Pegasys Shortage in Australia

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Sharon1
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Joined: Thu Aug 15, 2024 1:36 pm

Pegasys Shortage in Australia

Post by Sharon1 »

Good afternoon from South East Qld 👋

Just writing to share my experience with not being able to source my Pegasys in the last week. Chemist Warehouse sent me the usual text to see if I wanted to order my Pegasys and I said yes 👌🏻 Due to the price they don’t keep it in stock and order it in each time tho they need my commitment to order it. However, the pharmacist phoned me on Saturday night to say she would not be able to source any till the end of the month and since I would need it before then to ring around all the pharmacies to see if they have any stock.

Well I made quite a few phone calls and due to it being so pricey, only one pharmacy had any on hand, the rest of the pharmacies did not know when they would be able to get their hands on any Pegasys. The one pharmacy that had some any it was for the higher mcg dose injection which didn’t work for me.

So I had seen a post on the Health Unlocked site which mentioned the shortage and how JustMeds may be the company to contact. I did some googling and came up with the following website - https://www.justmeds.com.au/pegasys

Also that night I sat down and joined in with my first chat meeting with MPN-Mates. It was great 🤩
When I mentioned my efforts that day to get my Pegasys supply, Leon shared a link with Steve who forwarded it onto me. It was the same company JustMeds that I had come across.

I wrote to my haematologist that evening and told her what had transpired and asked her how I should move forward. She phoned me the next day and explained that she had only just heard about the Pegasys problem and it was not well known. She said she also worked in the public hospitals and there was no problem accessing Pegasys there.
She said that most pharmacists etc around Australia had not been warned and were still under the impression that they would get stocks in, they just didn’t know when.

However, now no one would be able to get any stock from the 1st September 2024.

It could only be accessed through two companies, JustMeds and I don’t know the name of the other.

So she sent me the brochure which can be accessed from that site above and said to follow the steps and to let her know of my progress. Any problems to get back to her asap. She said if I did it online then to also ring the company the following day to just check up and confirm all went well. https://static1.squarespace.com/static/ ... t+2024.pdf

So the next morning I had a email reply from JustMeds.
They said to take a photo/scan of my script and send it through on this email - rx@justmeds.com.au and to post my original script to the address they gave me which is on the information brochure on the website above.

They asked if I was on any concession cards etc and if so to pass that onto them and my Medicare number. The site explains how it is billed and we will continue to pay what we have been paying, no extra.
They asked if I wanted to order via their app or to contact them each time to order. I said I would give the app a go to start with.
They then sent me an SMS with a link for their app.
I clicked on it tho it didn’t take me anywhere.
I phoned the lady and she was very helpful.

She said I would just need to allow one week beforehand when I order. She said if I had any other scripts I could order those through them as well.

There is no charge for delivery. The Pegasys would be delivered in a refrigerated vehicle and I could order more if I wished. That would be very helpful for me as for 3 months each year we travel overseas and I would need to take a bulk supply with me.

I will copy and paste below what I have received via email -

“ Hi Sharon,


Welcome to JustMeds, thankyou for sending your prescription.

Please ensure the original is posted to us at: JustMeds PO BOX 536 Noosa Heads 4567 QLD

Could you please reply to this email with your Medicare Card number, any concession cards and Safety net card numbers you have.

We can then either send you a link to use the Medadvisor Medication Management app (or search for our pharmacy JustMeds Mosman 2088).

Alternatively, you can send us an email each time you require a delivery of your medication, we will then send you a link to make payment and delivery will be arranged. Please order a week before your medication is due to ensure delivery arrives before required.

If you have any queries, please call us on 07 2000 4124

We can deliver your other prescriptions with your Pegasys if you like, if you would like to accept this offer please email a photo of those scripts and post all originals directly to us.

Warm regards,

Kerryn Woodward

Pharmacist and Customer Support
Ph – 07 2000 4124
JustMeds Pty Ltd
Mail: P.O Box 536 Noosa Heads 4567 QLD
Email: pharmacist@justmeds.com.au
Website www.Justmeds.com.au

The next email I received -

“ Thankyou Sharon,

We can either send you a link to your phone to use the Medadvisor app to order your medication and make payment. Or I can send you a payment link directly to your email to pay for your medication.

​If you request for the payment link, you can then just send us an email or SMS each time you require a new delivery.

Warm regards,

Kerryn Woodward

Pharmacist and Customer Support
Ph – 07 2000 4124
JustMeds Pty Ltd
Mail: P.O Box 536 Noosa Heads 4567 QLD
Email: pharmacist@justmeds.com.au
Website www.Justmeds.com.au

So I hope that has helped anyone in Australia, wondering what to do with their Pegasys supply.

Any questions further, just phone Kerryn on the phone number above and I am sure you will helped.

Best wishes,

Sharon Landau
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Re: Pegasys Shortage in Australia

Post by MPN-MATE Admin »

Hi Sharon... :-)

Thank you so very much for sharing this POST...

