Diabetes Advocacy

No Clinical Need, No CGM For Me

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Last week, the opposition pledged $80 million towards subsidising Continuous Glucose Monitoring technology if elected at the upcoming federal election in Australia. The pledge would subsidise Continuous Glucose Monitoring technology for people under the age of 21, in addition to those with a clinical need such as pregnancy or hypo unawareness.

It’s great to see a commitment from both sides, and hopefully these announcements will pave the way to access for the rest of us in the future. I am happy for those who may see a benefit should either successful political party honour their pledge. I congratulate those who have lobbied tirelessly for several years, even though it took a federal election for their efforts to finally be recognised by both major political parties.

The rest of this post, however, is completely selfish.

I am disappointed that I will miss out. Even though I’m not particularly interested in using a CGM, I still feel very much left out.

The political motives behind both of these announcements irk me. People have been lobbying tirelessly for several years to get Continuous Glucose Monitoring technology subsidised, and yet it takes a federal election for their efforts to finally be recognised. I’ve watched heartfelt current affairs segments, news pieces, and read social media posts over the last two years, with non committal responses all the while. Yet along comes a federal election, and suddenly both parties really care about diabetes.

So, I don’t have a “clinical need,” and will not qualify for a CGM. What’s to stop me from inflicting hypos on myself, or badly managing my diabetes in order to get one? Then there’s the issue of those young adults who will be able to access a CGM now, and then lose it as soon as they turn 21. Doesn’t seem very fair, does it?

I’m just a young adult trying to make my way in a very expensive world. Keeping myself healthy already takes up a large amount of my time, my energy and my income. I simply cannot afford to pay for what is essentially a luxury product. Just because I don’t have a “clinical need,” it doesn’t mean that this technology wouldn’t change the quality of my life.

As a person with a chronic illness, I am always reminded in the media of the burden I place on the healthcare system. Surely an investment in my health would be a step in the right direction. Surely having the option of using this technology would only motivate me further to manage my diabetes to the best of my ability.

Diabetes technology should be available for all who wish to use it. Period.

Sometimes I think that it looks better for politicians when they are photographed helping children or more visibly sick people, rather than ordinary ones.

But hey, that’s politics, I suppose.

Setting the Record Straight

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Diabetes campaigns here in Australia never cease to disappoint me. They always tend to focus on the negatives, such as the complications and the hard hitting statistics which instil fear. Our campaigns lack positivity, and don’t do those of us living with the condition a lot of justice.

In my humble opinion, a campaign for Diabetes Week is simple. One where we encourage people living with the condition to share their stories in order to help raise awareness. Diabetes UK always seems to do this very well, with positive, empowering campaigns that actually engage and involve people with diabetes.

Before I start getting depressed about the awful complication-themed Australian diabetes week next month, I thought I’d add my two cents worth to Diabetes UK’s fantastic campaign for Diabetes Week, Setting the Record Straight. Here goes…

1) A diagnosis does not mean that you’ll develop complications. I heard a lot about complications in the Australian media during the first year or so after my diagnosis. I remember feeling horrified about that possibility, and even writing myself off because of my diabetes in conversations. It took me a long time to realise that this was in fact, not true. 

I still remember a fantastic quote I found somewhere on the internet that went something like “you might feel like crap today, but complications can take years to develop.” It’s a great perspective and it always reminds me that it’s never too late.

2) Diabetes takes time to get right. A LOT of time. After I was first diagnosed, I remember talking to others in the context that I would eventually get it sorted. Once I had everything figured out, I wouldn’t need to test my BGLs so often and I wouldn’t be having so many hypos. Six years later, I’m still trying to get it right!

My diabetes educator reminded me recently that “even though we want to do as much as we can straight away, it takes time to get it right and you need to be patient.” Be kind to yourself.

