November 14 — world day of struggle against diabetes. This disease occurs when the pancreas does not produce insulin, do not produce enough or when the body cannot effectively use the insulin it produces. According to who, in 2014, the number of diabetics in the world exceeded 422 million For comparison, in 1980 the figure was 108 million In 2016, diabetes ranked seventh among causes of death, the disease can cause many side effects like blindness. There are two types of diabetes the first insulin is not produced at all.

Iskander Vafin finished in Kazan faculty of technical Cybernetics and Informatics and at their own expense develops cost APSBerry for an artificial pancreas system OpenAPS. In addition, the 28-year-old Vafin is the Creator of thematic communities in social networks. So, in his public in “Vkontakte” signed by over seven thousand people. Iskander — a diabetic and one of the activists of the international movement #WeAreNotWaiting seeking to simplify the lives of people with diabetes of the 1st type with the help of modern technology. “MIR 24” has talked with the developer about who cyberliability.

— Your public in “Vkontakte” called “the Life of cyberliability”. What are you talking about?

— There is movement #WeAreNotWaiting, that is, “We can’t wait.” This is the motto of people from the diabetes community who are taking matters into their own hands: do reversengineering (if you want to: hacking, hacking) insulin pumps and glucose meter systems, development of software and additional devices to help people with diabetes of the 1st type to use their device in full strength to achieve the best compensation and make life easier.

The movement arose as a protest in opposition to such a large medical corporations as Medtronik, which, under the guise of safety, care about their profits, strongly discouraging the introduction of the latest achievements of the movement. For example, you withdraw from the sale of pumps that are compatible with the system closed loop.

Thanks to the movement we can now use an artificial pancreas, such as OpenAPS, AndroidAps and Loop. These devices and programs will never be certified and officially approved, because they give people the freedom of choice and deprive medical Corporation profit. More years pass, before the same Medtronic approve its closed loop, attached to its sensors, and several years before it becomes available to us.

— Tell us more about the politics of pharmaceutical companies, now cyberliability have to look for the old model?

— Take the same OpenAPS (Open Artificial Pancreas System), for which I created a cost. In new pumps, which are officially sold Medtronik blocked the possibility of installing this system. Why? Because it creates competition with existing products of the company. That is next year or the year after they will represent their own system artificial pancreas, which will cost like 5-10 thousand dollars. Now people have to look for older model pumps. Pumps, which give in Russia on a quota, just a little outdated, but in this case it’s not a minus, but a plus.

— With systems of continuous glucose monitoring is also difficult?

— Now on the Russian market there are two device, the first is a product of Medtronic, which you can buy at any pharmacy diabetes, but he developed about 15 years ago and the technology is outdated. The second option is available if you live in Moscow and have Moscow registration. Then you can buy the Freestyle Libre from Abbott. If you live in Kazan and Khanty-Mansiysk, you can’t buy.

Furthermore, there are also other systems of glucose monitoring, for example, Eversense, or Dexcom, which I enjoyed. In Russia, officially it is impossible to acquire this system, as it is not licensed.

Can is available to tell you how the whole system works devices cyberliability what it is?

— First insulin pump. Is a device that continuously injects insulin directly into the body the micro-doses, almost like a real pancreas, the second component is glucose monitoring. Anything to puncture it is not necessary — under the skin is always the sensor. They are United by an “artificial pancreas” — a device that takes glucose readings, processes them and, when needed, automatically gives insulin. Anything to puncture it is not necessary — under the skin is always the sensor. When there is a decline in blood glucose, the system stops the pump to avoid hypoglycemia. Night can happen an increased spike of sugar, the system that you’ll see, you will not Wake up and she will bring everything back to normal. Pump works for 5-10 years, every three days changing cannula transactions, which is applied to the body. Outwardly, it looks just like a sticker on the body.

If a person with diabetes does not use a pump, but just stabs himself with insulin, then he does it, usually five times a day, high doses. Three times injections of insulin ultrashort action, twice extended.

— To cope with the settings can anyone?

— It has a high threshold of entry need a certain skill and preferably a technical education. The algorithm can be written, but read and repeat it difficult. Just like I can a man tell a story and show you how to do the website, will supply the equipment and released in the field. Not everyone understands technical language. Need to go to settings via the console, the whole system at the moment is a micro — computer based on Linux, as these small energy-consuming devices, there are no other operating systems. You need to have at least a basic knowledge of what it is and how to manage it.

