Diabetes Advocacy

How I Became Empowered to Chat Act Change

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Wednesday’s #DSMA Twitter chat was about how we, as patients living with a chronic condition, can Chat, Act and make Change. Seeing as Wednesday nights always translate to Thursday mornings here in Australia while I’m at work, I thought I’d share my thoughts from the chat here today.

One year ago, I was a shadow of my current self.

I felt very much alone with my diabetes. I didn’t know anyone else with diabetes in real life. Most of the people around me didn’t know anything about the type of diabetes that I had. Nobody saw what I had to do to manage my diabetes. The insulin injections, the blood glucose tests, and all of the frustrations and emotions that I went through at night while the door to my room was closed shut.

It was very easy for me to shy away from diabetes. The more time that lapsed since my diagnosis, the more I would keep things to myself. I didn’t want to talk about diabetes with my family at the dinner table. I didn’t want to add my voice to the conversation if it meant that I had to talk about diabetes. I didn’t want to appear weak in front of others, because of my diabetes.

I struggled to embrace the support system that I did have in my healthcare professionals. I struggled to be open and honest in front of a revolving door of endocrinologists, being in a busy young adult diabetes clinic. I would smile and nod my head as she congratulated me on my excellent hba1c level, when in my head I knew that I had woken up hypo every night in that past week. Deep down I knew that things needed to improve, but I kept telling myself that things would change next week. And then the week after that. And then in the new year.

It’s very hard to feel empowered, let alone advocate, when you live with a condition that makes your life so much different from those around you at times. One year ago, I was far from an empowered patient.

Blogging and joining in the Diabetes Online Community on Twitter has changed my life, for the better. Having those connections from others who “get it” has filled a huge gap that was missing in my diabetes management. Having a blog which I was able to pour all of my thoughts into was extremely therapeutic. Receiving words of support from others in return was an added bonus.

I would like to think that my diabetes management is a million miles better than it was a year ago. I have a genuine interest in the disease that I live with, thanks to the Diabetes Online Community. I get information and inspiration from this community every day, that I can apply towards making my own diabetes management better. I have my own thoughts, and opinions that I want to talk about, on my blog and at home. If there’s a story on the news about diabetes, we’ll talk about it at the dinner table. If something interesting happens during the day, the first thing I want to do is get home and share it on my blog.

Being an empowered patient has helped me loads with my healthcare professionals. For one, I have taken my diabetes way more seriously in this past year than I ever have previously. In recent months I addressed minor concerns with my eyes and my feet straight away. I actively pursued a cancellation when I needed to see my endocrinologist in August, rather than wait until January. I packed my supplies like a crazy person when I went on holidays in July, rather than just taking the bare essentials. And I am now seriously considering an insulin pump, because I would like to achieve better than “okay” results with my diabetes managment.

Being a part of this community empowered me to advocate for something I strongly believed in – greater access to glucose test strips for Australians through the National Diabetes Services Scheme (NDSS). And that I did, through a column for Insulin Nation in July. That column resulted in a small change to the wording on the NDSS website, something I am extremely proud of. I have blogged, and intend on writing to Minister Ley, calling for government funding towards Continious Glucose Monitoring in Australia. And I like to think that the existence of this blog is a form of advocacy in itself each and every day.

The longer that I am a part of this wonderful community, the greater my passion is for all things diabetes. That passion grows more and more with each passing day. And that’s how I am empowered to #ChatActChange.

Join the #DSMA Twitter chats every Wednesday night at 9pm US Eastern Time by following @DiabetesSocMed and the #DSMA hashtag on Twitter.

I Know What My Supplies Mean to Me. #Insulin4All!

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If you’ve been reading this blog for a while now, you’ll know how strongly I feel about blood glucose monitoring and test strips. I could not possibly survive without my test strips. Sometimes I use as many as 10 a day. Test strips, among other diabetes supplies, help me to feel grounded and in control of my diabetes. I could not possibly live without them. So much so that I’ve been driven to write some pieces, both here and for Insulin Nation, advocating for greater access for people with diabetes in Australia.

So when Elizabeth Rowley from an organisation called T1International reached out to me about a campaign called #Insulin4All, it seemed like a natural cause for me to support.

