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Monday, 16 May 2016

CGM Brain Jumble

On my Facebook, in my messages, on T.V. All day yesterday I watched news cycle around about the CGM-funding announcement that came from Turnbull's office.

The announcement that, if elected, the coalition will invest $54 million in subsidies for as many as 4000 children (up to the age of 21) to receive CGM funding each year. 

I tried to write about my feelings yesterday, and found that I couldn't. I stopped, started, stopped and went for a walk to try to sort through what I wanted to say. Finally, I wrote down all the crazy jumbled feelings in a document so that I could try to sort through them. I don't know if I'd ever felt so confused about a diabetes announcement in my life. I had to reconcile with myself the conflicting feelings of happiness, sadness, anger, hope, and utter deflation. 

It wasn't until I read Bec's blog that I could even start to sort out why I had spent the day feeling so off about it all. 

I was of course, immediately happy about the announcement. CGM is an invaluable tool, and I am so happy that it was finally being recognised and may potentially be offered to kids who could really use it. And I was happy that it meant that Type 1 was being talked about for once - and even all day long! Something was actually spotlighting us. 

I was hopeful that now that the conversation had been started, that it might continue. Hopeful that one day CGM would be more financially accessible, if this much attention was being paid to it. Hopeful that all the hard work of those groups campaigning would pay off, and they would be rewarded for their efforts.

But after that happiness came the disappointed anger, that Type 1 was being shamelessly bandied about as a way to garner votes, with no set-in-stone promise to show for it. After the election there is every possibility that it may not be mentioned again given the lack of timelines and delivery mentioned, so I felt scared about how it was being used as an election tool, aimed directly at those who had made the most noise - the parents of Type 1 kids.

There was guilt. A lot of it. Knowing that I will more than likely be voting against the technology, because I care about the bulk-billing system and other agendas more. I am hoping that the Labor party will announce a similar pledge to ease my troubled mind. But as an adult with Type 1, trying to save for a home loan, I see a bulk-billed GP and rely on my blood tests to be bulk-billed so that I can afford to see my diabetes specialists. I cut money in a medical-sense where I can to ensure that I can pay for the specialist help that I need to adequately control my diabetes. It has been made very clear that the Turnbull government are still going ahead with the cuts to pathology, no matter what the papers are reporting. It would mean more personal cost to me, to vote this policy in. Its a hard thing to ask someone to do, when you give them the choice to either betray their peers or accept a significant personal cost to themselves, with no guarantee that the cost will even end up being justified. 

I feel a loss on behalf of Type 2 patients. The CGM funding, if it progresses past policy stage, will be added to the NDSS. With the recent cuts to the NDSS in regards to the ability of a Type 2 patient to acess subsidised testing strips, it feels a bit like robbing Peter to pay Paul. 

I feel left-out. Again. As an adult with Type 1 Diabetes, there's not much on offer, and we are severely lacking in support. There are programs for schools, youth transition services, camps and pump-funding grants aimed towards children; there are telephone peer support programs and educational programs for Type 2 patients, and programs, a dedicated website and telephone support program for women with GDM. There's nothing listed under support for adults with Type 1. This was just another area in which we are being overlooked and underfunded, despite the fact that we face the exact same consequences from not using CGM as those under the age of 21. (In fact, in the report by Tu et al in The Medical Journal of Australia 2008, the mean age for dead in bed is well into the adult years, at age 30.2). 

I would be glad and happy to see young type 1 children be given the opportunity to grow up with a little less stress so I am in no way begrudging the children who may receive this subsidy. A very long time ago, when I found how hard it was as an adult to even qualify for a pump, I made peace with the fact that people don't really care what happens to you when you outgrow your childhood chubby cheeks. An acknowledgement of my loss of opportunity doesn't hurt though. That's probably one of the biggest reason that I had a small tear-fest yesterday. My loss, our loss, in this celebration wasn't even given the briefest of mentions. By any party involved. Even though we campaigned right along side all the parents.

I guess I'll play it by ear, and whatever happens, happens. Given that I had the audacity to both age past 21, and get diabetes as an adult, I'm not holding my breath that the funding will ever extend to me. It will just be a nice surprise. Either way, I hope Labor comes to the table so that the kids of the future will have the tools they need to help manage their diabetes at their disposal.


  1. Thanks Bec. Felt good to release the weird mix of emotions into the blogosphere. I haven't even thought of it since posting this.

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