DXAmsterdam - The Cost of Diabetes

In the interests of being bang up to date and cutting edge in my reviews and information here's a few words on my trip to Amsterdam with the Abbott Freestyle Libre team in June. Yes, only three months ago. I must slow down in my rushed reporting otherwise you'll be visiting this blog every month instead of twice a year!

Obligatory 'biased view' disclaimer out of the way first. I was one of nine bloggers from the UK and Ireland invited for the weekend in the city of canals and killer bikes. There we met over 20 bloggers from around Europe. Yes, they paid for my travel, food, a few of my drinks, though definitely not all and provided a pretty good, fun-filled weekend. On the flipside they did not demand any quick blogging, which is a good thing, or 'positive' reporting. All views and opinions are my own.

Now if I'd got to this quicker I'd be able to give a fresh and detailed review of the weekend. Instead what you get are the bits that have really stuck in my mind. In the interests of saving me repeating what has been written before I've given a few links at the bottom of this to other blogs. Please do click through as it's a great selection.

For me the weekend was a great chance to meet the other bloggers with different experiences and knowledge sharing a common dodgy pancreas. Some of this was entertaining and some were pretty upsetting and grounding.

Related to this I'm now going to focus on the thing that is still on my mind three months later.

On the Friday night we had a brief presentation from Matthijs Graner who runs http://www.eendiabetes.nl/. His presentation was around the idea of a simple thought leading to interesting projects. He told the story of how he had worked to build photographic calendars of young people with type 1 diabetes in the Netherlands. 

We were then asked by Matthijs to have a think about things we could do that could be useful in different countries. Chatting with Mike and a few others we started to think about the thing that had already come up a few times in conversation. Living with our diabetes thing 24/7 it's easy to become engrossed in our own experience and focus on the bad bits for us. It quickly became apparent that while the UK has challenges for funding and technological availability we also have all insulin provided free at the point of use. Along with this, people with type 1 diabetes have access to blood glucose testing strips. Sometimes their are local limitations on quantity but a good argument or change of can normally fix this.

For me I also have access to an insulin pump to deliver my insulin as I meet criteria for this. Along with this all cannulas, reservoirs and batteries for the pump are paid for. And when I need to replace this, although I will probably have to justify why I need one to improve my control, I do not expect it to be an issue getting it replaced. The make and model might be more limited but it’s a start.

In the UK the government collect money from general and salary taxation. That pays for the National Health Service. The basic concept of the NHS is that care is free at the point of need so that if you need medicine or treatment you do not have to pay up front before it is provided. Before people dive in here and say “Ah, but….” I’m trying to summarise the generality. Specifically for type 1 diabetes, insulin and test strips are paid for by everyone who pays taxes so that the person with type 1 diabetes does not pay when they order a refill of insulin, test strips or pump supplies if they have a pump. Local awkward GPs and CCGs may mean you are experiencing different but I’m speaking for the majority.

Outside of this I currently pay for the Freestyle Libre to provide me an up to the minute graph of where my blood sugars are. As an example, as I write this my number is 4.5. But I can see from the graph that this number is good as the line is relatively level and the direction of the indicating arrow is horizontal. This is a personal choice for me to make my life easier. If I chose not use it I’d be looking at a similar number on my Contour Next meter and wondering if I’m dropping and whether I need to read an impending hypo or the reality which is I’m fine for now. It's not cheap and definitely not an option for all but it's a choice I've been able to make to make my D-life easier.

We’ll come to the rest of the world in a moment. What about the rest of Europe? After we shared our idea around the room it quickly became apparent that each country provided a different model for paying for your diabetes. For some pretty much everything was paid for by the government and for others hardly anything was. In those countries where it was ‘paid for’ there may be additional health insurance to pay for because you have type 1.

Some models of provision were simply bizarre to me. An attendee from Turkey explained that her insulin pump was partly paid for by the government. She had to pay roughly half and then pay for all the consumables. And after 4 years when the warranty expires the pump has to be handed back and a new one purchased even if it’s working perfectly well. Totally mind-blowing.

Of particular concern to me was the testimony of Maria from Greece. The country’s financial strife was such a problem that test strips were now becoming something that had to be bought and she was part of a an active movement that was campaigning very hard so that people with type 1 diabetes had access to very basic levels of care and weren’t just neglected. Once again it struck home to me how fortunate I am to have the NHS.

These discussions showed to me that it’s easy to look at the green grass elsewhere and cherry pick what other countries do well and ignoring what they do badly. As I write this a life critical campaign called Insulin For All https://www.t1international.com/insulin4all/ is trying to ensure every person type 1 around the world has access to the basic liquid that is needed to keep them a live at an affordable price. For those reading from the UK it may surprise you that one of the countries where this problem is largest is the 13th richest country in the world with the common perception that it is one of the most developed. The USA. Yes there are people across the pond who are making choices every day over whether to pay for food or insulin. As a child of the NHS I find this truly shocking.

As I sat in Amsterdam hearing fantastically inspiring stories from people like Claire Lomas eating dinner with my new blogging friends at the back of my mind was a guilt and gratitude that still lingers to this day. I’m fortunate to have been born when and where I did which gives me access to high quality insulin deliverable in a safe manner in a way that I can afford. 100 years or 10,000 miles in another direction and my story would be completely different and possibly much shorter.

Last up comes a thank you to Abbott. I believe their intentions are to improve technology and the access to it. As a private company, yes they will need to ultimately make a profit, such is life. But all the people I have met from Abbott and the look in their eyes convinces me their personal aim is to improve the lives of people with all types of diabetes. They will get things wrong, such as the random expiry dates of sensors and massive supply issues when the Libre was first released but I hope they will learn from these and over time the cost of the sensors also drop to allow access to all irrespective of local funding. Disclaimer is nice and clear at the top so I'll allow you to judge my integrity but I know I'm OK.

As promised here are the links to other blogs and also another link to Insulin for All. For a good list of documents relating to insulin costs in have a look down Laura’s timeline on Twitter. https://twitter.com/Kidfears99

Every Day Ups and Downs
Thrive Diabetes
Adrian

Thanks as always for reading. See you in a few months!