Advocacy

Diabetes Advocacy at #DX2Melbourne

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One of the speakers I was most looking forward to hearing from at DX2Melbourne last week was Greg Johnson, CEO of Diabetes Australia. Professor Johnson was leading a session on diabetes advocacy, and I was thrilled that he would be engaging with a room full of consumer advocates.

Professor Johnson talked about the history of diabetes organisations in Australia (with a book of the exact title in tow!), with a movement by people with diabetes, for people with diabetes. Many of the original goals around patient centred care remain the same today, suggesting that we may have to reinvent our approach towards them.

At the time there wasn’t much of an understanding of the psychological aspects of diabetes. Establishing the Australian Centre for Behavioural Research in Diabetes (ACBRD) in 2010 was a big step towards helping better understand those elements and improve the quality of life for people with diabetes.

He highlighted the importance of the National Diabetes Services Scheme (NDSS), which is responsible for the delivery of subsidised diabetes consumables here in Australia. There were 106,000 newly diagnosed people with diabetes registered on the NDSS in the past 12 months. 9,000 people didn’t fit within type 1 or type 2 diabetes, while a further 37,000 were diagnosed with gestational diabetes.

He talked about advocacy, most notably the win on securing funding for Continuous Glucose Monitoring from the federal government in under 21s. This election promise was finally delivered when new Federal Health Minister Greg Hunt took over the role earlier this year. Many consumers didn’t realise the years of groundwork that went into achieving the outcome we have today.

How do we, as advocates, get out out there and create change?

How do we empower the consumer voice, and lived experience?

There’s a real need for us to come together, listen to many different stakeholders and advocate for ALL.

There’s a lot of frustration from people with diabetes who are still seeing shaming messages from diabetes organisations.

People don’t feel empowered to raise awareness and seek out communities.

These were just some of the questions and comments raised by the attendees in the room. Despite some robust discussion among the advocates, I didn’t feel that I got many answers to those questions during that session.

Sitting amongst some of the most influential diabetes advocates in the country, I was itching to know what I could do to help bring about change. I wanted to know where consumers sit in the scope of what Diabetes Australia is trying to achieve.

To be honest, I often feel frustrated by communications from diabetes organisations. When I think about what people with diabetes are doing in the real world – chatting in closed Facebook groups, writing powerful blog posts, reading the scoop on the latest tech, sharing opinions and organising amazing events and meetups – these things often feel ignored, rather than supported.

Professor Johnson rounded out his talk by saying that advocacy doesn’t end once a decision is made, and that we have to keep working with people to create change.

I feel that revisiting the level of engagement with consumers would be a powerful way for diabetes organisations to bring about further change.

Disclosures: Abbott Diabetes Care covered my travel expenses from Perth to attend this event. Further disclosures can be found at the bottom of this post.

Is the DOC Inclusive?

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I’ve only been a part of the Diabetes Online Community for a little over a year.

When I nervously took part in an OzDOC chat for the first time, I felt very welcome. Strangely welcome, because the discussion was so friendly it looked like these guys all knew each other in real life. Somehow Renza stumbled upon my (very crappy at the time) blog, and offered me encouragement. Mike was one of the first people to leave me a comment, welcoming me into the Diabetes Online Community. I later learned he worked for a little site called Diabetes Mine and had included my post in their monthly blog round up. 

I found my place in this community quite easily, and I continue to participate quite actively. It stimulates me, it offers me support when I need it, and it inspires me to do better with my own diabetes.

Yet the other day, I felt compelled to agree that I sometimes I do feel hesitant to speak up because my opinion might differ from that of the majority.

To this day, one of the hardest things for me to accept is that not everyone is going to agree with me. I constantly try to remind myself that we are all different and naturally won’t agree on everything, but it’s still hard. I guess I find it hard to separate the difference of opinion with a dislike for my character. Silly, I know…

There have been some issues circulating around in the DOC that people have really strong opinions about. #DiabetesAccessMatters and Low Carb High Fat diets, are two examples that come to mind. Sometimes as a witness to these intense discussions and advocacy, I do feel hesitant to jump in with an alternate opinion for fear of being attacked or banished from a community I genuinely do love.

Social media only gives us a really small window into a person. When I first jumped in, I knew nobody with diabetes. I know for me, even just meeting a small group of peers at DX2Sydney this May has given me a lot of perspective in regards to the person with diabetes versus the Twitter window. It was a really valuable experience that carries me forward in my online activity to this day.

