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What a week. It’s been a big one. And here are some words I said to wrap it up…

And here’s some further reading..

All the details of this year’s National Diabetes Week 4Ts campaign.

Beyond Type 1’s DKA campaign.

IDF type 1 symtoms and DKA awareness campaign.

The tragic story of Peter Baldwin’s missed type 1 diabetes diagnosis and how his parents have committed to raising awareness of the signs and symptoms of type 1.

Georgie Peter’s type 1 diagnosis story via her blog Lazy Pancreas.

Thoughtful post from Rachel from Yoga for Diabetes about her diagnosis of LADA. Diabetes is so complex…!

See you in a week or so…I’m taking some time off here to catch up on everything else after the busy week. If you have a couple of spare minutes, please consider endorsing my nomination for this years WEGO Health Awards. Just click on this link – it doesn’t take long at all!

For the last sixteen years, I’ve been directly involved in National Diabetes Week (NDW) in some way. Admittedly, I missed a couple because we decided the middle of July is a good time to go to New York to escape the Melbourne Winter. Two years ago I missed half of NDW because I was in Orlando at FFL – I returned just in time for Kellion! Oh, and there was the year I had a little wee lass who I couldn’t stop looking at and cuddling.

But whichever way you look at it, I’ve been involved in NDW for a while. A lot of that was spent very much on the sidelines, because the campaign was type 2 diabetes focused and I was not. Or rather, my role at work was exclusively directed towards type 1 diabetes activities, and campaigns were always about raising awareness of type 2 diabetes.

This year, for the first time, there is an element of the NDW campaign that is exclusively focused on type 1 diabetes and it was launched today. It’s all about the importance of early diagnosis of type 1 diabetes, aiming to reduce the 600-plus hospital admissions each year because the early signs of type 1 diabetes have been missed. I know so many stories of people with diabetes being told they had a virus/urinary tract infection/were run down/growing pains (in the case of kids)/needed a holiday, and sent home with a prescription for antibiotics. Their type 1 diagnosis only came after ending up, very sick, in emergency, many needing ICU attention.

The campaign highlights the 4Ts of type 1 diabetes – Thirst, Toilet, Tired, Thinner.

We leaked a sneak peek of the campaign on Saturday to let everyone know that it was coming. The leaked video, which tells the diagnosis story of 9-year-old Isabelle, has been viewed by tens of thousands of people.

The response to the video and campaign details has been overwhelmingly positive, with people sharing the video widely amongst their networks. And comments have also been encouraging, telling us that the campaign is right in its tone and focus.

Today, the campaign was officially launched in Brisbane and all materials are now available for you to see and share. Here’s the campaign poster:

What can ­YOU do?

As this is a public awareness campaign, we need to get this information out to people outside the diabetes community. Mostly, those of us affected by diabetes now know the early signs of type 1, but that’s not the case for people who don’t have type 1 or know someone living with it.

You can help by sharing the video on all your social networks. Set your shares to public and encourage your friends to watch and share.

Share the poster – both online and off. You could print off a copies and take them to your GP office, school, supermarket and anywhere else with a community notice board. Ask your church or community group, or child’s school if the poster could be shared in newsletters.

Also, I wrote this piece for Mamamia Women’s Network – again as a way of reaching an audience outside the diabetes world. Please read and share this too.

Use the following hashtags: #ItsAboutTime / #NDW2017 / #4Ts

I have probably attended close to twenty Kellion Victory Medal Award Presentations over the years. You might think that they are all the same and to a degree, you would be right. Every ceremony involves people who have lived with diabetes for 50 or more years being given a medal while their story is shared.

And every single award ceremony has been just that. But the stories are rousing, the people are inspiring and learning about managing diabetes when technology was a glass syringe is sometimes mind-blowing! It doesn’t matter how many of these award ceremonies I attend, the overwhelming feeling of hope steadies and enthuses me for another year.

This year, 56 people were awarded medals, including sixteen 60-year recipients, one 70-year recipient and one 80-year recipient.

