World Diabetes Awareness Day - What does it mean?

In this day and age it seems that there is an awareness or celebration day every week but we always get to the 14th of November and for those who live with Diabetes, Type 1, 2, gestational or even 1.5 it is the day where we try to bring awareness to one of the largest growing conditions / diseases in the world.

People get confused with the messages around diabetes as it is very much generalized in the day to day discussions from the media. It is very true that the largest population of Diabetics are Type 2 and this is a condition that is either a problem with absorption of the insulin being produced or it is a deficiency in the production. So in other words not enough insulin is produced to cover the entire body needs. The reason Type 2 gets the majority of the coverage is because, in my opinion, it is the majority and it also has the ability to be reversed in some cases. So in other words there can be a greater amount of good news stories as they progress coverage.

Type 1, even though not the majority, is the disease that is not curable or reversible it is only manageable. With the proper devices and knowledge someone with Type 1 diabetes is now expected to live as long as a person without diabetes however what isn't mentioned in that statement is the mental strain that all Type 1 diabetics are under. Even though T1 is considered an invisible disease the underlying pressure on an individual can be even more invisible to people who don't have to deal with counting everything we eat, testing blood multiple times a day, measuring exercise, considering stress, managing sick days and just having the ability to understand what is happening within your body at any one time.

When first diagnosed nearly 27  years ago the only option was multi daily injections so I thank the day that devices such as the Medtronic 640G insulin pump were created as it is with these devices that allows our life to be full and long. While living in Australia I believe we are lucky even though there isn't clear understanding in the general public we still have awareness and access to everything that we require. In so many counties some people are not so lucky. With limited access, whether it be because of supply or cost, to insulin people in our world are still having severe complications or even death. This isn't to say that people, even here in Australia, are not still having these problems through problematic control but at least we have the choice here. People in 3rd world countries do not even have the choice to make sure the wasting disease (diabetes) doesn't take hold and destroy lives.

On this World Diabetes Day be aware that we can all help make a difference in the world because I believe in a world were it is possible to manage this disease and all people that are in need should have access to what is life saving products. Even if it is 1 vial of insulin, an old BG meter or even some BG strips then speak to "Insulin for life" to help change the T1D world. "Everyone deserves a chance"

Living on a See-Saw

Imagine this -

As long as you can balance on your 2 feet most of us would be able to balance on a see-saw with both ends equally in air and balanced. Yes it would take time and positioning to make the weight right and there are things that could move that balance but on the whole you can maintain the balance.

Now lets add some complexity. Lets put another see-saw on the initial one and then try to keep both balanced at the same time. Yes it is possible but it will take more concentration, more weight balance and even more things could cause the balance to become off centered.

Ok now the tough one. Lets put another see-saw on the already 2 that we have been balancing. Now there are levels below levels and the slightest of breeze has the ability to put you off center. A simple shake of the leg will cause a flow on effect to each of the levels of balance. By moving left to balance the top the right on the bottom or left in the middle may be effected and every movement has a consequence. Yes it is possible to balance but it it takes, sometimes, an extraordinary amount of concentration and work.

So with the above in mind this is a simple, and one I find, to be an explanation of what it is like to live with T1D. There are so many things that can and will have an effect on you either straight away or even days later.

Now lets add a even more complicated situation to the see-saw lets put a bowling ball on the top and have you stand on that and try to stay balanced. I know near impossible. This is what it would be like not to have access to what we see in life as a necessity - INSULIN.

We  do have it good in our country where the government subsidizes a large portion of the cost for this life saving medication. In third world countries and some demographics in even first world countries the ability to have INSULIN is a luxury or even completely out of the question so in fact were we can at least try to stay stable on the 3 see-saws these people are never given the chance.

Insulin For Life is trying to make a difference by collecting unused insulin and consumables and sending them to people in need so they can at least try to stand on the see-saw.

The cost of peace of mind

A number of times now I have come across people asking how much does it cost to be on a pump and a CGM system. Don't worry I am not going to lie it is another cost in this extremely expensive world but when I look at the benefits it is 100% worth every cent.

