4 years DIY closed looping with #OpenAPS – what changed and what hasn’t

It’s hard to express the magnitude of how much closed looping can improve a person with diabetes’ life, especially to someone who doesn’t have diabetes or live closely with someone that does. There are so many benefits – and so many way beyond the typically studied “A1c improvement” and “increased time in range”. Sure, those happen (and in case you haven’t seen it, see some of the outcomes from various international studies looking at DIY closed loop outcomes). But everything else…it’s hard to explain all of the magic that happens in real life, that’s made so much richer by having technology that for the most part keeps diabetes out of the way, and more importantly: off the top of your mind.

Personally, my first and most obvious benefit, and the whole reason I started DIYing in the first place, was to have the peace of mind to sleep safely at night. Objective achieved, immediately. Then over time, I got the improvements in A1c and time in range, plus reduction in time spent doing diabetes ‘stuff’ and time spent thinking about my own diabetes. The artificial pancreas ‘rigs’ got smaller. We improved the algorithm, to the point where it can handle the chaos that is everything from menstrual cycle to having the flu or norovirus.

More recently, in the past ~17 months, I’ve achieved an ultimate level of not doing much diabetes work that I never thought was possible: with the help of faster insulin and things like SMB’s (improved algorithm enhancements in OpenAPS), I’ve been able do a simple meal announcement by pressing a button on my watch or phone..and not having to bolus. Not worrying about precise carb counts. Not worrying about specific timing of insulin activity. Not worrying about post-meal lows. Not worrying about lots of exercise. And the results are pretty incredible to me:

But I remember early on when we had announced that we had figured out how to close the loop. We got a lot of push back saying, well, that’s good for you – but will it work for anyone else? And I remember thinking about how if it helped one other person sleep safely at night..it would be worth the amount of work it would take to open source it. Even if we didn’t know how well it would work for other people, we had a feeling it might work for some people. And that for even a few people who it might work for, it was worth doing. Would DIY end up working for everyone, or being something that everyone would want to do? Maybe not, and definitely not. We wouldn’t necessarily change the world for everyone by open sourcing an APS, but that could help change the world for someone else, and we thought that was (and still is) worth doing. After all, the ripple effect may help ultimately change the world for everyone else in ways we couldn’t predict or expect.

Ripple_effect_DanaMLewisThis has become true in more ways than one.

That ‘one other person’ turned into a few..then dozen..hundreds..and now probably thousand(s) around the world using various DIY closed loop systems.

And in addition to more people being able to choose to access different DIY systems with more pumps of choice, CGMs of choice, and algorithm of choice, we’ve also seen the ripple effect in the way the world works, too. There is now, thankfully, at least one company who is evaluating open source code; running simulations with it; and where it is out-performing their original algorithm or code components, utilizing that knowledge to improve their system. They’re also giving back to the open source diabetes community, too. Hopefully more companies will take this approach & bring better products more quickly to the market. When they are ready to submit said products, we know at least U.S. regulators at the FDA are ready to quickly review and work with companies to get better tools on the market. That’s a huge change from years ago, when there was a lot of finger pointing and what felt like a lot of delay preventing newer technology from reaching the market. The other change I’m seeing is in diabetes research, where researchers are increasingly working directly with patients from the start and designing better studies around the things that actually matter to people with diabetes, including analyzing the impact and outcomes of open source technology.

After five years of open source diabetes work, and specifically four years of DIY closed looping, it finally feels like the ripples are ultimately helping achieve the vision we had at the start of OpenAPS, articulated in the conclusion of the OpenAPS Reference Design:

OpenAPS_Reference_Design_conclusionIs there still more work to do? Absolutely.