One of today’s 50-year medal recipients was Jenny Edge. Jenny frequently comments on Diabetogenic, never afraid to tell me when she thinks I’ve missed the mark; always happy to share her story.


I always love listening to Jenny. She’s very direct, and I always appreciate her no-nonsense attitude. There is no sandwiching how she feels with a couple of innocuous comments on either side of what she really wants to say. She gets to the point and gets there quickly. I find her quite brilliant!

Jenny was diagnosed as a young child, and today she told me how she really hated needles at first. ‘I thought they were cow needles,’ she said. ‘And then my dad showed me what cow needles really looked like – we lived on a farm. Suddenly, my insulin needles didn’t seem so scary.’

Although she received a 50-year medal today, Jenny has actually lived with diabetes for 55 years, so she’s only five years from receiving her 60-year medal. I hope to be there for that one too! Congratulations, Jenny!

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

If you can, think back to when you were diagnosed with diabetes. Can you remember much of it?

I can. I can remember almost every word that the endo, diabetes educator and dietitian said to me. I can remember that, in amongst the explanations of what diabetes was all about and how it would impact on my life, there were thinly-veiled threats about what would happen if I strayed from the plan I was being given with the expectation that I would follow it. I remember the rigid ‘my-way-or-the-highway’ instructions about how life with diabetes would be.

But mostly, I remember what was missing. There was no mention about the impact of diabetes on my emotional wellbeing. No one suggested that speaking with peers – others living with diabetes – might provide me with some much need comfort or camaraderie. No one hinted that I might like to do some of my own reading and investigating to come up with my own ideas of how to best manage this chronic condition that had moved into my body, my mind, my life.

No one told me there were options or suggested that I needed to carve out my own path and then work out to navigate it best.

If only I’d had a guide to help me do that – something to give me some ideas that felt more in line with how I lived before diabetes. I wanted something that shared real-life experience about how to make diabetes fit into an already really busy life, and help me be conscious of making healthier choices, but choices that didn’t feel as though they were suffocating me.

Now I have it – albeit 19 years too late!

Adam Brown from diaTribe has written Bright Spot and Landmines which he has sub-headed ‘The Diabetes Guide I Wish Someone Had Handed Me’. 

Click on link to be taken to the first chapter.

As I read this book, I started to think about how different those early diabetes years would have been for me – the years before I found my voice, my people and an ability to work out my own way with diabetes.

I could use words such as ‘sensible’ and ‘practical’ and ‘level-headed’ to describe the advice gently doled out in Adam’s book, and they would all be accurate.

But they would be underselling the value of the book.

Adam highlights the landmines – the things we all do to take short cuts – that inevitably negatively affect our diabetes. Often we think these short cuts save us time or ‘fix’ a diabetes problem quickly, only to find that they often turn out to be time consuming and actually end up causing more problems than the original one we were trying to address.

The bright spots are suggestions on how to positively and sustainably live with diabetes. They are easy to manage, and don’t ask for a significant shift in thinking, or large financial or even time investment to make the changes.

The book is segmented into four sections: Food, Exercise, Mindset and Sleep. This makes it super easy to use as a reference book and dive into it to help target specific areas that you want to think about. I’ve read the whole book through twice now, but keep going back to the sleep section, because I realised that it is an area of my life that I really need to address now.

I honestly wish that the day I’d been diagnosed with diabetes I’d been handed this book. I wish I’d had it on my shelf all those years as a resource to refer back to in moments of burnout or no motivation, or when I needed a little push to encourage me. I wish I’d been able to tap into Adam’s wisdom on specific issues when I was struggling with being in a food rut that was affecting my glucose levels, or in a funk because my mind was not clear or focused.

I’m so glad to have it now and have already made some changes which have been very positive. It might be 19 years late to the party, but this book will be on my shelf to be pulled down very, very often.

It doesn’t matter how long you’ve had diabetes; you WILL get something out of Adam’s book. But if you or a loved one is newly diagnosed, I would recommend you stopping whatever you are doing RIGHT NOW and getting a copy. You can buy a paperback copy here, or download the PDF here, naming your own price.