I will go into more detail but here is the basic details -

• Insulin - With being on a pump you only need 1 type of insulin so to fill the script, here in Aus, will be under $40 for around 2 months (longer depending on your intake).

• Pump - This is obviously an expensive piece of the pie however what a lot of people don't realize is that 100% of the cost is covered if you have basic hospital cover with your Private Health Insurer. Yes that means that even though it may be a pre-existing condition the only thing you have to do is wait for a 12 month waiting period before you can claim for the pump. One great thing that Medtronic are doing about this is that while your waiting to get through the 12 month waiting period your able to access what is called a Bridge the Gap pump. This will give you a loan pump to get you up and running and then once the PHI kicks in you get your very own buddy that sits on your hip.

• Pump Consumables - This is the reservoirs and the canular lines that you need to replace every 2-3 days. Seeing as we are all Type 1 Diabetics we are lucky that 90% of the cost of these is covered by the government run NDSS (National Diabetes Services Scheme) program. If you not registered then get registered. On average 1 box of 10 reservoirs and a box of 10 canular lines will cost around $30. This means around $30 per month to run your pump.

• CGM - this part is where people really get scared and run away and I don't blame you. That is until you break it down to smaller periods of time and smaller periods of money. The best way to really look at things, I find, is to put it into perspective. A large part of the population these days take it upon themselves and have a few freshly brewed coffees a day and to get a decent coffee we are at least looking at $4 - $5 per coffee (Lets not get into the specialized coffee). So lets say you have 2 coffee's a day at $5, you are in fact spending $3,650 per year on something that may make you feel slightly more awake but in the long run isn't making too much of a difference. A CGM can cost as little as $8 per day and that sensor will make a big difference to both you and your child if your a parent of a T1D as I am. So what this really means is you are a couple that drinks coffee then you could make a difference by just giving up one coffee a day each. Medtronic have also come to the party as they understand that cost is a big part of making the decision around getting a CGM. They have created a subscription service which breaks up what originally was a large purchase and when you sign up for a 12 month subscription which would deliver a box of 5 sensors to your door every month but you would also get the transmitter for free. Now this is a saving of around $700. This is but one option that Medtronic offer as they really do understand that somtimes it isn't in the budget.

Yes this all adds to the budget and being a father to 3 girls and 1 of which has T1D as well as myself it is difficult however the peace of mind that we receive by stopping hypo's and just knowing what is happening at any given day or night is peace of mind I never want to give up.

Don't be afraid to look at the options because there are just that options to try and suit the majority of budgets.

3 Days in the Snow with T1D

• Hitting the slopes with ski's strapped to your feet,
• Darting left and right as you slide trying to reach the balance between speed and stability,
• Watching for pot holes, rocks, and even people is sometimes just the fun of it all.
• Doing  this between 9am and 4pm can be seen as extensive but doing it for 3 days straight gets your heart racing and your muscles working overtime.
• Pushing yourself to go on the runs that take you out of the comfort zone is also a part of the joy.

All of the above plus I am sure a lot more are the components that run through the heads of probably everyone going to the snow to ski or board now what if exercise has a major effect on your blood sugar control and how do you cope with T1D.

Thinking too much about it and thinking it could be scary is easy to do but in practise I found it to be amazingly simple.

One of the gray things about ski jackets is that there are a lot of pockets. I say this because we all know we always carry a lot of stuff each and every day.

• I start the day the same as everyone checking my BSL and having a decent breakfast.
• I then head to get set for the day. In my pockets I pack a pack of quick acting glucose, my tester, wallet, glucagon, phone and keys. Yes there are that many pockets.
• I then make sure my CGM sensor is still reaching the pump under the layers of the ski clothes and that all of my tubing is nice and tucked into my clothes so that I don't run the risk of it freezing in the sub zero temperatures I am about to go into.
• I then collect my gear and head for the beautifully groomed snow fields in Queensrown, New Zealand.
• After going through the standard awkwardness of putting my ski boots on I step onto the snow and place my skii's down getting ready to head straight to the top of the mountain.
• Before I do however I take my pump out from its warm and protected home and check my BGL on the CGM. 
• I am currently sitting at around 9.0 BGL keeping in mind I have just had breakfast and insulin is still on board. At this point I also start a temporary basal of 50%. So in simple terms I am only going to be having half of what I usually do because of the strenuous excercise that I will be doing.
• I then tuck the pump safely away and step into my ski's and push off to the lifts.

