Ultra-fast insulin, Fiasp, set to be taken off PBS making it unaffordable for many living with diabetes and detrimental to their diabetes management

Written by Lauren Cusack, person living with type 1 diabetes, Health Promotion & Communications Manager at PDC Health Hub and T1D Collective member

If the insulin known as Fiasp is not PBS listed, the absolute majority of people with diabetes who have been prescribed this insulin will not be able to afford it. These are the same people who couldn’t have avoided a diagnosis of diabetes (there is no preventing it, and there is no cure), and the same people who are carrying around a considerable mental load each and every day in order to keep themselves alive. We average an extra 180 decisions to have to make each day because we have diabetes. Now we’re also having to fight hard to keep a form of the drug that keeps us alive, available via the PBS so it is affordable. Since Fiasp became available to Australians living with diabetes, we have seen reduced post-prandial glucose spikes, reduced HbA1Cs, enhanced time-in-range and happier people living with diabetes.

Fiasp is the only ultra-rapid insulin available in Australia and there is no comparable and easy swap to be made. Many have said, “that’s ok, just swap to Novorapid”. Novorapid is a ‘fast-acting’ insulin, but Fiasp is ‘ultra-fast acting’ and that has a flow-on effect to the quality of life for those of us living with diabetes, reliant on insulin to keep us alive. What about those whom Novorapid (the supposed insulin to do a direct swap with), is no longer effective for? I am one of those people who has had to move away from Novorapid recently. It simply wasn’t effective in helping me manage my BGLs anymore.

There were 2553 scripts for Fiasp filled in November – keep in mind, that’s only for people who filled a script for Fiasp in November. It doesn’t factor in those who need a new script every 2, 3, 6 months and weren’t getting it filled in November. Or those who filled their script in October or December. Everyone’s diabetes is different. Everyone living with diabetes has varying insulin requirements, for a variety of reasons. Every person living with diabetes will have varying insulin requirements – what they needed yesterday to keep themselves alive can be different to today, tomorrow, next week, next month, next year… and so on.

When we look beyond a one-month snapshot, we can see that there were 26725 prescriptions filled for Fiasp FlexTouch pens last year. There was also 5398 scripts for Fiasp 10ml vials filled. That’s a lot of people that are set to be impacted if Fiasp is removed from the PBS. Some of these people will be first time users of Fiasp, some will have had several prescriptions filled, some will only have had 1 or 2. These finer details don’t really matter though, do they? At the end of the day, thousands of people living with diabetes are now going to be worse-off than prior to April 1^st 2023 because their insulin-of-choice, the fastest insulin available, is financially out of reach. Being forced to use a different insulin is going to lead to poorer mental health outcomes, more hospital admissions and more costs to the healthcare system.

Private-community based clinics such as PDC Health Hub are able to work tirelessly behind the scenes to be able to offer support to patients as they navigate the transition away from Fiasp to a different insulin, but not all patients have a care team like this. Many people living with diabetes are attending public hospital clinics which have fixed clinic dates and send notification of this by mail. These appointment may be 6-12months away. This is problematic because insulins should not be changed without guidance from a HCP. This also has huge implications for those who might be unaware, they head into their pharmacy in 1-6 months time to get their Fiasp script filled, only to be told it’s no longer available. What now?! This then requires a trip to the GP (many of which have wait times of weeks – not ideal if we’re about to run out of insulin – because without it we will die) to acquire a new script, and experience tells us that not all GPs are happy to simply offer a script for a new insulin for us to use. It adds to the uphill battle and constant mental load that accompanies living with diabetes.

Are all pharmacies ringing their patients who have had a Fiasp script filled to let them know? Mine did, but I’m lucky to have a community pharmacy that I have learnt to expect no less from. Not all pharmacies are like this! Nor will all pharmacies have the contact number for every person that comes in requesting a script. Not everyone has a ‘go-to’ pharmacy; many will just go to wherever is most convenient on the day that they need their script.

There are many people living with diabetes who will have only ever used Fiasp. They might not have ever had to consider the timing of meals, or to have a more in-depth understanding of the profile of how a ‘ultra-fast-acting insulin’ works, versus a ‘fast-acting’ insulin. The thought of the insulin that they use (themselves, or for the person they care for with diabetes) being removed from the PBS is incredibly anxiety-provoking.

To remove Fiasp from the PBS may lead to health poorer health outcomes for those living with diabetes , and this is already causing angst, stress, anger, fear, frustration and worry for people with diabetes.

Comments on the Fiasp petition (which has received upwards of 16,000 signatures in just 7 days) include:

· “Fiasp has given me, by far, the best glycaemic control of my 32 years with T1 diabetes. Making Fiasp unaffordable just means that I'm more likely to require expensive medical services for kidney and eye disease and sooner. Just when we finally get access to the tools we need to live almost normal lives through pumps and subsidised CGM, a vital component, ultra-fast acting insulin, is being taken away and we're back to the bad old days of trying to predict the future every time we bolus for a meal and prolonged episodes of high blood sugars.” – A Ellis

· “Managing diabetes at an affordable cost is a must.” –S Butcher

·  “Living with type 1 diabetes is a juggling act. Of course one of the key issues is finding an insulin that works for and with you. Fiasp has made a huge difference to many people lives due to it being so fast acting. Better controlled blood sugars means less complications from the disease which means less hospitalisations and less of a burden on the healthcare system. Please don't withdraw fiasp. It has only brought stability to many many Aust diabetics.” – S Bennett

·  “This is outrageous! People don’t choose to have diabetes, so WHY should they have to pay an exorbitant amount just to have a SAFE option? Common sense needs to prevail here...” – D Habel

· “My son was recently diagnosed diabetic, that in itself was a shock and our lives changed, money is tight, people could die without this, seems ridiculous to make it unaffordable.” – P Nordstrom

What’s next, what can you do?

Please join the diabetes community in their advocacy efforts by writing an email to your local MP. Renza, Director of Community Engagement and Communications at JDRF International’s Global Advocacy team, shared these great tips for how to do this:

· They don’t know diabetes and don’t know details, so start with the basics and keep it to the point: I am writing about an issue affecting me as a person with diabetes and that issue is the withdrawal of Fiasp from the PBS. Fiasp is the only ultra-rapid insulin available in Australia and there is no comparable and easy swap to be made.

· Be clear about the issue: Fiasp is being withdrawn from the PBS. While it may be available on a private prescription this will make it too expensive for many people with diabetes, meaning a management option is being removed.

· Explain how that impacts you: As a person living with type 1 diabetes, I am required to take insulin every day. Fiasp is the insulin that works best for me and if I am no longer able to afford to use it due to it being removed from the PBS, my diabetes management will be negatively impacted.

· Be clear about your ask: I am asking for you to advise what the Government is doing to address this matter, and how it is working with Novo Nordisk to resolve the concerns of many people with diabetes who are worried we will no longer be able to afford the best treatment option for our diabetes.

Lastly, don’t ever believe that you are not going to be part of the movement that makes change. The diabetes community is loud, collaborative and it achieves big things. It’s how we got insulin pump consumables on the NDSS and how we now have CGM more accessible than ever. The diabetes community is incredibly powerful, and everyone that gets involved has a huge impact that so many are grateful for.