Yesterday evening I hosted the weekly webchat on Twitter taking over @GbdocTChost. The topic of discussion was "Libre - where we're at". It was a frantic and fascinating hour of discussion involving members of the #gbdoc. As host, I had little chance to voice my answers to the questions I raised, so thought it might be good to share some of my thoughts. Of course they are just opinions and discussing them helps me to modify my thinking and learn. I had seven questions prepared and miraculously managed to fit them into the time allocated (Tweetdeck scheduling of tweets was very handy!).
Q1. What is your favourite piece of diabetes tech and how did you find out about it?
I love Libre as you might have guessed, but MiaoMiao takes it to another level. I now understand those that are passionate about the Dexcom. Having those permanent active reminders, alarms and prompts changed everything about how I manage my condition and my motivation. Libre made a difference to my HbA1C, perhaps 0.5% at best and after three years of almost constant use, I did start to lose some of my motivation (there are other benefits to Libre apart from HbA1C, which are often over-looked by CCGs). However, I'm now three months into using MM and am expecting my HbA1C to be in the low 6% area (low 40s mmol/mol).
Q2. Have you used Libre? If not, what’s stopping you or have you used something different? What are your views on the system?
Well...yes! It's expensive, but not as expensive as Dexcom. I do think it's worth it - I must do having self-funded since October 2014! For me, the biggest impact is motivation. I've never been an 8+ tests a day person, or even a 4+ a day person. I just don't want that level of intervention and I'm too lazy - I also don't see enough of prerogative to do it. However, now that the information is available on a scan, and latterly on a browser tab that's always open, then it is easy and has little impact on my day-to-day life. Libre allows me to 'forget' about my condition until I actually need to interact with it in some way.
Q3. How have technological advances changed your relationship to diabetes?
Libre was the first piece of technology that I really employed with my diabetes. Since diagnosis in 2007, I had used the same meter and the same insulins (Novorapid/Levemir). It has changed my relationship in that much of the mystery has now gone. It still comes back and tells you who's boss on occasions, but for the most part, variances are predictable and importantly controllable.
Q4. Have you contacted anyone about access to tech or meds related to your condition? What did they say and do you feel your questions were answered/taken seriously?
Personally, yes, I asked my doctor about some of the novel insulins and about getting an insulin pump. He said he couldn't see any point with the insulins and that my HbA1C was too good for a pump - end of conversation. He wasn't very interested in my Libre traces, but to be fair, as long as all the boxes that he needs to complete are filled, I'm fine with that.
I have also, of course, contacted people in many areas about access to Libre. Some take the questions seriously, many do not. Many think that they can fob you off with vague and sometimes evasive answers. They assume you are being grumpy with them. This is one outcome, but if they answer questions asked in a logical and clear way with similarly logical and clear answers, then we'll all get along fine. I want to hold CCGs accountable, but in the end, if they make a decision I don't agree with, but have justified it in a sensible way, then I can't really have an argument. However, I am yet to find a CCG meet this relatively simple paradigm.
Q5. Who is to 'blame' for the current variance of access to tech across the UK? What would be your solution for this?
In my view, there are many different reasons for the variance and 'blame' is perhaps too strong. As I mentioned in a previous month's blog, a CCG Meds Manager explained that Libre was an unprecedented situation. I understand - it's rare that patients have access to something for a substantial period prior to prescribing. It is also unusual for NICE to provide vague guidance. It is also unusual for a pharma company to be able to market a device to patients that ultimately is available on prescription.
I think structurally the CCGs way of deciding funding doesn't work. Whether this is a situation peculiar to Libre is unclear. I suspect it might be. There should be a central NHS diabetes advisory group. If they decide that Libre should be funded with a criteria, then that should apply throughout the whole NHS. Perhaps there should be a central diabetes pot of money? There is a lack of control across the regions through all aspects of diabetes care. There is little to no standardisation.
As an example, I wonder - if there was a restricted number of test strip type available on the NHS, could that in turn result in some of the larger brands reducing their price? There are expensive tests strips and cheaper ones. Why's that? Surely they would reduce the price if the NHS made it a competitive tender for supply. The manufacturer would in turn would get a volume benefit and the NHS would save money. Why is that so hard?
An question that bugs me is why there's a lack of evidence for the Libre. Is this a usual situation when a device or medicine gets to market? How come there isn't more scientific evidence being provided by Abbott. The clinical data has been scarce and I can understand why CCGs think there's not enough. This technology has been on the market for four years - plenty of time to fund proper extensive studies. If these had been conducted, would be in the same situation? I doubt it - I wonder what Abbott's take on this is?
Q6. What criteria (if any) do you think should be applied to Libre prescribing?
It is clear that there needs to be criteria. An ideal world would be one where prescribing would be based on clinical need. The problem with that is that it can easily be challenged and in the end many would prescribe to those that shouted loudest. Criteria can work, but they need to be appropriate and reviewed regularly. They need to be based on outcomes, not just the cost of supply. Current criteria, like the RMOC criteria don't take outcomes into account. The reason is because CCGs can't cope with that either. If the CCG problem is solved the surely the funding mechanisms could be improved too.
Q7. If you wear any tech, has any ‘muggle’ (not a PWD!) asked you about it. What did you say/do?
