can anyone confirm whether Besremi / ropeginterferon-Alfa-2b is approved for first line treatment of Polycythemia Vera on the NHS.
im 41, diagnosed 5years ago, fit and healthy but obviously concerned about the long term progression risk. Having read quite a few articles, it appears some experts are advocating the use of Besremi for young patients irrespective of risk profile due to its potential diseases modifying abilities.
I’ve looked at the costs, and it’s quite expensive.. too expensive for me to fund privately…
would welcome any insight into anyone currently receiving this on the NHS across the UK.
Thanks!
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Steve_Essex
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A decision has not yet been made by NHS England about making Besremi available.
Disappointingly, and despite campaigns from cancer charities, in 2022 it was refused approval for use by NHS Scotland. There is this article on the Leukaemia Care.org website about the Scottish Medicines Consortium decision not to approve Besremi :
I saw the SMC article, thank you! But couldn’t a certain if an NHS England decision was already made or still pending. Reassuring it’s not made yet, but share your concerns in light of the SMC decision.
I wonder where our leading experts such as Prof Harrison stand with regards to supporting a request for approval.
Do we know when it’s potentially earmarked for a request to NHS England?
Hi Steve, I understand your concerns about long term progression, especially as you are so young.
I wonder why you haven’t considered taking Pegasys, which is free on the NHS?
Dr Angela Fleischman who is well respected in the MPN field notes in relation to Pegasys, ‘There’s nothing different about Ropeg in terms of efficacy. This is just a different formulation of the same drug’.
Ropeg may well mean that you have to inject less frequently however. If this is your main aim you could always switch to Ropeg/Besremi if it is approved by the NHS at a later date.
I hadnt appreciated the efficacy was almost identical… the articles I’d read around the excitement of besremi had led me to incorrectly believe it had greater efficacy. Understand the benefits of besremi in terms of longer lasting, fewer injections, reduced symptom burden etc.
I’ve been historically reluctant to medicalise when feeling ok, however in light of interferons to potentially reduce risk of progression with long term safety, it’s worth me having an informed discussion with my team.
Hi, Steve. I think your instincts are right on in terms of considering a drug that may modify the course of the disease, even though you’re feeling good. I was diagnosed with PV at 44 and felt great for years, except for a little anemia due to phlebotomies every few months. Fast forward to age 60, and I had my first bone marrow biopsy since diagnose at age 44. The BMB showed notable disease progression, and I’m now on an interferon. While I was living my life and feeling great, that PV was quietly working away in my bone marrow. If I knew then what I know now about the disease progression capabilities of interferons, I would have given Pegasys a shot.
Hi GardNerd, really appreciate you sharing your story - thank you! I have an appointment with my CNS at guys on the 25th April, will make my case and push for moving me to Pegasys to be considered.
Will keep you posted on how this goes as I suspect it won’t be a straight forward process given I’m low risk and have relatively stable albeit fluctuating within a range blood counts.
Thanks both Steve_Essex and GardNerd for your thoughts - similar to Steve I have been wondering whether to step up my meds from vene + Asp with the thought of a) could I be feeling even better than I do ? (I have a dedicated exercise, diet and natural health regime that is keeping much of the fatigue at bay)
Similar to you Steve I am 6 and half years into diag, and was diagnosed at fairly young age of 49 - admit much older than you were Steve.... and
b) have been wondering about the long term issues of my bone marrow - as you say GardNerd this is another aspect to be aware of as we younger guys may be living with pv for some decades possibly. I am encouraged by the pending decicison on Basremi that I have been considering as the first meds to try - and also read something online in a you tube podcast about a new drug under development that makes the iron less available for blood cell production and in turn helps with the anaemia issue as well. It's most encouraging to see that now the pandemic is out of the way, that progress is being made despite our disease being quite rare.
My counts seems v steady at present - around 43 HCT, 1050 plt and 14 or 15m WBC. tend to do vene every quarter or so.
it will be interesting to see what happens with the Besremi. thank you and good luck to everyone, keep calm and carry on being as healthy as you possibly can be! x
As Roxanne says thanks for that exchange it is interesting. I was diagnosed at 59 so an oldy in comparison but I'm on venosection every 4 weeks and get up to 46 HPC. Is this a high frequency for venosection as I have no information on this. If its asking for Pegasy might be a good idea.
my understanding is that there is a gender diff here so as a female I am better to have a lower HCT I believe males tend to have a higher level of haemocrit naturally ? thank you Dougy and 59 y old is still relatively young for diagnosis I believe. My Nana is still alive at 104 so I could have another 50 years to go! You never know!!
ok so I’ve had my standard outpatients appointment at Guys today, bloods all still within range of 2019, platelets 950, hct 46%,, WBC normal range (didn’t get number)…
I challenged the current approach of ‘watch and wait’.. which doesn’t sit right with me.. I don’t want to be waiting for a thrombotic event or any form of progression before I’m eligible for therapies such as Pegasys.
I stated my concern about future progression and cited the work doctor silver has done as well as other studies that demonstrate interferons as first line therapy is something to be considered for young low risk asymptomatic patients like myself…who’s needs are largely unmet by conventional treatment strategies…
the CNS listened and will be discussing with Prof Harrison… let’s see..
Ive also asked for a re measurement of JAK2 VAF, which was 17% 4 years ago, as well as a gene panel, which only previously indicated Jak2 mutation…. I think 4 years is appropriate to have a re-baseline done..
however it staggers me that this isn’t done as part of regular screening, even annually.. the more data we collectively collate, surely the better! - feels like a missed opportunity to me…
Anyway, I’m back in 8wks to discuss. Will keep you posted
Delighted to hear you’ve advocated your case so well. I’m sure the team at Guys will address your relevant concerns and discuss suitable treatments that reflect those concerns at your next appointment.
ok so I’ve had my appointment and spoke to one of the consultants who works under Prof Harrison about the potential to start IFN alpha even though young-ish (41) and low risk…
We discussed this would be a joint decision based on risk / benefit and I’ve been given some literature to consider re: potential side effects.. which I was mostly aware of.
we’ve requested a jak 2 allele burden as part of my latest blood test to get a new baseline… 4 yrs ago it was 17%..
We’ll be discussing options in 6 weeks time at the next clinic.. I’ve discussed with my wife and she’s fully supportive whichever route I decide… which is I’m going to be pushing for it..
Will continue to keep you informed with how this goes as hopefully will be useful for those in a similar position..
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