That means in simple terms through no fault of my own when I was in my late teens my insulin producing cells of my pancreas decided to go out of business.
I produce no insulin of my own, I take insulin every time I consume anything containing carbohydrate, and must test my blood glucose level every few hours in order to maintain a good level of control to try and minimise both the short and long term problems associated with fluctuating glucose levels (potentially resulting in death at both ends of the scale). A functioning human body can control it's glucose with very good precision, in contrast a Type 1 Diabetic is trying to hammer in a carpet tack with a sledge hammer, it works, but inevitably you get it wrong, a lot.
To have any chance of getting it more right than wrong, I use a Blood Glucose Meter, these devices use single-use "strips" which are inserted into the meter, then a drop of blood is added to the strip, and (through an electro-chemical reaction taking a few seconds) this is interpreted by the meter to display the amount of glucose in my blood.
Naturally, these strips are not really cheap (somewhere around a buck a strip, multiple that by 6 to 10 strips a day, 7 days a week, 365 days a year, for the rest of your life...), but of course Pharmac subsidises these vital necessities of a long and healthy life, as it should, in a socialised medical system such as ours (there is a lot more that Pharmac could and should fund for we long suffering Type 1 Diabetics, but let's not get into that).
Originally I had an original "Glucocard", a truly venerable device (if slow), it was the benchmark nearly 20 years ago.
Then some years later I purchased a "Glucodisc" which was a real upgrade, the strips being contained within the device (on a rotating foil card holding 5 strips, or was it 10) meant one less thing to carry, it had test memory and produced averages on the fly.
But Pharmac in their wisdom, a number of years ago decided that the Glucodisc test strips would no longer be funded, this made the Glucodisc worthless, as paying sticker-price for strips was simply not economically viable. So I was forced to choose from the range of funded meters, of course there was a range, as you'd expect, different people have different needs, right?
I chose the Optium Xceed, and despite my misgivings with it not having self-contained-test-strips, it has proven a good meter, it stores 450 results, produces 3 different averages (although not the A/B averages that I remember the Glucodisc could, to tell you what was happening at different times of day), it is very small and pocketable (almost walletable) and while not self-contained, the strips are individually sterile foil-wrapped (on a perforated sheet of 5) like the old glucocard, so are still fairly convenient to slip in your pocket/wallet.
Fast forward a few years, I'm on my second Xceed now, the first having finally bitten the dust through being sat on, walked on, slept on, and generally abused. I'm still happy with it, in fact I was thinking about getting a third one soon since my current one is looking a bit raggedy now too.
But today, I read this:
Pharmac are doing it again. Withdrawing funding for my meter's strips. Not just my meter in fact. Virtually every single diabetic in New Zealand!
Their brilliant plan is to give a monopoly on supply of test strips to one manufacturer and their own meters, "CareSens".
A quick look at the CareSens meters (pretty much unknowns!) shows without much investigation that they are NOT AS GOOD AS THE EXCEED and probably not as good as many of the other meters that we currently can use under subsidy.
If you want the one that stores 250 results, then it's physically MASSIVE. My tiny Xceed stores 450 results.
If you want one that's smallish (but nothing like the Xceed), it only stores 10 results! That wouldn't even give me a day of results sometimes, let alone a useful average! What's the point of it, 10 results, what?! How is that even useful to anybody. TEN RESULTS?!
The strips seem to come in a plastic (like photographic film type) canister rather than be individually wrapped.
I don't want to carry a bulky canister with me everywhere I go! My Xceed strips are foil wrapped, I can take 1, or 2 or 5 in their foil wrap with me slipped in my wallet without any problem of contamination.
Even with the larger meter, you only get a 14 day average
My Xceed can display averages of 7, 14 and 30 days.
So pretty much Pharmac is throwing out any notion of choice, we are going to get what we are given, and what we are about to be given is a glucose meter which is vastly inferior in comparison to many of those which we ALREADY OWN AND USE.
Other related posts:
Live by the sword
Diabetics - Deadline For Strips On Repeat - 1 March
3 News: What is your personal imcome...
Comment by gzt, on 28-Feb-2012 13:54
The stuff article says there is a consultation period in progress. It looks like this is not going to fly as it is.
The consumable cost is very high, i wonder how they work?
Comment by slartibartfast, on 28-Feb-2012 14:00
You really have to wonder what they're doing. Our daughter is T1 - and we saw this the other day.
We'd never heard of the Caresens - and it doesn't exactly seem like a step forward in technology, indeed as you note lots of minor steps backwards.
We're on Accuchek, so used to the canister of strips - but have an Xceed for ketone testing and I can see the foil strips would be convenient if you're adult who is out and about and looking for something a bit more discrete (not such an issue with a young kid when you're carrying a million other things).
