Ibrutinib for chronic lymphocytic leukaemia (CLL) patients.

Today a letter has been written to the editor at regarding treatment for chronic lymphocytic leukaemia (CLL) patients.

Today, The Times has published our letter outlining the detrimental effect NHS England’s decision to restrict the use of ibrutinib will have on relapsed chronic lymphocytic leukaemia (CLL) patients.

You can read the letter below.


Dear Editor,

At Leukaemia Care, access to appropriate treatment for patients is of paramount importance. We were actively involved during the NICE appraisal of ibrutinib for treating relapsed chronic lymphocytic leukaemia (CLL) patients.

CLL is an incurable leukaemia which overcomes conventional treatments, resulting in the need for multiple therapies. Each treatment causes a reduced quality of life, a reduced length of remission each time and eventually death.

Ibrutinib is an innovative treatment and alternative to conventional chemotherapy. In CLL, there is a developing therapeutic void to treat relapsed patients. Treatments like ibrutinib have high response rates and can improve quality of life for patients.

On 25th January 2017, NICE approved the use of ibrutinib for previously treated CLL patients. We are dismayed that ibrutinib will not be offered to these patients if they have relapsed more than three years after treatment. It is unclear how NHS England could implement such an arbitrary restriction outside of NICE guidance.

NHS Wales and Scotland have made no further restrictions to the guidance. This is creating a health equity issue. It is a cross-border postcode lottery, unfairly penalising English patients and their families.

Yours faithfully,

Zack Pemberton-Whiteley

Campaigns and Advocacy Director

Leukaemia Care

Signs and symptoms of leukaemia

Leukaemia can be hard to spot because the signs and symptoms are common to other unrelated illnesses. Knowing what to look out for could help you make the decision to visit your GP sooner for a blood test.

Read More