Catastrophic Insulin decisions in Australia

I’ve been spending this week in Berlin attending the ATTD 2023 conference. as part of the #dedoc˚ voices. It’s only half done so far. There’s a flood of presentations to attend, study results to absorb, and literally thousands of other people to talk to. It’s very hectic. But in the background I’ve become aware of a disaster brewing back home in Australia.

Fiasp going away

It turns out that from the 1st of April 2023 the Australian Government will be removing Fiasp insulin from the PBS subsidy scheme.

Fiasp is the only “ultra-fast” insulin currently available to Australians, so this decision seems crazy. Maybe it’s only a weird attempt at an April Fool’s joke.

Apparently we will be able to purchase Fiasp privately, but even that doesn’t fill me with confidence. For a start, most people who have been prescribed this medication will NOT be able to afford it.

  • Fiasp had been TGA-approved for several years before it was added to PBS, but it was only when the PBS listing happened that Novo imported it in quantity to support sales. Before that it was simply unavailable.
    It makes us nervous Fiasp may go away entirely.
  • It introduces a strata of inequality. Only the affluent will be able to afford the current technology. This is a slippery slope which can lead to disasters like the US “health care” situation.

We rejoiced in 2019 when Fiasp was added to PBS and as a result Novo started to sell it in Australia. Before that we only had the slower insulins like NovoRapid and Humalog. For many of us the faster insulin has allowed us a lot more flexibility in managing our diabetes, and this has translated directly to improvements in our lives.

Certainly Fiasp doesn’t work for everyone. Some people have found that they have local reactions (e.g. site inflammations) which are both uncomfortable and may be related to the fact that in some people the insulin effectiveness drops off.
I’ve written previously about how I worked to avoid that by introducing the Fiasp slowly, and then when I started only using Fiasp everything accelerated, with no “side-effects”.

Some people have not moved to Fiasp because of “inertia”, as they have something that “works at the moment”. Or because the particular pump model they’re using today tells them not to use it. But to take away their option to change technology to one of the other options and take advantage of Fiasp seems short-sighted.

Patient Reported Outcomes (PROs)

This is something that we have been hearing more and more for the past few years in the research world. Clinical Evidence is not the only key. In fact whole presentation streams at ATTD have concentrated on the importance of PROs.

A bunch of clinical trials have each concluded that the faster insulins did not produce significant differences in HbA1c or TIR for their study cohorts. And in my own experiments I’ve found some similar things. As a result I’ve heard some researchers say things like they “don’t believe the faster insulins are useful”. So a simplistic “bean-counter” assessment might say that it’s not worthwhile supporting.
But that would be wrong.

Actually, when I started using Fiasp I did notice improvements in all of HbA1c (mean BG), Time In Range, and SD/CV (BG variability).

But then the scene changed. To get that I had been doing the same amount of work I’d been having to expend for the previous few years, and that took advantage of the faster insulin.
But then I realised I no longer had to work quite so hard. My clinical results “slacked” off a bit (but still to levels I and my doctor were happy with) but my life was a lot easier.

The faster insulin has allowed my Automated Insulin Delivery system to react faster to Real Life, and take more of the workload away from me. I don’t have to be so constrained in my activities, whether it’s managing exercise or just eating a meal. Life becomes more spontaneous, food choices widen, I’m happier, etc. I even lost more weight (being able to manage exercise like cycling more spontaneously probably helped). My “Quality of Life” improved (even quantified in official surveys).

Automated Insulin Delivery is key

MDI users have been marketed to for Fiasp as having less need to pre-bolus. Being more spontaneous about eating has a big appeal. But I think there’s a hidden trap in this.

In my own work I’ve found that Fiasp indeed starts having noticeable effect earlier, and this is great.

More of the insulin gets used earlier, and this can translate to lower BG peaks after meals. But behaviours around dose calculations and timings often need to change. At the same time, the effect starts to drop off earlier than with the slower insulins. This is fine in an AID, where the pump can simply be told to add some more small doses of insulin as needed over the coming hours. But it would be a hard sell to tell a pen user that they should then give themselves a second (or third) injection a while after the meal (depending on the meal of course).

I believe the automated systems are where the faster insulins can shine, without the user needing to change their behaviour.

Unfortunately one of the commercial AID systems currently available in Australia (Tandem’s Control-IQ) does not support the use of Fiasp, which seems to mainly be because of things like the algorithm design of the current version working on the assumption that slower insulins are being used. I do note that other commercial systems such as CamAPS FX do NOT restrict your use of different insulins. Also the Open Source AID systems handle Fiasp fine.

