NHS England Failing to Fund Ibrutinib in line with NICE Guidance 

NHS England Failing to Fund Ibrutinib in line with NICE Guidance 

Many of you will have seen the articles in The Times this weekend which have revealed an issue of immense importance to people living with Chronic Lymphocytic Leukaemia by highlighting NHS England's denial of patient access to ibrutinib despite NICE approval. 

 

What has The Times revealed?

NHS England is currently failing to fund ibrutinib in line with NICE guidance. NICE recommends that ibrutinib alone is recommended within its marketing authorisation as an option for treating CLL in adults:

  • who have had at least 1 prior therapy or
  • who have a 17p deletion or TP53 mutation, and in whom chemo-immunotherapy is unsuitable and
  • only when the company provides ibrutinib with the discount agreed in the patient access scheme

 

There is no reference to a remission timeframe within this NICE recommendation, yet The Times has revealed that NHS England has said that it will not prescribe ibrutinib if CLL patients have been in remission for more than three years.

CLLSA's response 

CLL is an incurable blood cancer and the most common form of leukaemia in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential. 

Priority recommendations from the All-Party Parliamentary Group (APPG) on Blood Cancer highlighted that “blood cancer is more dependent on the development of new drugs and being able to access them, in order to continue improving patient outcomes.” There is already enough emotional damage with having to live with cancer for the rest of our lives, compounded by the fear of the future and disease progression and the unpredictability of the disease – it is unacceptable for NHS England to compound this fear and anxiety further by denying patients access to NICE-approved medicines with the introduction of arbitrary rules. 

CLLSA will be doing everything in its power to ensure this intolerable situation is fully investigated and overturned to ensure that patients have access to ibrutinib in line with the criteria outlined by NICE. We will be contacting NHS England, NICE and Jeremy Hunt, Secretary of State for Health and Social Care, and the APPG on Blood Cancer to demand that NHS England follow their legal obligations to fund drug indications considered by NICE to be cost-effective. 

 

How you can help

You can help my contacting your local MP and NHS Trusts to highlight this issue and put pressure on them to ensure CLL patients have access to ibrutinib in line with NICE guidance. The qualifying criteria for patient access detailed within the NICE recommendations for ibrutinib make no reference to a remission period to qualify for treatment. 

You can find your MPs contact details and message them athttps://www.writetothem.com.

Thank you for your support at this crucial time. 

 

The following copy may help you to write to your MP but please make this letter personal as copy and paste emails are often blocked: 

 

 

Dear MP,

 

The Times newspaper has this weekend revealed that NHS England is failing to fund patient access to ibrutinib despite NICE approval. 

NICE recommends that ibrutinib alone is recommended within its marketing authorisation as an option for treating Chronic Lymphocytic Leukaemia (CLL) in adults:

  • who have had at least 1 prior therapy or
  • who have a 17p deletion or TP53 mutation, and in whom chemo-immunotherapy is unsuitable and
  • only when the company provides ibrutinib with the discount agreed in the patient access scheme

There is no reference to a remission timeframe within this NICE recommendation, yet The Times has revealed that NHS England has said that it will not prescribe ibrutinib if CLL patients have been in remission for more than three years.

 

NHS England has a legal obligation to fund drug indications considered by NICE to be cost-effective.

CLL is an incurable blood cancer and the most common form of leukaemia in adults in the UK. CLL is not treatable using surgery or radiotherapy, so access to effective and well-tolerated drug treatments is essential. 

Priority recommendations from the All-Party Parliamentary Group (APPG) on Blood Cancer highlighted that “blood cancer is more dependent on the development of new drugs and being able to access them, in order to continue improving patient outcomes.” 

As a CLL patient and member of the Chronic Lymphocytic Leukaemia Support Association(CLLSA) - the only UK charity dedicated to providing education, support, and advocacy to help empower people living with CLL – please can I call upon your support to raise this issue in Parliament and demand that NHS England fund CLL patient access to ibrutinib for all patients for whom NICE has deemed it to be cost-effective so that patients in[insert your locality]have the access they need and deserve. 

 

Yours sincerely, 

[insert name]