Earlier this afternoon I took part in the second Oz Diabetes Social Media Summit. Hosted by Ascensia Diabetes Care, #OzDSMS brought together a group of (highly privileged) diabetes bloggers in Sydney. It is always an honour for me to participate in discussions with this close knit group of people with diabetes who are all doing amazing things in their own communities. Renza’s comment around Aussies being the most considerate of the needs of people with diabetes outside of their own backyard really summed up it up for me.
As a relative newcomer to the market, Ascensia seem to be one of those companies who genuinely want to be a part of the diabetes community, and not just talking to the community. We were reaffirmed of their commitment with two additional summits being held in Europe and America following the inaugural (and best) Aussie summit held in Adelaide last year. I’ve also been really impressed at being kept in the loop on company comms from their head Joseph over the past 12 months.
There were some robust discussions around advocacy, and more specifically, representation in the diabetes community. While I’m not a big fan of the word ‘advocate,’ others in the room were happy to wear the term on their sleeve. Kim’s comment around advocating for the value of lived experience resonated with me the most.
I feel that there’s a big difference between being a personal advocate and a broader diabetes advocate. From my own personal experiences, I find it frustrating when people expect me to be the one to bring about change. Believe it or not, diabetes is not my job and there are plenty of other things that I hope to achieve in my life. It’s not one person’s job to bring about change. We need collaboration, and we can always do more to bring the voices of more people with diabetes to the table.
Special guest speaker Grumpy Pumper crashed our summit and spoke about challenges in being able to engage people to talk about diabetes complications. We were shown some new resources that have been developed in collaboration with Grumps for Ascensia’s social media channels. Bionic Wookiee David Burren (who was listening in over the phone) added an outstanding comment around why diabetes complications are called diabetes complications. Aren’t they simply health conditions that are exacerbated by diabetes?
We touched on backup plans, and it was pleasing to see a resource that’s in the works from Ascensia on the very subject. While I certainly carry everything around with me, the one thing I haven’t brought with me on my travels this time is long acting insulin. I know that a) AMSL Diabetes will be in the Exhibition Hall at the Diabetes Congress should my pump fail, and b) I’m surrounded by many friends with diabetes who’ll be able to hook me up should the worst happen.
The highlight of my day was hearing Greg Johnson, CEO of Diabetes Australia, talk about access and advocacy around diabetes technologies.
There is currently a hold up on getting the FreeStyle Libre added to the NDSS. The Department of Health and manufacturer, Abbott, are currently in price negotiations over the product. Health Minister Greg Hunt was advised on a fair price that the government should reimburse to Abbott for the product. The advice was provided by an independent committee, based on health economics. The ‘reimbursement’ that Abbott are seeking for the product is above this price.
I did flag recent news reports around comments by the Health Minister about Abbott not complying with the recommended safety, but I have been told that there are absolutely no safety issues with the product and it was likely a slip of the Health Minister’s tongue.
Professor Johnson is confident that an agreement will be reached soon, and that Flash will be added to the NDSS. Encouragingly, he expressed that there was enough funding available that could potentially see Libre made available to people beyond the current eligibility criteria for CGM. Watch this space.
How can people with diabetes work together with diabetes organisations to achieve shared goals? Professor Johnson pledged his support towards the power of people telling their stories in the many different ways that we do. He said that reviewing the discussions that were happening in the diabetes community were always a big factor when deciding on a course of action at Diabetes Australia. I did express my sentiments about the need for more ‘progress updates’ on policy work, so that it doesn’t just feel like that campaign that was running a few months ago has been forgotten about.
Check out #OzDSMS on Twitter for more Tweets from some of the other bloggers who participated in the day. I’d like to thank Ascensia Diabetes Care for extending hospitality once again, and to all of the people in the room who participated. I couldn’t wipe the smile off my face at the chance to get my own grumpy photo!
Disclosures: Ascensia Diabetes Care provided hospitality throughout the afternoon which included lunch, drinks and canapés. Diabetes Australia have covered my flights and three nights accommodation in Sydney to attend the Australasian Diabetes Congress this week. I have given up my own time to participate, and am sharing my own views as always.