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!
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 Change.org 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.