Leukaemia Care successfully campaigns for access to potential curative treatment for adult ALL patients in Scotland

Today, the Scottish Medicines Consortium (SMC) has approved CAR-T therapy on the NHS in Scotland for all suitable adults over 25 with acute lymphoblastic leukaemia (ALL).

Webpage last updated: 9th October 2023

What is the news? 

Today the SMC has announced that CAR-T therapy will now be approved for use on the NHS in Scotland. It will be used to treat eligible patients with acute lymphoblastic leukaemia (ALL) who are over the age of 25. Until now, CAR-T therapy has only been available to younger ALL patients on the NHS, those aged 25 and under.

We are pleased that ALL patients over 25 in Scotland now have equal access to CAR-T as those in England, Wales, and Northern Ireland. The National Institute for Health and Care Excellence (NICE) in England provisionally approved this treatment earlier this year.

Who are the SMC and what do they do?

The role of the Scottish Medicines Consortium (SMC) in Scotland is to decide if a treatment is cost-effective and therefore suitable to be used on the NHS. They do this by comparing the treatment’s effectiveness and price to existing treatments, if there are any. The process therefore involves looking at clinical trial data, information on the cost of delivering the new drug. A committee of people at the SMC then makes a recommendation based on the evidence they have.

Why has the SMC made this decision?

The SMC reviewed a study which suggested that people having this CAR-T treatment may live longer and have more time before their disease relapses.  They also looked at evidence which suggested that this CAR-T treatment can cure B-cell ALL, with the percentage of patients achieving overall complete remission in one of the studies reviewed by the SMC being 71%. The SMC therefore deemed CAR-T as being an effective, possibly curative treatment for B-cell ALL.

Which groups of patients can access this treatment? 

CAR-T will be available for relapsed/refractory B-precursor acute lymphoblastic leukaemia in adults (also known as B-cell ALL). CAR-T is therefore only to be used in patients for whom other treatments have not worked. 75-80% of ALL cases are classified as B-precursor ALL. The decision to treat a patient with CAR-T will be made by the patient’s clinician. 

If you are unsure whether this is a treatment which might be available to you, please consult your doctor or clinician. 

What does the treatment involve and how does it work? 

CAR-T refers to chimeric antigen receptor T-cell therapy. CAR-T describes the process of removing the patient’s T cells and genetically altering them to make them recognise and target specific cancer cells before they are reinfused back into the patient. 

There are multiple types of CAR-T products. This is the first CAR-T treatment to be approved for adults with ALL in Scotland. This particular CAR-T treatment is called brexucabtagene autoleucel, known by the brand name Tecartus. It is manufactured by the pharmaceutical company Kite, which is part of Gilead Sciences. 

The CAR-T treatment process requires a number of steps that take place over several weeks. The aim of CAR-T is for the modified T cells to stay in the body for a long time, recognising and attacking the specific cancer cells to give the patient the best chance of long-term remission. 

How was Leukaemia Care involved? 

Leukaemia Care submitted a written response to the SMC representing the views of ALL patients by drawing on experiences and data, and advocating for adults to have equal access to this potentially life-saving treatment. Sophie Wheldon is Leukaemia Care’s Advocacy Officer and also an ALL patient herself. Sophie spoke to the SMC as a patient expert, drawing on her personal experience to advocate for all ALL patients. Sophie was treated with CAR-T therapy on the NHS in England in 2019, as she was eligible for the treatment due to being under 25 at the time. Sophie has now been in remission for 4 years and describes CAR-T as saving her life. 

Sophie and Leukaemia Care felt strongly that CAR-T should be a treatment available to all ALL patients regardless of their age. On the announcement of the approval of this treatment by the SMC, Sophie commented:

“I am so pleased to hear that CAR-T therapy is going to be available to ALL patients over the age of 25 in Scotland. This is something that I have felt passionately about from the moment I knew I needed CAR-T therapy, as that at the time, my sister would not have been eligible if it were her in my position as she was over the age threshold.

This decision will bridge a big unmet need for patients who will undoubtedly benefit from the treatment, and it will hopefully allow more patients to achieve remission where their other treatment options have previously been extremely limited or completely exhausted.”  

To find out more about CAR-T, including what is involved at each stage of the treatment, you can read our more in-depth booklet on CAR-T therapy here.

If you have any further questions about the drug announcement, our team is here to help. Email them at advocacy@leukaemiacare.org.uk.

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