It took me a while to write up this report, as I found it difficult to organize. We left the US in early June 2018, for 15 months of continuous travel in Europe and Africa. We have now been gone for 8 months. For a bit over half of that time we were itinerant, moving every week or two, sometimes more often. We based ourselves in Granada, Spain in September, but still kept on traveling from here. In a bit over a month we will become fully itinerant again, this time in Africa and the eastern Mediterranean.
Organizing our departure from the US was stressful and difficult. For a whole year we felt like we were racing against time to be ready on time. One of the time-consuming issues we needed to solve was how to plan for diabetes over our trip. There were several concerns: insurance, treatment and doctors, insulin, pump and CGM, pump & CGM supplies, and other diabetes supplies.
Early on we called on our health insurance plan. We determined that all treatment and supplies would be out of network, paid cash, and that we would need to keep receipts of them as we went. We also figured that our costs away from the US would be much lower for most things: doctors’ visits and medicine, to the degree that it may not even be worthwhile to keep track sometimes.
Because we did not know what to expect in being able to get service quickly and get local prescriptions, we asked for a 15-month vacation exception, meaning that we could order many supplies ahead without problems. We obtained the exception by calling the benefits management group that administers the plan (the company from which we get insurance self-insures). I will discuss further down the problems we had with it.
We researched the possibility of buying health insurance in some of countries we went to. Because we are going through so many countries, it ended up not making sense. So we left without anything else than a US health insurance.
We also researched the possibility of taking travel insurance, mostly to get repatriation if needed, if we ran into significant trouble. It would have been possible and easy for shorter term travel, but travel insurance for travel; out of the US for more than 12 months was not a simple purchase. We ran out of time while trying to come up with a provider. The only easy way we could find would have forced us to travel back to the US before 12 months, then leave again. It would have been nice to have—in the end, we left without it. We decided that most of the countries we went to had very good health systems, much cheaper than the US, and that we would be able to get care there if we needed to.
Treatment and doctors
Our decision was that we would use local doctors when needed, and call our US doctors with concerns if needed. We expected that we would find good care wherever we were in the general case in Europe—we were more worried about Africa.
We saw a doctor in France, the day we arrived in Europe, to establish a patient relationship somewhere in Europe and get insulin and diabetes gear prescriptions. Later on, my son broke a wrist in Spain, and he had to get X-rays and a cast for a few weeks. Finally, we got a site infection in the Sahara desert in Morocco, and had to find a village clinic in the desert (the story can be found here: Have T1D, will travel: a trip to the Sahara). The desert clinic experience was quite an adventure for us, but everything else has been easy. Appointments were easy to get, typically much faster than in the US. Costs were very low. Our total visit costs total about $700 across three countries (we have visited about 15 so far) over the past 8 months, including wrist X-rays etc. So far, we have called the US only once, for confirmation of what antibiotic to use on a site infection. While we find the health systems we have seen a bit lower tech than at home, they are high availability, competent, and very affordable, and we have no complaints at all.
We had already traveled internationally before, and been able to buy insulin easily and without prescription, both in Canada and Central America. But we did not know how easy it would be in Europe (I figured Africa would not be a problem). So we decided to leave the US with 6 months’ worth of insulin, and to carry a US prescription (which we knew would not allow us to order outside the US, but as proof of need) and a cover letter from our endo explaining that our son was T1D. We also decided that we would pick a country in Europe where we would establish a relationship with a GP from the get-go, and get an insulin prescription there.
We had no problem carrying insulin anywhere with us (I will discuss in another thread how we are physically carrying insulin). But we found out that we really did not need to. So far, we have been able to buy insulin everywhere we have been without prescription, and typically quite cheaply (about $50 per 5 Novolog penfills has been typical). So, retrospectively, we would have been able to leave the US with much less insulin than we had.
Before we left the US, we made an appointment with a GP in Paris, and asked for an insulin prescription. The visit cost 75E (about $90) and was easy and painless. Our US cover letter and prescriptions were very useful with the French GP. We now carry a French insulin prescription with us as well—but it has also been useless so far, since we can buy insulin everywhere w/o one. However, I find it a good precaution, just in case.
Pump and CGM
We use a Dexcom CGM G5 system, and an Omnipod pump system. For the CGM, we primarily use an iPhone SE as the receiver. We carry 2 spare iPhone SEs with us (I bought them on Craigslist a few months before leaving and tested them for a month each). We also carry one spare Dexcom Receiver (older small format). For the Omnipod, we have a PDM and a PDM spare. Along with these, we carry adaptors, chargers, and cables for the iPhone SE, and batteries for the Dexcom receiver and Omnipod PDMs.
