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Scotland approves ibrutinib for CLL

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11 Apr 2017

The decision upgrades previous guidance that only provided access for some.

The Scottish Medicines Consortium (SMC) has updated its guidance for the use of ibrutinib in treating chronic lymphocytic leukaemia (CLL), meaning that more patients will now be able to access this highly effective drug.

In 2016, the SMC approved ibrutinib’s use, but only in small subset of CLL patients (those with 17p deletion or TP53 mutation who were not suitable to be treated with chemotherapy).  This meant that another large set of patients, those that had received one prior therapy but didn’t have 17p deletion or TP53 mutation weren’t able to access it. 

This was very concerning at the time - ibrutnib provides a significant improvement in how CLL can be treated.  We are therefore delighted that the SMC has now approved ibrutinib as resubmitted by the company to ensure both groups of CLL patients can access ibrutinib.  This is already the case in England and Wales, so it is great news that NHS patients in Scotland will benefit from the same access to this treatment.

Bloodwise made a formal submission as part of SMC appraisal.  We asked patients to tell us their experiences of being treated with ibrutinib, and they were overwhelmingly positive.  Many described the huge impact it had on their quality of life.  Fatigue is often the biggest symptom, with patients telling us that before treatment with ibrutinib, they had difficulty getting out of bed.  However, many reported that this treatment dramatically reduced their fatigue levels, allowing to get up, leave the house, and start to make a return to a normal life.  Reductions in pain and night sweats were also reported.   

We were able to report these stories directly to the SMC as part of the appraisal process, and it is of great value for regulators to hear direct stories of how treatments have improved the lives of patients.  Many thanks to those who sent us their experiences of being treated with ibrutinib, and we are delighted for patients in Scotland that the SMC have taken this decision.