[Diabetes] Freestyle Libre BG monitor

robinph

Have just had delivery of a new Freestyle Libre BG monitor as they are now available to order again in the UK. They are not officially available in Ireland yet as far as I know.



It's not cheep if you intend to use it all the time at ~£150 for the "starter pack" which gives you the reader and two sensors that are meant to last 2 weeks each. The sensors then work out at ~£50 each, although they do let you off from paying VAT which brings the price down a tiny bit.



In the main box you get the reader, USB cable and mains plug, there are then two seperate boxes with the sensors and applicators in.

Fitting the sensor to the back of the arm is very simple, way easier than reloading and attaching insulin pump canuals. You screw the sensor into another widget to attach the needle, then press it against your arm, it clicks and you are done. I didn't feel a thing with it attaching, although I have seen reports of some people saying it was painful, I guess that is just down to luck the same as when attaching the pump canulas.

The blue thing to the top is the sensor with the needle now attached to it, and the grey thing to the bottom is the thing that you click the sensor into to fit the needle before applying it to yourself.


It is only the size of a €2 coin, or £2 in my case, and hopefully won't be getting in the way or caught on clothing where it is.



On turning on the receiver you have to set the date and time and also BG range. The receiver also looks to be able to work as a regular BG monitor, I'm not sure if this allows any calibration, but I don't have any of the Abbot Freestyle blood strips. You then scan the sensor with the receiver and then have to wait 60 minutes before it will start taking readings...

... I'll be back later to report some more on the readings that it gives. Hopefully the glue on the sensor lasts two weeks and doesn't come off in the shower or from sweating due to exercise.

robinph

Just did a manual finger test and got 5.6.

Scanned my arm with the Libre and got 5.6.

Hopefully that is not just a fluke, but it is pretty awesome if it ends up being that accurate compared with blood tests. What this sensor doesn't do is continuous monitoring or giving you alarms to highs or lows. It does do continuous recording of the BG levels, as long as you scan your arm every 8 hours. So with any luck I may be able to get some good basal testing done through the night without needing to actually wake up and test. Also being able to see what my blood is doing during marathon running would be fantastic and could help with not needing to keep the levels quite so high before a run, or take on as much glucose on the way round.

columjmackey

Hi Robin - would love to give this a go - where/how can I get one and how have you found it ?

robinph

Love it.

There is people claiming that it's inaccurate in various forums online, and although I've not actually done a hole lot of comparison tests between blood and what the Libre says, I've not found reason to disbelieve it at any point. If I'm feeling hypo and it says 3.5 then there is really no need to care that the blood numbers might say either 2.something or 4.something. You just treat that hypo and get on with life. Similarly if it reads high and I feel high then who cares if the blood meter may say a unit further out or something, just treat and get on with things.

It is absolutely fantastic that you can test a hundred time a day and never have any sore fingers from it, you get a graph on the reader and you can see exactly where and when rises or falls happen, you can test much quicker than with a finger stick and through clothes or whilst doing other things where you wouldn't normally be able to test (such as whilst marathon running for me).

It is expensive, but I think it is worth it for me until it gets approved for funding via the NHS.

You can order it in the UK from here:
http://www.freestylelibre.co.uk/

This is their Irish site, but I think they are not selling direct to Ireland just yet. Not sure if people have been successful with ordering via other routes using the UK site or not. This site just seems to be a place to register that you want to know when it is available:
https://scantotest.ie/

C-Shore

robinph wrote: »

Love it.

There is people claiming that it's inaccurate in various forums online, and although I've not actually done a hole lot of comparison tests between blood and what the Libre says, I've not found reason to disbelieve it at any point. If I'm feeling hypo and it says 3.5 then there is really no need to care that the blood numbers might say either 2.something or 4.something. You just treat that hypo and get on with life. Similarly if it reads high and I feel high then who cares if the blood meter may say a unit further out or something, just treat and get on with things.

It is absolutely fantastic that you can test a hundred time a day and never have any sore fingers from it, you get a graph on the reader and you can see exactly where and when rises or falls happen, you can test much quicker than with a finger stick and through clothes or whilst doing other things where you wouldn't normally be able to test (such as whilst marathon running for me).

It is expensive, but I think it is worth it for me until it gets approved for funding via the NHS.

You can order it in the UK from here:
http://www.freestylelibre.co.uk/

This is their Irish site, but I think they are not selling direct to Ireland just yet. Not sure if people have been successful with ordering via other routes using the UK site or not. This site just seems to be a place to register that you want to know when it is available:
https://scantotest.ie/

Have you tried getting the sensors on LTI?

columjmackey

C-Shore wrote: »

Have you tried getting the sensors on LTI?

