Archive for 2011

Diabetes Wish List for 2012

For me, the end of the year is a time for both reflection and for looking ahead.

I could tell you everything that happened in 2011 that made it an annus horibilis and that I’ll be glad to be rid of it, but it’s done and dusted. Little I can do except learn and try not to repeat those things that led to where I am now and what I have to do in 2012 to fix the result of 2011. A bit cryptic but that’s how I’m going to leave it.

Instead, I’m going to list all the things I want for me and for the diabetes world in 2012.

  • A cure for diabetes – that goes without saying!
  • Dexcom 7+ to arrive in Australia and be affordable and insurance funded.
  • Animas pump with integrated CGMS to land in Australia with insurance coverage.
  • More government or charity programs for people who want pumps but can’t afford them.
  • Wider testing for the 20% of misdiagnosed Type 2s, who really have LADA/Type 1 and would benefit from more appropriate treatment.
  • Normal Blood Glucose limits for T2 diagnosis to be more realistic – current diagnostic criteria is that blood glucose has to be =>11 mmol/L (198 mg/dl). How many years are those people sitting in the 8s, 9s & 10s (144, 162, 180) before diagnosis? Possibly years after damage from blood glucose spikes has begun?
  • Wider acceptance of low and lower carb eating for diabetes. I have, thus far, completely failed to understand the recommendation for high carb meals for people who can’t control their diabetes, when this is the very food that causes blood glucose to rise, more than any other food. “Healthy whole gains” aren’t the least bit healthy if they raise your blood glucose to unacceptable levels.
  • Better education and support for the newly diagnosed. A 10 minute family doctor appointment simply doesn’t cut it. A dietician and diabetes educator who follow outmoded ideas that do more harm than good, don’t cut it either. Leaving people in isolated areas waiting months for an appointment with an endo, also isn’t acceptable. People who aren’t internet savvy are also at a huge disadvantage. All of this needs approving.
  • An understanding that about 50% of protein and 10% of fat is metabolised into glucose and appropriate insulin needs to be factored in.
  • Awareness that there are many people on the planet who can’t afford insulin and many who have died and will die without it. In 2012, I would like more support for and a spirit of giving to those organisations who assist people all over the world, who can’t afford insulin and other diabetes supplies. In the words of Tom Karlya, “I would like someone to give Ron Raab’s Insulin for Life every dime the man needs.” Well said! I have been an volunteer with Insulin for Life since 2003 and I know the great work they do. They need funds to offset freight costs to get supplies to where they are needed.
  • When recipes are called “diabetes friendly” and all I can see is that they are low fat, and high in carbs, I want the ‘diabetes friendly’ term to be banned!
  • A wish that the medical community would fully understand the distinction between all the different types of diabetes, and more importantly, that it and the media stop the blame game about what causes T2 diabetes because more and more they are being proven wrong. (Read: You did not eat your way to diabetes.)
  • Stop the “you can live a normal life with diabetes’ nonsense. You can’t! Yes, you can DO almost anything you want in life, but not without dealing with a disease that needs to be monitored and treated 24 hours a day, 7 days a week, no time off, no holidays, no respite. That’s hardly normal!
  • That ordinary people realise people with Type 1 diabetes and some with Type 2, need to eat and need to have insulin. The very things that keep us alive can also kill us.
  • That technology is developed and made available to all those amazing carers of kids with diabetes so they can sleep through the night, not have to get up every few hours to monitor blood glucose, and not have to worry that their kids could have dangerous highs or lows through the night, let alone the juggling that goes on during the day with active kids. My hat is off to all those carers who take on their kids’  diabetes as if it were their own. They mostly don’t get any respite either.
  • Some similar monitoring for teens and adults who manage their own diabetes so that we can sleep peacefully too. No more possibility of ‘dead in bed’. We’ve lost too many people in the diabetes community this way.
  • That more restaurants would have some lower carb options for people who choose to eat that way. The penchant for sugar-laiden, high carb Asian-fusion food in this country drives me crazy! I can easily walk along an entire strip of restaurants where I live, and not find a single lower-carb thing on a menu that I’d prefer to eat. For that matter let’s include better menu choices for gluten-free for those who need it. I’m starting to see restaurant menu items that are labelled GF (gluten-free) or LF (lactose-free) and I congratulate those few restaurant owners, but how about LC (low carb)?
  • More availability of sugar and fructose-free drinks without all the harmful chemicals. I’m thoroughly sick of drinking water or paying upwards of Au$2.40 for a bottle of it when in a restaurant, with no other choice than Diet Coke laden with caffeine and chemicals.
  • The banning of high-fructose corn syrup (HFC). Luckily in Australia, not much is manufactured here with HFC.
  • Painless blood glucose testing – not 8 times out of 10, but 10 out of 10, painless, accurate and non-invasive.
  • Better blood glucose meter accuracy. The allowed 20% margin of accuracy just isn’t good enough. If my meter reads 4.5 mmol/L (81 mg/dl), I could really be 3.6 mmol/L  (65) or 5.4 mmol/L (97). At 3.6, I need to treat a low, especially because I often can’t feel symptoms of being low until I’m much lower. At 4.5 I might have to watch for a low. At 5.4, I can go merrily on my way. With so much technology now available in such small packages, I can’t believe a more accurate meter isn’t possible. Let’s hope one arrives on the market in 2012, and gets to Australia before 2025!
  • Better flavours in glucose tabs for treating lows, and that they’re available at any of my local pharmacies (which they mostly aren’t)! Half the time I can’t get them anywhere! Or I have to pay around US$9 for one of those awful glucose treatment tubes. Crazy! And no, I don’t want to treat with fruit juice or carry packets of sugar that end up all over my bag. I want pure , measured glucose.
  • Technology like the iPhone’s Siri to be incorporated in a pump. “I’m going to eat one cup of salad with balsamic dressing, one medium steak and half a cup of steamed broccoli. How much insulin do I need?” It will know everything it needs to in order to make that calculation. No more fumbling with buttons or looking for items in a food database that you can only scroll through 4 or 5 at a time when what you want to eat starts with “W”.
  • An instant treatment for anyone at risk of developing almost any type of diabetes so it doesn’t develop at all. Whether that’s the discovery of the trigger for Type 1 so that the autoimmune reaction can be stopped in its tracks, or the discovery of how to identify Type 2 risk very early in life, and a treatment to stop that too.

