After a new medicine is clinically approved, the next question is should it be made available on the NHS? In the UK, this decision lies in the hands of independent funding bodies who carry out what’s known as a Health Technology Assessment (HTA). These assessments are vital to ensuring the right people benefit from innovative treatments. HTAs involve in-depth technical evaluations of scientific and economic evidence for the new treatment to determine whether it should be funded, but the patient perspective is just as important. Analysing data on quality of life isn’t the same as hearing what it feels like to live with lymphoma or undergo treatment. Lymphoma Action is regularly invited to represent the patient voice in HTAs for lymphoma and related blood cancers. Sometimes we will collaborate with other blood cancer charities to put forward joint submissions.

In England, Wales and in the Department of Health in Northern Ireland, the National Institute for Health and Care Excellence (NICE) organises the HTA process. In Scotland, we feed into the Scottish Medicines Consortium (SMC). Here’s how we got involved in a recent NICE HTA and helped ensure a powerful new treatment reached those who need it most.

The power of the patient voice

Lisocabtagene maraleucel, a new CAR-T treatment, was being considered for people with certain B-cell lymphomas who have not responded to, or who have relapsed within 12 months of first line chemotherapy, and would be fit enough for a stem cell transplant.

1. The treatment received clinical approval in October 2023. In January 2024, we were invited to be a stakeholder consultee for the HTA process.

2. To capture real patient experiences, a questionnaire was sent to volunteers identified through our private Facebook support group. In March 2024, we completed a patient expert submission, using insights and quotes from the information sent to us, as well as our knowledge and experience of working with our community.

3. We attended a committee meeting in October 2024.

4. NICE initially chose not to recommend lisocabtagene maraleucel in November 2024. Details of the decision were released for consultation and public comments. We submitted a comments form, asking the committee to reconsider. Our response highlighted:

• the psychological impact of fearing relapse without suitable treatment options
• the importance of having multiple treatment choices, especially those with fewer side-effects
• the impact of these side-effects on the patient and their loved ones
• the advantage of shorter hospital stays.

Data from the Lymphoma Coalition Global Patient Survey 2024 was used as supporting evidence.

5. We attended a second NICE committee meeting as observers in January 2025.

6. In March 2025, NICE recommended lisocabtagene maraleucel as a standard treatment for eligible patients in England.