Diabetes Advocacy

Sign the Petition in Support of CGM Access for All

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I’ve been using FreeStyle Libre intermittently since May 2016, before making the leap to full time CGM in September 2019.

Today, continuous glucose monitoring is something I couldn’t live without.

I acknowledge my privilege in being able to say this.

I can’t imagine not being able to glance at my phone and see updated blood glucose readings every five minutes, or the safeguard of having alarms alerting me to out of range levels while I sleep.

For most adults in Australia, with the exception of those who meet strict eligibility criteria, funding for CGM comes out of our own pockets. Those who do meet the strict criteria face losing access to the subsidy once their circumstances change – whether it be turning 21, no longer being pregnant or no longer qualifying for a health care card.

The only way that I can afford this technology right now is through the generosity of the diabetes community. By using transmitters that have been very generously donated and rebatteried, and by restarting sensors that are hanging on my arm by a thread.

Even that still costs me a good $1,500 or so per year.

There’s a pretty important petition that’s been circulating recently on the Parliament of Australia website, calling on the government to fully subsidise CGM for all Aussies with type 1 diabetes.

If you haven’t done so already, please take a moment to add your signature and then share the link far and wide.

https://www.aph.gov.au/petition_sign?id=EN2168

From the bottom of my busted pancreas, thank you.

ADA Diabetes Social Media Summit

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Last week, the American Diabetes Association held their annual scientific meetings virtually (similar to our own Diabetes Congress that happens in Australia in August). To coincide with this event, Ascensia Diabetes Care held another of their social media summits.

The Social Media Summit, which made its debut in Australia in 2018 (and yes, my Aussie pride is on the line here), has brought together people with diabetes in different settings throughout the world to talk about some of the more difficult topics that are often more challenging to discuss. Thanks to this pandemic (and technology), I was invited to crash this forum and hear from some diabetes advocates from around the globe.

I’ve said it before, and I’ll happily say it again – Ascensia is one of those companies that truly want to engage with the community they are operating in. Since our introduction in 2018, they’ve continued to facilitate meaningful conversations through forums such as these. I’ve also seen a campaign to reduce the stigma around diabetes complications, support for people with diabetes to attend scientific meetings and a blog series encompassing a diverse group of voices. I’ve forgotten that Ascensia are also the manufacturer of a blood glucose meter, rather than just the facilitator of these initiatives.

Admittedly, I didn’t have a lot to contribute to this forum. Unless you count my frequent Tweeting. It was really insightful hearing of the challenges presented by advocates from across the globe, and it really paled in comparison to my own privileged little corner of the world.

I think one of the biggest takeaways from this is that nobody ever has the right to invalidate somebody else’s experience. There’s undoubtedly a lot of issues unique to the minorities in the diabetes community. Whether that be people of colour, people with type 2 diabetes and people unable to access healthcare or treatment for their diabetes – to name a few. In the past I’ve definitely questioned for example, someone with type 2 diabetes saying that they don’t feel the DOC (or part of it) is not a safe space for them, when it’s not really my place to do that.

I know that I feel most comfortable when I’m listening and learning about how we could do better to include others. I certainly don’t need to make this about me.

The other big topic of discussion was accessing healthcare during a pandemic, and there were some really insightful contributions.

One point that hit home for me was that for many (elderly) people, such as the Nonno’s and Nonna’s that I know of, visiting a healthcare professional may be one of their few human interactions. In our house, we often criticise the lack of options for our elderly who aren’t as technologically adept as companies have forced us to go online (long before this pandemic). There’s a million dollar business idea right there.

While many of the participants in this summit were undoubtedly informed and confident enough to approach their healthcare professional should an issue arise, this may not be the case for everyone. For those people lacking that confidence, potential diabetes complications could go undetected.

The statement that really hit home for me was that it’s a privilege just to be receiving treatment, regardless of the diagnosis. Not everyone has that privilege.