3) You don’t have to turn your life upside down or give up everything! Magazines are full of ways to change your life and feel better overnight and blah blah blah. Doctors talk as though change can happen with a wave of the magic wand. It’s completely unrealistic. I’ve made a lot of small, gradual changes to my diet and my routine since I was diagnosed. But I haven’t compromised on the things I love. I don’t do dedicated exercise, because I don’t enjoy it. I still eat chocolate. I still drink lots of coffee. I don’t peel the skin off my takeaway chicken. I still enjoy myself at Christmas time. 

A colleague recently told me that “it’s easier said than done.” While I do agree, I reminded her that it doesn’t mean that you have to be unhappy.

4) Finally, I’m loving the Faces of Diabetes campaign that’s going round on social media. Because there are actual human beings behind the condition, and it’s important to keep that in mind when advocating. You can get your picture here.

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Happy Diabetes Week to those of you in the UK! You can find out more at diabetes.org.uk and by following #DiabetesWeek on social media.

DX2 Sydney

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Two weeks ago, I had the privilege of attending Abbott’s Diabetes Exchange event in Sydney (see below for disclosures). I went into this event excited about trialling the FreeStyle Libre, and meeting some of the other Australian bloggers in person. Having only communicated with PR ladies Hannah and Laura prior to the event, I was surprised to learn that there was an Australian based Abbott team. I was also pleasantly surprised that they were such a core part of our proceedings over the two days.

Peter, Bruce, Michael, Pamela and Jen were with us throughout the whole two days worth of proceedings. They each presented in front of us, but they were also very much with us in a social context, too. They dined with us on Thursday evening, they sat next to us during the formal proceedings, and they also put their cooking skills to the test with us on Friday afternoon at the Sydney Fish Market.

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Going into this event, I honestly wouldn’t have thought I’d have anything in common with these guys. They were there to sell us a product, after all. However, I had some really great conversations with most of them. Although not all of them had diabetes themselves, I could see how genuinely passionate they were in the work they did. I could see how genuinely interested they were in us. Not just about the diabetes, either. I recall speaking with Jen, in particular, for at least an hour at dinner on Thursday.

One of the highlights of the event was hearing from Udo Hoss, who talked us through the “science” of the FreeStyle Libre.

We learned about how the Libre sensors were clinically proven to produce accurate and consistent results across their whole 14 day life. I learned about the term Mean Absolute Relative Distance (MARD) from regular blood glucose checking. From memory, the MARD must be below 15% in order to be a reliable indicator of glucose levels. The Libre system achieved a MARD of 11.4% across its 14 day sensor life, making it accurate enough to make insulin dosing decisions from. For this reason, Abbott are pitching the Libre as a replacement for finger pricks.

Given that the MARD is slightly higher during the first 24 hours, I cheekily put my hand up and suggested that we should receive an extra day’s worth of sensor life to compensate. There was a lot of laughter in the room, but sadly no leeway!

There were also three conditions where we were told to confirm a Libre scan with a finger prick.

  1. When glucose levels were low.
  2. When symptoms don’t match glucose readings. (Corrected)
  3. When glucose levels are rapidly changing.

We raised the question of how we would be able to push the sensor life beyond it’s 14 days. Unfortunately they automatically shut down, as Abbott cannot guarantee their accuracy or safety beyond the 14 day life.

We were also told that the data lagged by about 6 minutes.

It’s easy to sit behind a computer and complain about something being too expensive, or something else being difficult to access. Trust me, I’m guilty of it. Yes, Abbott are a business, and like any business they are trying to sell us a product. I acknowledge how privileged I am to be able to try this product free of charge. The $95 price tag for each sensor will place it out of reach for many, I’m sure.

That being said, sitting in with the team from Abbott really gave me a greater appreciation for the whole product. I had a much greater appreciation for the whole research and development process, and not just the item that I see on the shelf at the Chemist.

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Thanks again to the team at Abbott for your great hospitality, and for having me at DX2 Sydney.

You can learn more about the Australian launch of the FreeStyle Libre at freestylelibre.com.au.

Disclosure: Abbott paid for my travel expenses to and from Sydney. I received a FreeStyle Libre reader and two sensors free of charge. There was no compensation, or expectation that I would blog about the event. All opinions expressed here are my own.

