Ibrutinib denied to new patients: Learned today... - CLL Support

CLL Support

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Ibrutinib denied to new patients

Pennycam profile image

Learned today that the cancer drugs fund has removed Ibrutinib from its approved drugs list. Feels gutted for anyone who needs this drug as they will not be able to have it in the UK unless they can afford to pay for it themselves.

Apparently existing patients on Ibrutinib will continue to be able to have it.

This drug has been a game changer for some in the treatment of CLL. Myself being one of them.

In April things looked very glum for me. Stage 4 CLL with less than 3 years remission and counts drastically falling.

Now 5 months later I have a total reversal of fortunes with normal counts in all areas, no palpable lymph nodes and for the first time since chemo (FCR} I feel normal. My energy levels are back to where they should be and my constant infections are a thing of the past. All down to Ibrutinib. I am working in a demanding job working 10.5 hour shifts as a nurse.

Where might I be if I had been denied Ibrutnib, I dread to think.

Our NHS is struggling- there is no doubt but axing funding for such an effective drug is a sad indictment of how poorly managed parts of it are and how politics has wheedled itself into patient management decisions, where it has no place.

I feel despair and anger at this news in equal measure.

12 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

The cuts also include bendamustine, as I understand...

Pennycam profile image
Pennycam in reply to Cllcanada

yes I believe thats also been axed

I find this to be quite terrifying, Pennycam. Like you I have been on Ibrutinib for just some months and have had very positive results. Spleen and lymph nodes back to normal. Diarhhea, suffered for 18 months, now gone. Weight slightly increasing. Fatigue dissappeared. Ibrutinib clearly has worked for me. Is this political pressure on the manufacturer to reduce price? If so patients shouldn't be used as pawns in a political game. I feel so sorry for those in the queue who would benefit from this game changing drug and am equally terrified that I'm next on the list for withdrawal.

Maybe this goes someway to explaining why I'm being deferred from treatment

Absolutely disgraceful. Peggy.


you can register a the above url address to send a petition to Jeremy Hunt opposing this decision

Dinasantos profile image
Dinasantos in reply to Pennycam

Do u have to live in the UK to sign? I am sure we (USA) all want to help!

yes you need a uk postcode (zip code) to be able to sign

Dinasantos profile image
Dinasantos in reply to Pennycam

Thank you!

I think I saw a comment that overseas friends can use the Westminster postcode - SW1A 0AA.

I do hope all sign - I see now over 10,000 signatures, but this needs to be just the start!

Signed and shared. Peggy

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