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.
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