Even as more commercial APS roll out, it takes too long for these to reach many countries. And in most parts of the world, it’s still insanely hard and/or expensive to get insulin (which is one of the reasons Scott and I support Life For A Child to help get insulin, supplies, and education to as many children as possible in countries where otherwise they wouldn’t be able to access it – more on that here.). And even when APS are “approved” commercially, that doesn’t mean they’ll be affordable or accessible, even with health insurance. So I expect our work to continue, not only to support ongoing improvements with DIY systems directly; but also with encouraging and running studies to generalize knowledge from DIY systems; hopefully seeing DIY systems approved to work with existing interoperable devices; helping any company that will listen to improve their systems, both in terms of algorithms but also in terms of usability; helping regulators to see both what’s possible as well as what’s needed to successfully using these types of system in the real world. I don’t see this work ending for years to come – not until the day where every person with diabetes in every country has access to basic diabetes supplies, and the ability to choose to use – or not – the best technology that we know is possible.

But even so, after four years of DIY closed looping, I’m incredibly thankful for the quality of life that has been made possible by OpenAPS and the community around it. And I’m thankful for the community for sharing their stories of what they’ve accomplished or done while using DIY closed loop systems. It’s incredible to see people sharing stories of how they are achieving their best outcomes after 45 years of diabetes; or people posting from Antartica; or after running marathons; or after a successful and healthy pregnancy where they used their DIY closed loop throughout; or after they’ve seen the swelling in their eyes go done; etc.

The stories of the real-life impacts of this type of technology are some of the best ripple effects that I never want to forget.

Traveling through airport security with diabetes devices (with or without #OpenAPS)

tl;dr: Put your #OpenAPS or other artificial pancreas rigs through the x-ray machine; it’s a small computer and a battery.

Traveling through airport security with your diabetes devices and artificial pancreas rigs (#OpenAPS)

I travel quite a bit these days, so it’s pretty routine for me to pack up my diabetes gear and backup supplies and whisk away to the airport and the next adventure. In fact, in 2016 I think I went through airport security 44+ times, in several countries. I have never had any issues with my #OpenAPS (DIY hybrid closed loop artificial pancreas) rigs – even when I carry multiples. Here are some tips on what gear should be put where, who should be told what during the security process, and how to further simplify (as much as is possible with diabetes!) the airport security experience when traveling with diabetes.

A list of diabetes gear you’re probably packing for your trip:

  • BG meter
  • Test strips
  • Lancet(s)
  • Pump sites
  • Reservoirs
  • CGM sensors
  • CGM receiver
  • Tape for sites/sensors
  • Syringes as back up
  • Anti-nausea meds
  • Depending on the length of your trip, backup pump/transmitter/meter/receiver/etc.
  • Snacks
  • Extra batteries to power your phone for uploading BGs
  • (Uploader phone if you’re still using an uploader to Nightscout)
  • Artificial pancreas rig (i.e. #OpenAPS rig, whether that’s a Raspberry Pi or Explorer Board setup, or a Rileylink)
  • Insulin
  • Extra insulin
  • Juice for lows

Out of that list? Here are the only things I would pull out of your bag.

  • Insulin/extra insulin*
  • Juice for lows**

Everything else (yes, including your CGM receiver; yes, including your pancreas rigs) can stay in your bag and go through the x-ray.

*If you have a single bottle of insulin, it’s under the liquid (3oz) limits, so you don’t technically need to pull it out. But if you are carrying numerous bottles/pens/etc., if you have them separately bagged and can pull out separately, I would do so in order to reduce the risk of them flagging your bag for needing additional screening.

** Yes, you have a medical need for liquid and can take juice through security. HOWEVER, I *highly* recommend having this in a baggie and pulled out of your bag so it is separate. They’ll often pick that up, examine it, and if you say “medical liquid for diabetes”, it’s fine. Sometimes you’ll get pulled for a pat down, but not always. And, this usually prevents them from having to dig through your bags to find the juice and go through all your things. (Which is annoying, not to mention time consuming).

My second “HOWEVER” related to juice: I’ve stopped carrying juice for lows when I air travel. Yes, it only takes an extra couple of minutes or whatever for them to check things out, but I’d rather not have any hassle if I can avoid it. I instead have switched to Starbursts, Skittles, and similar. (They’re super fast acting for me, and actually make it easier to do a small 4g correction vs having to bust open an entire 15g juice box that can’t really be saved for later.) I have those in my pocket or easily accessible in an outer pocket of the bag that will go under my seat on the plane. You can of course still carry juice, but think about if that’s really worth the hassle/effort and if there’s an alternative (glucose tabs, small wrapped candies, etc.) that might be easier for treating lows when traveling. YDMV, of course.

