Hi … can anyone tell me “why” jakavi is easily accessible and affordable in the U.K. ??? Or even Europe?????
Would really like to know … I’m in Ontario Canada and my hematologist is close to preparing to plead with our government to allow me to have jakavi on compassionate grounds because my “pinching/itching” gets intense in most situations and is otherwise mildly constant when I’m at rest and has caused reduction in quality of life for me and I have tried a long list of meds and supplements and a s**t load of other things (sorry) …… I also have an enlarged spleen which is considered to be “not severally enlarged” but I have portal hypertension with that and I have discomfort with it….. so considering all this specifically I’m hoping and praying that out government will let me have the drug. Here in Ontario it comes at a cost of approximately $8,000.00 to $10,000.00 a month…. My medical insurance will cover a small portion but there is no way I would still be able to afford the difference not to mention the increase in premiums!!! Anyway why is it affordable in Europe?
Yes, it can be a dilemma in many countries... However, if you prove intolerant of your current med's & your Specialist can reclassify you as possibly being 'Pre-Fibrotic' MF, due to the enlarged Spleen & MF symptom burden... "Quality of Life" is important wen one suffers from a likely incurable chronic illness that requires 'Long-term' management...
In Australia, where have a government subsidy scheme, as I believe they may have one in the UK too... You may need to ask if you have an equivalent there... (?)
Are you currently seeing an MPN Specialist? If not, perhaps it's time for a 2nd opinion... Just a thought...
In the UK we are lucky enough to have the NHS. I was put on ruxolitinib for my pv after 2 years on hydroxycarbomide, during which my white cell count continued to rise, peaking at just over 30. Even after 2 years on ruxolitinib my whites still hover in the mid 20s. It would seem to be prescribed by assessing individual cases. I do feel lucky. It stopped all itching and reduced my spleen size. Although due to covid its been a long time since I had a proper consultation and examination.
My wife has MF or more likely prefibrotic myelofibrosis, and is soon to be going onto jakafi ruxolitinib which in the UK is priced at about £3000 a month to the NHS. Though is given free to patients. In France I gather cancer Meds are also free to patients.
Hi Keiks , , firstly I hope you get approval for Jakafi on compassionate grounds I'm sure if you do you will get almost instant relief from your symptoms. I had a quick scan at the Cancer Care Ontario (drug formulatory) website about your drug approval system and it's good to see that something is in place. How easy it is for someone to qualify who isn't in receipt of a state benefit or over 65 I don't know. But if your Haematologist puts a strong case forward and perhaps points up possible progression to Pre MF as Steve suggests then that's the best he or she can do.
I was very fortunate to get mine in the UK back in 2013/14 via the NHS Cancer Drug Fund. This changed in 2016 to a more proactive scheme in conjunction with the National Institute for Health and Care Excellence - NICE who approve drugs for release to the NHS and encourage drug companies to bring drugs to market at reasonable cost. Thankfully It is still possible to get more expensive drugs like Jakafi which aren't approved because they're too expensive. That's a very general overview and it's more involved as you might guess.
Chris … thanks so much for your input and research…. I’ve begun putting a list of how this “pinching/itching” has impacted my quality of life …. When I wrote it all down it made me cry and I feel like the possibility of getting jakavi on compassionate grounds might not happen because I’m on hydroxia and I’m tolerating it well but no relief with the itching…. And my blood levels are not too bad right now. So we’ll have to see what happens! 🤷🏻♀️🤷🏻♀️🤷🏻♀️🤷🏻♀️
If any of the decision makers suffered with itching on the scale you are (and I used to ) they would approve your request in a heartbeat. Good Luck with it !!
Very fortunate to be in the Uk and receiving this drug free on the NHS …all good apart from disastrous weight gain . It has helped my symptoms greatly although my anaemia has worsened. Not sure if this is due.to the meds or my myelofibrosis. Hope you manage to get it soon. Skipper L
Hi Keiks I am so sorry that you are unable to get jakafi in Canada- I can’t imagine that ANYONE could afford those costs.I remember 2 and a half years ago when I was offered this drug because of my PV horrendous itching/pinching and within a week my life was worth living again (maybe a bit extreme). Apart from weight gain which I try very hard to control this drug suits me. I do hope your government helps you out. I don’t think they would hesitate if they suffered from this ‘itch’
Good luck. The only thing that ever helped me was a holiday in the sun - so if you are able I would recommend it just for some temporary relief.
I am in UK aged 69 with ET/PV and despite terrible itching cannot get ruxolitnib due to cost. I was told it was given to younger patients and MF patients. I put myself forward for the mithrodite trial but not looking likely so I'll probably switch to interferon in August.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Hydrea VS Jakavi
Jakavi and anaemia 
Headaches. A Jakavi side effect? 
Jakavi advice please