My day then went as anyone else's would, fast skiing, dodging and pushing myself to an uncomfortable level. Through my 3 days of following this process I did not have a simple hypo. I would start at the beginning of the session and terminate the temp rate as soon as I finished and was leaving the mountain for the day. Each of the days, depending on how hard I pushed my BGL stayed between 9.5 and 5.4. Even after each of the sessions and making sure I had wholesome meals and making sure the CGM and Smartguard was active I didn't even have any susequent hypo's.

To me this also proves that this was a successful trip and also shows that with the technology we have there is no reason why anything is out of reach if you just manage the best ways possible.

The Cost of Life

It is 2016 and in Australia there is 125,000 type 1 diabetics. There are millions world wide and we progress everyday towards easier management however in some countries it would be still believed that type 1 diabetes is a certain death sentence. This isn't because the life saving hormone, Insulin, isn't available but more to do with the fact that it is not affordable for a family to get what they desperately need for life.

I admit here and now that here in Australia we are lucky. Lucky to be born in a country that realises that health is important and that a suitable health care system is in place to make sure the drugs and devices are available when needed.

After reading stories on line from people saying that they needed to ration out their insulin to make sure they can make it through to when they could afford more (due to either the health care system or the insurance company rules) it shocked me to think that big business and governments are playing with lives of people who should be able to lead long and normal lives as long as they have the small drops of insulin in their system to stop the rapid rise of dangerous blood sugars which if left untreated will cause organ failure and ultimately death.

Anyway after reading these stories I came across data that looked at the true cost of what we need when held up to the average wage in each country. We all complain that this disease is expensive but I bet the following will shock at least some of you.

• In Australia the cost of insulin and diabetic consumables equates on average to 1% of a yearly family income who sit in the lowest 20% income group for the country.
• In India the cost of insulin and diabetic consumables equates on average 148% of a yearly family income who sit in the lowest 20% income group for the country.

Right now I bet your thinking well if I had to try and find a way to live with what I have and put the insulin into my body but it will cost me more that I can earn "What the hell would I do?". I know I am. But they s isn't even the scariest part of the story.

• In Malawi and the Central African Republic the cost of insulin and diabetic consumables for the lowest 20% income bracket is 1160% and 1438% of the yearly income.

Imagine being that person knowing that the drugs that you need and the equipment that can help save your life is just simply out of reach.

We live in an era where we go online and purchase this and that from all over the world never thinking of the people who can't get what they need to live, to stay alive even at a basic level. This isn't just for people with T1D this a problem with a lot of diseases in developing nations however T1D hits home for me and as a father of a T1DD it makes me think what if I couldn't get what she needed. Her life would not be as it is.

Further investigation into this I came across Insulin for Life (IFL). A non for profit organisation in place to collect and distribute insulin and diabetic supplies that would be otherwise be disregarded and thrown out and sending them to developing nations to help just some of those that don't have access to what they desperately need. IFL is located globally so if you have insulin that is getting close to use by date or equipment that you have upgraded or your moving from MDI to being on a pump and you no longer need large stores of long acting insulin then open your mind to those that don't have the access you and I do and save a life. Even if your reading this and a loved one is the one with T1D then you can also help with donations. 

We live in a time of global awareness and I believe that we all have the right to live now that we have the technology and medical advancements to change a death sentence into life.

The "What If's"

I sit and ponder today as to what will be next? I have recently had a progression from my MS which has seen the sensation on the left hand side of my body now being effected. I can still do everything but what I think has effected me more now than ever is what happens if it does worsen again.

I have just returned from a theme park holiday with my family where we walked our feet off going from one end of the parks to the other and I caught myself looking at the screen for the new dinosaur roller coaster in Osaka Universal studios, it just so happened I was riding this alone in the single rider line so the thoughts were all my own with nothing to distract me. I remember the screen saying all the precautions about the people who they advise should not ride and all of a sudden I thought to my self one day that could be me. Maybe the central nervous system will continue to get attacked to the point of adverse immovability or even disability. My thoughts then grow to taking into account the "what if's" in life.

