Freestyle Libre - New Cost-Neutral UK Government petition

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davidegertron

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Type 1
Hi Everyone

I am appealing to all diabetics to sign and share my new UK Government petition for cost-neutral use of the Freestyle sensor for Diabetics

Even though approved by the NHS, most diabetics are still left to self-fund our Freestyle Glucose sensors 100% (at a cost of £1300 a year).

Like so many others, I am a type 1 diabetic that looks after myself and I am not asking the NHS to find any extra money but simply to do the right thing and charge us only for the difference between the currently available treatments v providing the sensors.

A Petition to fully this device has already been rejected, so this petition is for the NHS to supply sensors at the cost of what the NHS pays for them, less current average treatments costs only.

We are constantly told there is no funding, but I am not asking for extra funding at this point. We should not be forced to pay 100% privately like this just so we can look after ourselves better, especially when most of us have paid into the NHS all our lives.

Please, please, please can you sign my petition and also share the following link with everyone you can to get this crazy situation reviewed.

https://petition.parliament.uk/petitions/269206

I also have a post on my Facebook page;
https://www.facebook.com/david.egerton01/posts/1020630422408
 
Hi Bruce. I understand your point I think

I would argue that the only option right now is that we have to pay for the sensors fully ourselves which seems unfair, especially as we save the NHS the cost of tabs etc.. We have a paid prescriptions service so would it be so difficult to find a way to pay a pharmacy at a lower cost. Otherwise I fear we’ll be left paying full price forever.
 
davidegertron said:
I would argue that the only option right now is that we have to pay for the sensors fully ourselves which seems unfair, especially as we save the NHS the cost of tabs etc.. We have a paid prescriptions service so would it be so difficult to find a way to pay a pharmacy at a lower cost. Otherwise I fear we’ll be left paying full price forever.
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I understand the principle, and I agree it doesn't seem impossible to get sensors to patients at what the NHS pays.

I fear it might be very hard to do so, however. I can't think of any related example.

I think it would have to be some new mechanism, wouldn't it, and that seems likely to mean it's just not going to happen? (People have been self-funding CGMs and pumps for a while and I'm not aware of any help (beyond VAT) for those.) Prescription charges don't seem quite right for this since they're a fixed charge, I think? (And anyway we're exempt.)

(My guess is that prescriptions for them will increase until just about everyone who wants them will just get them on prescription, as costs presumably decrease (presuming there's some competition) and evidence for usefulness increases.)
 
I dunno, really. £1300 a year is certainly less than my annual food bill, around the same as my council tax bill, it’s less by far than the cost of running a car, so I suppose it depends what you want to spend your money on.

In Scotland, Wales and Northern Ireland all prescriptions are free to all, because that is cost neutral. The Libre system isn’t, certainly not for everyone, so it is as difficult to get free Libre in those countries. There are many medications that cost more than £100 a month, but are prescribed because they are proven to work. The Libre system only works if you want it to, and if you are capable of using the information it gives.
 
Benny G said:
It's a slippery slope to introduce a cost for either prescriptions or upgrades, from essential finger prick tests to non essential CGM (or similar) for Type 1's.
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I was worrying from a slightly different angle. If these things were being sold by hospitals then fair enough: we could control their pricing.

But they're (usually) not: they're being sold by pharmacies. So how would price controls work there? And would we also want to control prices of (say) over the counter antihistamines (which are now not usually prescribed)? It just feels tricky to do in a way that's likely to be stable. (Especially since this is about a product from one company: might they decide that they're not going to sell in the UK, or just offer them for prescription?)

It feels like a doomed idea with a possible exception: it feels like hospital pharmacies could be asked (in strong terms) to price the things in a reasonable way. If that happened (with suitable publicity) it might encourage other pharmacies to drop their margins a bit.

I still think the likely outcome is that continuous monitoring (whether CGM or FGM (or Libre 2's FGM plus alarms)) will become usual, with time in target (of some sort) being the goal that people aim at.
 
The criteria now is to get the Libre on prescription if you are Type 1 and test 8 or more times a day, so there isn't the barrier there used to be. This change in criteria, introduced in April, is predicated on the fact that the sensors are 'cost neutral' in relation to test strip savings i.e. you're effectively changing one sort of monitoring to another (much better, on the whole) method for no extra cost.

It ought to be available on the same basis to anyone on MDI, regardless of type, and I would also say there is an argument to prescribe it for newly-diagnosed or struggling Type 2s so they can get a much better idea of how their food choices affect their levels which would hopefully lead to improvements in HbA1c and fewer (very expensive) complications 🙂
 
Thanks for your comments. I am type 1 and I do test 8+ times a day and I do have to buy my own sensors. I use the sensors because I am able to improve my readings and control. But sounds like barriers may be coming down.