If you would like to win a copy of Bright Spots and Landmines, I can hook you up! Adam generously provided me with some copies when I caught up with him recently at ADA. Just click here and tell me in 25 words or fewer why you would like to win a copy of Bright Spots and Landmines. But chop chop! You’ve only got until the end of the weekend to enter. 

One of my bookmarked pages is this:

This is a public page and lists all open consultations from the Australian Government Department of Health.

I know. I live the exciting life.

I have it marked and check the page regularly to see if there are any consultations that are of interest to me and on which I would like to comment. The consultations I respond to are not necessarily diabetes-related, but then, my health is not always diabetes-related…

At the moment, however, there is a very diabetes-related consultation underway and I would encourage anyone affected by diabetes to take a few moments to fill in the survey.

The Department of Health is currently evaluating the FreeStyle Libre, specifically to consider whether it is suitable for subsidisation under the NDSS. (The consultation is happening following a submission to the Department for subsidisation of the product.)

An Assessment Panel will be set up to consider the submission, but before they meet, the Department is seeking comments from consumers and other stakeholders about the product.

You can take part by completely a very short survey. You need to provide some personal details (name, address, phone number and email address). There is one comment box for thoughts for the Assessment Panel to consider. You are asked to think about how diabetes impacts your quality of life; if you’ve used the Freestyle Libre, did it improve your diabetes management; what are your personal experience of using the device and any benefits or negative affects you may have noted; If you’ve not used the device, what would you expect it to do if you did. You are also asked to write about other devices and tools you use to manage diabetes and think about how they benefit your management.

Some things to consider when filling in the consultation survey:

  • Be honest about your experiences. You don’t have to have used the Libre to complete the survey. This is for anyone who is affected by diabetes and would like to weigh in on whether or not they believe the product should be subsidised.
  • Stay on topic! This is about Freestyle Libre, so it’s not really the time to say that you want a fully-funded artificial pancreas delivered to your door now please. (And just further to that, it’s not the time to lobby for the expansion of the NDSS CGM Initiative. Comments that are not relevant to the issue at hand usually get ignored. Stay.On.Topic.)
  • Try to use really clear language and don’t assume the person reading what you have written knows a great deal about diabetes. It’s likely that the Assessment Panel will include people who do know a great deal about diabetes, but the people from the Department conducting the initial consultation may not. So, don’t use abbreviations and acronyms, or jargon and diabetes slang.
  • This is the opportunity for people with diabetes to have their say. Health professionals are also invited to participate in the consultation, but obviously, their perspective is going to be very different to someone who is actually wearing the device to help manage their diabetes. What you have to say can’t be found in glossy brochures or opinions of those working with diabetes. Use the opportunity to really share your thoughts.
  • So, your experience about actually wearing the device, the accuracy of it, how it has changed your diabetes management (if at all), why you do or don’t like it, the devices convenience (or lack thereof), the best and worst aspects of it are really, really valuable.

The consultation is open until 17 July and can be accessed via this link. Please share with anyone you think may be interested.

DISCLOSURES

None! I’m sharing this information because I know a lot of people who are interested in this device and because many are frustrated at how expensive it is. 

Back from the ADA conference after whirlwind few days in San Diego which basically involved 19-hour days sandwiched between the first day (and 8-hour meeting) and the final day (a couple of short meetings before heading to the airport to fly home). Unsurprisingly, I slept most of the way home.

There were some absolute standouts of the meeting and here they are in super quick dot points. Some I’ll write about in more detail when I’ve finished hugging my family and infusing Melbourne coffee back into my exhausted body.

PR Fail

The ADA’s PR machine needs attention after the completely misjudged way they dealt with objections to their misplaced and archaic ‘photo ban’. It became the story of the first few days of the meeting and they really will need to reconsider what they do next year. (More on this another time, but here is a good summary from Medscape.)

