2 out of 10 Type 1's Meet Criteria for Flash Glucose Monitors

[Mbaker]

Following the appalling death by DKA, of the gentleman in the States who could not afford insulin, which had gone from $1000.00 to $1300.00, it is right to highlight the unbelievable situation happening right now in the 5th richest economy in the world.

Type 1's are in my view treated bizarrely in this great country. I feel ordinary citizens would cringe if they understood the unacceptable scenarios. I heard first hand at the APPG on Diabetes what Type 1's have to go through....I thought I had a bit of understanding. How about up to 30 blood tests a day, facing the disappointment of not getting a Libre to better manage their condition (only 20% are said to successfully meet the criteria - are you ....
joking, this should be 100% of those who would like a unit (or similar, with minimal hoops to jump through). I think if many Type 2's were supported properly, eye issues, amputations and other complications could be avoided - just one way of releasing some money to pay for Libres or equivalents. I heard from several Type 1's that if you are somewhat managed, say a HbA1c of 7.5 % (can't remember the exact figures) then there was little chance of getting a Libre, with the most direct way being an imminent pregnancy - something is very rotten here. CGM's are another matter; apparently they were invented in the UK, so can someone explain why Germany has a higher Type 1 % that have them.

Anyway here's the link to the meeting summary. I asked the "Abbott man if they would consider making the Libre a calibration unit for those who get low readings, and an option for either sticky adhesion or wider adhesive:

https://mailchi.mp/1cc65fcebfe7/report-on-research-into-type-1-diabetes?e=f88397a47f

 

[kitedoc]

I contend that In any country it is offensive for Governments to discriminate against those on insulin, whether LADA, TID or those with T2D and low C-peptide.
E.g. In USA insulin costs, in Australia and no doubt other countries the cost of Libre devices and other cgms, and strictures on provision of pumps in many places.
The gutlessness of Governments all over is appaling and their vision seemingly focussed to the next election cycle only. Would changes in guidelines such as NICE really make any difference?
If say, cost savings from programs such the LOW carb for T2Ds in UK were ploughed back into more cgms, pumps then yes, the futre cost savings might then increase, but politicians tend to give with one hand and take with the other.
Such savings might be diverted to build the next air craft carrier, railway or used for some daft, unproven program in an important electoral area. And promises by one Government can be cancelled by the next in power.
Until we as voters in our respective countries can nail down agreements, oust the influences of Big Food, Big Religion, Big Pharma, Big Medical Devices and have proper open research mandated for all, including from drug compnies, and in UK, from the Oxford uni based research team for statin trials , in particular and no doubt similar teams in other countrues, we face extinction in the long run.
Small victories are important and as others have argued elsewhere home -grown insulin, device and other necessities manufactured with modest profit margins maybe the answer to the trainwteck which is globalsation.
Rant over !¡

 

[becca59]

What is interesting @Mbaker from the last months take up results for Libre that were posted on Partha Kars Twitter account, there is a north south divide on this. Better to live in the south east than the north east. And certainly not Bradford or Wakefield. Early days for the new rules that came in in April. But it strikes me that they are finding excuses to drag their heels. Long waiting lists for training courses being one. Have they not heard of online. Besides training courses would just cost more money.

 

[Deleted Account]

Long waiting lists for training courses being one. Have they not heard of online. Besides training courses would just cost more money.

My local CCG provide a reading list and links to existing online Libre training and recent DAFNE training is mandatory. They do not provide specific Libre face to face training. So, some CCGs have removed training as the limiting factor.
I believe there are two factors
- cost
- value to the patient
The cost of the Libre should be easy to justify for those of us who test regularly. However, I do not believe the forum membership is a good representation of the population of people with type 1 diabetes. I have no proof of this but I believe a large number of people do not test often and, if they did, would not know what to do with the numbers that see. Some of this can be rectified with training but that is expensive face to face training.

 

[Mbaker]

I contend that In any country it is offensive for Governments to discriminate against those on insulin, whether LADA, TID or those with T2D and low C-peptide.
E.g. In USA insulin costs, in Australia and no doubt other countries the cost of Libre devices and other cgms, and strictures on provision of pumps in many places.
The gutlessness of Governments all over is appaling and their vision seemingly focussed to the next election cycle only. Would changes in guidelines such as NICE really make any difference?
If say, cost savings from programs such the LOW carb for T2Ds in UK were ploughed back into more cgms, pumps then yes, the futre cost savings might then increase, but politicians tend to give with one hand and take with the other.
Such savings might be diverted to build the next air craft carrier, railway or used for some daft, unproven program in an important electoral area. And promises by one Government can be cancelled by the next in power.
Until we as voters in our respective countries can nail down agreements, oust the influences of Big Food, Big Religion, Big Pharma, Big Medical Devices and have proper open research mandated for all, including from drug compnies, and in UK, from the Oxford uni based research team for statin trials , in particular and no doubt similar teams in other countrues, we face extinction in the long run.
Small victories are important and as others have argued elsewhere home -grown insulin, device and other necessities manufactured with modest profit margins maybe the answer to the trainwteck which is globalsation.
Rant over !¡