What if

• The above does happen? How do I put that on my family?
• What happens if I loose sight of management of my T1D and complications follow?
• What if through either MS or T1D I am not able to support my family?
• What if my daughter doesn't want to manage her T1D through out her teenage years and beyond?

This is only but a few but on the secondary side

• What if non of these ever happens?

I am very much a believer in living in reality and trying to make sure I don't live in a fairy tale world where nothing will ever happen. It can be a dangerous place to live sometimes as it takes living on a see-saw and trying to balance out constantly. There are bad days and there are good days but I think everyone can say that. What I think works best is to have what is possible in the back of your mind so that you can gradually accept what may be while you focus on what you are able to do and achieve.

If you do the opposite and focus on what may happen and have your current capability then the mental side of any chronic disease will play a big part of life.

Acceptance is key and even after 26 years I think there are days where you revert back to not accepting what you have but I suppose those days are less than the days that you accept and move forward and appreciate the strength that we have by having these diseases and living each and every day as best as we can.

My letter to the people who make the decisions for our country and citizens....

To the politicians who have the very difficult job of trying to make sure everyone in the country is happy,

I live in a minority and unfortunately being heard is like being an ant and trying to have a human stop stepping on them by yelling stop. That being said I think now is the time that we need to be heard and we need the ears of our government leaders so that life and the healthcare response can be made even better for others that become a minority by becoming a Type 1 Diabetic.

I have lived for 26 years with this disease and to tell you the truth even though the instance of diabetics as a whole has increased the instance of T1D's has only increased marginally compared to the Type 2 population however the burden of cost and access to the technology that will not only be able to make our lives easier but will also put less pressure on the public health system as it is shown that people that get to be able to use the latest technology have lower rates of diabetic complications which will put them into our hospital system.

I read online through social media about the people across the world who have multiple visits to the emergency department every month and I wonder if there was greater access to what they need would they be able to reduce that dramatically and live much better lives. I see that on average it will cost up to $6,500 per admission to hospital also. So in all if you were to stop at least 2 visits to the hospital per year, the cost of the technology would be accounted for.

In 26 years I have never been admitted into hospital for diabetic reasons. I put this down do making sure I sacrifice to ensure I have access to what I need. This means that my family and I do with out, it means that some weeks the budget is very tight, it means that I have to say no to my family when I should be able to say yes. It adds stress and pressure on top of the pressures of daily life which we all know are growing exponentially.

As a type 1 diabetic I know my daughter and I can manage our disease with a needle and syringe but you can also mange getting around using a horse and cart in a day where we can move a lot faster and with greater efficiency using a car, bus and motorbike. Why is is OK that the government sees it as ok to subsidize the syringes however not look into the technology that would really make a difference.

The technology I refer to is the insulin pump and continuous glucose monitoring system that allows for greater control and accuracy and in fact greater peace of mind. I say this as living with this disease does not only effect the individual with it but the whole family. It has people stay awake day and night not knowing what the next challenge is going to be, worrying if during the night when everyone is in slumber will the body choose to drastically drop the blood sugar which will cause the loved one to die. It seems drastic to say but this is reality. It wasn't that long ago that Type 1 Diabetes was a death sentence and in fact it is only in 2 generations that we are seeing longer life expectancy. When I was diagnosed I was told that it would decrease life expectancy but 10 to 15 years, Now when my daughter was diagnosed some 24 years later it is said that with good control and management it shouldn't shorten life span. I don't know about you but I want my little baby to be healthy and happy to well into being an old lady and even further.

We ask governments to take the initiative to not just look at what will make do but what will make lives of people living with chronic diseases better both now and well into the future. There may only be 125,000 people living with T1D in the community of Australia but to each T1D person there is a whole army of people behind them wanting to make sure they have access to what they need to make there lives easier in the battle against T1D.

Please consider as sometimes it is the minority's that genuinely require the attention to ensure we make our country a leader.

Why wouldn't you?

It is amazing to live in a day and age where medical advancements are coming quicker than ever. Technology as a whole is making it exciting to be alive.