But someone dealing with Tandem pumps could easily assume that everyone was subject to the same restriction and that Fiasp was thus not useful. Blinkers like that benefit no-one.

Is it pricing?

I would assume that Novo (the manufacturer) would only be setting the price for Fiasp to be the same as for NovoRapid (their other form of insulin aspart). That seems to be the way both Novo and Lilly have been positioning their ultra-fast insulins around the world.
So it’s hard to imagine from here what the story is behind the subsidy being removed.

Fiasp is not the only Ultra-fast insulin

Luckily there are other options in the world than Novo’s Fiasp. Particularly Lilly’s “Lyumjev”, which is the accelerated form of Humalog. However this is not yet available in Australia either.

I have found Lyumjev is a lot faster than even Fiasp (I’ve imported some batches for personal use), and I’ve been looking forward to the day that Lyumjev becomes accessible to Australians. I’m very lucky I’ve been able to afford that.

But in the meantime Fiasp has at least been a step above the slower insulins. And now that’s being taken away!

What now?

We could sit by in stunned shock and let a bean-counter somewhere decide that our lives don’t benefit from using Fiasp and have them take it away from us.

Or we can at least stand up and shout. I do know that a petition has already been started.

Please add your voice to the petition.

This will help those of us who are talking to the government, to the media, etc by showing that we’re not just voices in the wilderness.


2023-02-28: The impending deletion has been confirmed.

24 thoughts on “Catastrophic Insulin decisions in Australia”

  1. WOW!!!Great summary David on why this decision to removing Fiasp from the PBS is soo wrong. I have added my voice to the petition and hopefully with a collective voice, the bean counters will have another look at their ridiculous decision.

  2. I’ve been on Fiasp since it came on the PBS. I’m a Disability Pensioner, so I can’t afford it otherwise. I use it in a TANDEM
    PUMP Q2 (even though they advise against it. But I change the cartridge each refill now instead of refilling a used one and that makes a difference).
    My last HBA1C was the LOWEST I’VE HAD IN 10 YEARS! So I’m really Really happy with Fiasp.
    At one point I thought it might have been too fast (causing me Hypos) so I went back to Novo Rapid, but found that I just couldn’t get the same control so I returned to Fiasp.

  3. Great summary David. I’m glad you keep track of these developments. My hba1c and overall control are much better under FIASP rather than Novorapid. Do you have any more insight into why this is happening? Is it the company or the Government? The dispensed rice for Novorapid and FIASP is the same at $211. Removing FIASP is a retrograde step for me and many others. I’ve signed the change organisation petition. Is it worth contacting Diabetes Australia to up their lobbying efforts wrt FIASP?

    1. Yes it’s worth yelling to Diabetes Australia, but don’t expect them to do anything about it. I’m writing something about recent legal changes that relates to this.

  4. Marcelo Ferreira

    Maybe I’m holding a fools hope that this isn’t real, I was a little concerned about the original posts on FB and some of the so called contacts with Novo that were posted, it all seemed a little sudden.
    I still would like to see something a little more concrete from an official source.
    Let’s see come March 1 what transpires

    1. I understand your hesitation.
      I would not have written the article if I hadn’t got corroboration from many trusted sources.
      Am expecting to see a press release soon.

  5. This is going back to the dark ages! I’m lucky that I’ve just renewed my script and now have 6 vials sitting in the fridge. I will try to get another script filled before April and maybe, just maybe, that will last me until this mess is sorted. In the meantime, I will sign the petition and write to my local member.

    Thanks for the great summary, David.

    1. I have a feeling we will see a Fiasp shortage from us all trying to get the last boxes. I just can’t believe this is happening in 2023.

    1. The stuff I’ve been using was imported “at great trouble and expense to the management” (and I brought a little more back from Germany with me).
      Note that the law says that we can only import for personal use.

      But no I have not found anywhere that actively sells and ships it overseas.
      It would need the help of a friend on the ground. Also organising the cold-storage shipping is not cheap!

  6. My son has been on Fiasp for about 1.5 years and I’ve recently been thinking that I can’t imagine not having it and returning to a slower insulin. I hope the decision makers’ minds can be changed. Pulling Fiasp is a terrible idea. Thank you for sharing this.