What struck me at the meeting with the many anecdotes, was the potential improvements to life quality if just Libres were made available, which I see as a step up to meters and strips. I have heard the Governement line, which makes it seem that there is wide availability, what a sham. If there is an organised protest I will be there. I felt embarrassed in the meeting, as I had previously complained about having strips removed once I had stopped Metformin. Non-insulin dependent diabetics and the general public really need to understand just a day in the life of managing the testing regimes, highs and lows, the releasing of the meeting report reminded me how I felt at the time.

 

[Fairygodmother]

Has anyone here been on a libre training course? What happens? Did it help. It wasn’t even mentioned when the lovely Consultant enabled libre on prescription. He did, however, suggest that some CCGs were mean; it seems to depend on the people who are taking the Group’s decisions.
There may also be differences in available funding in different regions.

 

[MeiChanski]

I think some CCGs are still suffering even though the guidelines apply to everyone. Funding is one thing and training and education is another. There are some diabetics who think in a similar way to a pump - “push a button and I don’t have to do anything else”/ “scan my libre so I don’t have to finger prick”. So I understand education must be provided to libres, otherwise it’ll be scan and go.

 

[Copernicus]

Lets be honest about this. There is only one reason why CCG's will not supply the Libre and that is perceived cost. They know and we know that Diabetics who use the Libre are far better controlled and cost the NHS far less in ongoing treatment. Because of the seemingly high cost of the system, £70 per 4 weeks, it is seen as too expensive.

 

[MeiChanski]

Lets be honest about this. There is only one reason why CCG's will not supply the Libre and that is perceived cost. They know and we know that Diabetics who use the Libre are far better controlled and cost the NHS far less in ongoing treatment. Because of the seemingly high cost of the system, £70 per 4 weeks, it is seen as too expensive.

Arguably there are some diabetics who have the full set - CGM, libre and pump but their control hasn't changed or improve but yet continue their route to self destruction.
If you read Partha Kar's table of London CCGs, it's not just the perceived cost of libres, they don't have enough funding. I can speak for Greenwich, Lewisham and Sidcup and I have not heard anyone has been able to get a libre there. It's 50-50 I'd say, some will improve and some will be not do anything about their numbers, trends and data, mostly "I don't have to finger prick anymore".

 

[slip]

Lets be honest about this. There is only one reason why CCG's will not supply the Libre and that is perceived cost. They know and we know that Diabetics who use the Libre are far better controlled and cost the NHS far less in ongoing treatment. Because of the seemingly high cost of the system, £70 per 4 weeks, it is seen as too expensive.

What gets me is that each CCG has had a top slice taken from their budget to supply 20% of their T1's with libres yet they are holding back in prescribing it for what ever reason.

 

[AndyRob]

Hi all,

I’m not a regular poster here but often visit the site looking for inspiration, and usually get some, so many thanks!

It seems I may have been one of the lucky few as today I attended an NHS Freestyle Libre training course and received my first sensor and a reader. I understand I have an initial six months support during which I need to demonstrate a benefit for it to continue.The training course was informative and helpful, though I suspect most people would pick it up quite quickly on their own. It’s very early days but so far I’m quite optimistic about the device. There’s some variation when reading on my old machine, but it’s not had chance to settle down yet. I know some are quite cynical about the tech....

In terms of meeting the criterion, as was initially turned down by my GP as I appeared to managing the condition well already (last HBa1c was 39); to be honest it felt as though I was being punished for putting the effort in. A subsequent chat with my consultant and his support seemed to change the outcome. Interestedly the consultant seemed surprised I wasn’t already using it, presumably due to my constantly low results.

My consultant did seem very positive about the benefits Libre can bring. Perhaps it’s just a case of demonstrating commitment and the positive message reaching the clinician fraternity? I suspect and hope things are changing for the better....and it’s not like me to be optimistic/positive

All the best,

Andy

 

[Marie 2]

So dying because you couldn't afford your insulin in the US, is kind of a misnomer ? Because yes our cost of the "nicer" insulins has skyrocketed to a way out of control price and a lot of people are starting to get them from Canada which is a lot cheaper.

But anywhere in the US you can get humilin at Walmart for $25 a vial, you can get Novolin at Costco for $35 a bottle. Both of these without a prescription I think in almost every state, if not every state. Plus a lot of the times you can get a free bottle or more at your doctors office if needed of various brands. The reps drop off "samples" on a constant basis, especially to all endos. They hand them out if you just ask.