Pharmac are due to make a decision on Insulin pumps and consumables any day - I guess this will have a similar outcome.
Managing type 1 is hard enough already without having to deal with this kind of annoying change.
Comment by slartibartfast, on 28-Feb-2012 14:40
Just searched and the Insulin pump proposal came out yesterday:
Amazingly - they've recommended the Animas 2020 - which is what our daughter has - so we've lucked out. Most other people will not be so lucky with Pharmac's choices matching their own. However, at present with nothing being funded this is a big step forward. This should save us thousands of dollars a year - hooray.
Comment by MissBiss, on 28-Feb-2012 18:20
This made me so angry when I read this, I am like you and used the Glucodisc when I was first diagnosed and find it brilliant.
I used a accucheck for awhile but found it crap as the the strips are contaminated each time the canister is opened meaning I got very inaccurate random numbers each time I tested. Its good they finally funding pumps I just wish they would fund Detemir, since I don't want a pump and allergic to Lantus.
Comment by Tony, on 28-Feb-2012 21:49
This could be a really bad start to the year. Added to my gripes about the free anual checkup. I hope that all the diabetes societies unite into one national body then perhaps we will not be compromised again and again and again.
Comment by Rich, on 29-Feb-2012 14:00
The consultation is still happening. I called Pharmac and they person on the phone told me that Caresens WILL be the funded supplier of BG meters for us diabetics in NZ. She also added that I do have a choice in which meter I use but funding for my current meter (Accu-Chek Performa) will expire & I will have to pay full price for test strips. I explained to her that there is NO choice as if I can't afford to pay for full price for my Performa test strips I will have to use the caresens meter & strips. That alone does not give me a choice. A choice would be if there were two fully funded meters & strips & I get to choose one or the other. Later this year I WILL not have a choice like I do now. I WILL have to use the caresens meter unless I want to pay full price for my meters & test strips.
Comment by Adrian, on 29-Feb-2012 17:46
If you want to submit to pharmac you can, there is a link on this site with email etc to write to on the issue.
I also saw my specialist today and he recommended contacting your current meter provider about it.
Ive been a type 1 diabetic since 1984 and i wont be taking yet another stupidly thought out thing lying down.
Also did anyone else notice the carsens meters operating temperature range??? 10 ~ 40℃. Yikes if you try and test below that.....
Comment by SteveM, on 1-Mar-2012 07:25
A use an Accuchek Performa Nano, it gives you an average up to 90 days, which you can quite easily calculate approx. what your HbA1c would be. This is great because it gives you a very good idea what the overall picture is.
Comment by Kathy, on 1-Mar-2012 20:45
I think a big problem we face as T1 is that many have no idea what it is like on an hourly basis to live with diabetes and try to control blood sugars while trying to lead a 'normal' life. I've been told, among other things that I am obsessive - this was because I had a pump. I have had T1 for 37 years and used at pump for 27 years. I have no complications at all - I'm just getting old! I feel very much for the younger people who need the best technology to keep them well. I think the criteria Pharmac have devised for pump use is far too restrictive - it is not just hypos, it is wild swings in blood sugars that happen on multiple injections.
Maybe the meter they wish to pay for will be fine for those with T2 diabetes who do not need to test very often. I think there should be a totally different criteria for T1, especially the very young. I could go on and on............but it is very disappointing again to find another battle to fight with bureaucrats.
Comment by Shera, on 2-Mar-2012 09:51
Have you joined the facebook group against this? Stop Pharmac taking away the choices of people with diabetes
Comment by Mark, on 3-Mar-2012 22:04
I'm not too happy to be losing access to test strips for my freestyle lite meter (best available in NZ - smallest blood sample - most accurate reading).
I did previously use an exceed when pharmac only funded those or the horrid accuchek performa so was overjoyed when they started funding the freestyle as I had used those overseas.
Just a note on the Caresens meters.
It is not all horror as pharmac do propose to fund the new Caresens N which does look like a nice meter - and has had good reviews internationally by clinicians as giving the most accurate reading of any meter available in any market.
Comment by Mark, on 3-Mar-2012 22:10
"@slartibartfast - Amazingly - they've recommended the Animas 2020"
While it's great that they will now fund insulin pumps it is worth noting that the Animas 2020 is a discontinued product by the manufacturer.
Pharmac have probably got a great deal on run out stock or something.
