Peg Shortage?: So got a full debrief from my MPN... - MPN Voice

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Peg Shortage?

Solyesh profile image
9 Replies

So got a full debrief from my MPN specialist today on the situation with Peg in country (Israel). It seems that a company called Pharma& (an Austrian company I believe) acquired the global rights to Pegasys in 2021 from F. Hoffman La Roche AG (Roche). They also acquired all of the existing stock of Peg at that time. What they did not do was to acquire the production capacity and have also not built any new plants since acquisition. This has led to diminishing supplies in many countries.

According to my MPN specialist, the company has prioritized supply to those countries whose national health systems have approved Peg for treatment of ET (and PV). He stated that in his discussions with other MPN specialists they are already seeing some shortgaes in some European countries and throughout much of the Middle East.

Locally he has started the process of asking to switch Besremi (which has been approved for PV but not for ET) for local Peg users. Given that Besremi is currently not approved by any country for ET first line treatment it is a process (he gathered the data he could on the two current Besremi trials for ET) and believes given the fact that while Peg was not officially approved as a first line treatment for ET either (but was readily used off-label) and that Besremi has been approved locally for PV and the similar formulations, that approval will come down for ET as well.

Locally it is basically 3 hoops to jump through - the local pharma board - then the national medical board (luckily currently presided over by one of the country's top hematologists) and then the Insurance companies (national health funds).

If things go according to plan, it will likely take 3 weeks for approval. This means that I would likely miss two months of interferon treatment (since my last dose of Peg). Neither of us is worried as my numbers had been great on Peg and aren't likely to completely crater in 8 weeks (and other than blood count numbers I am considered overall low risk). The last time I had to take a break from Peg (toward the beginning of my interferon journey two years ago due to elevated liver enzymes) my platelets and especially WBCs jumped right away. Have a consultation with him F2F first week of August and will have complete blood work done prior so will be interesting to compare to where I was 4 months ago.

Not sure if others are experiencing any type of Peg shortage and definitely do not want to alarm anyone, but thought I would share in case others need to start making plans as well.

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Solyesh
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9 Replies
Indigo42916 profile image
Indigo42916

Thanks so much for this update; I haven't heard about any problems here in the US.

nemo731 profile image
nemo731

In the Netherlands Peg 90 and 135 are hardly deliverable (if at all), doctors are not allowed anymore to subscribe Peg for new patients. Altough I need Peg 135 weekly, they try to supply me with Peg 180 wich still seems to be some in stock, but that also is a precarious proces/hassle as I have to phone/go to pharmacy each week in the hope te get some.

RoundTheWorld profile image
RoundTheWorld in reply tonemo731

Do you know why it's not allowed for new patients? Cost, side effects / other options?

nemo731 profile image
nemo731 in reply toRoundTheWorld

My MPN-specialist (UMCG Groningen) told me they got this order from management, probably due to the shortage and to increase the chance that existing Peg-users can continue their use, and (my guess) they will have to put new patients for the time being as a starter on HU or other option. He also told me ('for what its worth') he heard they expect the availibity to rise again somewhere mid-2025 (but didn't know the source or background of this info - maybe Pharma& is working in production-capacity?)

RoundTheWorld profile image
RoundTheWorld in reply tonemo731

Oh I see! Makes sense. Fingers crossed they get production ramped up quickly. Thanks for your reply.

light profile image
light

So sorry to hear this situation with Peg shortage in Israel. This is concerning for us all, even though in UK is still available. Will be praying for you all in Israel and other countries that this situation will be resolved fast for you/us all. In His name I pray. Amen🙏

Solyesh profile image
Solyesh in reply tolight

Thank you 🙏🏾

Mazcd profile image
MazcdPartnerMPNVoice

hi all, we are very sorry for those of you who are experiencing these shortages, we have just posted an update for those in the UK

healthunlocked.com/mpnvoice...

PhysAssist profile image
PhysAssist

This is the UK 'blood cancer site link about the shortage:

bloodcancer.org.uk/news/int...

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