Sounds like I’m having a grumble. I suppose I am. Most all of these are issues I’ve written about here on my blog at one time or another.

I’m sure I could make the list longer, but I’m sitting here with 1 unit of insulin left in my pump and it’s only minutes before the alarm goes off, so I have to go do a site change.

I haven’t seen all that much progress in diabetes treatment in the 2.5 years I’ve been on an insulin pump, but I’ve definitely seen some awesome technology developed in the last 33 years. Let’s hope that continues a little faster! If a cure isn’t on the horizon, then at least some improvements in treatment would be very welcome!

What do you wish for in the diabetes world?

I wish everyone a very Happy New Year, and fabulous 2012!

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Incidence of Type 1 Diabetes in Australia

How many people with Type 1 Diabetes in Australia? After some frustrating research this morning, I still don’t know the answer.

The Australian Government’s Institute of Health and Welfare (AIHW) published figures from 2008, which they claim to be estimates.

Here’s what the AIHW say:

In 2007–08, an estimated 898,800 Australians had been diagnosed with diabetes (excluding gestational diabetes) at some time in their lives.
87,100 had been diagnosed with Type 1 diabetes.
787,500 had been diagnosed with Type 2 diabetes.
(http://www.aihw.gov.au/publication-detail/?id=10737419311)

The Garvan Institute, one of the more well-known private research bodies in Australia say:

Type 1 diabetes affects over 140 000 children and adults in Australia…
(http://www.garvan.org.au/pdfs/factsheets/foundation_2007/type1_diabetes_07.pdf)

JDRF in Australia say:

Using data from 2006 the Australian Institute of Health and Welfare (AIHW) estimated that there were 122,300 Australians living with type 1 diabetes, with over 2,000 new cases diagnosed every year.

Australia has one of the highest numbers of new cases annually per capita in the world: Australia is in the top-ten countries worldwide for incidence of type 1 diabetes in children under 15…

The rates of diabetes per Australian state also varies. Interestingly, Tasmania, our coldest state has the highest incidence. The Northern Territory, our hottest state, has the least. Queensland, also a relatively hot state, comes in after Victoria (colder). So, no conclusions can be drawn about climate.

 Average rate of incidence per 100 000 of type 1 diabetes in Australia from 2000-2006, by state (AIHW 2008 – Incidence of type 1 diabetes) 
State TAS SA VIC QLD ACT WA NSW NT AUSTRALIA
Rate 28.9 25.4 23.5 23.0 22.9 21.9 20.6 10.3 22.4

(All JDRF references from: http://www.jdrf.org.au/s/media/documents/australiantype1diabetesresearchagenda_web.pdf)

Seems a bit odd that from 2006 and 122,300 cases of Type 1 (JDRF quoting AIHW, 2006), it’s also 140,000 people in 2006 (Garvan Institute) and to 87,100  cases in 2008 (AIHW). The Better Health Channel, Victoria, probably has it right: “estimates vary”.
(http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Diabetes_Type_1_or_juvenile_diabetes)

If you need insulin in this country, you have to register with the NDSS – the National Diabetes Services Scheme. You also have to specify what kind of diabetes you have. I don’t understand why the numbers vary so much!

