Search This Blog

Thursday, 23 June 2016

King meets King

If you've read a few of my recent posts you will know that CGM funding, and especially the extension to adults, is obviously something I am quite passionate about. As far as I am concerned, just because I can no longer walk around in frilly pink dresses without getting sidelong glances, doesn't mean that I don't deserve the same equal access to healthcare as the cute 5 year old with pig-tails.

I was very excited to be given the chance to talk with Shadow Health Minister Catherine King and ALP Candidate for my electorate of Bonner, Laura Fraser Hardy, about the recent CGM funding announcement.

Along with 2 families with Type 1 Children, we were given the opportunity to chat about what the election funding commitment could mean for us, and the positive impact that new technology can have on our lives.

Before I met them, I was quite nervous to be talking to Catherine and Laura. I felt like there was a lot of pressure (that I put on myself) to make sure that they really knew what it meant to be having this conversation about CGM. What is an election pledge for them, is potentially someone with Type 1 Diabetes' life. Potentially my life.

I don't know what I was worried about. Catherine and Laura were very involved in the conversation and I felt that they were really trying to understand what it means to live with Type 1 Diabetes. They were both friendly, attentive and inquisitive about not just CGM, but about pumps, injections, blood glucose testing and diabetes in general. I use CGM full-time, so I was able to pull King out for a bit of show and tell, including letting Catherine & Laura see the pros of CGM with a 'Suspend Before Low' (that I never had to treat for) captured on my graph before lunch (bonus points to me, I was having a nice smooth day with a graph of 7 and below for the previous 15 or so hours).

Introducing King to Laura & Catherine
I got to do what I wanted and had a conversation with Catherine about the inclusion of funding for adults. Obviously I would still like to see the funding extended to adults with no requirements, as with the funding for children. This is a problem across the board for diabetes technology though, including insulin pumps, where adults have to jump through hoops to be funded, but children don't (Yes, I did make these comments too). There's always room for growth, but at least that initial proposal is including adults, which opens up a door for further expansion on the programs. I don't doubt that Diabetes Australia and JDRF will continue advocating for access for everyone.

To read more about the ALP's committment to CGM funding, you can read diabetes Australia's statement here.

Friday, 17 June 2016


News came from the ALP on Wednesday, that they had jumped aboard the CGM train, announcing an election pledge of $84 million to improve access to diabetes technology, predominantly a CGM subsidy as well as extra funding for the insulin pump access scheme currently in place.

This was initially relief for my conscience, because I was no longer having to vote against technology that I stand behind as having such a positive impact on my life. I did worry that voting against CGM would make it seem like it was not a needed technology, when I feel strongly that it is needed. 

The announcement was more than just good for my political agenda though. The announcement by ALP included not only children up to 21 years old, but adults over 21 who had severe hypoglycemia or hypo unawareness, as well as pregnant women. 

As far as I have inquired so far, the submissions that were made by Diabetes Australia, JDRF and other relevant groups including ADEA were to include all people with type one diabetes, and never limited their recommendations to children only. To see this recommendation for all Australians living with Type 1 Diabetes being acknowledged makes me happier than I can put into words. After all, my diabetes has never decided to toe the line and model itself as an A-Grade student just because I happen to be above the legal drinking age and know how to do my own taxes.

Everyone should have access to life-saving technology. Adults who have severe hypos and hypo unawareness may live by themselves. I have night-time hypo unawareness, where I do not wake up at all to nypos, and the only way I can see that I have even had one is because I can look at my CGM trace the next day and see where my pump has kicked into action to suspend my blood glucose. With my 640G, it even does one better and suspends before low so I never even reach that low level. At home with my husband, I have someone who can help me, but when I go away for work (which is several times a year) I rely heavily on my CGM. 

So today I am very relieved, that we as adults have had a victory too.

Tuesday, 14 June 2016

Sugar Scars

I flicked onto to ABC3 (yep, a kids channel) the other night to watch a re-run of the season final of Tomorrow When the War Began. I grumbled at the T.V. as the plot deviated further from my beloved books (which I definitely have to read again). I don't like it when things are different from what I know.