Have done - not covered - can't even buy the thing from Ireland - imagine that !! a device that would save a few of us a few years of life and we can't even get our hands on it with money !!! Only in Ireland

C-Shore

columjmackey wrote: »

Have done - not covered - can't even buy the thing from Ireland - imagine that !! a device that would save a few of us a few years of life and we can't even get our hands on it with money !!! Only in Ireland

Yeah I know, surely they can just approve vendors and then set an allowance per item type e.g €50 for sensors, €70 for insulin. Then we should be free to choose what suits us best.

I'm just trying to think, is €30 per week justifiable?
Theoretically I can test just as much with a finger prick (and I'm sure that's one of the arguments used in the HSE), but anyone with diabetes will understand how unrealistic, painful, and degrading to quality of life that is.
The reason CGM exists is because finger pricking isn't the best way to improve life expectancy and quality of life of a diabetic.

PepePareja

Hi Robin,

I've recently purchased a starter pack, along with 2 spare sensors. Unfortunately, the first two sensors have failed within the first 3 days of use.

I emailed Abbott, but haven't heard back. I'm hopeful that they will replace them. You mentioned that you can get away with not paying the vat. Is it as simple as ticking the box that says "I claim relief from Value Added Tax".

I had assumed that I would have to provide some sort of UK based social service/tax number (which I don't have as I'm in Ireland).

Thanks in advance.

P.S., as regards accuracy, when the sensors have worked, they vary for us by as much as 3 mmol/l compared to the Freestyle Lite glucometer. To say I'm disappointed so far is an understatement.

robinph

Re the VAT, just ticking the box to state that you are exempt is all you need to do.

Try phoning Abbott about the faulty sensors. I've seen it mentioned in a few places that emails tend to go unanswered. I had my first reason to phone them last week after a sensor didn't stick and just fell right off after applying it, phoned them and they are sending me a replacement, along with a pack to send them the faulty one back in.

I've not had an issue with the accuracy, although I've not done a whole lot of blood testing since wearing the Libre. Do remember that it is measuring different things from a blood test, and there is about a 15 minute delay between the interstatial fluid that the Libre measures and blood readings, also that no blood meter is actually accurate and the one you are comparing with could be out by just as much.
Also, I have noticed quite a difference between the reading on the Libre and even the reading taken by the Glimp app on my phone. This is due to the Glimp app reading the number that is currently being measured by the sensor, but the Libre reader does some other calculations to try and best guess what the blood reading would be, sometimes it will get this wildly wrong if there are rapid changes happening.

PepePareja

Thanks a million for the reply.

I feel like a bit of an idiot now I must admit. Had I ticked that box when I placed my first order of two sensors and a starter pack, I would have saved quite a lot of money.

I'm delighted to hear that you are using Glimp. I had been suspicious that it was the use of Glimp which broke the sensors. I've managed to contact the Glimp developer and he gave me a list of phones which appear to break the sensor. I'm using a Samsung Galaxy Grand Prime, which wasn't on the evolving list, but I've no way of knowing if the failing sensors are related to this.

What phone are you using?

I'll take your advise and give Abbott a call today. Do you need to have the sensor serial numbers when you make contact and will they post replacements to your Irish address, or must you use Parcel Motel (I used that to place the original order)

PepePareja

Thanks a million for the reply.

I feel like a bit of an idiot now I must admit. Had I ticked that box when I placed my first order of two sensors and a starter pack, I would have saved quite a lot of money.

I hear you on the accuracy issue. I've seen images on Facebook of 4 different devices giving 4 different readings from the same individual, ranging from 2.4 to 5.4. I'm always concious of general accuracy and of the time lag, but when we were getting the large variation, there was no pattern of change showing on either the Libre or glucometer. The levels were relatively stable at the time. Luckily our son is very well tuned in to his awareness of hypos.

I'm delighted to hear that you are using Glimp. I had been suspicious that it was the use of Glimp which broke the sensors. I've managed to contact the Glimp developer and he gave me a list of phones which appear to break the sensor. I'm using a Samsung Galaxy Grand Prime, which wasn't on the evolving list, but I've no way of knowing if the failing sensors are related to this.

What phone are you using?

I'll take your advise and give Abbott a call today. Do you need to have the sensor serial numbers when you make contact and will they post replacements to your Irish address, or must you use Parcel Motel (I used that to place the original order)

robinph

Abbott will ask for the serial number from the box when you call. Don't know if they will post to an Irish address though.

