Leukaemia Care successfully campaigns for equal access in Scotland to a new treatment for CLL patients

Today, the Scottish Medicines Consortium (SMC) has announced the approval of ibrutinib in combination with venetoclax on the NHS in Scotland for patients with chronic lymphocytic leukaemia (CLL).

Webpage last updated: 11th September 2023

Following the approval of ibrutinib with venetoclax in England earlier this year, Leukaemia Care’s Chief Executive, Zack Pemberton-Whiteley commented that “this approval could be one the most significant advances in CLL treatment in the last decade, avoiding chemotherapy treatment for many newly diagnosed patients”. This article aims to explain why.

What’s the news and how was Leukaemia Care involved?

We are pleased to announce that the Scottish Medicines Consortium (SMC) have also now decided to approve this treatment for use in Scotland, after it was approved by NICE in England earlier this year.

Similar to our involvement in the NICE (National Institute for Health and Care Excellence) process in England, Leukaemia Care also submitted a written response to the SMC representing the views of CLL patients. A submission is created by drawing on experiences and data, and advocating for equity of access for Scottish patients.

We are very pleased that patients in Scotland now have equal access to ibrutinib with venetoclax as those in England, Wales, and Northern Ireland. 

Which patients will have access to this treatment?

The treatment can be used as a first treatment option for adults with chronic lymphocytic leukaemia (CLL) who have not received any treatment before. This includes being an alternative treatment for both those who are considered fit and unfit for intensive chemotherapy treatments such as FCR (fludarabine plus cyclophosphamide and rituximab), as well as both those with and without a genetic mutation known as del17p/TP53 mutation.

Why is the approval of this treatment important for patients?

CLL is a chronic long-term condition most common in those over 75. Effective treatments such as this one can help ensure that this disease no longer prevents people from living a normal lifespan. Previously, such effective treatments have largely been reserved for the second or third treatment option. 

Current treatments used first in CLL patients can be unsuitable, ineffective or intolerable for some people, and can have long-term side effects. Ibrutinib with venetoclax has been shown to be effective and have an improved side-effect profile. Having this treatment approved in the first line therefore marks a huge step forward in the treatment of CLL. 

Both ibrutinib and venetoclax are taken orally as tablets and are a fixed duration treatment, meaning that patients would only need to take the treatment for a limited period of time rather than continuously. Both of these factors are preferable to most patients with CLL, according to our Living with Leukemia survey.

Following the announcement of the approval by NICE, Nick York, Leukaemia Care’s Healthcare Liaison Officer and a CLL patient himself, said “Today’s announcement marks a significant moment towards improving the quality of life and survival of people living with CLL in Scotland. These combination therapies do not carry the risks associated with traditional chemotherapy used as first treatment.”

“This treatment offers many more patients of all types, the fittest, high risk and frailer groups, a chance of achieving a remission and living life without CLL symptoms or the need for long-term daily treatments and issues these may involve.”

“Extending the time before the next treatment means additional options remain available for the future, as there is less chance of developing treatment resistance and more time to return to living a more normal life again.”

How does this treatment work?

Ibrutinib (Imbruvica, Janssen-Cilag) is a small-molecule inhibitor of a protein called Bruton’s tyrosine kinase (BTK), which stops B-cell (lymphocyte) proliferation and promotes cell death.

Venetoclax targets a protein called B-cell lymphoma-2 (BCL-2), which allows cancer cells to stay alive. It does so by acting as a selective blocker of this protein. 

If you have any questions about this announcement, please contact advocacy@leukaemiacare.org.uk.

If you want to know more about what treatments are available for you, how treatment decisions are made or have any other question related to treatment, please contact us via our helpline 08088 010 444,  or send your question to WhatsApp on  07500068065 (services available Monday to Friday 9am – 5pm).

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