows you all of the carb entries that made throughout the day. And based on the algorithm, it can estimate the amount of carbs that you actually ingested.
Speaker 1: So next time I get pizza. If I noticed the last time I went and there were way more carbs than I thought there were next time, I [00:06:30] know that I'll need to give myself more carb entry for that. We've got a button here. When I tap that it sets my goal, right, range to be lower for 20 minutes in anticipation of eating food. That way starts bringing my blood sugars down just to prevent them from going higher. When I eat and this heart button on the bottom, this is temporary overrides, and this is a very powerful feature. This is for when I'm working out, or if I'm drinking alcohol, these are all things that lower your blood sugar faster. What these [00:07:00] do is it allows me to set my target blood sugar range, higher or lower, and the amount of insulin that I'm getting, whether it's a percentage of more or less on other closed loop systems that are FDA approved, they only have like a couple overrides that you cannot customize. And lastly, where the match is is with insulin delivery. And as you can see, there's a bar graph in all these arrows. And this is because loop is adjusting. My basal rate insulin basal rate insulin is a base [00:07:30] level of insulin that I need to keep my blood sugar steady. Now this is unrelated to the insulin I dose for food, which is called a bolus. The ability to regulate the basal insulin is what makes a closed loop system so special because it can prevent high or low blood sugars
Speaker 1: Loop doesn't come from the healthcare industry. So I had to do some digging to find out where it came from. And I had no idea it would leave me to such an incredible [00:08:00] story and uncover more similar systems. Being used loop originated in 2015 by a man named Nate Ratcliff. He was confident that he could create a system that was stronger than any other on the market. At the time, his first automated system ran on a raspberry pie with the health of an algorithm called open APS or open artificial pancreas system project. This was built by Dana Lewis, Scott Libra and Ben west, and was already [00:08:30] being used by a small group of people. Next, Nate meets Pete schwa. Pete had a vision for a completely different system. One that uses Bluetooth to connect and control an insulin pump, which at the time was unheard of CGMs and insulin pumps use their own proprietary radio frequencies, which would later be decoded by a few others.
Speaker 1: Pete developed a device called Riley link named after his daughter Riley, who has type one diabetes. This device [00:09:00] could help transmit the frequency of a Medtronic pump to any Bluetooth device. Similar to Riley link. I've got the orange link pro. Now this is much smaller than the PDM. I used to have to carry around, to control my pump. Now I to carry this with my phone, but if I don't have this with me, then I'm outta luck. I can't control my pub. This set the stage for a mainstream loop and they could have never imagined the power of a movement called. We are not waiting
Speaker 3: It's people who [00:09:30] said we can do better. We can build systems that make it easier to manage type one diabetes. And so over time, people started releasing all of their work publicly and it just kept building and building and becoming more popular
Speaker 1: In 2016 loop. 1.0 was released to anyone who wanted it, but they had to build it at their own risk. Since then, thousands of people known as loopers [00:10:00] representing over 75 countries have adopted the loop platform as a treatment. Many of these people contribute to app updates and helping others get on the system. On top of that, I discovered another system similar to loop for Android users known as joint APS and still it's tied to, we are not waiting while all these fantastic resources exist. These unofficial closed loop systems can be dangerous if used incorrectly.
Speaker 2: A lot of people on conventional therapy that have [00:10:30] been on conventional therapy for decades have settings that are all messed up because their doctors increasing their basal rates for the fact that they don't car count. Right? So it's important that you really optimize your settings with a diabetes educator. That's working with you to carb count properly so that when you go onto this new type of insulin pumping that you do it right,
Speaker 1: For those of you who aren't keen on hacking your pump. There are F FDA approved, closed loop systems on the market, [00:11:00] but many of them are just beginning to catch up with loop. And none of them go quite as far. There's the tandem T slim X two with control IQ. This is a tube pump. Then there's the Medtronic seven 70 G also a tube pump. Medtronic has their own CGM called guardian system. And there's Omnipod by insulate, which is what I use insulate just announced FDA clearance of Omnipod five, which is their own closed loop system. None of the systems I [00:11:30] just mentioned have a smartwatch app or the extra customization and data insight as loop, which is why so many loopers and self have no plans to switch to an approved system anytime soon, which brings me to the most exciting news tide pool, a nonprofit working to make diabetes information more accessible, has taken loop under their wing to get FDA approval for its use.
Speaker 3: We're really trying to bridge both worlds, take the best of the innovation that has come out of [00:12:00] the do-it-yourself community and bring it under our regulatory umbrella, take it to the FDA. So that eventually what we'll have is an FDA cleared device that is in the app store that people can use, knowing that it has gone through that process.
Speaker 1: Tide pool submitted loop for FDA approval in January of 2021, they intend loop to be an app that you can download right on the app store and can be used with any pump, all [00:12:30] pumps right now use their own proprietary soft for, but with loop, this could one day change until tide pool loop gets official. FDA approval. The do-it-yourself version of loop will remain in at your own risk product. And while it works very well for myself and many others, not everyone's going to be as fortunate as I have been to have a diabetes educator who helped me get on it safely. When I asked
Speaker 2: Benefits of the FDA approval is that I get training, you know, and that [00:13:00] you get a trained medical staff to answer the phone. When you have some sort of technical problem, it's it's accountability.
Speaker 1: I think what this whole story has shown me is that the diabetes community is tight-knit and that there's good in the world. Believe it or not. My journey to diagnosis started with this community. I was on TikTok and I was talking about my diabetes diagnosis and treatment. And the community reached out to me and commented, leading me to [00:13:30] get the correct type one diagnosis
Speaker 4: Official. I am a type one diabetic. A lot of you are right.
Speaker 1: I owe a lot to them and I hope that this video maybe can help some people out there too. If you'd like to dive deeper into what loop is and how it works, you should check out that link down in the description. And if you wanna learn more about my story, either comment below, or you know where to find me for more tech news and reviews, be sure to subscribe to C net's YouTube channel and give this video alike. If you enjoyed it, I'm Justin [00:14:00] and I'll take you later.