It’s easy to take diabetes supplies for granted when I live in a country where I have always had excellent and affordable access. It’s easy to take my diabetes healthcare professionals for granted when they are so easily available, and at no cost to me under public healthcare. It’s easy to forget that these supplies, and professional support, are what keep me alive and healthy. Today, and each and every day for the rest of my life. And I couldn’t imagine my life without them.

When I think about disadvantaged people in other parts of the world who cannot access insulin, among other diabetes supplies, I really have nothing to be complaining about. There are people out there with type 1 diabetes who struggle to survive because they cannot access life saving insulin, blood glucose test strips and basic healthcare. Some take insulin without knowing if their blood sugar level is high or low. Some suffer diabetes complications, or die a premature death from a lack of supplies, education and healthcare. There are plenty of really touching stories on T1International’s blog.

I support #Insulin4All this November, because I know what my diabetes supplies mean to me!

I hope that you will join me, and have a bit of fun with it too.

So, you need your sign, with the words “we are the world in World Diabetes Day,” and the hashtag #Insulin4All. I felt like a kid again, with my ruler, lead pencil, eraser and textas, carefully outlining my letters and words on a straight line and then marking over them!

Then you need a photo, with yourself or a group holding the sign. Get creative. The best I could come up with was holding a handful of my Lantus pens. And, trying to find the best lit spot in the house free of noticeable junk in the photo!

Then, head on over to insulin4all.tumblr.com and upload your photo to the campaign wall.

And spread the word! #Insulin4All!

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Dear Content Marketing Specialist…

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I received an e-mail over the weekend that frustrated me, so I’ve penned my reply here today. For the purpose of this blog post, I will refer to my e-mail recipient as “Content Marketing Specialist.” Well, technically she was.

Dear Content Marketing Specialist,

I’m afraid I cannot support your client’s practice of giving people money for their unused glucose test strips. Yes, the person who you buy the test strips off might receive “some” financial assistance. I quote the word ‘some,’ because I seriously doubt that it would amount to anything significant towards those “financial burdens” of managing diabetes that “we all understand.” However, you neglect to mention that your client is also taking advantage of another person with diabetes in need when the test strips are onsold. Your client is making a profit as a middleman, a practice which is unethical.

I will not be placing a link to your client’s website on my blog, beside other charitable organisations on my resources page. I would hardly compare your client to some of the other charitable organisations on my Resources page. Organisations such as Diabetes Australia, who place the importance of assisting people with diabetes in need ahead of making a profit. Government organisations such as the National Diabetes Services Scheme (NDSS), who heavily subsidise the cost of my test strips with Australian taxpayers hard earned money. It seems like a real insult to them to take advantage of this scheme, which gives me greater access, better management and peace of mind over the disease that I live with.

I am extremely fortunate that I live in a country where I have access to diabetes supplies such as insulin, test strips and syringes. Supplies that I heavily rely on to keep me alive, and dare I say healthy. There are many other people out there in less fortunate parts of the world who don’t have the same luxury. People die each day because they cannot get access to life saving supplies. And if I had the means to do so, I would go there and help those people directly.

If you had actually read this blog that contains “useful information for diabetics,” you would know that I would not even consider standing for such a practice.

So, now I will put something to you. How about dropping your client and directing your resources towards an organisation or cause that is doing actual good for people with diabetes?

This, coincidentally, is what I will be doing throughout November, which is Diabetes Awareness Month.

I hope you will join me.

Many thanks,

Frank

The Case for Subsidising CGM in Australia

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It’s good to see the issue of Continuous Glucose Monitoring getting more attention in the news at the moment here in Australia.

The Danii Meads Barlow Foundation have been doing a fantastic job at the moment of getting the word out into the media. A couple of weeks ago, this foundation provided Catherine Rowley with the support to address our leaders on the Q and A program regarding CGM support from the Australian government. You can read about that here. Their advocacy work also resulted in a report on Today Tonight yesterday, raising awareness of the founding couple’s daughter who passed away from unnoticed hypoglycemia during the night. The foundation are currently advocating for the government to provide $5,000 per year towards the cost of maintaining Continuous Glucose Monitoring device consumables.

Rebecca Johnson, who lives with type 1 and manages the Telethon Type 1 Diabetes Family Centre here in Western Australia, also wrote a pretty powerful piece in The West Australian newspaper yesterday. She hits the nail on the head perfectly.