I'm using a Galaxy 6 with Glimp and not had any issues with sensors dying.

PepePareja

Thanks.

PepePareja

I just got off the phone to Abbott. They were very helpful and are sending replacements, along with return envelopes for the faulty sensors.

Your advice is greatly appreciated.

Chris_Heilong

PepePareja wrote: »

I just got off the phone to Abbott. They were very helpful and are sending replacements, along with return envelopes for the faulty sensors.

Your advice is greatly appreciated.

Sorry for bumping a slightly old thread but a question,

Did you buy the faulty Sensor from Abbott themselves or did you get yours a different way as I bought mine on ebay and it failed after 6 days so want to be sure before ringing them.

PepePareja

I bought it directly from Abbott. I hope it works out for you.

The Black Oil

No personal experience of these or diabetes. However, I was on holidays a year ago and a British guy in his 50s had one. We were cycling in Asia, so plenty of mileage, heat and physical activity. No need to stop the bike for scanning/taking a reading. He was a huge advocate of it.

Great to see such technology exists for serious illnesses.

graflynn

The Abbott Freestyle Libre is on sale in Ireland today.

http://www.freestylelibre.ie/

C-Shore

graflynn wrote: »

The Abbott Freestyle Libre is on sale in Ireland today.

http://www.freestylelibre.ie/

Interesting that the VAT Free Option isn't there.
A quick comparison between UK and IRL seems that VAT is charged on these in Ireland, so the breakdown at current exchange rates is:

UK Website
Sensor + Delivery: GBP 53.23 // EUR 59.21 up front with no option for further VAT refund

IRL Website
Sensor + Delivery: EUR 65.85 up front // EUR 53.53 after VAT refund

I think we can claim VAT back on these. I've never had to do it before since everything else has been covered under the LTI, but I'm pretty sure this should be covered.

So at the moment, the question is whether the EUR 6 extra savings per sensor at the end of the year is worth the time it takes to claim the VAT back. I'm not sure how long the process takes in terms of paperwork.
Although if you're using 2 per month then there's EUR 144 to be refunded at the end of the year which is probably worth the time.

If you're buying it as a once off and aren't bothered with doing VAT refunds, then at the moment the UK is the cheapest option.

robinph

Having had mine for a while now a couple of weeks back I had my latest Hba1c results. Was my best number in years, and whilst they are still way too high it is a big improvement.

It is great to be able to see the clear trends through the day and averaged over several days/ weeks. I can clearly see where I need to make tweaks. The main improvement though is that there is zero "cost" to doing a test, as in you don't sit there thinking can I be bothered to do yet another finger stick as my fingers are already shreded. Just scan your arm and it's done, and it tells you way more useful information that the dumb BG test does with the trend arrows that show if you are actually going higher or lower.

It is expensive. But if you can afford the outlay it is really really worth it.

graflynn

C-Shore wrote: »

Interesting that the VAT Free Option isn't there.
A quick comparison between UK and IRL seems that VAT is charged on these in Ireland, so the breakdown at current exchange rates is:

UK Website
Sensor + Delivery: GBP 53.23 // EUR 59.21 up front with no option for further VAT refund

IRL Website
Sensor + Delivery: EUR 65.85 up front // EUR 53.53 after VAT refund

I think we can claim VAT back on these. I've never had to do it before since everything else has been covered under the LTI, but I'm pretty sure this should be covered.

So at the moment, the question is whether the EUR 6 extra savings per sensor at the end of the year is worth the time it takes to claim the VAT back. I'm not sure how long the process takes in terms of paperwork.
Although if you're using 2 per month then there's EUR 144 to be refunded at the end of the year which is probably worth the time.

If you're buying it as a once off and aren't bothered with doing VAT refunds, then at the moment the UK is the cheapest option.

Have you looked into claiming 20% back through the Med 1 form?
http://www.revenue.ie/en/tax/it/leaflets/it6.html

C-Shore

graflynn wrote: »

Have you looked into claiming 20% back through the Med 1 form?
http://www.revenue.ie/en/tax/it/leaflets/it6.html

No I haven't actually looked into it, I've never had need to. Are you using their system?