Innovation away from the conference

While the conference is always full of late-breaking research and an exhibition hall of diabetes technology, the satellite events are often where the real innovation is at! On Friday afternoon, I went to the Diabetes Mine DData-Exchange event and was lucky to see and hear some of the latest and most innovative tech advances happening in diabetes, including lots in the DIY/#WeAreNotWaiting world.

Mostly, the room was full of those who knew what was going on in this space, so there really were only a few people who were surprised that there are many walking around with their own DIY kits, (which always makes me chuckle, especially if it’s a HCP having their mind blown by something PWD have known about and been doing for a while…)

(A bit of a watch this space from me as I am about to embark on my own build, which is slightly terrifying. The only thing giving me any confidence is that I have these two Wonder Women to call on if (when) I am completely lost!)

Wonder Women! Dana Lewis and Melissa Lee and their magical machines.

More at #Ddata17

Life for a Child

The IDF Life for a Child update, annually held at the start of the meeting, was, in equal measure, enlightening and despairing.

In this video, hear from Life for a Child Education Director, Angie Middlehurst, who recently visited the Diabetes Association of Sri Lanka and met some young people benefitting from the Program.

If you would like to consider helping Life for a Child, it costs only $1 per day to provide full diabetes care for a child. That’s right, one dollar a day. If you can, please do donate.

 

With Life for a Child’s Education Director, Angie and Health Systems Reform Specialist, Emma.

 

Who has a meeting at 5.30am?

Anyone who believes these meetings are junkets would reconsider the first time they need to be dressed, coherent, communicative and respectable for a 5.30 session. That’s 5.30am. And on the Saturday morning of the conference, I found myself in a room with a lot of other people (also foolishly awake at that time), to listen to the latest in CGM studies.

Thankfully, the session was super interesting with a lot of very valuable information being shared. (I really would have been pissed if I got up and it was a waste of time…)

Dr Steven Edelman from TCOYD was, as always, enlightening and added a most important ‘personal touch’ as he shared some of his own experiences of CGM. And some brilliantly relevant sound bites to remind the audience that while they may be focused on the machines and the algorithms and the clinical outcomes, this is about people living with diabetes.

Trying to tweet everything Dr Steven Edelman was saying…

Diabetes Hands Foundation wake

The news about the closure of the Diabetes Hands Foundation, and the move of its forums to Beyond Type 1 was met with sadness, but also a lot of optimism. Innovators in the online community, DHF was the first online diabetes network I ever felt a part of. It spoke to me, but mostly, it was inclusive. That’s what happens when you have people like Manny Hernandez, and later Melissa Lee, at the helm, and a team around you of people like Mila, Corrina, Emily and Mike.

DHF founder, Manny Hernandez.

We farewelled the DHF at a wake in a bar on 5th Ave in San Diego on Saturday evening and the love and gratitude for DHF was overwhelming. Melissa asked us to recall DHF’s Word in Your Hand campaign as a tribute to Manny and DHF.

My word on my hand… We can always use more of this.

I’m honoured to have been a part of it.

Language

Oh yeah, there was a language session at #2017ADA and I have PLENTY to say about it. Maybe next week….

Sex, Insulin and Rock ‘n’ Roll

The team from Insulet threw an event on Sunday night way up in the sky, overlooking Petco Ballpark, home to the San Diego Padres, and we were presented with a panel of diabetes advocates prepared to talk about anything and everything. Brilliant in the way it was candid, unashamedly open and, possibly for some, confronting. Well done to the panel members who really were prepared to answer every question with personal insight and experience. This format really should be rolled-out as widely as possible to as many people as possible to help breakdown any embarrassment, or idea that there are taboo topics in diabetes.

Children with Diabetes

I was lucky enough to be invited to attend the annual CWD-ISPAD dinner on Monday night and speak with a number of healthcare professionals working to improve the lives of children living with diabetes.

Jeff Hitchcock, founder of CWD, is a personal friend now. I guess that’s what happens after you attend a Friends for Life conference and are welcomed into the family. FFL Orlando is taking palce in three weeks and my family’s time at FFL remains one of the most overwhelming and positive experiences of my life with diabetes.