This is precisely what MATES & our FORUM is here for, to ease the anxiety and stress, and hopefully to aid each other to better manage our treatment regimes, and in such ways that still allows us all to live our relatively speaking – "normal" lives...

Sharon, as you may have already seen, I have also asked Dr. Cecily Forsyth on the NSW Central Coast to provide whatever clarity she may be aware of...

We spoke of Dr Forsyth at our last MATES meeting, and in my view... Dr Cecily is probably Australia's leading practitioner for the treatment of MPNs with Pegasys' Interferon therapy.

Hopefully, she might respond shortly, after which I shall update this POST with whatever commentary is provided etc.

Once again Sharon, thank you so much for having made this POST, this is vitally important information...

Best wishes, stay happy, safe & Live your Life! 8-)

Steve
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Sharon1
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Re: Pegasys Shortage in Australia

Post by Sharon1 »

You’re welcome, Steve.
It was good to be involved in the forum chat on Sunday night and learn from you all.
Getting hold of the information was a group effort 👏🏻
I look forward to hearing what Dr Forsyth has to recommend 🤩👌🏻
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Re: Pegasys Shortage in Australia

Post by MPN-MATE Admin »

Evening Sharon... ;-)

Thanks so much for doing this POST...

It is such an important Topic, and to so many I'm sure...

I will be sure to Post the advising of Dr Cecily once she has responded etc...

Thank you also for all your kind words via your email... I am very much a work in progress I can assure you... Yes, I have some Epsom Salts too... Time to utilise them I guess... ;-)

Thanks Sharon... 8-)
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Sharon1
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Re: Pegasys Shortage in Australia

Post by Sharon1 »

Well to follow up, I received an email this morning to say my Pegasys would be delivered today. Tho it didn’t say what timeframe.
Then I received a text to say it would come today but to make sure someone was there to accept and sign for it.
I phoned JustMeds for a narrower timeframe as I had a full day of appointments and I didn’t want my husband stuck to home all day waiting.
They were great. David called me back and said between 2-3pm.
I got a text at 2pm to say the delivery would happen in the next 2 hours.
I contacted my husband and he said the delivery happened 5 mins later. He signed and was told to make sure he refrigerated the meds asap.

So a trouble free delivery which is a lovely relief 👌🏻
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Re: Pegasys Shortage in Australia

Post by MPN-MATE Admin »

Hey Sharon... :-)

Pleasantly surprised to learn that everything went so smoothly, (& on Friday 13th too...)

But seriously, they sound like an excellent organisation, (& long may they remain so...). It seems the crisis, (for now at least...) appears to have been averted.

Hopefully, we might all learn more when Dr Cecily's practice comes back to me/us etc...

Fingers crossed, and that is such wonderful news Sharon... Thanks so much for keeping all of us appraised of this potentially very serious development...

Really well done Sharon... 8-)

Thank you & Best regards

Steve
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Sharon1
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Re: Pegasys Shortage in Australia

Post by Sharon1 »

Just to finish off, the delivery went well.

I got a text the next day to say the Pegasys was coming that day.
I had a day full of appointments so I phoned JustMeds to ask when it would come so I could ask my husband to be home to receive it.
David answered the phone and said he would find out and phone me back. He sent a text to say it would come between 2-3pm which was great.
I received a text at 2pm to say the delivery would happen within the next 2 hours.
I phoned my husband to make him aware. He phoned me back to say the delivery happened 5 mins later.
I received two boxes of Pegasys as I asked for as we will be going away. They told me we could order multiple lots if we wanted.
I could not see on the app how to order more than one but in the notes I asked for two. I saw I was billed for two and two arrived.
So all went well.

I hope it does for you all who need it as well.

Best wishes,

Sharon
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Leon1
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Re: Pegasys Shortage in Australia

Post by Leon1 »

Thank you Sharon for this post

Just want to share update on my side and from UK on Peg shortage and possible use for Besremi-problem is that it is not approved in Australia

Apologies for long post as wanted to include all info

Leaflet on Interferon
https://www.mpnallianceaustralia.org.au ... l-2021.pdf

GOV submission for Besremi-Submission from Myeloproliferative Neoplasms Alliance Australia (MPNAA)
https://www.aph.gov.au/DocumentStore.as ... bId=692318


Pegasys Patients | Echo Therapeutics
https://www.echotherapeutics.com.au/_fi ... 4a5eb2.pdf

afa4cf_c71e65e2079f4c1aa33cc7be9ddc71a6.pdf (echotherapeutics.com.au )
https://www.echotherapeutics.com.au/_fi ... 4a5eb2.pdf
Your doctor has recommended Pegasys® (peginterferon alfa-2a) as a suitable treatment option for you. As a
patient currently being prescribed Pegasys® we wanted to update you on some important changes that will
impact how you receive your treatment moving forward.