And if you have insurance, which 70% of Americans have insurance through their employer, you get what you want with a copay.
If you are elderly and worked or a spouse worked or disabled you qualify for federal medical.

But at $25 a bottle there is no reason to die in the US from not having insulin.

 

[Robinredbreast]

Hi all,

I’m not a regular poster here but often visit the site looking for inspiration, and usually get some, so many thanks!

It seems I may have been one of the lucky few as today I attended an NHS Freestyle Libre training course and received my first sensor and a reader. I understand I have an initial six months support during which I need to demonstrate a benefit for it to continue.The training course was informative and helpful, though I suspect most people would pick it up quite quickly on their own. It’s very early days but so far I’m quite optimistic about the device. There’s some variation when reading on my old machine, but it’s not had chance to settle down yet. I know some are quite cynical about the tech....

In terms of meeting the criterion, as was initially turned down by my GP as I appeared to managing the condition well already (last HBa1c was 39); to be honest it felt as though I was being punished for putting the effort in. A subsequent chat with my consultant and his support seemed to change the outcome. Interestedly the consultant seemed surprised I wasn’t already using it, presumably due to my constantly low results.

My consultant did seem very positive about the benefits Libre can bring. Perhaps it’s just a case of demonstrating commitment and the positive message reaching the clinician fraternity? I suspect and hope things are changing for the better....and it’s not like me to be optimistic/positive

Hi, I am going to my Libre training hospital appointment on Thursday afternoon and Icvan't wit to get my very own Libre. I had a two week trial and I loved it, but I had to push to get it. I'm so pleased for you that you finally got your Libre
All the best,

Andy

 

[Robinredbreast]

Yes you can buy OTC Insulin, but it appears to be the older type :

In early February 2019, amid continued public outcry over the soaring cost of life-saving pharmaceuticals, readers shared a screen-captured image on social media of a local news station’s reporting on the story of a woman who said she bought inexpensive insulin without a prescription at Walmart:



Readers asked us whether this was true. It is true, although you should note Walmart sells human insulin, an older version of the glucose-moderating hormone, whereas most insulin-dependent diabetics are currently prescribed insulin analogs that have evolved to help prevent dangerous swings in blood-glucose levels.

The screenshot above was taken from a 4 February 2019 news broadcast from Dallas–Fort Worth television station KDFW:



We confirmed with Walmart that the retail chain does indeed sell human insulin without a prescription (except in Indiana). That product is Novo Nordisk-manufactured Novolin, which Walmart has branded as ReliOn and sells for $24.88 per vial. Walmart spokeswoman Marilee McInnis confirmed to us that the company has “maintained, through negotiation, the same retail to patients since 2011.” To say that the insulin is sold “over-the-counter” isn’t quite accurate, however, as customers must ask a pharmacist for it.

Although this revelation might be important, life-saving information for diabetics, an important caveat is that human insulin behaves differently than the newer analog insulin currently retailing for more than $300 a vial.

Dr. Todd Hobbs, chief medical officer for Novo Nordisk, wrote that the different types of insulin have the same effect of lowering blood-glucose levels, but, “Training is required whenever someone is prescribed insulin, whether that be human insulin or the newer analog insulin products. Differences in the timing of all types of insulin must be considered for patients to effectively use them … The difference in the types of insulin is related to how slowly or rapidly they are absorbed once injected. Scientific advances over the years have made improvements on the speed and length of time this absorption occurs.”

Diabetes Forecast, a health-oriented magazine associated with the American Diabetics Association, explained the history of the two types of insulin and the difference in health benefits this way:

In the 1970s, researchers discovered how to program bacteria in the lab to manufacture human insulin, and in 1982, regular human insulin became the first “recombinant DNA” drug product. “It’s a very pure, clean product, and it’s exactly what we as humans make,” [Virginia Commonwealth University School of Pharmacy associate professor and a spokesman for the American Association of Diabetes Educators Evan] Sisson says. Human insulin is now available as short-acting “regular” (or “R”) insulin, which is used at mealtimes, and intermediate-acting NPH (or “N”) insulin, which is used as a basal insulin …

While the development of human insulin was a major advancement, it wasn’t perfect. Regular insulin didn’t hit the bloodstream quick enough to cover the rapid absorption of carbohydrates after meals, and it stuck around too long after meals, causing hypoglycemia [low blood glucose, which can lead to unconsciousness and death if untreated]. In 1996, Eli Lilly introduced the first rapid-acting insulin analog to the market: insulin lispro (Humalog). Insulin aspart (Novo Nordisk’s Novolog) and insulin glulisine (Sanofi’s Apidra) quickly followed. With rapid-acting insulin analogs, onset occurs 10 to 20 minutes after injection, instead of the 30 to 60 minutes it takes for regular human insulin to take effect. This allows people to inject their insulin right before a meal, rather than having to dose 30 minutes or more before eating …