Disclosure: Ascensia Diabetes Care invited me to participate in this summit from the comfort of my own desk chair and computer screen. I received two and a half hours of peer support in return. There was no obligation for me to post, but I am an over-sharer and am doing so anyway.

Warm Fuzzies

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Last night, this photo popped up in my memories from four years ago.

Instantly, I was filled with a massive warm and fuzzy feeling.

I think out of all the incredible events I’ve been a part of in the diabetes community, this one would definitely be my favourite.

Four years ago, Abbott brought together a group of Aussie diabetes bloggers for the launch of the FreeStyle Libre. While it was really cool that I had scored a trip to Sydney and some cool new tech to try out ahead of others, it was pretty special to me for a totally different reason.

While a lot of these bloggers already knew each other – whether it be that they lived on the East Coast or that they had been around in the DOC a lot longer than I had – I was meeting them for the first time. I had only ever known these people online, mostly through Twitter handles and weekly OzDOC chats that were happening at the time. It was pretty special to embrace people who I felt like I already knew, but didn’t really know.

This was the first time that I had spent surrounded by so many people with diabetes. I did feel like the new kid throughout those two days, amongst a group of people who already seemed so close-knit.

These two days were filled with some bright conversations. To give Abbott Diabetes Care some credit, they have never intended to direct or takeover these events. These DX events have truly been about people with diabetes.

Thankfully, this event wasn’t the last of these conversations. Abbott held subsequent ‘DX’ events that had even lesser focus on their product. PWD have been given many other platforms to have their voices heard since then. But of course, there will always be room for more.

As for me? I’m going to be selfish and say that I’m grateful that it wasn’t the only time that I’d get to see these people, and that they weren’t the only people with diabetes (or people connected to diabetes) that I’d ever meet. I’ve had the privilege of spending more time with these folks, and others, since then.

Four years later, I’m still just as grateful to Abbott Diabetes Care and Weber Shandwick for putting together such a special two days.

This is exactly the warm fuzzy feeling that I need right now.

#HealtheVoicesAU 2018

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Last weekend, I was lucky enough to get to Sydney to attend HealtheVoices (which I learned is actually spoken more like ‘healthy voices’ rather than ‘health-e-voices’).

After seeing the wild popularity of this conference among folks in the diabetes community who had attended US editions in recent years, I was curious to see what it was all about. This was the second edition that had been held in Australia, and my first time attending. Even if I didn’t get anything out of it, I figured it would still be worth attending just to catch up with some of the diabetes gang that would be there.

HealtheVoices is run by a company called Janssen (pronounced yaan-sen), which I believe is the pharmaceutical division of Johnson and Johnson. Their mission is to create a world without disease, and hence this program which is designed to support online health communities and advocates.

I guess this was a uniquely unique conference experience for me, because it put diabetes into a broader perspective of other health conditions. Just like diabetes, many of the other conditions represented there appeared largely invisible. I’d be lying if I said I didn’t find myself wondering where diabetes ‘sits’ in relation to all of the other conditions there.

Some of the other health conditions represented there included crohn’s, colitis, arthritis, various cancers and cystic fibrosis related diabetes. There were people living with the conditions, representatives from health organisations and carers. I was once again on the receiving end of stunned looks upon telling people I had travelled all the way from Perth.

SANE Australia, who appeared to be a major partner of the conference, supplied at least 20 or 30 mental health peer ambassadors, which speaks volumes about the prevalence and need to address mental health.

Throughout the weekend, I found myself explaining to others how the diabetes community operates, and how the diabetes ‘gang’ has become somewhat of a close knit group through social media, industry sponsored events, advocacy work and similar interests.

As I was listening to keynote speeches and personal experiences being shared on stage, I was left wondering what ‘community’ looked like for people living with health conditions other than diabetes.

Just last week, I wrote about how I have so many different ‘tribes’ that make up my diabetes support system. It couldn’t be more true. Because no matter where I am or who I am with, being part of the diabetes community always makes me feel that I am part of something bigger. I always, always, always feel like I am part of a community that has my back.

