Availability of Jakavi (Ruxolitnib) for gvhd in UK
Hi. I currently have chronic sclerotic gvhd, and can hardly manage to mobilise for it. My consultants inform me that the only real medication that will help alongside my current Ecp treatment is Jakavi. Currently as you are aware it is not approved for gvhd in uk but I hear Anthony Nolan is campaigning to have it approved. My life is currently on hold and I am on benefits and have a very low morale. Are you able to let me know if we are any closer to getting it approved for chronic gvhd as I am desperate for it.?
Please accept my apologies for the delay in getting this update to you. I’ve just emailed it over as requested.
Here’s a summary, for anyone else on the Forum who may also be interested:
Sadly ruxolitinib (Jakafi) is still not available in England. The reason: it is now a licensed medication for GvHD which means that, according to NHS England policy, it must be considered by NICE (the National Institute for Health & Care Excellence) before it can be funded by the NHS.
When ruxolitinib was previously available from 2020-22, it was because it was unlicensed for GvHD at the time, so NHS England were able to allow its use temporarily to support with keeping patients out of hospital during the COVID-19 pandemic.
When that temporary policy came to an end last year, NHS England said the system would only start funding it again if the manufacturer submitted ruxolitinib to NICE. The manufacturer (Novartis) has not yet done this.
Anthony Nolan, in collaboration with the BSBMTCT (British Society of Blood and Marrow Transplantation and Cellular Therapy), have tried to get Novartis and NHS England to resolve this situation.
We are waiting to hear from Novartis if/when they think they might submit to NICE, but they have told us this could be a while.
On a more positive note, there is a new drug for chronic GvHD that is currently being considered by NICE for use in England. It is called Rezurock (belumosidil). Anthony Nolan is contributing to the appraisal to illustrate why more treatment options for GvHD are needed. We hope that NICE will make a decision on Rezurock in Sept 2023, although it could be sooner.
I hope you find this update helpful. If anyone has any questions or concerns about your GvHD, and how it is being treated, please continue to raise them with your healthcare team at the earliest opportunity. They will have the fullest understanding of your treatment options going forward.
We can also give you general information on GvHD on our Helpline (0303 303 0303) or you can email us at: firstname.lastname@example.org
All the best,
If not available soon, can it be purchased privately?
Hi Dave, I hope someone from Anthony Nolan can give you some facts on this.
You could contact your mp or set up a crowd funding thing. Or try make contact with someone else who's managed to get it to find out how they did it.
I'm really sorry for you. This is awful.
If I get any ideas, however wierd or wonderful, I'll let you know. There's nothing to lose.
Has anyone else recently been able to get Ruxolitnib subscribed for chronic gvhd in UK?
Just info from my side, but I'm not in the UK. my immunsuppressants are not only jakavi.
I also have Myfortic and maybe Cotrim is one too, not sure, and also aciclovir. Maybe you can get them prescribed.
I'm thinking of you a lot. Sorry I didn't take your situation seriously. I didn't get it. It's not fair. It must be awful. If I get any more ideas, I'll let you know.
I guess nobody from Antony Nolan look at these posts anymore to know how far Anthony Nolan are with thier campaining?
Call their Hotline. They're doing their best. It's difficult for you to be active when you're suffering so much but stay on it.
Maybe there's a study going on that you could join. Anthony nolan will tell you.
Best... and love,
Hi. Spoke to Tom on patient services hotline at Anthony Nolan. He will try and get update for me on Jakavi and let me know tomorrow.
Many thanks for your reply. It is really appreciated.
That's a relief Dave. Thanks for letting me know. But of course, you need some good news. I'm thinking of you, hoping with you.
Justcame across this on gvhd facebook website. It looks good. Seriously reduced med prices.
I only searched jakavi and it came up.... not available, notify when available.
Best of luck all,
Thanks for looking, I really do appreciate it. These days I seem so fatigued I never seem up to doing much research. I was never like this before. Not sure if is the low dose steroids. I have had a look at your website and tried to input rezurock as well which may help me but it can’t find that either. If I enter an immune suppressant cellcept which will not help me it says prescription only. Thanks for trying. I may try Facebook group to see if they know of any other jak2/jak2 inhibitors that target fibrotic skin.
It's understandable that you're not in the mood, have the energy to research. We're allowed to feel **** Dave, I was told by ally in the Facebook group that it's ok to be in bed all day and have Pyjama days. Go with it. Don't criticize yourself. This helped me a lot. I'm so critical of myself too. Let's ease up on ourselves. I'm not like it either but it's ok.
Sleep well Dave
Hi Helen ,
Many thanks. Because I am so fatigued and immobile all my days are pyjama days. I was never like this before. It worries me. I hope if I can get off these low dose steroids I will improve a bit. I joined the prednisone uk group and lots of people suffer really badly when on low dose prednisone with fatigue, not being able to walk upstairs, muscle weakness, joint pain, big mood swings, not being able to get out of bed. So hopefully can come off them soon as not doing anything positive for me, as not helping my gvhd.
Glad to hear you've found the prednisone uk group.
Here's something from the facebook group from today. I did straight copy and paste.
"Jakafi helped me get off steroids for good. I really didn’t notice any side effects. I also had skin and gut gvhd. Also eye and mouth. My gut was the worst. Kept me on steroids forever until Jakafi. I get a grant through something called the PAN Foundation. I have no co-pay. Call Jakafi directly and they can help you figure out help with the cost. Good luck!"
Enjoy your day Dave, pj's or not. I'm thinking my flare up might have gone to my lungs, I'd got through that one, ticked it off. I'll wait and see.
Kindness and compassion to us all,
many thanks. I hope you do not get flare up to the lungs as I think probably worst place to have it. We are all suffering in our own ways. I hope we all start making progress soon as it mentally helps. I think without noticing physical progress it does affect us in a negative fashion.
My son has severe chronic pulmonary gvhd. He started on rezurock approx 3 weeks ago. The Royal marsden are his primary carers.
The cost is £7.5k per month and we did a go fund page to help raise funds. We have raised enough for 5 months and then hope it will either be nhs approved or if not, they will agree to fund the remaining treatment if my son is responding. He is 20 and was diagnosed with PMAL at 17.