I spent a lot of the weekend feeling a little sentimental. Our beautiful girl turned 14 and as usual, we reminisced, telling the story of the day she was delivered. And I reread my pregnancy diary, the feelings of intense excitement, anxiety, fear and anticipation flooding back. I remembered how, 14 years ago, the only way to check glucose levels was to do blood glucose monitoring. And I was doing that up to twenty times a day. My poor, poor fingers.

While I was remembering all this ever the weekend, I was holding onto an embargoed secret, knowing that an announcement about the expansion of the current NDSS CGM funding program was about to made. In between organising a weekend of birthday celebrations and wrapping gifts, I was also planning for the media announcement which would be taking place early on Sunday morning at a local women’s hospital. I took breaks in preparing food for Sunday’s birthday lunch and read running sheets, familiarised myself with the ‘talent’ who would be explaining what the new funding meant to them, and made sure that I knew where I had to be at 8.30am the following morning.

And amongst all that, I prepared myself for what I knew would be coming: disappointment. There would be a lot of disappointment because the funding package was not going to include everyone, and those who missed out would be upset.

This is my personal blog, and although I work for Diabetes Australia, this is about my own life with diabetes, and to a degree, my life around diabetes. I write a lot about what is going on in the ‘diabetes world’ – both in Australia and more broadly. Sometimes what I write is directly applicable to me; other times, it’s not.

Today, I am writing about the announcement that was made yesterday and I guess that the line between personal and professional is potentially going to get a little murky. Please read my disclosures at the end of this post carefully, because my bias needs to be strongly acknowledged – by anyone reading this piece… and by me while writing it. But I hope that also, people understand that I need to write about this personally too.

In a nutshell, yesterday’s announcement delivered an extra $100 million dollars to fund CGM to women with type 1 diabetes planning for, during and after pregnancy;  people aged 21 years and over who hold a concession card (and meet clinical criteria); and children and young people with ‘other insulin-requiring diabetes’ (for example, cystic fibrosis-induced diabetes). This is all on top of the current $54 million funding which provides free CGM products to children and young people up to the age of 21 who meet the clinical criteria. Also, Flash glucose monitoring has been added to the list of products available, meaning more choice for people with diabetes.

This is good news.

And yesterday, as I chatted with women with type 1 diabetes who had just had babies and were planning more, or were currently planning for a pregnancy, I knew just how much of a difference having access to this technology would mean to them.

Kelly and baby Grace with Health Minister, Greg Hunt, and CEO of Diabetes Australia, Greg Johnson.

I thought back to when I was pregnant and how it would have been so much easier had CGM been available then.

How wonderful that these women, and thousands of other women like them can breathe just a little easier knowing that they will be supported with this tech while planning and during their pregnancies – and the period afterwards. Oh – and then I remembered breastfeeding hypos, the jars of jelly beans on every flat surface in our house – including the back of the loo – and how, when home alone, I used to feed our baby girl on the floor in case I had a bad low and dropped her. CGM alerts and alarms would have been so brilliant then!

CGM is out of reach for so many people. It is expensive technology and I know there are people making sacrifices to be able to afford to use it. I know what that is like – back before pump consumables were on the NDSS, we had to budget $300 per month for lines and cartridges, tightening our spending on everyday items, forgoing holidays, meals out and other things we wanted to do so that I could continue to drive my pump.

Is it fair that the technology we use to keep us alive means we need to make such sacrifices. It certainly doesn’t seem so. And I know that is how people are feeling after the funding announcement was revealed yesterday.

Am I disappointed? To a degree, yes, I am. I believe that I, and other people with diabetes like me are every bit as worthy as women with T1D planning for to have a baby, and kids and young people with type 1 diabetes, and adults on healthcare cards. I completely disagree that type 1 diabetes is harder for kids than it is for adults, because actually, type 1 is tough at any age, and each age and stage of life has its own particular challenges.

But I refuse to see yesterday’s announcement as anything other than a positive step in the right direction, just as I saw the initial funding for children and young people a good thing.

People have missed out; people who will still not be able to afford CGM; people who desperately need this technology to live the best diabetes lives they possibly can. And that’s why yesterday is not the end to the CGM funding story. In fact, it’s a new beginning.

Also, I think it is important to point this out: An announcement like this does not happen quickly. It comes from years and years and years of work. CGM  has been in Australia for over ten years now. Yes – that’s right. Over ten years. So when you hear people referring to this as new or emerging technology, or saying it wasn’t around five or six years ago, that’s rubbish.

I can remember that pretty much as soon as CGM was launched into Australia, Diabetes Australia and JDRF Australia started to fight, lobby and advocate for this to be funded. How do I know this? Because I sat in meetings back then as we tried to nut out just how to approach the government for funding. What would work? What sort of model was achievable? How would the people who were most at need benefit? There are no easy answers to these questions. All we have to rely on is evidence and what the evidence shows is that there are some groups that benefit most from CGM technology.

Diabetes Australia, JDRF Australia, the Australian Diabetes Society (ADS), the Australian Diabetes Educators Association (ADEA), the Australian Paediatric Endocrine Group (APEG), and the Australian Diabetes in Pregnancy Society (ADIPS) have worked together to form an alliance to provide evidence-based submissions and information around CGM technology (amongst other issues). Why is this important? Because bringing together the peak consumer bodies with the peak professional bodies means that all stakeholders are represented, and it’s pretty hard to disagree when we combine PWD sharing our own stories for why this tech matters alongside HCPs talking about the clinical benefits.

At no time has this alliance ever pushed for anything other than funding for those with high clinical need. The idea of an upper age limit was never, ever promoted by this group – we never fought for access to be only for children and young people. Our original funding submission is a matter of public record and can be seen here and you can clearly see that we were advocating for what the evidence pointed to.

I am proud to have been a part of this work – for over ten years now. It is the very definition of ‘slow burn’. This slow burn is not all about being in the public eye and yelling about what we do. In fact, it is all very much out of the public eye. It’s monotonous at times; it can be repetitive and it takes time.

Yesterday we celebrated. Today we’re back at work, looking to how we get the next bit of funding secured.

And finally, we can yell and stamp our feet and say that we should have fully funded CGM for all people with type 1 diabetes. But that is never going to happen. If we look to other countries where there is funding available to people with diabetes of all ages, there is still clinical criteria that must be met in order for people to access reimbursed sensors and/or transmitters. Nowhere has a policy where anyone and everyone with type 1 diabetes can simply show up, put out their hand and be given a CGM. Instead, clinical need is used to determine who has access. I think that we need to be realistic about expectations of what funding will look like in the future.

DISCLOSURES

I have worked for Diabetes Australia since January 2016, and prior to this role, worked at Diabetes Victoria for over fourteen years. I have been involved in CGM funding submissions from Diabetes Australia and the alliance which includes JDRF, ADS, ADEA, APEG and ADIPS. I was also on the Department of Health’s implementation Committee after the initial $54 million CGM funding was announced. I have been involved in writing information and education resources about CGM and hosted a number of national webinars after CGM products were first listed on the NDSS. I have spoken at technology events held at Parliament House, sharing my personal experience of why I use CGM, and, more broadly, why this technology is beneficial to many people living with diabetes.

I use CGM full time. I do not receive any subsidy or discounts for using CGM, and fully fund transmitters and sensors myself. I am fortunate to have friends in Europe who have occasionally provided me with sensors when they have spares, and I am currently using a re-batteried Dexcom G5 transmitter. At the beginning of November, I spoke at a health professionals workshop for ADS where I demonstrated how to use the Dexcom G5, and was provided with one sensor for this demonstration.

The cutest baby ever.