P_1

How long will this take to get onto the LTI? It looks great but €120 a month compared to free with my Accuchek Mobile looks a bit steep

Harry Palmr

You'd need to be a very bad diabetic (or quite rich!) to splash out for this item, it'll be LTI at some point and I'm happy (and poor) enough to wait

Meauldsegosha

P_1 wrote: »

How long will this take to get onto the LTI? It looks great but €120 a month compared to free with my Accuchek Mobile looks a bit steep

It could take up to a year for the HSE to make a decision on whether to include it on the LTI. In the meantime we could lobby our TD's to get a decision made quicker. I emailed my local TD's this morning.

robinph

P_1 wrote: »

How long will this take to get onto the LTI? It looks great but €120 a month compared to free with my Accuchek Mobile looks a bit steep

It's only that the BG test strips are free to us the end user, the company still gets paid. Can't find it now, but someone on 'tinterweb had done a comparison of the costs of BG test strips to the likes of Libre, Dexcom and other CGM's. The likes of the Libre would actually work out cheaper for health services to pay for than the BG test strips, and you get a mountain of more usefull information from the Libre or CGM.

If you think the Libre is expensive, then do not look at the prices the HSE will be being charged for BG strips. They are definitely not free. :eek:

shug02

Must look for some numbers....

shug02

Some numbers....
On the question of cost to the HSE, here's some back of the envelope numbers
To work out an average spend on test strips per diabetic in Ireland. "In 2014, the total HSE expenditure on blood glucose test strips was 46.8 million.". The total number of diabetics in Ireland in 2013 was approx 225,840 . Therefore, an order of magnitude estimate of spend per patient on test strips in 2014 is approx 200. Annual cost of Libre test strips = approx 50*(365/14) = 1300. So Libre is 5 to 6 times more expensive per test by this calc.
Alternatively estimate: NICE in UK estimated in 2013 a cost of 29p per strip and 4p per lancet, giving a total cost of 33p per SMBG test. So assume 4 tests per day = (4*365*0.33) = 480 per year per patient. So Libre is 3 times more expensive per patient.
BUT!!......previous studies show that each additional glucose test correlates to about 0.2% reduction in HbA1C, therefore the reduction in HbA1C across Libre patients should be very significant given that Libre gives us (4*24) = approx 100 readings per day!! A 0.4% HbA1c reduction leads to 15 year cost reduction of 1224 per Type 1 patient . So a 1.2% reduction(!!) would equate to over 4000 saving per patient in complication treatment costs.
This would cover about the same period of Libre test strips assuming test strip costs reduces over time. So overall a back-of the-envelope breakeven situation for the HSE without considering the benefits to our lives, reduced hospital waiting lists etc. etc. etc.

Send this to your TDs! HSE should act now.

robinph

Was that diabetics, or type 1 diabetics as there is a vast difference in supply of test strips to different patients.

echo beach

It doesn't matter how much will be saved in the long run. That isn't how the health budget works. All anybody cares about is what gets spent THIS year and what is spent in their own little silo. Savings in another area of the health service are of no interest to those who have the job of cutting down spending on drugs and appliances. They have already implemented restrictions on the supply of test strips to non-insulin users, with no regard to possible long term impacts.

The HSE will only look at the COST, not the VALUE. They will not fund something that increases costs. Until either the cost is less or there is a great deal of political pressure then there will be no movement.

gctest50

echo beach wrote: »

..........

The HSE will only look at the COST, not the VALUE. They will not fund something that increases costs. Until either the cost is less or there is a great deal of political pressure then there will be no movement.

No, they put extra effort lately into diabetic clinics to reduce amputations

You get ~ 4 kinds :

All those with Type2
All the women with Gestational ( must be fun that : cravings & diabetes )
All the Type1

And all the sugar addicts that just can't keep their nose out of the feeding trough

Like all addicts, they'd absorb most of the time/resources/etc for the least return - state of the staff there after a putting up with a "long" day is pitiful

echo beach

gctest50 wrote: »

No, they put extra effort lately into diabetic clinics to reduce amputations

I'm sure the people in the clinics are trying very hard to reduce amputations but the people making the decisions about funding blood testing methods aren't talking to those people. There is no joined up thinking.

whoppoe

Has anyone checked if private health insurance cover any of the cost?

C-Shore

whoppoe wrote: »

Has anyone checked if private health insurance cover any of the cost?

I asked VHI and they said they don't cover anything diabetes related.

I read somewhere that someone got LAYA to cover it.

whoppoe

I contacted laya.

Hello. Can you tell me if you cover the new FreeStyle Libre Flash Glucose Monitoring System for diabetics under your Glucometer cover? Do you cover the cost of the sensors it uses which would come to approx ?120 a month

They replied with this:
The benefit for this once on a gp/consultant referral is 50% back up to a maximum of 150 per membership year.

So there you go. 50% of 150 per year is all they would cover

Bicky

I'm thinking of getting a years supply of sensors for my other half as a Xmas present.
Has anyone used the librelink app as a replacement for the meter?
Is it compatible with a galaxy s7?