'Tomorrow' is one of those series I can read again and again, and imagine differently every time. I loved the movie and 6 years on I'm still more than mildly pissed off that they never made the sequels.  So the TV series starts off, and its so different to the books. Fi couldn't be less of a pretty proper lady and more of a tomboy if she tried. No. And what is with that Robin liking Lee crap? Just Nooooooooooo. The random invading army who seem to be asian/australian/kiwi/I think I saw a few Indians. Where are they even from? All of it is no. Sadly though, this fail of a TV series may be the only way I will see the series completed.

I digress.

I think the point I was going to make before I went off on my ranting tangent was that I really love the survivalist idea behind 'Tomorrow'. How ordinary people would react to situations where all their comforts are taken away and everything in their life is all about survival.

I'm not sure if these sorts of books make everyone else think of how they would react in a similar situation, or if its just me. What I would do to survive, How I'd get food, find shelter, join with other humans, what sort of things I'd scavenge. Which neighbourhood I'd move into and which mansion I would booby trap. How to manage a chronic illness when medical supplies are limited and have ceased to be manufactured.

On one of the Facebook groups for Diabetes, one of the D-mums put up a post on a book she had been given. Sugar Scars by Travis Norwood follows a young woman with T1D in a post-apocalyptic world where a virus kills most of the population (only 1 in 9600 people survive). I'm going to somewhat review it now because I took the time to find it on Amazon, download it to my kindle and read it, so if you don't want to read some extremely vague spoilers that just give you the gist of things, stop reading now.

The book very much centers on the main characters struggles to survive with Type 1 Diabetes. There's not much plot besides her diabetes. It's not a bad thing. Certainly, I think the author, if he didn't have or know someone with T1D, must have done a boat load of research on Type 1 Diabetes.

The plot revolves around the main character, Sugar (we never find out her real name), as she collects insulin, and meets other people around her town in Tallahassee. Sugar finds the insulin around her town, sleeps with someone who can hook her up with electricity so she can run a fridge to keep her insulin cool, and goes about her merry life, essentially retired at 19 years old. (She does not have to forage for food because there are so much supplies available). At some point, it gets pointed out to Sugar from her sugar/electricity-daddy  that her insulin actually expires. It was probably at this point in the book that I started doubting that the author actually had diabetes himself. There is no way that you can be reliant on insulin to live and not know that it expires. We have ALL had that talk from our diabetes doctors about extreme highs caused by cloudy insulin, changing temperatures and the forgotten vials at the back of the fridge. Its just not possible for you to not know that insulin has an expiry date. It's stamped on the damn box and on every vial.

So Sugar learns the shocking truth that she too will expire if she doesn't manage to get some new insulin batches. She goes off on an epic journey to make insulin the old-fashioned way, looking up textbooks, cutting pigs open, getting her chemistry kit out to play with. Along the way she meets a vet who really likes to vet/misses his day-job and has turned into an animal-saving recluse. Somehow or other, I forget how, he ends up getting injured and Sugar has to stitch him up. The stitching up of human flesh is all going swimmingly, until he instructs her to sew through the subcutaneous layer, to which she responds (Wait for it....wait for it....) that she has no idea with a subcutaneous layer is. The only response I had to this was to slam the book shut and whine at one of the poor Diabetes Australia staff who happened to be nearby (I work very close by to Diabetes QLD...lucky for me, unlucky for them). I'm not sure where Sugar was taught to inject if not her subcutaneous layer.

I won't spoil the whole book, because it is worth a read if you are considering destroying the world and need to know how to make your own insulin (there are even some interesting side-plots). Its kind of refreshing to see a plot that isn't about killing zombies (but I do love Zombies) or warring against other humans, but is about surviving a chronic illness, plain and simple. A book relevant to my feelings about Diabetes in real-life, because I've had 'Get New Insulin' written in my diary for a month now and I'm down to my second last vial and I'm starting to wonder if I'll let myself die before I remember to get a new script and stop by the chemist. That fear is real.