I really wondered about the dynamics of other health communities, what sort of a role consumers have in those communities, and whether they were as ‘closely knit’ as mine.

Something tells me that the diabetes community really is leading the way.

Disclosure: Janssen ANZ covered my flights, accommodation and shuttle to Sydney airport to attend HealtheVoices. Dad gave me a lift to and from Perth airport, and I happily paid for my train fare into Sydney CBD as I wished to arrive earlier in the day. I was fed and watered across the duration of the event, and also received a tote bag with some HealtheVoices stationery. 

The only condition of my attendance is that I would disclose the above if I chose to share my experience online. These thoughts are entirely my own. I happily gave up a day of annual leave from work to attend, as well as my Saturday.

A Type 2 Diabetes ‘Shake?’

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Last weekend, we were on the hunt for a dog friendly café to keep this little guy entertained.

My sister suggested a place, before casually mentioning to me that they had a ‘type 2 shake’ on the menu.

What, is that like a health shake or something? I asked.

No, it’s actually a shake that’s got lots of sugar in it, she replied.

We eventually drove there to find the place closed.

After we had driven elsewhere and I was finally caffeinated, I began googling this place in search of a menu. Indeed, it was an indulgent shake that the user was encouraged to try ‘at your own risk.’ I then migrated over to Facebook, where I eventually found a recent post promoting the menu item in question.

I was so frustrated. Yeah, they had specified the type of diabetes, but that wasn’t the point.

Nobody intentionally asks to get diabetes.

We all know that sugary treats in excess aren’t good for us. We all know that in excess they may eventually lead to obesity, insulin resistance and type 2 diabetes.

But that isn’t always necessarily the case.

We also know that some people are genetically predisposed to developing type 2 through things like family histories or previous gestational diabetes. Others are ethnically or geographically predisposed to developing type 2 diabetes. Then there are those who don’t have an equal chance because they may lack things like the basic education or quality healthcare that I take for granted.

The last thing that people living with diabetes need is reminders that make them feel guilty, blamed or shamed for their choices.

The last thing that people living with diabetes need are messages that further stigmatise a condition that is already surrounded by, you guessed it, a great deal of stigma!

Yet here was this shake that was making a mockery of people with diabetes. I’d be willing to bet that a Cancer shake would never appear on the menu, so I don’t know why the owners of this cafe felt that diabetes was okay to joke about.

So, back to that Facebook post. You bet I left a comment on it. There was no swearing or personal attacking in said comment. But it was a little strongly worded – something I regret in hindsight – indicating that blaming, shaming and stigmatising was not helpful to people with diabetes.

24 hours later, a notification popped up in my Facebook feed. I was expecting some kind of acknowledgement or explanation.

But nothing could have prepared me for the response I received in return.

To paraphrase, I’m a miserable troll who should pull my head in and stop being a keyboard warrior (they obviously had no idea who I was). This ‘type 2 shake’ was apparently a ‘statement’ that the sugar it contains is not good for you. But what do I know, apparently type 2 diabetes is a great catchline to sell a product!

With no time for such negativity in my life, I thanked the café for their kind words. After expressing that it was a shame that they were unable to the larger issue, I wished them a lovely day and bowed out of the conversation.

With every red notification icon that popped up on my Facebook, I was expecting to see others chime in with more ignorant replies to my comment.

Surprisingly, quite the opposite happened.

The diabetes community rallied behind me.

Within a mere three hours, I had at least ten comments on that post in support of what I had said. People were tagging their friends. I honestly don’t think it was the shake itself that was triggering commentary anymore. It was about the sheer ignorance that came from their comment.

Had the Facebook post survived few more hours, and it surely would have gone viral.

But it mysteriously vanished not long after.

While the cafe clearly didn’t like the negative attention that they were getting, I highly doubt that I got my point across given their highly ignorant response.

I can’t really say that it’s worth throwing any more of my energy towards.

I only know that I won’t be going back there again.