Language Matters

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Today is Day 3 of Diabetes Blog Week, an annual event in the diabetes online community created by Karen at BitterSweet Diabetes. Here is today’s prompt:

There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

My guess is that everyone will be talking about “diabetic” versus “person with diabetes” today. I wrote about this a few weeks ago right here. In short, I feel that the word “diabetic” is a label, while the word diabetes describes me and empowers me.

Today, I want to talk about the power of Language. I believe that Language has the power to influence how diabetes is talked about in the public domain.

At Diabetes Exchange in Sydney last week, we spoke about the importance of credible diabetes reporting. There are so many people and groups on social media who are passionate about their cause – whether it be diabetes technology, diabetes diets, government funding or anything inbetween. Pick a cause, and you can probably find a tribe. I think that’s fantastic. I love that we have so much passion in our community.

Yet many of these messages aren’t conveyed in a credible or sensible manner. I come across many groups and comments on social media sharing sensationalised messages. These people are so passionate about their cause, that they will happily skew the truth in order to receive attention. These messages are often inaccurate, generate fear, and don’t really do anything to support people with diabetes.

However the sad reality is that the wider media eat up these sensationalised stories. The device that stops her from going unconscious overnight. The suffering boy who just saved his life with a shot of insulin. You get my drift.

These stories don’t really give a good representation of people with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in some cases, that a person with diabetes could drop dead at any given moment! I don’t feel that it gives us a lot of hope.

Yet the success stories don’t receive enough attention. Where are all the people who are living relatively normal, happy lives with diabetes? Positivity can be a wonderful motivator for health, and I feel it’s sorely overlooked.

My point being, it starts with us. With you and with me. We have the power to shape how diabetes is talked about in the media and in the public domain. To borrow from Renza, Language Matters.

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

Fear as a Motivator For Health?

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During a diabetes themed episode of Sunday Night this week, I noticed several tweets from Diabetes NSW that had been carefully planted into the #SN7 feed on Twitter (the program’s hashtag). Including this one, which sought to tell us that 7,750 people die from diabetes and related complications each year.

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It’s not the first time I’ve seen these kind of Tweets from Diabetes NSW as of late. During the diabetes community’s I Wish People Knew That Diabetes day last month, Diabetes NSW once again hijacked the feed to fill us in on some of the scary facts.

On both occasions, the Tweets appeared automated and displayed little understanding around the respective hashtags they were hijacking.

After seeing this tactic employed once again on Sunday evening, I couldn’t help but call them out.

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As a member based organisation that supposedly represents and supports people with diabetes, messages like these really do members a disservice. Do messages promoting complications and instilling fear around poorly managed diabetes really motivate individuals to look after their health? I think not. And judging by the reaction I received on Twitter, I am not the only person who feels this way.

While stories like these may be effective on people without diabetes, I feel that they sorely overlook those of us who already live with it. In my opinion, health consequences such as obesity, sugar consumption, physical activity or kidney failure are separate issues that need to be dealt with exclusively from diabetes.

The sad reality is that the wider media eat up the sensationalised stories around the complications and fear surrounding life with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in the case of the aforementioned Tweet, that a person with diabetes could drop dead at any given moment!

Yet the positive stories, the ones around people with diabetes being able to live healthy and full lives are often overlooked, or overshadowed by the sensationalised stories. Diabetes NSW were quick to point me to a page of positive “ambassador” stories on their website, including another “Frank” who I reminded them of. Yet I am reminded of this recent post from Melinda at Twice Diabetes. I can’t help but wonder whether they are ambassadors who are truly engaged with the organisation and the community, or just figureheads that are referenced when necessary.

To be fair, Diabetes NSW is not the first organisation to instill these messages. We had the dreadful 280 a Day campaign for Diabetes Week last year in Australia, and more recently we had the very confusing World Health Day.

Shaping the conversation around diabetes in public begins with the organisations who represent us. I only wish we weren’t so hard done by all the time.