A five year-old French child asked me what was on my arm. I explained in my GSCE French, but I'm not sure if I'd explained to a five year old English child in English that they'd have understood. Apart from that, nobody's asked...however I'm quite good at raising the subject and talking at length about the tech I use and what it does.
The tweet chat is hosted by various people who are members of the #gbdoc at 9pm UK time each Wednesday evening.
Q1. What is your favourite piece of diabetes tech and how did you find out about it?
I love Libre as you might have guessed, but MiaoMiao takes it to another level. I now understand those that are passionate about the Dexcom. Having those permanent active reminders, alarms and prompts changed everything about how I manage my condition and my motivation. Libre made a difference to my HbA1C, perhaps 0.5% at best and after three years of almost constant use, I did start to lose some of my motivation (there are other benefits to Libre apart from HbA1C, which are often over-looked by CCGs). However, I'm now three months into using MM and am expecting my HbA1C to be in the low 6% area (low 40s mmol/mol).
Q2. Have you used Libre? If not, what’s stopping you or have you used something different? What are your views on the system?
Well...yes! It's expensive, but not as expensive as Dexcom. I do think it's worth it - I must do having self-funded since October 2014! For me, the biggest impact is motivation. I've never been an 8+ tests a day person, or even a 4+ a day person. I just don't want that level of intervention and I'm too lazy - I also don't see enough of prerogative to do it. However, now that the information is available on a scan, and latterly on a browser tab that's always open, then it is easy and has little impact on my day-to-day life. Libre allows me to 'forget' about my condition until I actually need to interact with it in some way.
Q3. How have technological advances changed your relationship to diabetes?
Libre was the first piece of technology that I really employed with my diabetes. Since diagnosis in 2007, I had used the same meter and the same insulins (Novorapid/Levemir). It has changed my relationship in that much of the mystery has now gone. It still comes back and tells you who's boss on occasions, but for the most part, variances are predictable and importantly controllable.
Q4. Have you contacted anyone about access to tech or meds related to your condition? What did they say and do you feel your questions were answered/taken seriously?
Personally, yes, I asked my doctor about some of the novel insulins and about getting an insulin pump. He said he couldn't see any point with the insulins and that my HbA1C was too good for a pump - end of conversation. He wasn't very interested in my Libre traces, but to be fair, as long as all the boxes that he needs to complete are filled, I'm fine with that.
I have also, of course, contacted people in many areas about access to Libre. Some take the questions seriously, many do not. Many think that they can fob you off with vague and sometimes evasive answers. They assume you are being grumpy with them. This is one outcome, but if they answer questions asked in a logical and clear way with similarly logical and clear answers, then we'll all get along fine. I want to hold CCGs accountable, but in the end, if they make a decision I don't agree with, but have justified it in a sensible way, then I can't really have an argument. However, I am yet to find a CCG meet this relatively simple paradigm.
Q5. Who is to 'blame' for the current variance of access to tech across the UK? What would be your solution for this?
In my view, there are many different reasons for the variance and 'blame' is perhaps too strong. As I mentioned in a previous month's blog, a CCG Meds Manager explained that Libre was an unprecedented situation. I understand - it's rare that patients have access to something for a substantial period prior to prescribing. It is also unusual for NICE to provide vague guidance. It is also unusual for a pharma company to be able to market a device to patients that ultimately is available on prescription.
I think structurally the CCGs way of deciding funding doesn't work. Whether this is a situation peculiar to Libre is unclear. I suspect it might be. There should be a central NHS diabetes advisory group. If they decide that Libre should be funded with a criteria, then that should apply throughout the whole NHS. Perhaps there should be a central diabetes pot of money? There is a lack of control across the regions through all aspects of diabetes care. There is little to no standardisation.
As an example, I wonder - if there was a restricted number of test strip type available on the NHS, could that in turn result in some of the larger brands reducing their price? There are expensive tests strips and cheaper ones. Why's that? Surely they would reduce the price if the NHS made it a competitive tender for supply. The manufacturer would in turn would get a volume benefit and the NHS would save money. Why is that so hard?
An question that bugs me is why there's a lack of evidence for the Libre. Is this a usual situation when a device or medicine gets to market? How come there isn't more scientific evidence being provided by Abbott. The clinical data has been scarce and I can understand why CCGs think there's not enough. This technology has been on the market for four years - plenty of time to fund proper extensive studies. If these had been conducted, would be in the same situation? I doubt it - I wonder what Abbott's take on this is?
Q6. What criteria (if any) do you think should be applied to Libre prescribing?
It is clear that there needs to be criteria. An ideal world would be one where prescribing would be based on clinical need. The problem with that is that it can easily be challenged and in the end many would prescribe to those that shouted loudest. Criteria can work, but they need to be appropriate and reviewed regularly. They need to be based on outcomes, not just the cost of supply. Current criteria, like the RMOC criteria don't take outcomes into account. The reason is because CCGs can't cope with that either. If the CCG problem is solved the surely the funding mechanisms could be improved too.
Q7. If you wear any tech, has any ‘muggle’ (not a PWD!) asked you about it. What did you say/do?
A five year-old French child asked me what was on my arm. I explained in my GSCE French, but I'm not sure if I'd explained to a five year old English child in English that they'd have understood. Apart from that, nobody's asked...however I'm quite good at raising the subject and talking at length about the tech I use and what it does.
The tweet chat is hosted by various people who are members of the #gbdoc at 9pm UK time each Wednesday evening.
Comments