Consumer Voice

Championing the Consumer Voice

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I walked away from the Australasian Diabetes Congress feeling that consumers had an even bigger impact than last year.

This was my second year attending the joint Annual Scientific Meeting of the Australian Diabetes Society (ADS) and the Australian Diabetes Educators Association (ADEA). Diabetes Australia pioneered a fantastic initiative called the ‘People’s Voice,’ which brought the voices of a few bloggers and consumer advocates to the Congress.

I don’t, for a minute, ever pretend to be representing anyone other than myself at events like these. I fully accept the privilege I have, knowing that I do not even come close to representing all people out there with diabetes. I’m super proud of all of the people with diabetes in attendance who drove this narrative home to the delegates, speakers and pharmaceuticals in attendance. In particular those with gestational diabetes, those with type 2 diabetes and those who are not as engaged as we are.

On Wednesday afternoon, I was lucky enough to contribute to a session which presented case studies on ‘co designing’ diabetes services with the involvement of people with diabetes. I spoke about my involvement with Perth Diabetes Care through the Young Adult Diabetes Committee. For more of a taste of what we do, you can find our Facebook page here. Melinda Seed at Twice Diabetes also spoke about her involvement with Reality Check and the resources that she helped to develop for people with diabetes.

As I said last year, I was so humbled to be in the presence of so many people that simply wanted to learn from us. The idea of this session was to plant ‘seeds’ in the minds of delegates, and we really did delve deep into some of the issues that were prohibiting the engagement of people with diabetes. I spoke about how big of a step it was for me to come along to a gathering of people with diabetes for the first time, and also sharing how much of a ‘slow burn’ some of our work in this space can truly be.

I have personally found the Diabetes Educators to be the most supportive, open minded and willing to learn from us. They are truly the people who approached me the most during the course of the week, and hopefully they will only bring more healthcare professionals and researchers along for the ride with us. I really do apologise for our narrative that, at times, can come across as assuming that all healthcare professionals are not person centred. We really are just passionate about person centred care!

The consumer voice was also championed on Friday morning during a technology symposium. As Professor Anthony Russell presented a narrative about the administration of insulin in a hospital setting, the dialogue that followed on Twitter was more interesting.

One of the biggest issues that I have heard from other people with diabetes is the forced relinquishment of self management in a hospital setting. People with diabetes are forced to relinquish their insulin. People have had to fight for the right to hold onto their insulin pumps or CGMs. Highly capable people with diabetes are often treated as incapable of self managing a condition that they spend relentless hours managing on their own.

I really hope to see a resource developed around the rights of people with diabetes to self manage in a hospital setting. If there are two organisations that I would like to see tackle this issue, it would have to be the Australian Centre for Behavioural Research in Diabetes (ACBRD) and Diabetes Australia.

People with diabetes also slayed the Twitter conversation. In a short two years, it really does make you wonder what they ever did without us? Ashley Ng ran a Twitter masterclass with the support of ADEA, encouraging healthcare professionals to get online. Just look at these amazing stats!

I am super proud of everything that the people with diabetes in attendance achieved throughout the week. I truly feel that the consumer voice was championed, and that we have proven our worth.

This is EXACTLY why we need to be at events like these.

Disclosure: Diabetes Australia covered my registration, travel and accommodation costs to attend the Australasian Diabetes Congress. My opinions and my time, including the annual leave I took from work to attend, are my own.

Day 3 at the Australasian Diabetes Congress

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Day 3 at the Australasian Diabetes Congress kicked off today with breakfast at the Adelaide Central Markets. I was absolutely flattered that Renza sacrificed participating in the 6.45am Novo Nordisk Fun Run to join myself, Ashley and Bionic Wookiee David for the best brekky in Adelaide! 

Class convened at 9am with a symposium on diabetes technology that, quite frankly, could have gone on for hours. Diabetes Australia CEO Greg Johnson was first up onto the stage to share an update on diabetes technology, much of which I had already heard at Abbott’s DX2Sydney event back in May. 