(My favorite carrying-juice-through-security story is this: I was traveling to somewhere in Europe while in college (well before my DIY closed loop days), and I had a large baggie jam-packed with 8 or 9 juice boxes and a bottle of insulin. Despite telling them that I had diabetes and was traveling internationally and this was medically necessary in case of low BGs, the TSA agent said “how many juice boxes could you possibly need in an 11 hour flight? You wouldn’t use more than one, right?” It was *really* hard not to laugh.)

What about insulin pumps? Do you take it off?

  • I currently am wearing an insulin pump that does not alarm in 99% of metal detectors because it’s not made with lots of metal. I also have TSA Pre-Check, which means 95% of the time when traveling in the U.S. I am only asked to go through a metal detector. So right before I walk up to security, I take my pump that’s usually clipped to an outer pants pocket and clip it inside my waist band and underneath my shirt. If it doesn’t alarm, then I proceed like a usual traveler to get my bags and be on my way.
  • If I am randomly selected by the metal detector to instead go through the body scanner:
    • YDMV/YMMV, but there are no guarantees that the body scanners will not break your pump. And if you have a super special limited edition rare pump that does a special thing (like those that enable you to DIY closed loop), as I do, it may make you decide that a pat down is better than risking your pump, since if it DOES break due to scanner interference, TSA sure isn’t going to pay to fix it/get you a new one, and a new one wouldn’t allow you to DIY closed loop anyway.
    • So, if I get randomly selected, I stop right there and say “opt out”. Say it to whoever is pointing you over to the body scanner, they’ll posssibly read you a script to confirm you want to opt out, and just keep saying “yes, I opt out” and “that’s fine” to the “but then you have to have a pat down!”. They’ll order up a same-gender TSA agent who will come get you, escort you around the body scanners, and you’ll get your pat down. The usual applies – if you want, you can ask for a private area for your pat down. I usually don’t care, but if you do, make sure you keep an eye on your bags and ask for those to come with you so they’re not left out in the open for anyone to accidentally take. (They’re usually pretty good about that, though.)
    • For the pat down, they’ll ask you about sensitive areas/medical devices. This is the time to point out your pump; tell them (pat the area) where it’s connected, and ditto for patting/pointing out your CGM sensor if you have one. They’ll be extra careful then to not accidentally catch their hands on those areas.
    • At the end, they’ll go swab their gloves, then come back and ask you to pat/touch your pump and then let them swab your hands.
  • If you don’t have Pre-Check, the above will likely happen every time. So if you’re an opt-out-of-body-scanner-type and travel more than 2 times a year…IMO Pre-Check is worth the money. (And think about getting Global Entry, which comes with Pre-Check included, and also gets you expedited return to the country after traveling abroad).
  • If you have a metal-cased pump (or any other pump, and just want this instead of the metal detector or the body scanner), you can ask for a hand inspection of your pump. Different manufacturers say different things about whether x-ray and body scanners are ok/not ok, so check with them and also go with your gut about what you’d like to do with your pump.  Keep in mind that the radiation your carry-on luggage gets from the hand-luggage x-ray is about 100 times what your body gets from a backscatter x-ray, so if you’re concerned about x-ray radiation damaging your pump, it should not be sent through the scanner with your carry-on luggage.

What about a doctor’s note?

I have never carried a doctor’s note, and have not had an issue in the 14+ years I’ve been flying with diabetes – including in dozen of international airports. YDMV, and if you’d feel more comfortable with one, you can get one from your doctor. But for what it’s worth, I don’t travel with one.

What about international airports?

The only thing to know about international airports is they have similar guidelines about liquids, so plan to also pull out your juice and toiletries from your bag. Same rules apply for keeping rigs, supplies, etc. in your bag otherwise. I’ve never had an issue based on pancreas rigs internationally, either. They’re small computers and batteries, so both TSA and international security are used to seeing those in the x-ray.

(Let me know what other travel-related questions you have, and I’ll keep adding to this post if it’s helpful. Happy traveling!)