I caught up with Jeff a few times throughout the conference to speak about the organisation’s work. He gave me a CWD medallion, which is now firmly wedged in my wallet as a reminder of not only my FFL experience, but also value of Children with Diabetes.

diaTribe

I could complain about my 19-hour days, but then I think about Kelly Close from diaTribe and then feel sheepish for even suggesting that I’m working hard! On the final night of the conference, diaTribe hosted three events and I attended the later two: Musings Under the Moon and Musings After Hours.

These events bring together leaders in diabetes technology and innovation and digital health and offer an opportunity to ask questions and challenge (and be challenged!) in a far less formal situation that the official ADA conference. For me, this is where I learn the most as the speakers are prompted by hosts Kelly and Adam Browne to really reflect on where we are going in diabetes innovation. My only misgiving about these events is that there are not enough people attending. That’s not to say that the spaces were not packed to the brim – they absolutely were. But I do wonder if  perhaps it’s the people who really need to hear the realities of diabetes technology are not in the room…

MedAngel

I meet Amin from MedAngel as part of my time with the European Roche Blogger Group. Amin has created an easy-to-use sensor and app to help people with diabetes ensure insulin is kept at the right temperature. More about this another day, but in the meantime (after I’ve been using my sensor for a while), you can read about it here.

Learning all about MedAngel, with Amin.

Take aways

ADA is a very large conference. There is a lot going on, there are a lot of people around and I always leave with a lot to think about. Over the next few days…weeks…I’ll start to gain some clarity about a lot of what I saw, heard and learnt. It’s always the way after a big meeting like this one.

Someone asked me if I enjoyed the meeting and I suggested that was probably the wrong word to use. It was very worthwhile. I learnt plenty. I was able to catch up with advocates in the space who continue to push boundaries and lead the way in insisting that all work in the diabetes space is ‘person-centred’. People with diabetes are expected at this conference and seeing us as just being there – rather than having to fight for our place – inspires me to keep working better and harder.

Disclosures

I attended the ADA Scientific Sessions as part of my role at Diabetes Australia who covered my expenses, except for my first two nights’ accommodation which were covered by the International Diabetes Foundation so I could participate in meetings for the World Diabetes Congress where I am Deputy Lead for the Living with Diabetes Stream. 

It’s day four of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise.  Here are the links to today’s posts.

 

Today’s prompt: May is Mental Health Month (in the US) so now seems like a great time to explore the emotional side of living with, or caring for someone with, diabetes. What things can make dealing with diabetes an emotional issue for you and / or your loved one, and how do you cope?

One of the things I’ve found about living with diabetes is that the way I respond to certain situations is inconsistent. Some days, I’ll look at a rollercoaster CGM trace, shrug my shoulders and think ‘That’s diabetes!’ and move on. Other times, I’ll look at a similar rollercoaster CGM trace and burst into tears, wanting to curl up in the corner under a quilt, asking ‘Why? Why? WHY?’ while someone brings me a cup of tea and Lindt orange chocolate.

There are periods when my resilience stores are high and I can manage anything thrown at me, and other days where the smallest diabetes issue sends me into a spiral of despair. The unpredictability of diabetes is matched only by my own haphazard responses.

There do seem to be some things that do get me down pretty much any time they happen. When diabetes starts to affect my family, making my health issue theirs, I get very emotional and upset. I think it is probably a combination of sadness, guilt, anger and frustration that guarantees an emotional response.

The unknown of diabetes worries and scares me. I don’t think about it most of the time – I guess that is how I cope. The fears and anxiety are neatly packaged up and hidden away, brought out only in moments of weakness – or perhaps when my resilience is low.

Earlier this month, when I was an invited speaker at the Primary Care Diabetes Society of Australia (#PCDSAus) conference, and in the same session as me was Dr Christel Hendrieckx from the Australian Centre for Behavioural Research in Diabetes. Christel was very clear that clinicians need to consider diabetes and emotional health side by side as the two are undeniably connected.