Now developed an “artificial pancreas” under the name Loop (for iOS) and AndroidAPS, but there is the same. For example, to install a Loop, you must be a Apple developer account. You need to have an Apple certificate, Apple computer and iPhone to collect app, and then you get a nice service where you don’t need to understand the programming and can all be safely set.

With Android is simpler, but the developer AndroidAPS Milos Kozak is trying very hard to make most non-technically proficient people are unable immediately to collect and use. According to his concept people need to understand myself, through all the stages and only after that to get the result. If I, for example, he will do everything and send you a link to the installation file, you do not need to be a programmer to install it on Android. But it violates the license Milos — a product Open Source, but under a commercial license. Just spread it can not, you can download it free and becoming yourself.

Photo: Rolf Vennenbernd/DPA/TASS One of the models of an insulin pump.

— What about those diabetics who do not have the competence to deal with settings?

— There are comrades who set for the money, setting OpenAps, Loop or AndroidAPS is 10-15 thousand rubles. If you have a person buy assembled equipment, the equipment with customization costs about 25 thousand rubles. In the case of Loop, so the program runs on the iPhone, you need a piece of hardware. You buy a piece of metal, and the program you are installing in the kit.

There are so many people that authorize development. The program deletes all references, copyrights and sell this service, and you, as a layman, difficult to understand. In addition, on the market a lot of scams that seem high-tech developers, who are doing everything themselves, and collect grants, and in fact use developments community’s #WeAreNotWaiting.

— You are aware of the cases when people incorrectly set up their device and this has led to some negative consequences?

— At the moment no such data. During the use of insulin pumps was recorded about three deaths are connected with the fact that people injected too large a dose, and did not trigger the security mechanisms. But it concerns insulin pumps. Concerning pieces of iron — there is a very serious security settings at all desire to hurt yourself will not work.

— How are your friends doctors refer to such biohacking?

— There are doctors, endocrinologists, which support patients. But it is illegal, as it is not certified developments. But those people who understand see the results. Decreases the level of glycated hemoglobin, this leads to a significant reduction in consequences from diabetes. Those doctors who left a bit in the past, of course, skeptical.

We talked about price for setting up the equipment, and how much it costs per month to be cyberdeath?

— It’s not cheap, especially if you buy everything in the shops, not with it. If you live in Moscow, you have a pump and a monitoring system, in a month you will spend at least 15 or 20 thousand. Every 14 days the sensors are blocked, and then they cannot be used. One sensor costs about five thousand roubles. In a month they need two. The rest is consumables: cannula, and so on. An adult person the very pump you can get for free under the quota for children of such a large quota there, so either you need to wait several years or buy. Pump now costs 80 thousand rubles.

— In your opinion, in Russia for diabetics life is harder than in the West, or Vice versa — is easier?

— We have a very cheap insulin. Moreover, it is cheap, it still is free. This is a huge plus. In the US, if you have good insurance, you’re forced to spend a month two or three thousand dollars just for the insulin. I have a friend who works in Moscow, but has Russian citizenship, he spends a month on insulin only four or five thousand rubles.

The downside is that we have not developed the consumer market. Why in the US all use the glucose monitor? Because a month is $ 300, and you have salary much more. 15 thousand rubles a month, if you live in California or some small Russian town, is totally different figures. Accordingly, we have much less people uses it, because of this demand there.

Photo: Alexander Ryumin/TASS. Insulin production at factory “Sanofi-Aventis East”.

— Insulin in Russia is cheap and the quality is it good?

— Yes, but I prefer insulin international brands, even “bottled” in Russia. Purely Russian insulin — are now the subject of many disputes.

— If you can imagine the ideal goal, what would you like to achieve?

— I wish that we released insulin pump, which would be fully Autonomous. I can do it, but it is a question of large investments. We have a very big potential, I know a lot of really good engineers. Again, at the moment I have a development and some medical devices that are preparing to launch, but it’s still very local level. Ideally I would like not only to ride the wave of investment and hype, and bring a decent competitive product on the world market.

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