The charity Anthony Nolan needs your help to understand more about the experiences and views of people who have received treatment with Kymriah (a type of CAR-T therapy) for relapsed or refractory B-cell acute lymphoblastic leukaemia. We are interested in hearing from carers, family members and patients themselves. This will help us advocate for the NHS to continue funding this treatment over the long term for future patients in England and Wales.
Why am I being asked to complete this survey?
Anthony Nolan has been asked by the National Institute for Health and Care Excellence (NICE) to provide patient and carer views on whether Kymriah should continue to be made available in the future to people in England and Wales for the treatment of relapsed or refractory B-cell acute lymphoblastic leukaemia in people aged 25 and under. At the moment, Kymriah is available on a temporary basis through the Cancer Drugs Fund - NICE is considering whether or not to make it available on the NHS in England and Wales on a permanent basis.
NICE is responsible for providing guidance on treatments and health technologies (such as CAR-T) for the NHS. It is the role of Anthony Nolan to represent and amplify the voice of the stem cell transplant and CAR-T patient and carer community. We do this by listening to your experiences and integrating them into our written response. This response supports submissions from clinical experts and other relevant stakeholders and will inform the final decision that NICE takes about Kymriah for B-ALL.
What can I do to help?
If you or a loved one has experienced relapsed or refractory B-cell acute lymphoblastic leukaemia (B-ALL) and has received treatment with the CAR-T product Kymriah (tisagenlecleucel), we would greatly appreciate your time. You can contribute by completing this survey, however, if you would prefer to answer questions over the phone please email public.affairs@anthonynolan.org to arrange a time to chat. Completing this survey should take around 10 minutes and hearing from you will provide crucial insight to help as advocate on behalf of patients and families. This survey will remain open until 3rd October 2023.
Thank you so much for your time and if you have any questions, please do not hesitate to get in touch with the Anthony Nolan Policy and Public Affairs team via public.affairs@anthonynolan.org. Topics discussed in this survey may raise difficult and challenging experiences. If you require support, our helpline number is 0303 303 0303. Our patient services team can also be contacted via email at patientinfo@anthonynolan.org.
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Please refer to our privacy policy (www.anthonynolan.org/privacy-policy) for further information on how Anthony Nolan uses and stores your personal information.
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