• I grew up seeing the introduction of the VCR to DVD and now to online streaming.
• We have gone from having a fixed land line phone which you had to stand at the wall to talk to someone to now having your phone in your pocket any time of the day anywhere in the world.
• Computers have been introduced into homes and now your phone has more capability than computers that came out just 10 years ago.
• The internet has changed the world as we know it. Information is now at our fingertips and you don't even need to leave your home to do your weekly shopping.
• The world is becoming globalized.

This is only a brief touch on the amazing advancements in general life. What really amazes me is that we accept and adapt to these changes. We are connected to a device nearly 24x7, whether that is a laptop on your desk which then transfers to your phone when your out. We expect everything to happen now if not yesterday and the children of today want it even faster. 

With all this said when we are talking about medical benefits why are we even considering not moving to the most advanced technology we have at our fingertips for T1D management. We hear how the majority of people with T1D still giving manual multiple daily injections and testing manually through out the day and possibly never knowing about the peaks and troughs that can happen day and night.

Something that is even scaring me further is the lack of adoption from the medical fraternity. Even though it is slowly getting better I believe that a large reason why T1D's are not moving to the latest technology is the fear from GP's and Endocrinologists not to recommend making the move. This could be the fact that learning something new will add workload to their busy schedule or it could be that they think it is just to difficult to help manage their patient now that they would have more control and responsibility of their diabetes.

No matter what it is I ask you "Why wouldn't you?" Rather than "Why would I?"

Moving from multiple daily injections to the insulin pump, which is now Medtronic 640g with continual glucose monitoring is the smartest move I have ever made for both myself and my 5 year old daughter.

We are at the eve of going on a large overseas holiday and instead of stressing about how we are going to cope with our diabetes while away all we are stressing about is making sure my wife doesn't pack too much. 

Our A1c results have never been better and to tell you the truth in the last 17 months that we have been on the new pump we have not had any dangerous Hypo's at all. We have effectively eliminated them from our lives which is amazing.

People worry about having something connected to them but I also put it to each and everyone of you with T1D - "Do you have a SMART phone / mobile phone?" If you do then I would also say that that it is probably on or close to you through out the day and the amount of people who have to look at their social media first thing and last thing in the day is probably more time than I look and manage my pump on a daily basis. 

I suppose what I am saying is that we need to put our health first and we are in a day and age where technology is making a difference each and every day. Old methods work but that would like going to an old wired telephone that is attached to the wall in your home and expecting that to be enough for all of your communication in this day and age.

Why wouldn't you?

12 months in and the 640g is still everything we were waiting for!!!

We live our lives now with technology all around us. We see pre-school children able to swipe phones and iPad's to open them and with little instruction are able to navigate their way around to get what they are looking for. When you sit back it really is amazing the difference in one single generation.

This can also be said about the leap forward with the Medtronic 640g pump. Over the last 12 months both my daughter and I have been putting it through it's paces along with the CGM system and I can safely say that it has made our lives easier. Trust me when I say my daughter still hasn't gotten used to doing what she calls her 1,2,3 (site change) or sensor change but on the whole it has made life easier.

At kindergarten the awareness and adoption of the teacher and the helpers has been amazing. They now have the confidence to manage things during school hours and we have the confidence that she will be safe and secure while we are not there. This is an amazing relief.

When looking at the data over the 12 months we have been able to adjust settings where needed and now that we have a pool understanding how things are directly going during exercise has been a god send. We have noticed that we have not had any serious lows since being on the 640g system with my daughter. Saying that I think I can count on one hand how many times we have had any number in the 2's.

 In a 2 week period of data there were around 17 times that the pump automatically sensed the BSL dropping and suspended and once the BSL was rising automatically started again. In simple term it saved us from 17 hypo's in just 2 weeks.

All in all the user interface has been extremely easy to navigate even for people who have never dealt with a pump before, the reliability and accuracy of the sensors allow the pump to do what it does best and one of the biggest things is the support we have received from Medtronic has been second to none. If we have had any questions or if a sensor had any errors (such as insertion when it hits blood) the world wide support center is available at any time.