I truly think that when we break it down, we can’t separate the two. When we live with a condition that is so ever-present; that we invest so much of our time and energy into managing; that we can’t put in a box when we are feeling over it and come back to it when we feel more equipped, it’s impossible for it to not impact emotionally.

We, all too often, draw a line with the physical on one side and the emotional on the other side. That line is terribly blurred – if it’s even there at all – when it comes to diabetes.

It’s day two of the eighth annual #DBlogWeek, created by Karen from Bittersweet Diabetes. This is the sixth year I’ve taken part and it’s a great opportunity to not only write about some truly interesting topics, but also a chance to read some blogs you may not otherwise.  Make sure you check out the list for today’s posts here.

Today’s prompt: 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?  

Diabetes is an expensive condition with which to coexist. Every now and then, I tally my annual diabetes expenses, at which point, the reason for my frequent flyer status at the pharmacy becomes more than apparent. Between insulin, insulin pump consumables and blood glucose strips, it doesn’t take long for the costs to add up.

Then I add the fees to see diabetes-related HCPs. I choose to see all my HCPs privately, so there is a gap (out of pocket) cost for all these appointments. Fortunately, pathology is bulk-billed, so I don’t pay to have my A1c checked or for any other blood work.

Private health insurance (PHI) is a significant cost each year. We pay about $450 per month to cover the whole family for top hospital and extras cover. PHI means that every four years, the full cost of my insulin pump replacement is covered, and it also means a choice of doctors if we’re in hospital, subsidised stays at a private hospital, and we claim optical, dental and orthodontic each year, plus other things as well.

I wear CGM every day of the year, which adds about $4,000 per year to the tally.

It’s a lot of money. Without factoring in incidentals such as hypo treatments and other things that just seem to come up, my out-of-pocket expenses for diabetes (excluding health insurance) would be about $6,500 per year.

And yet, I feel oddly fortunate, because there are few surprises – or changes – each year when it comes to my medical expenses. I know how it will all play out in the family budget each year.

I know the prices that I pay for all my diabetes expenses are pretty much set, and that means I can plan for them.

I know that every time I walk into the pharmacy to fill an insulin prescription, I will hand over $38.80 for five 10ml vials of insulin. We are never at the mercy of Big Pharma’s arbitrary price hikes. (Last week’s announcement from Lilly of a 7.8 per cent increase on the cost of Humalog – after years of substantial increases – has left me reeling and astonished at how my American friends can afford to just survive with diabetes, let alone live or thrive…)

I know that my diabetes consumables will be the same price every time I order them thanks to the NDSS. The National Diabetes Services Scheme (NDSS) is celebrating 30 years this year – that’s 30 years of subsidised diabetes supplies for all people living with diabetes.

I know how much my doctor will charge me and I know the Medicare rebate. And I know that if I was unable to afford to see my doctors at their private offices, I’d have access to the free diabetes clinic at the tertiary hospital less than 10 minutes from my home, and a bulk billing GP of my choice.

I know that if I couldn’t afford private health insurance, my ability to buy insulin, diabetes supplies or see healthcare professionals would not be affected.

I know that there is no time that I will need to ration insulin doses. I know there will be no time that I cannot afford to see a doctor. I know my pharmacy will always be able to provide me with the supplies I need to live with diabetes and drive the devices I use to manage as best I can. I know I am not really limited by maximum rebate amounts or that if I need more BGL strips, I can get them.

And I also know – and acknowledge – the privilege that allows me to afford health insurance that pays for my insulin pump, and to self-fund CGM, and to see the endocrinologist of my choice privately.

I know there are many other Australians with diabetes who are not as fortunate.

The outcomes for Indigenous Australians are worse – far worse. Poorer Australians have poorer health outcomes. People living in remote areas often struggle to access decent, timely and appropriate healthcare. Australians from CALD backgrounds may not understand a new diagnosis or the treatment being prescribed which affects how they manage their health.