Comment by Sandra Matthews, on 4-Mar-2012 10:56
It was interesting to read the comments above. Our 17 year old daughter is a Type 1 and after much fundraising and investigation is now using an Accu-check combo pump - very lucky girl as it has changed her diabetes management and mental health greatly. The support we have had from Roche staff throughout the process of decision making and since has been exceptional and well out of a 9-5 job. This is invaluable for us as even the silliest questions can be sorted quickly. Are we going to get the same level of service from an importing company who just delivers product on behalf of a Korean manufacturer??
I understand the need to cut costs in the current financial environment but Pharmac need to be more aware that Type 1 effects each person differently. What works for one person doesn't necessarily for another. In a perfect world the Pharmac decision makers would listen to the patients but it seems only LOTS of voice, maybe through local MPs and media we may be heard! Choice is something which is needed here for good long term management of diabetes and everyone is different!!!
As Rich voiced earlier affording to purchase strips is something I am sure not many of us can do and while we have committed to funding our daughters consumables for her pump, this change would just push us over the edge.
Lets hope Pharmac will come to their senses.
Comment by Ryan Craig, on 13-Mar-2012 13:38
This is INSANITY of the highest order! It was bad enough when they narrowed the range to 4meters now ONE and with a product and company that has little or NO market share because it produces an inferior product.
Are we living in the mild of the Cold War still since when did NZ end up behind an Iron Curtain and PHARMAC decided to adopt Stalinist dictatorial policies eliminating consumer choice, competition and market forces in favour of creating a state funded monopoly!
I have been a T1 diabetic for 25years - back when you had to measure your BS by matching the colours on the back of a bottle. I have used a number of great BG Meters over the years and since they rescinded subsidies on my previous meter have used Optium Xceed on my 3rd one - it takes a hammering!
And what about all the fantastic new age technology coming out of the US and Europe for the last few years in BG Meters the size of memory sticks and adaptors that plug directing into smartphones with Diabetes Apps. NO access to anything remotely modern of cutting edge for the next 3 years just a giant step backwards into a bygone era with no choice, no up to date technology and no surety of supply.
You can any colour you want as long as its a Primary colour we dont do hues and tones ... oh wait sorry we meant, you can can have any colour you want as long as its black and white .... oh wait sorry we meant you can have any colour you want as long as its black ... yes black but only this in this ugly shape with no style or useful benefits.
Your just Diabetics ... your all the same so ... monotone
PS. Just incase we overlooked it - even though you guys use these things and we dont we already know whats best for you we dont need your opinion.
Brings to mind the TRABANT East Germanys answer to the VW - the so called 'peoples car' when it was launched it was already an antique! One of the 50 worst cars of ALL TIME
Comment by Zipdisk, on 6-May-2012 14:27
I had a look on the web regarding the CareSens meter and a OZZ test show it as one of the most accurate meters.
A UK article about Meters, 25 brands in the UK the CareSens has the cheapest test strips.
I think people should do more research before they jump up and down.
I think that its ACCU-CHEK is fuelling this as they have the most to use plus there short dates on the test strips, plus they don't agree to HbA1c test and to use test strips all the time, yes more money to the very large rip off Corporate's.
My own doctor sated that I did not need test strips as my HbA1c is always ok, I am a Type 2 diet only control
Comment by Zipdisk, on 7-May-2012 13:12
No been at this game for to long and no where can I be classed as being ignorant, I have been a electronic Eng for some 40 years and do understand technical problems and the Hype that is put out. I am actively involved with the local Diabetics group and the one run my the local PHO.
I also have to pay for some of my medications due to Pharmac not fully funding the dearer ones, just wait till we join the US trade agreement then you will pay US prices for all you medications.
Comment by Chris Wilkinson, on 21-May-2012 11:47
Hi James, I'm also a type-1 diabetic. I just moved back to Chch from Australia after 7 years over there, and its like stepping from modern times into the dark ages when it comes to diabetic resources and support.
I used an "Accu-chek Mobile" meter in Oz which has 50 tests on a ribbon in a single cassette inserted into the all in one small ergonomic hand-held device - brilliant and I got it free in Brisbane a year ago. The cassettes are like AU$16 for a box of 2 (100 tests) under the NDIS scheme, so no need to get a script every time you need strips.
NONE of the available meters in NZ hold a candle to some of the meters I've used overseas, and it angers me Pharmac don't bring any of those in, or the strips - still dealing with inserting fiddly single test-strips is a joke today, but unfortunately the joke is on NZ diabetics.
I also did the DAFNE course in Brisbane earlier this year, and it has helped a lot - much better theory behind insulin dose adjustment than previously taught to type-1's. Just a pity that the US FDA ignored the initial DAFNE results from Germany in the 1980's, because they didn't want to spend money validating it for themselves, and because Australasia dances to the US tune it didn't come here until recently and then only to Auckland. All because bean-counters run Pharmac, not medical people...
Chris W, Chch.