I’m not even going to begin to write about the difference in estimates of Type 2 diabetes in Australia!

What we do know is that about 10% of people diagnosed with diabetes in Australia, have Type 1, although JDRF say it’s 13%. That doesn’t seem to vary much with numbers elsewhere in the western world.

The government via NDSS subsidises insulin pump consumables – insulin cartridges (box of 10 is AU$9.60) and infusion sets (box of 10 is AU$14.50). It also subsidises test strips and insulin. Syringes are free as are insulin pen needles. The subsidies vary but the most any eligible person (all Australian residents with diabetes) will pay for 100 test strips is AU$14.70 (exchange rates close to USD) and the least is AU$1.20, or even free. Criteria is varied and includes anyone with a Health Care Card (usually low-income people, pensioners etc) to veterans. If you have reached what we call the Safety Net for out-of-pocket costs (approved items only), test strips are free.

More info about Medicare Safety Net:
http://www.medicareaustralia.gov.au/public/services/msn/index.jsp#N10059

More info about PBS Safety Net:
http://www.medicareaustralia.gov.au/public/services/scripts/pbs.jsp#N100D3

Now here’s what interests me from JDRF:

The high use of hospital care by people with type 1 diabetes is a major contributor to cost burden, with hospitalisation accounting for nearly half the direct health care costs incurred by people with the disease. In a recent survey of people with type 1 diabetes, more than a third of respondents indicated they had been admitted to hospital emergency departments in the year prior to survey. 

Improving resources for managing diabetes in Australia would go a very long way to reducing the cost of hospital admissions. How? One way is by more easily allowing into Australia the various types of insulin pumps and Continuous Glucose Monitors (CGM) that are already available in the USA and Europe, for years… ones that are already being used and have proven to improve diabetes management, AND making them more affordable!

We don’t have many choices in Australia. Animas, Medtronic and Accu-Check sell and support insulin pumps here. Medtronic has CGMs here, hellishly expensive too and not covered by insurance – not the CGMS and not the sensors at $70 each. Insulin pumps are covered only by private health insurance, which most people here don’t have, and there is a scheme for kids of low-income earners to be subsidised to buy an insulin pump. Half of $7,500 for a low income earner is still out of reach for most.

The Dexcom 7+ CGM, the one I’m always complaining isn’t here yet, still isn’t here, despite it already being approved for sale in Australia quite a while ago. Likewise the Omnipod, a tubeless insulin pump, also isn’t here yet (at the time of writing). Likewise various other options that are available in the USA and Europe.

I guess one factor is that we are a country of only 22.2 million people (2010 estimate), a long way from anywhere, and a huge country where distance is an issue. The cost of setting up operations here for say 100,000 people with Type 1 Diabetes (not to mention all the people with Type 2 who would benefit from this technology), not all of whom could afford an insulin pump, is prohibitive. Big Pharma (and this includes diabetes technology manufacturers) has to make profit, right? Pity!

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The Big Blue Test 2011

The Big Blue Test is coming up again! Each year, thousands of PWDs (People with Diabetes) test their blood glucose, do some exercise and test again. Then they share their before and after results.

It’s always a fun thing to do, so I encourage you to get the word out to everyone you know with diabetes, and to encourage people to participate.

Here’s how…

From: www.bigbluetest.org

In 2011, with each Big Blue Test, Roche Diabetes Care will make a donation to support humanitarian diabetes programs. When you do 14 to 20 minutes of exercise and share your blood sugar readings before and after getting active, YOU help yourself and you help us get life-saving supplies to OTHER people with diabetes in need.

 


How to Join the Big Blue Test: Between November 1 and November 14, 2011 (World Diabetes Day):

1. Test your blood sugar.

2. Get active for at least 14 minutes (run, walk, bike, jump, exercise however you can!)
3. Test again.

4. Share your results back here… (www.bigbluetest.org)

Important
If you cannot perform physical activity for medical or disability reasons, or because your pre-exercise BG level exceeds 250 mg/dL, participate as you can. Share your blood sugar readings and invite others to do the test and watch the video. For each person that shares their Big Blue Test experience on this site between Nov. 1 and Nov. 14, a person with diabetes in need will get life-saving supplies.

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Animas Insulin Pump

I've had an Animas Insulin Pump since June 2009. I absolutely love my pump and I love the wonderful people at Animas (AMSL Australia).

If you are even remotely thinking of getting an insulin pump, please feel free to contact me and ask me why I love mine and what a huge difference it's made to my life.

There are also lots of posts here to give you similar information.