We're back with another edition of our Global Diabetes series, in which we've "traveled the world" to bring you the stories of people living with diabetes, from Germany and Spain to India and the United Arab Emirates. Today, Anja Nielsen joins us from Copenhagen, Denmark, where approximately 5% of the population has diabetes. Anja was diagnosed with type 1 diabetes in 1999, and soon after became an active diabetes advocate, involved in both the International Diabetes Federation (IDF) and the DAWN Youth study. Later, she entered the field of diabetes!
Anja and I first met online when we were both in high school, but we met in person in 2007 when she came to New York for the first UN-recognized World Diabetes Day. I'm excited to have Anja share her story and a little bit about what it's like to live with diabetes in the home country of Novo Nordisk.
A Guest Post by Anja Nielsen
I'm Anja. I was born 27 years ago and lived all my life in Denmark. However, I was actually diagnosed with diabetes at age 14 while in Germany. As I felt very isolated with my diabetes, I quickly engaged in the Danish Diabetes Association as a volunteer in the Youth Council. One thing led to another, and a few years later I was working at diabetes camps in Denmark and the U.S., as a Youth Ambassador to the International Diabetes Federation and part of the DAWN Youth International Steering Committee, conducting psychosocial studies and intervention for children and youth living with diabetes.
Diabetes has led me to be fascinated by the human body and the mechanisms behind disease states. I have a Master's degree in molecular biomedicine and did my master thesis focusing on causes of type 1 diabetes at Steno Diabetes Center, where I also go for my check-ups. Now, I do market research and analyses of the pharmaceutical industry.
Having type 1 diabetes presents many challenges and the challenges are different by the country in which you live. I have been surprised over the differences that people with diabetes living in Denmark and the U.S. face. This is a short story of my personal experiences and perceptions of variations between Denmark and U.S. I will focus on type 1 diabetes for the remainder of this piece.
In Denmark, we have universal health care, which is paid with the taxes. And yes — the percentage of an average work wage which is paid to government to cover health care is much higher in Denmark than in the U.S.! Having universal health care as opposed to the health insurance system in the U.S. (which I have tried to understand but still presents many surprises when I look into it) has its pros and cons.
The pros are overwhelming:
- Free medical care by diabetes specialists (doctors and nurses)
- Screening for complications on a regular basis and early treatment of identified complications
- Free test strips, needles and other supplies
- Very small co-pay on blood glucose meters (or get them for free from the companies...)
- Free insulin pumps and utilities for pump treatment
- Co-pay for insulin is the same as for all other prescription drugs: It is based on a principle that the more prescription medicine you need, the higher percentage of the cost the government pays
- Prices are highly predictable and can be viewed on the website of the Medicines Agency, as drug prices are controlled by the authorities
- As limited resources are available through the tax system for health care, prioritization is necessary. It is mainly an issue relating to pump therapy. This means that new technology generally speaking is introduced later in Denmark than in the US., e.g. the Omnipod is not covered in Denmark.
- Only a few pump brands are available and often the doctor chooses which one you get or choice is limited to two brands. Compared to the U.S., the percentage of people with diabetes using pumps is limited. It has been politically decided that children have easier access to getting a pump. In Denmark, it is not possible to buy a pump out-of-pocket.
In my opinion, comparing U.S. to Denmark, our model of treatment of diabetes provides more security and more predictable spending — but less choice.
When it comes to living with diabetes, there are also regional variations. Some children in Denmark have an assistant in the school to help them deal with their diabetes, paid by the local city council budget. In other communities, this is not an option. Parents of children with diabetes can get reimbursed for missed work days due to diabetes-related tasks such as doctor's visits or introducing the child in a new kindergarten or school.
In general, new technology comes to Denmark later than to the U.S. I believe the reasons are twofold: As we have universal health care, prioritization is a key issue and the benefit of new, more expensive treatment, must be thoroughly shown before it is covered. Also, the Danish market is small, due to small population size, compared to other countries. Companies may often therefore choose to market their new products in larger markets first. Very few people with diabetes in Denmark get continuous glucose monitors (CGMs). To my knowledge, it is not possible to buy sensors yourself and thereby circumvent the prioritization of the health care system. The same goes for pumps. A few people can get sensors for a limited period of time if one has large variations in blood glucose levels. (I had a CGM for a month.)
As far as diabetes organizations, we've traditionally had the Danish Diabetes Association, which is one of the larger patient associations in Denmark. It is involved in patient care and advocacy as well as building awareness in the general population. A few years ago, a group of parents to children with diabetes initiated a JDRF chapter in Denmark. The concept of diabetes walks was introduced by JDRF and has been known in Denmark only for about 5-10 years. JDRF is small and less visible in Denmark than in the U.S. Speaking directly to politicians as patient representatives is also relatively new in Denmark, but increasing. The Danish Diabetes Association has an annual day, highlighting children with diabetes in Denmark by media awareness and fundraising.
I believe that having Novo Nordisk in Denmark plays a major role for us with diabetes in several ways. The CEO of Novo Nordisk is very high-profile in Danish industry, often portrayed professionally and personally in the media. Most Danes also know that Novo Nordisk mainly deals with diabetes, so in that sense I believe the general population has a better sense of diabetes than they otherwise would. Novo Nordisk in general has a good image and many people aspire to work there. Most people with diabetes use Novo Nordisk insulin. I guess this is a matter of tradition, however, since the analogues other companies have gained more market share in recent years.
For media, there are the general issues: Lack of differentiation between type 1 and type 2 diabetes, type 2 diabetes seem as one's own "fault," and media misperceptions. There has been a TV show portraying a girl with diabetes — who apparently needed insulin when she had a low blood sugar! Simplification of facts is a problem, however the Diabetes Association and JDRF do well when pitching stories to the media in a proper and informative way.
My main issue with diabetes — based both on my own and experiences and those of other people — is improvement in psychosocial support. My diabetes center, Steno Diabetes Center, is well-known and proactive in providing psychosocial support. However, the access to psychologists or group sessions is very limited and most people in need end up paying out-of-pocket.
Despite the difference in health care, it sounds like the U.S. and Denmark are similar in a lot of ways. Thanks, Anja, for shedding some light on diabetes in Denmark!