Counting the Costs of Living with Diabetes

It is the eighth annual Diabetes Blog Week, started by Karen from Bittersweet Diabetes and today is day 2 – well I just scraped in as it being day 2! The day one topic is here about expecting the unexpected and today the prompt is about the costs of living with a chronic condition (I prefer not to use the word “illness”).

Insulin and other diabetes medications and supplies can be costly.  In the US, insurance status and age (as in Medicare eligibility) can impact both the cost and coverage.  So today, let’s discuss how cost impacts our diabetes care.  Do you have advice to share?  For those outside the US, is cost a concern?  Are there other factors such as accessibility or education that cause barriers to your diabetes care? 

Living with any chronic health condition is tough for many reasons and costs are not just financial. IN fact for me, the costs on mental health, wellbeing, daily experience of life; the times where you are trapped inside a body that is going its own way, while the rest of the world walks on by – those are the most bitter costs. But the financial costs are the real, raw, survival costs. If you can not access what you need to stay alive, then you are completely screwed. Many of us would pay anything to have good health, but it is not always possible, and there are plenty of people who can not even afford to buy what they need to stay alive. I feel wrong writing about the costs of diabetes in Australia, knowing there are children who can not even access insulin….yet my health costs are higher than average, and they do cause me difficulties, and there are personal financial barriers to accessing some of the latest tech.

Many years ago we were very lucky to have the creation of our National Diabetes Services Scheme – the NDSS. I can actually remember the day I was registered..isn’t that funny. It must mean that it was really very life changing for me. I was sitting in my parent’s flat where I lived at the time and I think there was a telephone call involved, and of course celebration of the fact that my costs for living with diabetes were about to be significantly reduced. The NDSS subsidises a range of diabetes management products, including blood glucose test strips, syringes, finger prickers and insulin pump consumables. When I first went on a pump around 2000, these were not covered, but I was able to make claims on my private health insurance. There was long campaigning and advocacy by many people, and the pump supplies were placed on the NDSS eventually, for people with type 1 diabetes.

Along with the NDSS there are a number of layers to the financial support in Australia for life with diabetes, including our Medicare system, which provides all of us with a range of benefits for services; private health insurance (which is not cheap in itself); and the PBS which lists medicines including insulin. Even with all of this, there are many barriers. Private health insurance was costing us $500 per month but I have just swapped out to a cheaper plan, which is now $310 per month. The most important part as a pumper, is ensuring that the hospital plan covers a pump every 4 years, because I can not afford the $5000-$7000 each time, and funds vary wildly in their coverage.

Children with type 1 diabetes under 16 are also able to access a health care card, which gives much cheaper medicines and supplies. However this stops at 16 years, because of course your diabetes costs stop then….this has always been something I think we need to change, to have health cards for life for people with type 1 diabetes.

In an average week I could go through around 7 pump sets; 2 pump reservoirs; 100 or more blood testing strips;  a cartridge of insulin; and a few lancets (depending on how much I can be bothered changing them!) and a container or 2 of glucose tablets. I also have a range of chronic conditions, some associated with diabetes, some not. Most of them relate to my diabetic gastroparesis, so these costs are added on, and include 5 different medications for my messed up digestive system; as well as asthma medications. Some days I feel like I am in the chemist a couple of times a week! On top of this are costs for all of the specialists I see, the gaps to see the doctor, any tests needed and so on.

Despite being someone who would benefit immensely from continuous glucose monitoring or CGM, I can not afford this and at the moment, they are not covered under our systems, although some children and young adults can now access these for free until aged 21, because, well like the health care card, diabetes will be much easier then….

Yet in my work in diabetes over the past 16 years I have spoken to many people in other countries, including some of the richest, who can not afford or access even the smallest of things. The recent increase in insulin costs in America are shocking, and I return to the fact that there are children in the world who die from lack of access to insulin, when we toss away vials that are not completely used. The Insulin For Life group are doing amazing work – please check them out here. 

So yes, sometimes I do feel like the costs of life with type 1 diabetes are high. But then I stop and remember where I live. I look around at the wide open spaces, the country feel of an Adelaide street, the tall gum trees harbouring koalas as I walk my son to school, the peace at night, broken only by the quiet hoot of the local tawny frogmouth birds, calling their love songs to each other, and I remember how lucky I am. I am lucky to be a white Australian with a moderate income, who can access what I need to survive. I am lucky to have family who can help me out when needed, to have a wonderful Endocrinologist who has been with me since I was 18 years old (and I have told him he can not retire!) and access to all of the services, medicines and devices at my fingertips.

Not everyone is so lucky, even in Australia. Our Indigenous community have much higher rates of diabetes, incredibly terrible rates of diabetes complications, and lack of access to services and medicines. People in rural and remote areas of our wonderfully huge country, have difficulty in accessing services and products, and there are plenty of people who struggle to put a roof over their heads, let alone afford fancy new diabetes tech. or the ability to see a doctor of their choice.

Despite changes still needing to be made here, having the ability to live my wonderful life each day is down to all of the work done by many, and one of the best health care systems in the world, and for that I am incredibly grateful.

Helen