As a headline, this seems like a harsh statement to make. As an observation of the organisation and effectiveness of England’s healthcare model, perhaps less so.
What could I possibly be talking about? As many in the Diabetes community will be aware of, in the past four years we’ve seen Fiasp, the Libre, Lyumjev and Libre2 come to market. And yet, access to these life changing technologies is variable and in some cases non-existent.
Let’s start with Fiasp. This is a fast acting insulin. It costs the same as its predecessor, Novorapid. It acts more quickly, so should achieve better post-prandial results than standard Novorapid. And yet, in some parts of the country, you can’t get it. And in other parts of the country, you can only have it if you’re pregnant. Whilst in other areas, it doesn’t matter whether you’re pregnant, male or 12, it’s available. Let’s remember that this is the same insulin that’s now been readily available for around 4 years. One that I first used in March 2017, and it’s still not available in some formularies across the UK. Don’t believe me?
This is the extract for South East London:
Fiasp. Only to be used where first line fast acting isn’t “good enough”. Rather than “worth prescribing if you have patients who give shots with meals (like most)”.
Compared to Derbyshire:
Who have Fiasp listed as an option for adults. And not only Fiasp, but also Lyumjev. And in neither case is the insulin restricted.
FInally, let’s take a look at the North West London formulary:
Fiasp is restricted. It’s not clear what restricted means, but from speaking to people in the know, it basically means that it’s really hard to get it on prescription.
Let’s take a step back for a moment and consider this set of evidence. We have three difference Area Prescribing Committees applying different rules to the same insulin that costs the same price as its predecessor and in many people produces better outcomes. Why does each committee feel they have to apply different rules to making it available in their area? And let’s not even consider that Lyumjev entry in the Derbyshire formulary, which demonstrates they are willing to add a new insulin that potentially provides further improvements within six months of it becoming available, while the London groups haven’t touched it yet.
This highlights yet again what we saw in the roll out of Libre across the UK. Each CCG chooses to do whatever it feels like when it comes to making medicines available, in spite of the fact that in doing so they are potentially acting in a way that reduces the availability of more effective medications that cost no more money. And once again, we can highlight that the “London Procurement Partnership” and “London Diabetes Clinical Network” are neither effective, nor have any point. They simply exist as jobs for NHS administrators that have no impact and add cost. Otherwise these examples of variation simply wouldn’t be happening.
And what of the Libre2?
Well the statement recently was that it should be uniformly available from January 2021. Something that seems fair enough and absolutely should be the case:
And yet the grapevine rolls into operation and we hear that SELondon has postponed its January approval processes for all medications for a few weeks, due to the pandemic, and is therefore unlikely to meet the January 2021 date, while Derbyshire have said that they’re not expecting it to be available until the end of February. Let’s be clear that unlike North West London, SE London is generally very receptive to new T1 treatments, but times are currently tough.
So much for national availability and coordination.
And in the meantime, we roll out a COVID vaccine nationally to all those who need it, without touching a CCG or APC. Which just goes to show that this farce we call local commissioning is an irrelevance when an efficient outcome is required.
So while we are left to live with a massively distributed, bureaucratically overweight system designed to make it difficult to access effective new drugs and treatments, the reality is that it isn’t necessary nor desirable, especially when there’s a pandemic going on.
Can you imagine the outcry if access to a COVID vaccine had been left to the CCG level for approval, and in some areas, it was restricted to only pregnant women?
Perhaps it’s time for the NHS in England to take back control so that we can make drugs and treatments available anywhere in England once they are considered clinically safe, rather than the postcode lottery that’s available right now.
Approved once, available everywhere. That would be the sensible approach.
Thank you, you have summed this up so well.
It really isn’t fair that it depends on where you live as to the level of care and access to treatment you have.
I was self-funding the Libre until earlier this year when I had a change in circumstances and now can’t afford it. I live in Essex and have had type 1 for 26 years. Yet my brother, who is a newly diagnosed type 1 and lives in South Wales, was put straight on the Libre (on prescription) and hasn’t done DAFNE (one of the requirements I’m told).
I’ve lost 2 toes and am suffering with retinopathy, yet the Libre helps me to maintain better control but I was refused this on prescription and recently, my control has gone awry again.
It really isn’t fair! Surely the CCGs can see that better control means less complications and consequently less of a drain on sparse NHS resources.
I give up!!
Agree totally with your comments. I still dont understand why the Libre 2 has been released if Libre 3 is apparently arriving in late 2021 at no extra costs to the NHS.
Great article covering a very real problem. I share your frustrations on this as I live next door to Derbyshire and cannot get Lyumjev. It’s maddening to know that a life changing medication is so close yet inaccessible.
This is a really great summary, it’s frustrating. Lyumjev is still sitting in a “Not yet reviewed for use in Leeds” status despite being available for use in other parts of the country for months. When you have access to Rapid insulins that only have an onset of around 2h, coupled with Fiasp resistance (To the accelerant niacinamide) that inhibits the fast onset while knowing there is another option just around the corner.
Well, the wait is not only excruciating it’s actually damaging our health and management in the meantime.
I am T1D for almost 38 years, since 12. I am using Fiasp with a pump for 2,5 years, previously had Novorapid with a pump also for 11 years, before MDI and the control of the neurological and skin problems that I face now thankfully is achieved with supplements and sometimes with medications.
I’ve always had very unstable BGs when hormones were bouncing along with the stress of the work.
Now, I think I am more relaxed and trying to catch up with my work, which I had to quit back on the mid of 2018.
I’d like to state in the conversation about Fiasp and other very fast acting insulins that are life-savers, according to my opinion, although I am not a doctor or a chemical engineer.
Especially for working people who have to eat out without having their scale in hand to weigh their food, the estimation of the carbs is rough enough to lead to mistakes that have to be corrected as soon as possible, so that the body doesn’t stay for too many hours with high BGs.
After all, it’s so generous that many companies in UK offer free breakfast to their employers and it would be so disappointing for them not being able to eat there with their colleagues.
But, even for non working or older people that don’t eat outside, they would have a great tool to control their BGs and keep the postprandial spikes below the natural high BG threshold (e.g. 170 or 180mg/dl) when they can’t measure their carb intake with precision for reasons like the rush of a hypo or the complexity of cards in their meal like a dish with cooked rice and meat mixed or fried chicken or cod or if you like to eat fruits which are such a healthy food, but always have the uncertainty of their carbs percentage depending on how much ripe they are.
In conclusion, I would say that Fiasp is a wise thing to do.
A brilliant summary of the problem. I live in Birmingham so can’t get fiasp unless I get pregnant (currently a 46 year old male!) My consultant wanted me to try it more than 2 years ago.
It’s really frustrating. Worse than that it’s just plain wrong!
Such a well written post clearly highlighting the hypocracies of the system. All rules go out the window during a pandemic which naturally makes you question their legitimacy in the first place. I too have the frustration of only certain devices being available on formularies rather than granting patients the equivalent in funding so they can choose. E.g. CGMs v Flash devices thereby allowing patients to choose to top up the funding to get the device of their choosing not what some arbitrary CCG committee has decided we can get. Additional note: I currently 100% self fund my CGM because it was such a game changer for my T1D management.