“Managing type 1 diabetes comes at a cost. It costs me dignity, like the time I was spoon fed honey on the floor at a party because my blood glucose was so low I couldn’t see or talk. It costs me time: countless hours calculating insulin doses, testing my blood, counting carbohydrates. It costs me opportunities, at work and in life. It also costs a lot of money.

To monitor my blood glucose around the clock I use a thousand dollar machine that runs on a battery that costs $500 to replace. The sensors which I insert beneath my skin to read my glucose level cost $100 and must be replaced every six days.

The government does not fund continuous glucose monitors. It comes out of my pocket and it costs me, a young person with diabetes, more than $5000 a year to run. I fund it because I want to live a healthy, complication-free life, away from emergency admission and hospital stays, dialysis, eye laser treatments, chronic wound care and amputation surgery. Continuous glucose monitoring can prevent hospital admissions and expensive long term medical care for people with type 1.

In a time of extraordinary healthcare costs attached to diabetes care, our Federal Government needs to recognise that by supporting people with type 1 to take the very best care of themselves, the burden on the health system will be significantly reduced.

This device can save my life. My monitor is set up to sound a loud alarm when my blood glucose level is dropping. It wakes me in the night when it identifies a dangerous downward trend before my glucose is so low I can’t move or help myself.

To me, continuous glucose monitoring technology is the single most important innovation in diabetes management since the invention of synthetic insulin. It gives real time glucose information to people with diabetes to identify trends in their levels and fine tune their diabetes control. This essential biofeedback is something that every person with type 1 diabetes needs to better understand and manage their condition.

It is also the only technology that can help prevent “dead in bed” syndrome, where people go to bed with normal glucose levels and are found dead in the morning from massive, undetected overnight hypoglycemia.

Continuous Glucose monitoring is streets ahead of pricking your fingers up to 10 times a day to test your blood for glucose. Testing like this is relatively easy in daylight hours, but often many hours are left unmonitored overnight. Unmonitored glucose levels are fraught with danger. Glucose levels that are too high damage every organ and system in the body, increading the risk of kidney failure, heart disease or blindness. And if glucose levels drop too low, the sleeping person can seize, fall into a coma, and die.

A hospital admission for a single severe hypoglycaemic event costs the public system over $5,000. Treatment of diabetes related complications can cost more than $11,000 a year per patient.

It takes a visionary government to invest in new technology, and the case for funding continuous glucose monitoring is compelling. It will save the public system money, time and resources immediately and in the future. It will also give me and other sufferers a daily blessing. We will wake up in the morning.”

I am certain that every person with diabetes would accept CGM technology if it were more accessible here in Australia. If you would like to see CGM technology subsidised by the Australian government, then I urge you to write to your local Member of Parliament, and to the Minister for Health Susan Ley (click for contact details).

Logging My First Big Blue Test!

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I’ve never truly understood the big obsession with Fitbits and step counts and runkeepers. That is, until I opened the Health app on my iPhone about a month ago. That nifty little app has been logging my step count all year long without me even knowing. And looking at the stats, they’re a little embarassing. I can see a huge peak during the month of July, when I was galavanting around Canberra and Sydney having the time of my life (which seems like a lifetime ago, mind you). Then there are some massive slumps on either side while I’ve been back at boring old home.

I’ve been working on getting my step count up over the last month, going for walks most afternoons. Even factoring in the steps that my iPhone doesn’t log while I’m at work (and I would log a lot during my work day), it’s still incredibly hard to reach 10,000 a day!

Which brings me to the Big Blue Test. The Big Blue Test is a program of the Diabetes Hands Foundation, the guys who are also behind the wonderful TuDiabetes community. The Big Blue Test helps to raise money for diabetes charities that provide life saving supplies, services and education to people with diabetes in need.

It’s as simple as testing your blood glucose.

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Getting active for at least 14 minutes of physical activity. If you hate exercise as much as I do, physical activity can be absolutely anything. Also coincidentally wearing blue for Blue Fridays (and being a good diabetic by wearing socks on my feet, of course).

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Testing your blood glucose level again. Hopefully you see a nice drop in your BGLs after exercising like I did in this instance!

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And then logging the details at www.bigbluetest.org or by downloading the Big Blue Test iPhone app. It will literally take a minute of your time, for a series of activities that you probably do already.

Each Big Blue Test that you log between now and November 30 will trigger a $1 donation to diabetes charities. There have been 101,500 Big Blue Tests completed since 2010, this year we are hoping to reach 110,000.

So get testing this weekend.

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