Pump and CGM supplies
They ended up being the hardest issue to deal with. We established early on that no US supplier would ship to us abroad, either for pump or for CGM supplies. We investigated at length the option of buying our supplies locally. Because of complex insurance and country-specific regulations, it turned out to be practically impossible to do so. We concluded, after several months of investigation, that we would absolutely need to get our supplies from the US.
But, when we figured out how much sheer volume that meant, we quickly realized that it was impossible to carry 15 months of supplies with us. At most we could carry about 7-8 months’ worth of supplies with us. So we had to figure out a way to get more later. There really are only two ways: you can ship them, or you can have friends bring them. Both carry risks. All countries frown on importing medical supplies in volume. They can be bounced at the border, either if shipped or if carried by friends. The only safe way would have been for us to fly back and carry some, always with my son (since he is the patient)—a costly way to do business. After much discussion with other travelers, we concluded that it was safer to ask some of our friends who came to visit to carry a few months of gear with them for us.
So, in the end, we left with about 7 months of supplies with us (sensors and pods), and 2 CGM transmitters. Since that time, we have brought, in three batches, about 9 months’ worth of pods and sensors, and two more transmitters, through three different groups of friends. We order the gear and have it shipped to our friends’ address in the US (a different one every time). So we now have 8 months of supplies with us (including spares), and the only thing we need more of is Dexcom G5 transmitters (since they are only good for 5-6 months). We expect to have one shipped here by a friend, and the others brought over. I am not worried about a single transmitter being shipped over because I don’t think it is characteristic enough to be stopped at customs if shipped. But I do feel that a batch of sensors, if shipped, might be.
I should also add that we were quite selective in who we asked to bring gear. We chose people whom we felt could withstand discussions with customs without wilting. In one case, for a big batch, we actually asked a friend who is a doctor to issue them a paper prescription for the items so they would be able to justify at customs. But none of our friends was ever questioned, and there never was any problem.
One significant difficulty was the ordering of supplies. We had a 15-month vacation exception, so it would seem that it should have been easy. But, whenever we needed a new batch, it took many hours of discussion on the phone with our insurance company to get it to go through.
Other diabetes supplies
Because of cost and availability, the biggest part of this rubric was glucose meter strips. We use about 350 a month, so that represents a good amount. We used the same strategy with strips as we did with pump and CGM supplies: we left with about an 8 months’ supply, then had more brought over by friends. We now have all the strips we need to complete our trip. The meter strips were subject to even worse ordering difficulties than our pump and CGM supplies: The staff never found or understood the vacation exception when it needed to, orders were stopped multiple times. I must have spent 15-20 hours on the phone, and close to fifty phone calls, to get them through.
We also left with large amounts of adhesive supplies we like, since we did not know if we would find them abroad (Grifgrips, for instance). We had more brought over by friends as well. Specifically, we have with us SkinTac in swabs and liquid form, adhesive releaser (PDI), 4 forms of over-patch adhesive (Grifgrip, Tegaderm, Opsite Flexifix, plus another generic type), 1 form of solid underpatch adhesive.
We expected to find everything else easily. This turned out to be, in general, true, with one exception: we are unable to find sealed alcohol swabs around the parts of Europe we have been visiting. So, when we can, we use cotton and 90% alcohol instead. But, on the go, the swabs are really useful and we could definitely use more. We are planning to ask some of our future visitors to bring some.
Independently of diabetes, we also brought, with us, a small Pelikan case full of general purpose medicine (about 25 different ones). So far we have used 7-8 of them. The biggest consumption has been Ibuprofen–we have probably used close to 200 pills so far. In Europe, we cannot buy most drugs in more than 24 or 36 increments (encapsulated), and we are very pleased to have our US ibuprofen bottles with us
We are traveling light, with only a carry-on and one small backpack per person. On the other hand, our diabetes supplies take a full 2 suitcases… When we are going on a small trip, we reallocate a small amount of D gear to our trip luggage. When we move with all of our gear, we always allocate all of the diabetes gear to the carry-ons, and our personal gear ends up mostly in the suitcases. The insulin thermoses travel in backpacks, and we declare them at airport security when we arrive—we have never had trouble.
Planning for this trip was complex and difficult: thank god it is behind us! So far, execution has been reasonably good, and our choices appear to have been appropriate. We’ll see if the next seven months of travel are as smooth as the first eight
Note: this is a follow-up from this thread: