Boots told to stop selling Libre Sensors to patients!!

I went in to Superdrug this morning. They had a sensor on the shelf and sold it to me for £35. I said I had diabetes. They didn’t ask for proof and did not add VAT. Maybe I was just lucky and they did say they would order some more for me and call me when the sensors come in.
Just letting you all know to try Superdrug. X

Speedbird said:

Just letting you all know to try Superdrug.

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I think the situation is changing as we type. I was also able to get my sensors for £35 from my local Superdrug Pharmacy last week. However, looking at one of the Libre Facebook Groups, someone is saying that although they bought some from the Reading Branch, they had been warned that they would be last ones they would get.

Overall, it's a very worrying situation and I would demonstrate outside parliament if necessary. My letter to the PM is ready to post when I get some clarification from my local stores. I might go out and ask the local independents to see what the situation is.

@DavidGrahamJones , I reckon this is all just a temporary blip while they move to a new distribution model.

Abbott's a $109 billion market cap company, so they're not short of cash to pay advisers, but they're selling libre worldwide, with a million and one local regulations to deal with in numerous countries, decision making in such a big company will be split across multiple approval levels, therefore, slow, and then there's the practicalities of implementing it on the ground.

None of us know what's going on behind the scenes. Maybe Abbott are trying to keep the government sweet by committing to meet prescriptions ahead of private purchasers. Maybe Abbott are saying libre is the flavour of the day at the moment, but users can be fickle and might get fed up with it tomorrow, so why commit to building more production facilities to meet today's demand which might be redundant in 6 months time if interest wears off. Maybe ccgs are holding off wider approval of prescription because they've been told there'll be fulfillment difficulties. Or maybe Abbott's been disappointed by the limited ccg approval, so are thinking why bother building more production facilities.

Multiply those sort of questions across the many countries it's being sold in, they've got a lot of work to do, so I'm prepared to cut them some slack while they sort it out.

There's also no reason why you couldn't buy dexcom or medtrum instead. Dexcom can work out about the same price as libre if the sensors are restarted, jury is still out on medtrum as it's supposed 14 day duration seems hit or miss.

PS: if you're going to demo outside Number 10, I'll wave a placard, but won't do anything daft like chaining myself to the railings!

Scott-C said:

I reckon this is all just a temporary blip while they move to a new distribution model.

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I hope you're right, I'm usually an optimist, unless I have very good grounds to be otherwise. I expect it's the problem with accepting new technology when it first comes out. I don't know if you use the Freestyle Libre yourself, because once you do, it's a game changer.

Scott-C said:

Abbott's a $109 billion market cap company, so they're not short of cash to pay advisers,

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Yes, I know, they buy up companies for $US25 billion out of their small change (St. Jude Medical, 2016). As for advisors, of course they have advisors, so they know that the product they sell is not a medicine and does't need a prescription and that they can't make the decision to make it prescription only. It doesn't seem to have stopped them advising the likes of Boots and Superdrug that they should only be providing the sensor to people with a prescription which they know GPs aren't writing in huge numbers because of the lack of CCG funding.

Scott-C said:

Maybe Abbott are trying to keep the government sweet by committing to meet prescriptions ahead of private purchasers.

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I think you're more of an optimist than me. The strange thing about prescriptions is that among other things that preclude me from getting a prescription, being type II is just one of them, also the fact that I was already using it before it was put on the prescription list. By the way, being on the prescription list just means that you could get a prescription not that you needed one.

Scott-C said:

Maybe ccgs are holding off wider approval of prescription because they've been told there'll be fulfillment difficulties.

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I feel 100% confident that it's down to money and the fact there isn't any. Nothing to do with our local ccgs worrying about Abbott's ability to fulfill prescriptions.

Scott-C said:

Or maybe Abbott's been disappointed by the limited ccg approval, so are thinking why bother building more production facilities.

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They've obviously spent billions in R&D, so will want that money back. If they're having difficulties supplying the numbers required then the take up must be bigger than expected. As you point out this device is available worldwide and our ccgs are a drop in the ocean compared to the insurance schemes that have provided funding.

Scott-C said:

Multiply those sort of questions across the many countries it's being sold in, they've got a lot of work to do, so I'm prepared to cut them some slack while they sort it out.

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You're very generous.

Scott-C said:

There's also no reason why you couldn't buy dexcom or medtrum instead. Dexcom can work out about the same price as libre if the sensors are restarted,

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If I'm not mistaken I need a sensor £50 ish, a transmitter £200 ish, a receiver £275 ish. The ongoing cost might be similar, setup cost is a big chunk of money.

My major beef is that it looks like Abbott are telling pharmacies only to provide (not sell) to people with prescriptions. That is a restriction that they are applying, not the authorities. Something that no type II will ever get, and I'm not complaining about not getting a prescription. The last 2 sensors I ordered from Abbott 3 months ago took nearly 4 weeks, the pharmacy took 24hrs. So that looked like Abbott didn't want to sell direct to the public and were getting pharmacies to do their supply chain. That highlighted the fact that different pharmacies were selling at different prices and cheaper than Abbott because they were only paying £35 to Abbott. Boots for example, about £50, just a 40% markup. Superdrug were charging £35, good old Superdrug.

By the way you're right about users being fickle. As soon as that device that works on the finger a bit like the oxygenation meter they use in hospitals, I'll be the first to jump ship although there will be a rush.

A changing set of circumstances that doesn't give me any confidence in what happens next. Watch this space I suppose.

If this is abbot forcing this then this is a case for for the monopolies board as it is a market manipulation. They are not allowed to dictate how things are sold on to force a higher price

Regarding the CCG uptake-

1/11/2017: #Libre arrives on #NHS Tariff 26/5/18: England: 130/207 CCGs Wales: Northern Ireland: Scotland: 7 HealthBoards #KeepTheFaith #gbdoc[>QUOTE]

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I still suspect the NHS could be behind it, somewhere. As Abbott seems to have a shortage of sensors, if they struggle to have enough for the prescribed people, they will come under fire from the NHS and may lose the contract.

cool_blonde212003 said:

My CCG currently don’t allow prescribing of Freestyle to Type1s

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Something else that's irritating, it's been made into a Post Code Lottery. Let's all move to SW1A 2AA (downing Street). I bet her nibs doesn't have a problem getting hold of them, with or without a prescription.

kev-w said:

Regarding the CCG uptake-

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My local CCG (Chiltern) issued the following statement on April 12, 2018

"The Executive Committee for the Buckinghamshire Clinical Commissioning Groups approved the TVPC recommendation on the use of Flash Glucose Monitoring on 22 March. This now has to go through a process of implementation. There will be no prescribing by GPs in primary care until a patient has been assessed within their regular review appointment by their diabetes specialist to ensure that the criteria is met and that patients have the appropriate training to use the device.


GPs will not initiate prescribing of the device. Patients who have been self-funding will still need a review by their specialist to ensure they also meet the criteria as described in the policy before the device is prescribed on the NHS.


Thank you for your interest and we will keep you updated when we know more."

I've just ordered two from Abbott so will see how that goes. I'm guessing that if other CCGs have taken as long to get their act together and if my local Boots has only just dispensed it's first sensors on prescription, there has been a sudden increase in demand which is basically what it says on the Abbott website. I'm further guessing that if they are indeed instructing pharmacies to only dispense to prescription customers it's to reduce demand at pharmacies, and increase demand through their website, which they are restricting to previous customers only.

Just when I thought I'd discovered a source to get them at cost. Flip!

Supply and demand. Profit! No other reasons. The quicker some good affordable competition comes along the better.

becca59 said:

Supply and demand. Profit! No other reasons. The quicker some good affordable competition comes along the better.

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The Abbott patent looks pretty tight at first reading. I wouldn't hold your breath while you're waiting...

patents.google.com/patent/WO2016086033A2/en

urbanracer said:

The Abbott patent looks pretty tight at first reading. I wouldn't hold your breath while you're waiting...

patents.google.com/patent/WO2016086033A2/en

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Nice find!

There's mention in it of somes papers, eg, Skyler J S, about cgm reducing the economic burden of diabetes treatment by reducing complications. Might be worth having a browse through those and chucking them at ccgs as a lot of them are bilking at the upfront cost of it and not seeing the future savings.

It's also a gift for any scrabble fans out there - how many points for "zwitterionic moiety" !?!

By the way, would pharmacists like Boots take private prescriptions to supply?

My GP writes out private prescriptions for me at no charge and with no hassle!

I've very lucky to live in an area where Freestyle Libre is available on prescription. It has been interesting getting it. The first chemist I went to, which is the one I usually use, told me he had to set up an account with Abbotts, but that loads of other chemists were all trying to do it at the same time, and there was a massive backlog, and he hadn't heard anything.