  7. My endocrinologist put me on Fiasp last month, was using Novorapid. My BGL levels have never been so good.

    This is a poor decision by bean counters who seem to care nothing about the health of T1 diabetics.

    Hope we can get this reversed.

  8. Ive had Type1 for 46 years and Fiasp has changed my life of diabetes. My Hba1c is definately the best its ever been and i can only put it down to using Fiasp. Im very anxious about having to go back to my previous fast acting insulin as ive finally found something which works so well. Please let it stay on the PBS. $142 per NonPBS script compared to $30 now will make things even harder to pay for. DIABETES is a complicated disease which affects the whole body and your Mental Health too. Please save our FIASP.

    1. It could be way more than $142. Once something goes to the private schedule, pharmacies can charge whatever they like. The less a drug is used by the population, the more they charge.

  9. My hba1c never really changed, but what did was my hypo frequency. Due to gastroparesis, my stomach emptying is varied. Fiasp is far safer for me to use.

    If my meal absorbs slowly, no big deal. I just take more Fiasp. On Novorapid, it is very hard to gauge what to do when my meals absorbs slowly, especially when my stomach can suddenly kick in. If I stuff it up, I’m on the Novorapid ride for many hours.

    If my meal absorbs fast, no big deal. I only have to keep my glucose up for another hour on Fiasp. On Novorapid, I’d be knocking back fizzy drinks for the next 3 hours.

    It just works better with my pump too. I am absolutely gutted over this. I have to self fund my pump and sensors because the gov doesn’t recognise those with cystic fibrosis related diabetes, as needing any kind of help. They consistently leave us out of funding and now I get this kick in the guts. I do all of this on the DSP with all of my many other health conditions and lung transplant. What the hell am I meant to do now?

    I feel like I’m being priced out of existence and I don’t have the motivation to keep taking my medications anymore. I live in poverty and I hate my life.

  10. Antoinette Jones

    My son’s BH1c decreased from 7.1 to 6.4 once he started using Fiasp. He loves being able to go out for dinner or even eating at home, without having to predict one or two hours earlier what time he will be eating, what he is likely to eat and guessing how much insulin he should have. If this insulin eases the burden for the thousand of sufferers who have to carefully manage almost every minute of their lives, it begs the question: why is such a cruel decision being taken?

  11. Type 1 for 50yrs now , have seen quite a few insulins .
    Novorapid is okay and works well to control blood sugars , put on Fiasp early 2020 and experienced insulin that seems less invasive and offers a ” new normal ” and have been happy with Fiasp .

    Not sure what happens now ….subsidise the Fiasp private script cost somehow , but probably not .
    Maybe back to Novorapid…. ,
    Stopping Fiasp however allows a market for other insulin options and pharmaceutical companies .
    Won’t be long .

  12. Seems crazy that I’ll be forced to go back to Humalog, which is what I started on 25 years ago. Was a game-changer back in the 90’s but now? Seriously I can’t believe what a backwards step this is. They just aren’t thinking long term!

  13. I have used this insulin for the last 5 years and can’t imagine being without it. Obviously, whoever is making this decision has no idea what medicine like this means to a diabetic. Let’s hope it doesn’t happen.

  14. I use Fiasp, (Diabetes Type 3c) and have done so for about 2 years, having previously used Novo Rapid. Every aspect of the action of Fiasp is far superior, and has made being a diabetic far easier. I had vowed never to return to “Rapid” insulin. Luckily I have managed to obtain a reasonable stock, but it won’t last forever.
    It is difficult to understand the government’s action, as it potentially will have a negative effect on the health of many people.
    But this government loves to slug people, as they demonstrated when they subsidised CGMs for Type 1, but excluded those with Type 3c, which is very similar!

  15. Type one since the early 70s in Melbourne Australia. I have a hba1c of a normal person and I use fiasp for corrections. It truly makes control so much easier. Stopping eating food we should not eat was the greatest thing I ever did. We just went made for carbs or at least so many of them. This idea of you can eat anything at all is a fallacy and needs to stop. However we still need fast acting insulin for things like cortisol when you get up or if you over correct on sugar etc. I had to dilute fiaso down to a quarter of a unit (to bring (say) bg of 5.8 back down to 4.5. but it does this FAST. I pulled some hunalig out to give it a test run as I had some lying around and it takes forever. This is insane our country doesn’t have many insulins as it is ket alone taking the only fast acting one away. Madness.

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