The Cost of a Chronic Illness


Its day 2 of the eighth annual Diabetes Blog Week. The idea is that bloggers sign up to write about a set topic each day for a week, and readers can get a variety of different perspectives on the one topic. Here is today’s prompt:

Insulin and other diabetes medications and supplies can be costly.  Here 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?

The cost of having diabetes sure does add up. Over the years, I’ve definitely felt envious of my peers who get to spend their money on having a good time and living like there’s no tomorrow.

But if I have to have diabetes, then there’s no place I’d rather have it than in Australia. My own diabetes care has been relatively accessible and affordable. I am not judged based on my income or socio-economic status. I have never struggled to make ends meet. I have a stable job and a supportive family around me. However, I do expect that there are still many in Australia who would still find it hard to make ends meet.

Insulin is heavily subsidised through Medicare and the Pharmaceutical Benefits Scheme, costing me approximately $35 for 5 boxes of Novorapid insulin.

Test strips, needles and insulin pump consumables are heavily subsidised through the National Diabetes Services Scheme, which is an initiative of the Australian government. I would pay around $16 for a box of 100 test strips and a box of 10 infusion sets for my insulin pump. Needles are free.

My diabetes healthcare is completely free through the diabetes clinic at my public hospital. I have access to a diabetes educator, dietitian and endocrinologist, the latter of whom refers me to any other healthcare professional in the hospital that my diabetes desires.

I’m also fortunate enough to be able to afford a private health insurance policy, which costs me approximately a week’s wage. This covers the costs of any hospital care, and I get benefits on things like dental and optical services. As someone with diabetes, a private health insurance policy will also cover the cost of an insulin pump – something I would definitely not have access to without insurance.

I feel that the biggest barrier to my diabetes care would be the quality of care I have received over the years. Although the public system is free, it doesn’t mean that it’s necessarily great. Busy public hospitals just didn’t have the time for me, especially when there were young children and families who understandably needed it more. I was pushed towards self management after about a year, not knowing any better. In retrospect, not having the support of a diabetes educator from years 2-5 were really detrimental to me. I was unmotivated. I felt isolated, and my diabetes felt unmanageable.

When I jumped online and found the Diabetes Online Community in 2015, I started feeling less “conscious” of my diabetes. I developed an interest in it. I eventually got back in touch with my diabetes team and started on insulin pump therapy, which quite honestly changed my life. I found the motivation to learn and more actively manage my diabetes. Last year I began seeing a private diabetes educator, who now gives me all of the time and support I need. Today, I call myself an advocate, dedicating my spare time towards something I am really passionate about.

I wasn’t always comfortable with my condition. I wasn’t always motivated to self manage, and speak up for what I wanted. I wish a healthcare professional encouraged me to jump online. I wish a healthcare professional had suggested an insulin pump to me. I wish a healthcare professional had encouraged me to seek out peer support. I feel like there are a lot of people out there who are in that place where I once was, just waiting for the front porch light to switch on.

To read other responses to today’s prompt, click here.

A New Addition to Team Frank

“What else has happened in your life since diabetes came along?”

“How comfortable are you when you pull out your insulin pump or prick your finger?”

“What concerns you the most about living with diabetes?”

These were just some of the ice breakers as I sat down with a woman who I hoped I would be able to call my new diabetes educator, in a private clinic last week.

After six years of diabetes care in a public hospital, this was a completely different experience. My diabetes clinic-that-wasn’t-technically-a-clinic was situated behind the corner pharmacy store on a quiet inner city street, rather than a bustling hospital campus. My session was in a room on the ground floor, with an open window looking out into the yard behind the building. There was no sense of urgency, nor did I feel that my appointment was being rushed. There were no interruptions throughout the whole hour. I was being spoken to like a person who had diabetes, rather than the diabetes patient. The place certainly didn’t feel super clinic-y, either. Everything just added up to a nice, casual vibe. 