Some of my peers in the Australian community have set a great example for me in the use of diabetes social media. When I write here, I am increasingly conscious of trying not to “bash” the alternative opinion, or claim that my opinion is the right one, instead focussing on my own experience.

One thing I do admire is this community’s eagerness to comment and voice their thoughts. I often struggle to fit my ideas into 140 characters, and I’m terrible at keeping up in fast paced Twitter conversations. It often feels easier to lurk than to comment, and I feel I could be more inclusive by not being a stranger so often! 

I feel that Diabetes Daily and Diabetes Mine also do an outstanding job of being inclusive of the wider DOC. Diabetes Daily feature a wide variety of perspectives on diabetes management that I find myself reading more and more of. And you need look no further than the @diabetesmine Twitter feed to see how engaged the folks at Diabetes Mine are with the wider community.

Reading Renza’s post on the issue of inclusiveness yesterday really put my mind at ease. We don’t have to agree with one another, but we certainly need to be respectful so that others don’t feel afraid to voice their thoughts. 

I don’t really know how I come across online. But I hope that others would feel that I am respectful towards other opinions, even if I don’t agree all the time. 

Be kind to one another.

Fear as a Motivator For Health?

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During a diabetes themed episode of Sunday Night this week, I noticed several tweets from Diabetes NSW that had been carefully planted into the #SN7 feed on Twitter (the program’s hashtag). Including this one, which sought to tell us that 7,750 people die from diabetes and related complications each year.

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It’s not the first time I’ve seen these kind of Tweets from Diabetes NSW as of late. During the diabetes community’s I Wish People Knew That Diabetes day last month, Diabetes NSW once again hijacked the feed to fill us in on some of the scary facts.

On both occasions, the Tweets appeared automated and displayed little understanding around the respective hashtags they were hijacking.

After seeing this tactic employed once again on Sunday evening, I couldn’t help but call them out.

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As a member based organisation that supposedly represents and supports people with diabetes, messages like these really do members a disservice. Do messages promoting complications and instilling fear around poorly managed diabetes really motivate individuals to look after their health? I think not. And judging by the reaction I received on Twitter, I am not the only person who feels this way.

While stories like these may be effective on people without diabetes, I feel that they sorely overlook those of us who already live with it. In my opinion, health consequences such as obesity, sugar consumption, physical activity or kidney failure are separate issues that need to be dealt with exclusively from diabetes.

The sad reality is that the wider media eat up the sensationalised stories around the complications and fear surrounding life with diabetes. People without any connection to diabetes make assumptions based on what they see reported. Perhaps that a person with diabetes is not fit to work. That a person with diabetes lives an unhealthy lifestyle. Or in the case of the aforementioned Tweet, that a person with diabetes could drop dead at any given moment!

Yet the positive stories, the ones around people with diabetes being able to live healthy and full lives are often overlooked, or overshadowed by the sensationalised stories. Diabetes NSW were quick to point me to a page of positive “ambassador” stories on their website, including another “Frank” who I reminded them of. Yet I am reminded of this recent post from Melinda at Twice Diabetes. I can’t help but wonder whether they are ambassadors who are truly engaged with the organisation and the community, or just figureheads that are referenced when necessary.

To be fair, Diabetes NSW is not the first organisation to instill these messages. We had the dreadful 280 a Day campaign for Diabetes Week last year in Australia, and more recently we had the very confusing World Health Day.

Shaping the conversation around diabetes in public begins with the organisations who represent us. I only wish we weren’t so hard done by all the time.

Why Blog?

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My conversation with Rebecca Johnson at the Telethon Type 1 Diabetes Family Centre prompted some serious questions about my blog. Some of which I’ve never really thought about too seriously, and others that I’ve shared little tidbits about over time. Today, I’m popping it all into one post.

Why did I start to blog?

I love writing. My dream is to write for a living someday. I started this blog in January 2015 as a bit of a creative outlet to complement my studies in marketing and communications. I guess, even today, this blog remains a glimmer of hope that one day I might find work more closely aligned to where my passions lie. 

Diabetes seemed like a natural choice to write about. I didn’t even think there were many diabetes blogs out there, let alone an active community sharing their stories online. I know so much more about diabetes than I ever did before I started my blog. I am far more empowered and passionate about the condition that I live with, and I credit that to being a part of the diabetes community.

Is it hard to come up with ideas for blog posts?

