We always love to hear from Diabetes Community friends abroad, and today we're thrilled to share a guest post from Jochen "Joe" Gaiser over in Germany.
I had the chance to meet Joe when we both journeyed to Las Vegas this March for the first-ever Diabetes UnConference, although admittedly he gets the "farthest travel award" since he came all the way from Stuttgart, Germany, his lifelong hometown where Porsche and Mercedes happen to be located. Joe was diagnosed more than two decades ago, and now works as chief financial officer of a small, specialized biotech company (no connection to diabetes).
Today we're happy to hear his POV on diabetes technology, the DOC abroad, and all that's changed during his years with diabetes. Take it away, Joe!
A Guest Post by Jochen Gaiser
When I was diagnosed at the age of 18, my doctor promised me during our first meeting that we will have ice cream together at the end of next week after the first “setup” of my T1. So if I could have ice cream, diabetes could not be that bad after all, I thought.
More than 20 years later she is still my diabetes doctor and I have learned a lot from her. I also now know that diabetes can be a tough deal every other day and sometimes really bad. To deal with this, I try to stay curious and learn every single bit about this disease that is possible.
The Internet and especially the DOC (Diabetes Online Community) help a lot in doing so, even across borders and oceans. Kerri Sparling’s blog post at SixUntilMe made me aware of the DiabetesUnConference in Las Vegas in March and it was soon clear to me that I wanted to attend – even though I live in Germany about 6,000 miles away.
I had the chance to attend some diabetes meetings before in Germany – the biggest was T1Day in Berlin in January with more than 300 T1Ds. It was held the day after a conference for diabetes health care professionals. The large audience – and probably also the German tendency to be more distanced at least at the beginning -- made it more difficult to connect personally. In the afternoon, when smaller focus groups worked on different topics, personal connections where made but never in the way I experienced it in Las Vegas during DUnCon.
Diabetes Tech in Germany
Germans tend to see the U.S. as way ahead in technical issues. So I was not surprised to learn that you have a broader choice of pumps. T-Slim and Asante Snap (RIP) have never been available over here. But the Animas Vibe was available in Europe long before you had the chance to touch it, and Abbott FreeStyle Libre Flash Glucose Monitor is driving the German DOC crazy since summer 2014.
Abbott did a great job in marketing. They invited bloggers for a weekend to test drive the unit in real life long before it was released. Patients were allowed to blog a little bit about what happened, but no product details. So almost the whole DOC was excited to hear news of its official launch, so much so that Abbott had to close its online shop for new registrations shortly after the Libre went on sale. Demand was way higher than they expected – even though the Libre is not covered by health insurance and has to be paid completely out of pocket.
Libre is a "CGM light," as we think about it, as it has no alarms. Alarms are the main reason for me to have a Dexcom. So it felt like trying Libre could be a step back for me.
But my impression is that Germans tend to be more settled in terms of where they live and what they have generally than Americans are, so maybe that translates to less furor for the latest flashy diabetes tech too. No proof for that, just my impression.
The differences here are even more astounding, because Germans are used to health insurance covers what is needed and there is no huge extra pay besides the insurance contribution. German health insurance covers insulin and supplies whilst T2s using no insulin have to pay for BG strips themselves. Most others receive up to 200 strips per month.
It is true that doctors are afraid health insurance organization will take recourse against them if they prescribe more – meaning the doctors would have to pay for the strips out of their own pocket. Somehow doctors believe that there is legal regulation to not prescribe more than 600 strips per quarter – even though there is no such official rule and they probably have nothing to fear.
I never had difficulties with that, as I only tested 4-5 times a day even before I used CGM. Other T1s get 600 strips from their diabetologist and try to get additional prescriptions from their family doctor.
To get an insulin pump has become more and more difficult during the last years as insurance companies try to save money. In the old days you just needed a prescription with a little justification and you were done. Nowadays insurance companies want three months' worth of diabetes logbook data and some applications are even refused if they have no blood spots – as they see the lack of blood as a sign that the logbook entries have been made up (!) Like in the U.S., approval is only given if the authorities see "medical necessity," meaning the patient is struggling with dawn phenomenon or other issues that cannot be solved with injection therapy. So the patient has to prove that they're doing poorly in order to get a pump; just aiming for higher quality of life is no longer an accepted reason.
CGM is not supplied by public health insurance in Germany – despite some very isolated individual cases. So patients pay out of their own pocket and are using DIY solutions to reduce cost. Examples of these DIY solutions are xDrip, developed by Stephen Black in the U.S. (saves $1.000 as no Dexcom receiver is needed) or individual replacement of Dexcom transmitter batteries.
The German DOC
With the support of companies involved in diabetes, the German-speaking DOC is trying to get closer together instead of working and posting at an array of individual sites. One of the best ideas was the introduction of portals collecting individual diabetes blogs and publishing the different posts at one site (i.e. one portal collects 62 different blogs at the moment). So it is very easy for readers to find new blogs and learn more. And it reduces the number of RSS feeds on my phone, as I had to add so many new ones after my visit to Vegas.
The biggest German portal is #deDOC Open Blog (use Google Translate for basic translation). On the right side you can find a link list with all diabetes blogs participating. The portal Bloud Sugar Lounge (also translated here with some help from Google) was set up by the publishing house of the main printed diabetes magazine in Germany that is also the official publication of the German Diabetes Association (DDG).
The power of the Internet has given us so much, and helped make diabetes much easier to live with in many ways.
Oh, and not to forget: My doc and I never made it to have that ice cream together (but I have to admit we had some delicious pizza and pasta!)
Thanks for sharing this, Joe! We hope to see you at next year's Diabetes UnConferences in either Las Vegas or Atlantic City, and look forward to seeing you around the Global DOC.