I heard from somewhere that the NHS pays about £35 a sensor, but I cannot confirm that. All I know is that paying for sensors saves the cost of supplying tabs, so I just don’t understand why we have to fund this 100% ourselves at £50 a sensor. I get the challenges, but If pharmacies are the problem, then find another way, for example why not supply 6 months free and we pay for the other six months, every year

I am not sure about the relevance of comparison to food or cars as the key point remains that we replace the cost of tabs and lancets which are otherwise supplied without extra cost with a sensor that we have to purchase at full retail ourselves, thus reducing the cost for NHS, so somehow that should be reflected.

If someone needs a treatment that they could benefit from better than what they are supplied with now, confirmed by their care specialist, then why should everyone not at least be able to acquire it for the difference in cost instead of being told “this is extra cost, so you’ll need to fund that yourself’ Many people simply cannot afford the full cost.

Seems to me such an approach and better individual treatments would reduce costs for the NHS overall and improve the lives of people.

Whilst I live in hope of getting help with sensors in the future, the current all or nothing approach (if that is a fair comment) does seem to needs a review to me.
 
davidegertron said:
I heard from somewhere that the NHS pays about £35 a sensor, but I cannot confirm that.
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I'm pretty sure that's true. For a while Superdrug pharmacy were selling them for that, and it was said that was cost price. (Obviously the NHS might have negotiated a lower cost, but it suggests that figure is about right.) And for test strips that cost £15 for 50 (which is the cost of test strips for FreeStyle Libre (quite expensive, relatively, so quite likely at the high end of what CCGs pay for)), the cost for 14 days at 8 strips a day is suspiciously close to £35. I seem to remember some actual reports of the cost, too.
 
davidegertron said:
I am type 1 and I do test 8+ times a day and I do have to buy my own sensors.
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Then you qualify for sensors on prescription - have you asked about them lately? It was much more difficult before April this year, so if you haven't asked lately, then please do 🙂 What CCG area do you live in? I believe there's some sort of table knocking around that indicates prescribing rates per CCG (@everydayupsanddowns - do you know what I am referring to?)
 
I’ve been asking since early 2018 and most recently was in June 2019 when I argued the case again. I’ve been told by the consultants they are working to make them available to some people and that I would be near the top of the list. It’s now August, I have heard nothing. It’s why I felt there should, as a minimum, be a better solution that Having to pay 100% at retail ourselves. I am paying full price and National Insurance too. To be clear I don’t have an issue with paying for the NHS, we need this to work for us so another 1% would be acceptable with me.

I really appreciate your comments. I am going to get in touch with my specialists again and tell them what you have said about 8 test a day and being `type 1, so I can find out why I am not getting any help. Hopefully it’s coming.

On a final point, I still feel there should be a way for people to obtain all sorts of treatments that are beneficial to them at a same cost compared to the NHS available treatment level rather than the ‘all or nothing’ approach we have now. This might make drug companies think about the price a little more as the patient will need to compare the cost of the available NHS option with the extra cost they would pay for their preferred and more beneficial treatment, .
 
If your BG management requires you to check 8+ times a day, then you qualify under the mandatory national criteria which were launched in April.

And yes the NHS acquisition cost was negotiated down to £35 per sensor.
 
Here’s a link to the national criteria

https://www.england.nhs.uk/publicat...ts-for-funding-of-relevant-diabetes-patients/

Which is essentially Libre on prescription for:

  1. People with Type 1 diabetes OR with any form of diabetes on hemodialysis and on insulin treatment who, in either of the above, are clinically indicated as requiring intensive monitoring >8 times daily, as demonstrated on a meter download/review over the past 3 months OR with diabetes associated with cystic fibrosis on insulin treatment
  2. Pregnant women with Type 1 Diabetes -12 months in total inclusive of post-delivery period.
  3. People with Type 1 diabetes unable to routinely self-monitor blood glucose due to disability who require carers to support glucose monitoring and insulin management.
  4. People with Type 1 diabetes for whom the specialist diabetes MDT determines have occupational (e.g. working in insufficiently hygienic conditions to safely facilitate finger-prick testing) or psychosocial circumstances that warrant a 6-month trial of Libre with appropriate adjunct support.
  5. Previous self-funders of Flash Glucose Monitors with Type 1 diabetes where those with clinical responsibility for their diabetes care are satisfied that their clinical history suggests that they would have satisfied one or more of these criteria prior to them commencing use of Flash Glucose Monitoring had these criteria been in place prior to April 2019 AND has shown improvement in HbA1c since self-funding.
  6. For those with Type 1 diabetes and recurrent severe hypoglycemia or impaired awareness of hypoglycemia, NICE suggests that Continuous Glucose Monitoring with an alarm is the standard. Other evidence-based alternatives with NICE guidance or NICE TA support are pump therapy, psychological support, structured education, islet transplantation and whole pancreas transplantation.However, if the person with diabetes and their clinician consider that a Flash Glucose Monitoring system would be more appropriate for the individual’s specific situation, then this can be considered.
Other requirements:
  1. Education on Flash Glucose Monitoring has been provided (online or in person)
  2. Agree to scan glucose levels no less than 8 times per day and use the sensor >70% of the time.
  3. Agree to regular reviews with the local clinical team.
  4. Previous attendance, or due consideration given to future attendance, at a Type 1 diabetes structured education programme (DAFNE or equivalent if available locally)