Deliver a dose of NPH [human] insulin, and it’ll reach its peak about six to eight hours later. This means your insulin may peak while you’re sleeping, posing a serious danger if you don’t wake up to treat. Long-acting analogs, on the other hand, don’t peak, resulting in more-stable blood glucose levels and fewer unexpected highs or lows. In fact, one study showed that long-acting analog insulin glargine reduced overnight bouts of hypoglycemia by up to 48 percent compared with NPH. In another study, detemir reduced nighttime hypoglycemia by 34 percent. This is especially beneficial for people with type 1, who need to be much more precise about matching insulin dosages with their insulin needs to avoid nighttime lows, says Sisson.

Note, there are two types of diabetes. Type 1 diabetics’ bodies cannot manufacture insulin, the hormone responsible for glucose absorption. Type 2 diabetics’ bodies, on the other hand, become resistant to insulin. In most cases, Type 1 diabetes starts in childhood, whereas Type 2 is sometimes referred to as “adult-onset” diabetes.

Writing for Insulin Nation, Nicki Nichols explained why the older form of human insulin is difficult to control in children:

When my child was first diagnosed, she was on NPH. It was incredibly difficult to limit a growing child’s diet to such a strict schedule. Here’s what it looked like:

8 a.m.- 45-carb meal
10:30 a.m. – 15-carb snack
12 p.m. – 45-carb meal
2 p.m. – 15-carb snack
5 p.m. – 45-carb meal
7:30 p.m. – 15-20 carb snack before bed to keep blood sugar up overnight.

I cannot tell you how many times my child refused to eat the 45 carbs in her dinner. There is something wrong when you are fussing at your 5-year-old to stop eating her green beans and to eat her bread, or mashed potatoes, or pasta.

The screen shot from the KDFW report no doubt went viral as a result of an ongoing controversy over the cost of analog insulin, which as of 7 February 2019 soared to a retail price of more than $300 per vial. Americans have been awash in medical horror stories such the death of Jesse Lutgen, a 32-year-old Type 1 diabetic who lost his job at a distribution center in Dubuque, Iowa, and with it, his health insurance. He was found dead in his home in February 2018, having run out of insulin. His last vials of the medication were given to him by a friend.

Snopes

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[Marie 2]

Don't get me wrong we have an issue with the cost of a lot of the insulin brands in the US.
I have seen Lantus go from $75 a bottle to over $300 now. (that would be without insurance)
But people used this insulin for years, it used to be the only insulin available. I know several people that grew up on it. Sure it's not as easy, but completely workable. Plus every state has a medicaid program, and in most states they cover everyone low income. In several areas they also have free clinics you can pick up insulin, the nicer ones, although they are all only given so many to hand out. The few cases they have managed to find have made headlines. I have a tendency to think there are other issues involved in these cases. But my point is there is no reason to die from not having insulin in the US. Those are purely stories for headlines.

 

[NicoleC1971]

Has anyone here been on a libre training course? What happens? Did it help. It wasn’t even mentioned when the lovely Consultant enabled libre on prescription. He did, however, suggest that some CCGs were mean; it seems to depend on the people who are taking the Group’s decisions.
There may also be differences in available funding in different regions.

I have a libre and my CCG contracted out my mandatory DAFNE/FSL training to a neighbouring CCG which delivered both in a shortened day. The nurse educator was very well aware that we were there to jump through a hoop and as usual the audience consisted of a variety of people (old timers who are clued up on the main issues, newbies needing timely help and old timers who had clearly did need more help in changing what they were doing). For me I left with my fsl and got the chance to argue with a dietician (the low fat dogma was rolled out yet again) and ask a question of a consultant. It was useful to get all the hoops jumped through efficiently.
From what I've heard the courses run by the libre reps may be less useful or at least better delivered online.
In my area (Surrey) things have gone smoothly though I anecdotally I hear of glitches with the admin as prescribers catch up with getting those entilted through the hoops (1 person deprescribed because they hadn't done this and another who's consultant hadn't ticked the right box so threatened with de prescription etc.).
The rationing of allocation to 20% of type 1s may be based on anticipated demand for the devices based on the fact that unlike many on this forum, some diabetics do not test frequently or are disitnerested in new technology or are incapable of making the requisite adjustments to their regime. It makes sense IMO to limit the roll out of FSL to those who can truly benefit from the device and I appreciate that not all CCGs have got their act together to achieve this.
Consultants/DSNs also need to be able to cope with new ways of managing type 1s now that all of this data is available e.g. looking at Time In Range rather than just HBA1c. I imagine that extra data might necessitate longer consultations and in my area there's a shortage of nurses and consultant time. It is not as simple as prescirbe it for everyone. It does need some time time to bed in.