We looked over my diasend uploads, and straight away she picked up on trends of red numbers on weekends. Something my diabetes brain probably should have picked up on sooner. I admitted to cruizy days of weekend eating that were often triggered after a 10am hypo, and she helped me nut out a strategy to continue to cruise through and see a little more green.

I wasn’t really swayed one way or another as I talked through my diabetes management, either, and I wasn’t sure if this was a good or a bad thing. I suppose, like this decision, it was mine. It was diabetes on my terms. No judgement.

As we approached the end of the hour, I was asked how I wanted to proceed after today. I knew how I wanted to proceed. Yet I still hesitated for a moment.

I had spent the whole hour talking over my diabetes management so confidently. The numbers on my diasend report were pretty good, overall. I had reached the hba1c goal I had set myself at the beginning of the year. This session reassured to me how proactive I am in being able to manage my diabetes. Did I need to be here?

After being pushed towards self management for so long at the hospital, it felt strange to have the option there. After all the time constraints of the busy diabetes clinic, it felt super weird to have the choice of when my next appointment would be. I was paying for it, of course. But it still felt strange.

I’ve decided I want a three month catch up with my diabetes educator. As good as I may be, I still need that reassurance. I need that fresh set of eyes that can pick up things that my diabetes brain cannot. I’ll continue to see the endocrinologist at the hospital, and get referrals for all of my important check ups there. Most importantly, I’ve got someone to touch base with inbetween. If the need arises, I’ll be able to call or e-mail, and make appointments inbetween. I already rest a lot easier at night knowing that I have someone reliable at the ready.

Two years ago, I doubt I would’ve had the confidence to be able to identify my needs, to speak up for what I wanted, or to go through with such a big decision.

Today, I’m confident that this is one of the best decisions I’ve made for my diabetes care. With a new addition, Team Frank feels stronger than ever.

Making the Leap into Private Diabetes Care

I am extremely grateful for the diabetes care I have had access to over the past six years. The diabetes clinic at my local public hospital has given me access to every kind of service I could ask for manage my diabetes. All completely free of charge. Unless you count parking. Parking is a pain in the ass.

By far, the most amazing part of that diabetes clinic was my amazing Diabetes Educator, Gwen. Yeah, appointments were often as far as three months apart. Yeah, there was a gap in the middle of those six years where I probably should have kept in touch but didn’t. But Gwen was always there. She was always available by phone and by e-mail. She listened to me. She was someone I could rely on. I wouldn’t have wanted anyone else to support me as I began insulin pump therapy in May.

She retired several months ago.

In the last couple of weeks, I feel like I’ve lost my way. I no longer feel like I can achieve consistency day to day. I mean, I know I’m doing all the right things. Writing things down. Trying to take note of patterns. Checking my basal rates. Eyeing insulin to carb ratios. But none of these things seem to add up to consistent trends in blood sugar levels after eating.

I so wish I could call Gwen right now. All I want is someone to talk this over with. Someone who’s brain isn’t screaming diabetes, diabetes and more diabetes.

The high point of last week was a hba1c result that I had worked damn hard for. The low point was the diabetes education that went with it.

I’m a very hands on person with my diabetes management. Okay, maybe even a little too much of a micro manager. But the advice I received last week was very textbook. I didn’t feel that I was being listened to, nor did I feel that the way I choose to manage my diabetes was supported.

To be fair to this educator, it would have been difficult to give advice to someone who she had only met for the first time. Let alone in the space of a 30 minute appointment on a busy clinic day. Gwen was never replaced after she retired, which has meant a revolving door of whoever’s free to see me on the day I come into clinic.

However at the moment, I need better. I deserve better. I need someone who I can build a relationship with. I need someone who has more time for me than a busy and understaffed clinic in a public hospital allows. I need someone who will listen to me, and be supportive of my approach towards managing my diabetes.

The icing on the cake was being told that it would be okay for me to let my a1c creep back up a little, because that’s all I needed to avoid long term complications.

This is something that has weighed on my mind for some time. I have decided that I want to make the leap into private diabetes education.