New service for CAR-T patients launches for World ALL Day

Leukaemia Care launches two new collaborative projects to support those undergoing CAR-T cell therapy.

Today on World ALL day, Leukaemia Care is pleased to announce 2 new sources of support for CAR-T patients; a suite of videos for parents and siblings of children having CAR-T therapy, and the provision of free accommodation and financial support for those currently undergoing CAR-T.

Chimeric Antigen Receptor T (CAR-T) cell therapy is a type of treatment that has revolutionised the treatment of acute lymphoblastic leukaemia (ALL) in the UK. It involves the removal of a patient’s T cells and altering them to better fit the cancerous cells. It requires significant inpatient stays in hospital, as well as a period of time where a person stays near to the hospital for a period of time after their treatment. The costs of the required stay near to the hospital is not covered by the NHS, nor are costs borne by those who wish to visit the person having treatment, yet visitors are important to the mental wellbeing of patients. Therefore patients and their loved ones can experience significant financial and logistical challenges associated with CAR-T therapy.

The first new project under this service is CAR-T Away from Home, a project in collaboration with Dalata Hotels Group. As part of the service, free hotel rooms will be made available by select Dalata Group hotels, within the distance required and for the time required by the treatment protocol, at no cost to the patient or their family. Additionally, a grant of up to £500 is available for those currently undergoing CAR-T therapy, awarded to help towards challenges such as reduction in income, travel costs or an increase in cost of food when staying away from home. 

Secondly, Leukaemia Care have worked with Great Ormond Street Hospital (GOSH) and the Children’s Cancer and Leukaemia Group (CCLG) to create videos to be viewed by those having CAR-T therapies. This is aimed primarily at those supporting a child having the treatment, particularly parents and siblings. The videos were created by researchers at Bath Spa University, using a technique where the videos were designed and filmed by the families, in order to best capture their experience in a way that will help others like them. They will no be kept by the two charities and GOSH on their respective websites, allowing as many patients and families to access them as possible.

The need for support for these patients is set to increase, with new types of CAR-T therapy currently being appraised by the National Institute of Health and Care Excellence (NICE) as potential options for patients as NHS treatment. Currently only those under 25 years of age with B cell acute lymphoblastic leukaemia are eligible, if they have had two prior therapies. This may be expanded to those over the age of 25, should the appraisals be successful, as well as trials in other leukaemias like CLL.

Both these services are part of a suite of materials and support for CAR-T patients under the new CAR-T service from Leukaemia Care. Leukaemia Care already provides information booklets to help those going through CAR-T to understand the medical process, as well as access to its advocacy service for those wanting to find out if they are eligible for CAR-T therapy. Most of the services also apply to those who may be having other cellular therapies that are still at an experimental stage (e.g. CAR-natural killer cell therapy), particularly the Away From Home Service. 

Zack Pemberton-Whiteley, Chief Executive at Leukaemia Care, said: “CAR-T is an exciting new form of treatment for acute lymphoblastic leukaemia (ALL) and other blood cancers. This World ALL Day, Leukaemia Care are pleased to announce these new support initiatives in collaboration with our partners Dalata Hotels Group, Great Ormond Street Hospital and CCLG. Leukaemia Care is dedicated to providing support to anybody affected by leukaemia. We hope the CART away from home initiative will ensure that going forward nobody has to decline CAR-T treatment due where they live or their financial circumstances.”

If you have any further questions about the service, our Advocacy and Policy and Public Affairs team are on hand to help. Email them at advocacy@leukaemiacare.org.uk.

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