However he arranged to get my prescription fulfilled by getting a chemist friend down the road, who had an account, to supply them, this was not very good, but I got them. However, I got a bit annoyed, because someone who works there wouldn't go and get it for me, even though they the chemist himself had promised they'd get me one by a particular day. So I had to be a bit more persistent in persuading her to go and get it than I really wanted to be. I don't need that hassle.

So, I went to Boots, and interrogated them on their ability to supply the sensors. They told me that they now had an agreement with a supplier, not Abbots, who is supplying all Boots branches, and they now get them that way.

I think they have switched from stores having individual accounts with Abbots, to getting them from one supplier, which presumably makes the supply for NHS patients smoother, but probably makes it harder to supply those wanting to buy it themselves.

I'm pretty sure the priority is supplying NHS prescriptions, just because the idea of a prescription is that the chemist supplies it asap.

So I think the Boots decision on supplier may be why they aren't selling them anymore. Hopefully this situation will change. There seems to be a bit of harassment of Boots on twitter over this, so might be fun to take part, as it's a public forum, and therefore more embarrassing.

cool_blonde212003 said:

Has anyone else had problems? I’m going away tomorrow evening and my sensor runs out on Saturday . I’ll not be able to order one in time. Where do others buy theirs from and how much do you pay?

Thanks

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Abbot have had huge demand for these, they put out a communication that they would only supply to established customers a few months ago, so if you haven't been getting them from Abbot direct, you may have difficulty getting them.

My guess is that they were unprepared for the huge demand after putting them on sale in the US.

cool_blonde212003 said:

I asked at the time I was told they couldn’t sell them to me anymore and she said yes. My GP won’t write a private prescription for free so it just jacks the cost up it’s already too much to pay but what can people who’s CCGs aren’t funding FS libre do?

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If you know which CCG has made the decision I think there is a complaint procedure, I just googled and found a complaints page for Fareham and Gosport CCG, that was just random, they came top in the search, but I assume others will have a similar complaint process.

My feeling is that writing to your MP might be a good option. Whichever direction you chose, you could explain how useful it has been to you, in reducing hypogylcemic and hyperglycemic events, and your average blood glucose, or whatever it's done. If you google your ccg and freestyle libre you should find a document outlining their decision, most of the reasoning given is pretty naff, of the ones I've seen. So it would be worth asking why there has been no consideration of the long term benefits that better control brings, in the decision making process, as there almost certainly hasn't. I think that might be legitmate ground for complaint.

It might also be quite interesting, if you are using MDI to point out that this is lower cost treatment than a pump, but that pumps are usually given to people with poor control, and if people on MDI can improve their control then they are less likely to need pumps, so why has this cost saving not been considered?

These are just ideas, if you can think of any other things they should have considered then obviously include them.

Then explain you can no longer buy them at boots, and that getting them from Abbotts is too expensive, and impossible anyway, and ask them to contact the CCG to find out when the decision will be reviewed.

I used to work for an MP, so this is based on my experience, of one, who was very good with casework, but they're all different and they all respond in different ways. I wrote a couple of letters to my own, who was completely and utterly useless, she lost her seat.

If your MP is useless then don't waste your time, just write a letter of complaint to the CCG, maybe copy it to NHS England, or something.

It's just pressure, they will have to give in in the end, because it's an absurd situation that some areas are offering it, and some aren't when the benefits are so obvious, but the decision making seems to have been so poor, in the ones I've read, it's really worth challenging them.

cool_blonde212003 said:

Thank you for your suggestions I wrote to my CCG a while ago it was a standard template from dibetes UK campaigns that I added to. The response was bland I will have to dig it out.

The consultant is looking at an individual funding request for CGM with alarm feature as I have lost hypo awareness and the libre provided evidence that on many occasions I go low in the night and sleep through it. The medical team told me I had dawn phenomenon because my BG would go high in the morning and keep going high - I now think this was my liver kicking in as a response to nocturnal hypos not dawn phenomenon. Without the libre I would never seen what was really happening!

My local MP is Nick Hurd I don’t rate him on NHS issues i’ve written to him in the past on NHS issues.

I have a hospital appointment this week and I will see how it goes re the CGM and if they know anymore about the FS situation.

Depending on what happens I will decide what to do next and may use some of the ideas you’ve suggested

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Hope you get what you need out of the appointment with the consultant. I've found it really useful for seeing what is actually going on, the extra information is just so useful, we can make more informed decisions. Good luck with it.