It was definitely difficult to come up with ideas in the beginning, and get them onto paper cohesively. Today, the ideas come to me quite naturally. I’m really interested in what’s going on in the diabetes community. Diabetes follows me around in whatever I do, and something interesting always happens along the way. It’s amazing how the tiniest thing can become a blog post. Like, for example, finding a test strip on the hotel room floor. Other days I just want to empty out what’s on my mind, such as this post from last week. You get better at it over time.

Do I feel the pressure to constantly pump out content?

To be honest, I’ve surprised myself in being able to write so much here since I started. It’s more a thing of personal pride that motivates me to keep going. I’m really proud of my writing. I’m proud of my own personal development with my diabetes since I began this journey. I’m really proud of this space that I’ve created, and that people can come here to find a new post almost every day of the week. That was always the vision I had for my blog when I started it. 

How has Type 1 Writes evolved over time?

When I started Type 1 Writes, I imagined it would be more of a thing where I would give diabetes advice and lifestyle tips. I don’t think I realised the value of my own voice and my own story until a little later when I began to connect with others in the Diabetes Online Community.

A lot of my initial blog audience and DOC connections were from the United States, and I felt like I had to fit in with that. I don’t think I realised the value of my perspective as an Australian person with diabetes. I guess today, I’m proud to be an Australian diabetes blogger. I proudly publish my posts during the daytime here in Australia, even if that means that my friends in the US and UK are sitting down to dinner or heading to bed. I’m proud to be a part of the Oz Diabetes Online Community, even if it’s not as huge as DSMA or DCDE groups in the US.

What does the future hold for Type 1 Writes?

Hmmm…I hope I’ll be able to keep doing more of the same. Publishing great content, sharing my story with diabetes, being part of an inspiring community and hopefully reaching more people. I’d love to meet more DOC connections in real life, and attend diabetes conferences. If I could find a job or side income more closely aligned with my blog or my writing someday, that would be amazing too. 

One thing that won’t change, however, is that I will always continue to write what comes from the heart.

Do Diabetes Tech Companies Really Care?

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A few weeks ago, a post from Medtronic Diabetes Australia caught my attention on Facebook.

“We are asking the Australian Federal Government for a commitment of $4.4 Million this current financial year to potentially save 1,537 lives from the devastating consequences of type 1 diabetes.”

Medtronic’s lengthy article, which you can read here, was basically advocating for the Australian government to fund Continuous Glucose Monitoring. Something that I would very much like to see happen in the near future, evidenced here and here.

I have nothing against Medtronic. I’m sure that my rant would be equally applicable to every other diabetes tech company offering products and services to people with diabetes.

However, I just find this difficult to wrap my head around.

I get that Medtronic, along with every other diabetes tech company, is a business. I get that without companies like Medtronic, revolutionary technology like this would not be available to people with diabetes. I get that research, development, marketing, distribution and other operations cost money. A LOT of money. And then Medtronic is a business, and understandably wants to reap a nice reward for their efforts.

But still, Medtronic advocating for the consumer just doesn’t sit well with me.

I just don’t feel as though they would genuinely care, the same way that I do as I’m writing this post. I don’t feel as though they really care that, to quote Medtronic:

“People who are hypo unaware are six times more likely to have severe hypoglycaemia leading to seizures, coma and even death. Having hypos leads to more hypos and the increased risk of these severe events.”

It just seems as though it’s in their best interests to advocate. It seems as though they have something to gain from their advocacy efforts.

First up, it makes them look as though they are on the customer’s side. It makes them look like they care, lobbying the government for funding towards a life saving device. Big tick for Corporate Social Responsibility there.

Second up, if their advocacy is successful in obtaining government funding, Medtronic has everything to gain. Business! More people will adopt Continuous Glucose Monitoring devices because they are cheaper to run. More people will purchase the consumables in order to continue running the device. And since diabetes isn’t going away anytime soon, there’s a good chance that the customer will keep purchasing the consumables. Triple win!

I hold nothing against Medtronic for running a business. A business that, from what I hear, makes the daily management of type 1 diabetes much easier. A business that, should I choose to in the future, could make my own diabetes management much simpler.

But Medtronic does not have diabetes. Medtronic does not go to bed feeling defeated from a day of highs. Medtronic does not wake up in the middle of the night, sweating from an intense low. Medtronic does not feel the impact of dealing with a chronic condition day in, day out.

That’s why advocacy from a company with a financial interest in diabetes will never sit well with me.