Today we’re excited to share an international view from another of our 2013 DiabetesMine Patient Voices Scholarship Contest winners (announced in August).
Julia Neese is a 43-year-old business economist and native of Munich, Germany, who’s been living with type 1 since the age of 9. She got a CGM (continuous glucose monitor) in 2011, and the experience has been so positive for her that it altered the way that she sees diabetes and technology. Now, she’s looking into getting involved in the health tech field herself — you might remember she was just at the big EASD meeting in Spain, and shared some observations with us last week.
Our junior team member Amanda Cedrone recently interviewed Julia to learn about her perspective, and her “aha moments” with regards to diabetes tech:
DM) We always like to begin with a diagnosis story. What’s yours?
JN) I was diagnosed with type 1 at age 9 in 1979. I was sent home from the hospital not with insulin, but a low-carb diet regime, which thankfully stopped happening in the ’70s. Five months later, I was on insulin. In the following years I went through the stages of CT (“conventional” injection therapy), ICT (“intensive” injection therapy) and finally CSII (pump therapy) in 2002. I had tried an insulin pump first in 1987 but returned it — perhaps due to the typical teenager struggle with having something permanently on your body. However, I couldn’t imagine living without it today. The same goes for my CGM, which I’ve used since 2011. Though well trained in all diabetes topics, I always struggled to keep my BG (blood glucose) levels in range.
What did you struggle with most?
A list of all the reasons would be too long and are probably known all too well by many type 1s – fear of hypos and the accompanying tolerance of too high BG values, often unstructured and busy work days with ever-changing meals and activity levels, those moments of denial and motivation depletion — to name a few. I always felt that having a continuous, real-time view on BG developments would help me tremendously to react appropriately to the multitude of factors influencing my BG. I had to convince my diabetologist to invite a representative from Dexcom to his practice. Although my insurance didn’t and doesn’t cover the costs yet, I bought the device and have used it since then. As the device and the sensors get better, I’m more enthusiastic!
What do you do for a living?
I was an analyst consultant for 12 years with the Boston Consulting Group, but quit in 2012 to go on a sabbatical year (or two). I’m interested to continue a career in the medtech/pharma area.
What was it that re-energized you regarding diabetes technology?
“I turned my back on the diabetes community 30 years ago and never really liked to talk much about it in public. The first days I used a CGM, I wanted to tell the whole world about it! It might not have this effect on every diabetic for sure, but for me it was the first real groundbreaking tech product for diabetics for ages and helped me improve my HbA1C significantly.”
— ePatient Julia Neese
What do you hope to accomplish, if entering this field of work?
The next thing to tackle needs to be the integration and better data representation as described by fellow contest winner Christel Aprigliano. I think it would be great if I could help to push these developments further in my professional life, which wasn’t that clear when I quit my job as an analyst consultant at a strategy consultancy last year.
After 12 years in this job working on strategy and operations in a broad variety of industries, I simply knew that I needed a change and that I’d like to apply my skills to things that really matter to me. But at first I granted myself eight months traveling in Southeast Asia and Europe and kept my brain working by refreshing my language skills, and amusing myself with MOOCs (online courses) from design thinking to social psychology and global health. I always had a weakness for the health industry, both for pharma, medtech and non-government organizations (NGOs). In combination with my knowledge on diabetes, I could imagine trying to help introduce and market innovative products in this field and help drive relationships between users, medtech companies, health insurance companies, and other stakeholders.
What inspired you to enter our Patient Voices Contest?
Since using a CGM, my interest in diabetes technology and in the disease has increased tremendously — not to say that I wasn’t interested before. But as a long-term diabetic with a busy and unstructured working life, I was always wondering how to break this vicious cycle of unpredictability — fear of hypos, fear of complications, frustration and denial. Neither deep knowledge of all the basics of diabetes management, ICT and CSII nor applying divers models of behavior change and motivation theory helped as much as the usage of a CGM.
To be able to take part at an event like the DiabetesMine Innovation Summit gives me the opportunity to go out and interact with all sorts of people — those affected by diabetes, researchers, engineers, pharma companies etc. And contribute to developing and promoting new solutions.
Describe the basic message you aimed to convey in your contest submission (below)?
My message is two-fold: I waited more than 30 years for a continuous glucose sensor. I don’t want to wait another 30 years for the “next big step” — whether it be the bionic or artificial pancreas or implanted islet cells. In the meantime, we need to make some rather incremental steps towards better data management/integration of devices as well as improve the acceptance of new technologies by physicians and health insurances to ensure that as many diabetics as possible can afford and benefit from them.
Quick: what’s your 140-character Twitter sentiment on diabetes tools & technology?
The benefit of new diabetes tools & technologies is still undervalued by many diabetologists.
You live in Germany and are well-versed in the global D-tech scene… Do any comparisons between Europe and the U.S. stand out to you?
From my perspective, earlier and easier approval of devices seems an advantage in Germany and Europe. However, differences in reimbursement practices can heavily influence distribution and usage (i.e. CGMs in Germany are not reimbursed as a rule). Otherwise I don’t see too many differences in the range and availability of products. What I also noticed is that patient advocates seem to play a bigger role the U.S. in discussing and pushing innovations in the D-tech area than in Germany, where various associations, institutes and political bodies dominate the discussions.
Considering your background, what do you hope to bring to the Summit?
I have a strong interest in business strategy, innovation management and design thinking, both from a personal as well as from a professional standpoint. Combined with being personally affected and my knowledge on diabetes, health economics and the industry landscape, I hope I can add value to the Summit!
How can this kind of advocacy potentially affect your life and the lives of other PWDs?
I really do hope that with this kind of advocacy, new tools and technologies, as well as their necessity, get more public visibility so that industry players are motivated to invest in better solutions and health care providers are willing to pay for them. I’m thinking about how to spread these messages to Germany.
Well said, Julia! we’re proud to be part of these efforts in the States, and hope we can help facilitate similar changes in Europe.