From 1 September 2024, Australian patients prescribed Pegasys® will only be able to access this treatment through the new dedicated Pegasys® Home Delivery Program. This program is delivered by Echo Therapeutics (the sponsor of Pegasys® in Australia) through its EchoCare™ service, in partnership with JustMeds – a local
specialist medicines delivery provider. This is initially a short- to medium-term solution to make sure Australian patients prescribed Pegasys® can continue to access treatment when needed.


Please find below information and the steps to how to arrange delivery of Pegasys® (peginterferon alfa-2a) from
1 September 2024.

If you would like to speak to someone from the JustMeds team, please click here to email the team or phone
07 4000 4124.

UK MPNVOICE ANNOUNCEMENT INTERFERON SUPPLIES
https://www.mpnvoice.org.uk/news/interf ... 04-sep-24/

Interferon supplies for people with MPNs – update 04 Sep 24
Pegylated interferon alfa 2a (Pegasys) is currently in short supply in the UK and worldwide. This is because the licence to make the drug has passed from one pharmaceutical company to another, and there are delays while the new company sets up its manufacturing processes.

The shortage is temporary – we expect stocks to return to normal in about a year. In the meantime, we have joined with charities Blood Cancer UK and Leukaemia Care to press for a solution in the UK.

What we are doing:

We are writing a joint letter to the NHS in each of the four UK nations to request approval for another version of interferon alfa called Besremi. There is strong evidence that Besremi works as well as Pegasys for people with MPNs.

We want people who are currently taking Pegasys to be able to switch to Besremi. We are also asking for newly diagnosed people to be able to take Besremi if interferon is the best option for them.

If it is approved, using Besremi would be a temporary solution – people would go back to using Pegasys once it is available as normal.

We will keep you updated with our progress.

In the meantime, MPN experts are writing advice for treating teams across the UK to help manage the shortage.

What you can do:

If you are worried, speak to your hospital team. You don’t have to wait for your next appointment.
Your team may suggest some adjustments to your Pegasys dose to avoid waste. Be prepared for this, but ask questions if you are concerned.
Don’t change your dose of interferon without speaking to your hospital team. If you typically use less than a whole syringe of Pegasys, don’t reuse what’s left – it is not safe.
If you have any problems getting your Pegasys prescription, please let us know by email at advocacy@mpnvoice.org.uk, so we can monitor the situation around the UK.


Also see below MPN10: Track the severity of your ET-related symptoms
but I have suspicion that data may go to Novartis (logo was included)

https://au.mpn.your-symptom-questionnai ... naire?q=et
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Leon1
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Re: Pegasys Shortage in Australia

Post by Leon1 »

Hello All,

TGA PEGASYS peginterferon alfa-2a 135 micrograms/0.5mL injection pre-filled syringe - medicine shortage information
https://apps.tga.gov.au/Prod/msi/Search ... ame//91836


TGA Shortage database
https://apps.tga.gov.au/Prod/msi/search ... getype=All

Anticipated shortagesSort by: Updated date | Active ingredient | Trade name | Therapeutic class
pegcetacoplan

EMPAVELI pegcetacoplan 1080 mg/20 mL injection solution vial
AUST R: 346216
Shortage expected from: 23 Oct 2024
Availability: Available
Updated 07-10-2024

Peginterferon alfa2a

PEGASYS peginterferon alfa-2a 135 micrograms/0.5mL injection pre-filled syringe
AUST R: 91836
Shortage expected from: 01 Mar 2025
Availability: Available
Management action: The sponsor is closely controlling the supply. This medicine can be accessed through the Pegasys Home Delivery Program. For information on this program, go to https://www.echotherapeutics.com.au/ech ... syspatient
Updated 01-10-2024

Peginterferon alfa2a

PEGASYS peginterferon alfa-2a 180 micrograms/0.5mL injection pre-filled syringe
AUST R: 91837
Shortage expected from: 01 Mar 2025
Availability: Available
Management action: The sponsor is closely controlling the supply. This medicine can be accessed through the Pegasys Home Delivery Program. For information on this program, go to https://www.echotherapeutics.com.au/ech ... syspatient
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Re: Pegasys Shortage in Australia

Post by MPN-MATE Admin »

Wow Leon...

If this is correct, the crisis w/ Pegasys' is far from over...(?)
Let's hope that the Big Pharma' companies get their acts together to avoid such uncertainty... (fingers crossed...)

Steve
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Leon1
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Re: Pegasys Shortage in Australia

Post by Leon1 »

Yes Steve , it seems what is happening now is triage to ration PEG, the real Shortage expected from: 01 Mar 2025
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Re: Pegasys Shortage in Australia

Post by MPN-MATE Admin »

Maybe they're working towards a Price Rise? One never really knows...
Hopefully, any true shortage shall be short-lived... One hopes of course...

Cheers Leon

Best

Steve
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Leon1
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Re: Pegasys Shortage in Australia

Post by Leon1 »

That is most probable outcome

Create artificial shortage and Rise Prices

Worked for Apple
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