The CCG budgets have been ‘top sliced’ with an amount roughly equivalent to supplying Libre to the 25% of the T1 population that these criteria define. They only access this sliced money for Libre - so there is no financial benefit to them to deny it. And 25% is meant to be the *minimum* level of prescribing.
 
everydayupsanddowns said:
If your BG management requires you to check 8+ times a day, then you qualify under the mandatory national criteria which were launched in April
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I haven’t tried this route yet. (I would have to get my GP to refer me to a consultant again first, I think) but I can see the conversation going
Dr. 'well why do you test 8 times a day? You don’t need to!'
Me. 'well I need to for the following reasons.,'
Dr. 'No you don’t, half of those are totally unnecessary, you’re obsessive, just test before meals and at bedtime'
 
davidegertron said:
On a final point, I still feel there should be a way for people to obtain all sorts of treatments that are beneficial to them at a same cost compared to the NHS available treatment level rather than the ‘all or nothing’ approach we have now. This might make drug companies think about the price a little more as the patient will need to compare the cost of the available NHS option with the extra cost they would pay for their preferred and more beneficial treatment, .
Click to expand...
I don't know, but my suspicion is that when the NHS negotiate a price for medications and treatments etc. it is on the understanding that these will be prescription-only items so the companies do not forfeit potential profits from individuals who self-fund. One of the things that has always annoyed the US, and the reason our health service is cheaper to run, is that the NHS has huge negotiating leverage - in the US, things are far more fragmented. I suspect that that negotiating strength would be severely diminished - and challenged - if it essentially became a State procurement body and provider for everyone regardless of clinical need (according to the criteria).

I would have agreed with this before the new criteria came in, but now the criteria is much more sensible. Your argument is with your CCG, really, you need to find out why they are not implementing the new guidelines and challenge that.
 
Robin said:
I haven’t tried this route yet. (I would have to get my GP to refer me to a consultant again first, I think) but I can see the conversation going
Dr. 'well why do you test 8 times a day? You don’t need to!'
Me. 'well I need to for the following reasons.,'
Dr. 'No you don’t, half of those are totally unnecessary, you’re obsessive, just test before meals and at bedtime'
Click to expand...
The doctor would then need to be referred to the letter sent out to all GPs (a few years ago now!) about providing all necessary strips etc. for you to test as YOU need 🙂
 
Robin said:
I haven’t tried this route yet. (I would have to get my GP to refer me to a consultant again first, I think) but I can see the conversation going
Dr. 'well why do you test 8 times a day? You don’t need to!'
Me. 'well I need to for the following reasons.,'
Dr. 'No you don’t, half of those are totally unnecessary, you’re obsessive, just test before meals and at bedtime'
Click to expand...

The NICE guidelines updated in 2015 did a substantial amount of work in this. 4x per day is the bare minimum recommended.

Then all you need is to drive somewhere (and have to drive back), then a couple of checks if you feel off, or if you want to make sure you got a meal dose right and there you are!

I would certainly have the conversation @Robin - I’m pretty sure in some areas GPs are able to prescribe without needing to refer to hospital clinic, but some CCGs are naughtily adding their own systems to the national criteria, so you’d have to see what the situation is in your area. But at the end of the day the national string-pullers are insisting that no extra barriers are put in place (Oh first you have to jump through these hoops...). There is pressure you can apply to reluctant HCPs / CCGs!
 
Yes, as Robin says, this is going to be based on such criteria. Not everyone who would benefit will get it.

Being able to check every hour or two hours is super helpful. That regularly and convenience will not happen with finger pricking. And checking more regularly and being able to see the chart of what’s happened and what is happening (going up, down, same etc) ensures users can really improve their HbAic

So we go full circle, give me the sensor cos I meet the criteria, or, if you say no, then at least supply it to me at the cost difference, don’t leave me to fund it 100% myself. So still a lottery really. That is my worry.
 
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