C-Shore

Bicky wrote: »

I'm thinking of getting a years supply of sensors for my other half as a Xmas present.
Has anyone used the librelink app as a replacement for the meter?
Is it compatible with a galaxy s7?

Very nice of you!

I use it for mine, I never even bought a reader. I use a Google Pixel, and before that I had it on a Nexus 5 and both work flawlessly.

I would imagine that it works fine on an s7.

Best tip I can give you is that if you have access to the s7, lookup the app on the play store with that phone using the link here: https://play.google.com/store/apps/details?id=com.librelink.app

Then tap on the reviews chart, on the next screen tap on options, and then filter to show reviews "from this device model only".

If there are reviews then there are people using it with an s7. Then if there aren't reviews, it doesn't mean that it won't work, could just be that nobody is using it at the moment — although I'm sure there are!

I'm 99% sure it will work on an s7.

Bicky

Thanks for the detailed reply. That is great. Pity it doesn't work on the iPhone yet.
The videos I watch on YouTube make it seem like a very useful tool. The arrows indicating direction of BG and nighttime graph make it worth the pricetag.
I was thinking of buying the starter pack but after your post i think her phone might do the job.

robinph

It is still handy to have the reader, although I mostly use mine now to distract the 18 month old whilst I'm changing my pump or Libre and need a few less little fingers getting in the way.

The hospital downloaded directly from my Libre reader last time I visited them, I didn't have Diasend setup then. It is also a smaller device than your phone, and the battery will last longer.

A years supply would be awesome, but whilst I think it is a great device don't go splashing out too much until you know if it suits them. They may just not like it.

I don't expect it to work on the iPhone any time soon. This is because of Apple and nothing to do with the Libre. Apple have their devices locked down to force people to use Apple Pay, and they won't be changing that and giving other applications access to the NFC until they win that market, or give up on it.

banie01

I see there are a plethora of petitions currently underway to get the Freestyle Libre added to the LTI scheme.

There have already been a number of parliamentary questions raised to the Minister on this and it seems that up until last week Abbot had not submitted an application for the device to be added to the list of approved devices on the LTI.

Eugene Murphy TD has released a statement confirming that as far as he is aware, Abbot only submitted the requisite paperwork for this in the past week.

Eugene Murphy went on to say “When I recently tabled a Parliamentary Question with the Minister for Health Simon Harris in relation to placing the Freestyle Libre on the Long Term Illness Scheme. Minister Harris informed me that the manufacturer of Freestyle Libre had not yet made a completed application to the HSE for reimbursement of the device under the Community Drugs Schemes. A health technology assessment may then be required to assess its clinical benefits and cost-effectiveness. I understand that the HSE are due to meet the manufacturer shortly.”

“However I now understand this week that the manufacturer has in fact submitted an application to the HSE and I will continue to press this case with the Minister as I believe this device could really be life changing for so many children with diabetes,” concluded Deputy Murphy.

Full story at http://roscommondaily.com/2017/01/eugene-murphy-diabetes-long-term-illness/

CathyMoran

I have loved this device so far. just on my 3rd sensor (one fell off 2 days early) - I am concerned that I will become allergic to it but it has saved my hands so much, I do far less actual blood tests so it is saving money however I would love to have it on the LTI as it is a sacrifice in other areas but it has made such a huge difference to my life, though the cost is becoming too much for me already

B.Kelly

My son is only on his 2nd sensor and its making life a bit easier for him so far. Can I ask what the glimp is? He has an iphone so I see it won't be compatible with that but its something I might be able to use on my phone, sony xperia?

Chocho7

Does anyone know if it is possible to wear the Sensor on a part of the body other than the recommended upper arm?

Meauldsegosha

Chocho7 wrote: »

Does anyone know if it is possible to wear the Sensor on a part of the body other than the recommended upper arm?

There is a woman on the Diabetes in Ireland FB page who wears it at the top of her boob just under her bra strap. That works well for her.

graflynn

Hello,

I just want to let people who use the Freestyle Libre know about this event.

I am one of the volunteers involved in organising a workshop with a Dr Stephen Ponder who coauthored a book called “Sugar Surfing; How to manage Type 1 Diabetes in a Modern World”. He is an Endocrinologist and has lived with the condition himself for over 50 years.

The Sugar Surfing workshop is taking place in Dublin on Saturday May 13th and would be most valuable to people using either a CGM or the Freestyle Libre to manage their diabetes.

You can find out more about the Sugar Surfing Workshop here.