Ibrutinib will continue to be available to all patients who are currently receiving it, regardless of any future NICE decisions and the drug will be funded by the pharma company Janssen for those patients. Janssen are the makers of the drug.
Ibrutinib has been available to people living with WM in England and Wales who have already undergone at least one round of treatment, usually chemotherapy. In December 2021, it was approved by the Scottish Medicines Consortium (SMC) for the same use in Scotland.
WMUK took part in the recent NICE appraisal for Ibrutinib, to ensure patients can continue accessing this second line treatment option, by presenting the patient perspective from a cross section of current Ibrutinib users and putting forward clinical and patient experts. Despite NICE acknowledging Ibrutinib has a clear patient benefit, they concluded there was significant uncertainty in the data provided by the drug company, and they could not support a positive recommendation of the drug at this stage.
“It’s incredibly disappointing to hear that the uncertainty in the data submitted has led to this decision, but this isn’t the end of the road,” says Jane Nicholson, WMUK CEO. “There is still a further stage and review to go through, and we want to reassure the WM community that we are working incredibly hard, both with NICE and Janssen, to ensure people living with WM can still access Ibrutinib which is a step change in second line treatment options for WM patients. We sincerely hope that Janssen will do all they can to find a compromise and resolution that changes the NICE decision.”
Ibrutinib is a type of drug called a BTK inhibitor. In people with WM, cells called B-cells grow out of control. Within the cells there are proteins, which act as chemical messengers, telling the cells to grow and divide. Ibrutinib helps by blocking one of these proteins called Bruton’s tyrosine kinase (BTK). Blocking the BTK ‘messages’ can stop the B-cells dividing, halting or slowing the growth of the disease.
The drug is taken daily as a tablet. There isn’t a specific course for the treatment – people take it for as long as it is providing benefit, which may be several years.
As always, we want to say a big thank you to everyone who contributed to the WMUK evidence presented to NICE, especially our group of patients who spoke honestly and passionately about their experiences of using Ibrutinib, and our patient expert who kindly attended the committee hearing itself.
We will continue to update you during this ongoing process, the next committee stage is scheduled for March or April 2022.