I get annoyed when articles about diabetes get it all wrong. I would have thought that fact-checking is a pretty standard practise by journalists, but I’m finding that in many cases, this isn’t the case. Where it’s less clear is when someone is writing the facts correctly, but the overall sentiment doesn’t sit right. I guess that it is going to be up to the individual as to how they interpret the writing, but there are many occasions where most of the facts are right, but I feel it’s still all wrong.

On Sunday, the Age in Melbourne (and SMH in Sydney) ran a piece by national affairs writer Tony Wright. I generally like his writing and always try to read his pieces. So I was more than excited to see that he had written a piece about type 1 diabetes following JDRF’s Kids in the House (KITH) event at Parliament House.

I loved his introduction which set the scene of 100 kids sitting down to lunch with carbs listed; his description of the process of checking BGLs, guesstimating carb content of foods, insulin calculations and delivery was beautifully accurate. But there was some stuff in there that made me prickle. And I feel guilty and a little dirty for responding in this way. But I want to pull apart some of the comments I questioned and say how I would prefer they were reported.

Tony writes: ….daily reality for the 122,300 people in Australia diagnosed with diabetes type 1, also known as juvenile diabetes. Another six, most of them children, are diagnosed every day.

Renza says: Actually, type 1 diabetes is not also known as juvenile diabetes anymore and hasn’t been for some time. Just as it’s not known as insulin-dependent diabetes anymore. Why? Because type 1 diabetes can be diagnosed at any age. Also, we grow up! And using the term ‘juvenile’ means that people think it only affects kids and no one thinks about the support, information and healthcare needs of adults living with type 1 diabete

Tony writes:…..Type 1 really ought to have another name, for it is a more terrifying beast than the much more common diabetes type 2….

Renza says: Perhaps having different names for the condition is a good idea, although I’m far too tired to fight this battle and am sure that there are better battles to expend my energy on. However, it is perpetuating a myth by saying that type 1 is a harder condition to deal with. I don’t know about living with type 2 diabetes, but I would find it pretty terrifying if I was treated with diet or exercise or oral meds and my BGL meter gave me a reading of 22.1mmol/l and I didn’t have insulin to treat it and make me feel better . Which is my protocol as a person living with type 1 diabetes.

Playing the ‘mine-is-worse-than-yours’ game does nothing for anyone. And as Tony quoted in the previous paragraph, there are just over 120,000 with type 1 in Australia. How much attention do you think we’d get if sometimes we couldn’t ride on the coat-tails of the 900,000 people with type 2 diabetes? We’d get completely lost in an underfunded system and lose significant research dollars.

Tony writes:….Virtually all these people will come to conceal a secret: they fear going to sleep, afraid they will not wake up. Sometimes they do not.

Renza says: One person dying from a hypo from which they do not wake up is a tragedy and absolutely one too many. It is a terrifying and scary thought. But in all honesty, I wonder how many of us actually think ‘I hope I wake up in the morning’. I’ve spoken with several friends with diabetes who were diagnosed as kids and they say that this was never discussed when they were growing up. Today I see newspaper report after newspaper report with parents saying they are scared their kids will die overnight. Whilst in no way diminishing this fear, I wonder just what this constant reminder is doing for the kids. Do we want to instil such fear into them that as they lay themselves down to sleep they may not awake in the morning?

Kids in the House is a really important and valuable exercise to remind politicians about type 1 diabetes. Thrilled as we may be that Tony Abbott promised $35 million, we’ll need to see if he does in fact put his money where his far-too-big mouth is if a Coalition government is elected in 2013.

My only concern with any activity like this is that it packages up type 1 diabetes a little too neatly. It focuses solely on children and doesn’t address the support, information and education they will need as they grow older and become healthy adults; the focus is too cure-centric – of course that is the ultimate goal, but all our eggs in one basket will lead to so much disappointment.

But mostly, it allows our political leaders to say ‘we’ve done type 1 diabetes – we had KITH’. This cannot be a once a year, feel-good activity that ticks the type 1 diabetes box. The pressure needs to be maintained 12 months of the year.

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