Diabetes Australia advocated for CGM funding for high risk and high need groups, with no age limits. Advocacy had also focussed on co-payments, as has been the case with insulin pump consumables and test strips. The federal government’s announcement of fully subsidised CGM was a complete surprise and will make advocacy more complicated going forward. 

Over 9,000 people have taken up CGM since the federal government’s full subsidy launched in April 2017. I also felt slightly patriotic as Professor Johnson highlighted that our NDSS should be the universal access pathway for diabetes technologies. 

There is also a product tender of syringes, test strips and urine ketone strips currently listed on the NDSS. It is expected that lower volume items will be removed to reduce costs, with an expected implementation date of December 1. 

We are also still waiting on an outcome on the subsidy (not reimbursement!) of Flash Glucose Monitoring. A public health consultation commenced in July 2017. Despite many healthcare professionals spreading Chinese whispers that the FreeStyle Libre will be subsidised soon, a final decision rests with the department of health. This really is anyone’s guess! 

Jane Speight of the Australian Centre for Behavioural Research in Diabetes took to the stage next to present some of the research into the psychosocial issues around Diabetes technology. My takeaways were that the tech is only as beneficial as the commitment from the person using it. The studies also prove that technology won’t be for everyone. It all comes down to individual choice.

Sue Wyatt rounded out our session, pursuing the topic of how well we have closed the loop. Although not made clear, the research presented referred to clinical trials in Medtronic’s 670G hybrid closed loop system only. 

Closed loop systems automatically adjust basal insulin based on CGM readings in order to regulate blood glucose levels. The system had a blood glucose target of 6.6mmol, with a target of 8.3mmol set during exercise. This is disappointing, and I know for a fact that these targets wouldn’t be suitable for many people with diabetes. 

However, I completely get that this blood glucose target may help to get a hybrid closed loop system as such approved for use sooner. I also expect there’s a commercial motivation for this as well, with the ability to sell an upgraded or enhanced hybrid system down the line. 

The major benefit of Medtronic’s 670G was seen in overnight blood glucose levels. Interestingly, we were told that this 6 month study was only in its infancy. It leaves a lot to be said about the timing of approval for Medtronic’s 670G system (the 670G pump has been approved, the 670G compatible CGM sensors are yet to receive approval).

Congratulations to Amy Rush of the Telethon Type 1 Diabetes Family Centre, who was awarded Credentialed Diabetes Educator of the year. Go, WA! 

I was also delighted to hear that SA based CDE Jayne Lehman was also awarded an honorary life membership to the Australian Diabetes Educators Association (ADEA). Well done, Jayne! 

The day rounded out with a debate on whether diabetes technology was helpful or harmful. This was a complete letdown, given that people with diabetes were on the affirmative side and people without diabetes were on the negative side. Without technology, we’d all be living in caves!

I would like to extend a massive thank you to Diabetes Australia for inviting me to be part of the ‘Peoples Voice’ team once again this year. While they covered my travel, accommodation and registration costs to attend the Congress, they did not pay for my opinions or my time. While I certainly don’t claim to represent anyone other than myself, I hope that I have been able to bring a consumer voice to the Congress. 

My gratitude also extends to joint Congress hosts – the Australian Diabetes Educators Association (ADEA) and the Australian Diabetes Society (ADS) – for their support of Diabetes Australia’s ‘People’s Voice’ initiative. 

Finally, a massive thank you to my amazing tribe of people with diabetes that made my week so special. I feel so privileged to spend time in your company call you all friends.

It’s been an insanely busy week with long days and late nights attending product launches, networking and blogging. I haven’t even began to scratch the surface of the exciting developments that have come out of this week.

I’m homeward bound as we speak and look forward to sleeping in my own bed tonight, having a coffee machine at my disposal tomorrow morning, and spending my weekend recouperating.

Stay tuned.