Our system here in Australia is not perfect and we should be continually striving to do better. But it is certainly better than in a lot of other places. The thing about diabetes is that, as many of us wrote yesterday, we are wrangling a health condition that likes surprising us. We often feel we are fighting our own bodies. We shouldn’t need to fight to afford our care – and our health – as well.

The cards that cover my diabetes – and other health – needs. (Oh – and a credit card for all the out-of-pocket expenses…)

The other day, I walked into my local NDSS pharmacy and collected four boxes pump consumables and a couple of boxes of blood glucose strips.

I have a lovely pharmacist. She’s friendly and chatty and every time I visit, we catch up about how our kids are going and she comments on how I seem to spend a lot of time on aeroplanes and that I need to look after myself better. (She’s also my parents’ pharmacist, so I suspect that my dad asks her to say that to me.)

While we were talking, she was packaging up my supplies and came out from behind the counter to hand me a black bag. As I was paying for them, I had a really strong flashback to the days that I worked in a local pharmacy.

I was a pharmacy shop girl from when I was 15 until I was about 20. It was a convenient part-time job – a few hours on Saturdays and Sundays, and extra hours in the lead up to Xmas – and a great way to earn a little spending money.

I remembered that there was a customer who came in about once a month and that when he walked in, the pharmacist would step down from his little ‘stage’ with all the medications and bring out the customer’s order, wrapped up in a couple of paper bags. I had no idea what was inside them, and it took me a couple of years of wondering before I finally asked the pharmacist.

He has diabetes. It’s insulin and other things he needs for his diabetes,’ was the answer. ‘He doesn’t like to see the different products, so I wrap them up when I order them in for him and just pass them to him. That way, no one knows what’s in the bag.’

I knew nothing about diabetes back then. I just acknowledged what the pharmacist said with a nod of my head, and the next time I saw that customer, I handed him his package without a word.

I wasn’t working at the pharmacy anymore when I was diagnosed with diabetes, but it is where I picked up my first insulin prescription. I have never, ever thought to ask for my insulin to be hidden away, in fact, the only discussion I have is lying about promising that I am going straight home and don’t need a cool bag for the drugs. Pharmacists seem to worry that the hour or so the insulin is out of the fridge while I pop into a café to grab a coffee is going to send it sour.

But apparently the attitude of the customer at the pharmacy I worked at isn’t all that uncommon. Until the change in ordering from the NDSS, I used to collect my supplies from the NDSS shop downstairs at Diabetes Victoria. This was always fabulously convenient for me, considering I worked just upstairs. The products were always loaded into an opaque, black plastic bag. I remember someone saying those bags were used because a lot of people didn’t want others to know what was inside.

All mail being sent out by the diabetes organisation I worked at was sent in unbranded, plain envelopes. Apparently some people didn’t want their neighbours – or postie – knowing they were receiving mail about diabetes-related matters.

I’ve heard countless stories of people going to great lengths to hide their diabetes. I remember a case where a house was over-crowded with sharps and diabetes waste because the people in the house refused to throw out any packaging that might suggest someone living there had diabetes. They didn’t use sharps containers because they didn’t want to go to their local council for a free one because it might mean having to identify themselves as having diabetes. And they didn’t pay for a sharps container, because depositing it at a sharps collection point would also mean saying they had diabetes.

Another time, someone called me to complain because a letter sent out by the team I managed had slipped inside the plane envelope and the logo identifying the diabetes organisation was visible through the window. ‘I don’t want people knowing I have diabetes,’ I was told angrily.

This reluctance to let others know could be a matter of people simply not wanting to share their personal health with others, which is, of course, fine. But I suspect that it is more than just that. I think that in a lot of cases there is shame involved too. For every one of us who claims to be out, loud and proud about our diabetes, there are others who still want it hidden away – people who feel ashamed, and shamed, by their condition so much so that they don’t want others to know they are affected by diabetes.

I wear my diabetes very visibly and have never thought not to. I don’t feel shame about it at all. Diabetes is tough enough as it is without trying to conceal it from everyone as well. I just don’t have the headspace to think about how to hide it away.

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