A lack of clinical trials in the UK for children diagnosed with incurable diffuse intrinsic pontine glioma (DIPG) brain tumours is forcing parents to seek costly treatment abroad.
A report in the Mail on Sunday last weekend (19th May), highlighted the plight of desperate families who turn to crowdfunding websites to raise hundreds of thousands of pounds, to take their children to medical centres, often in Germany, Mexico and the US.
The report featured the tragic case of seven-year-old Jasmine Freeman, who was diagnosed with a DIPG, also known as a diffuse midline glioma, after experiencing double vision in February 2023.
DIPG tumours are commonly found around the brain stem, which links the brain to the spinal cord, meaning that surgery is not usually an option. Radiotherapy can be used to slow progress but cannot cure it.
Jasmine’s father, Anthony, a Brain Tumour Research supporter from Berkshire, told the Mail on Sunday: “We were told that she likely only had 12 to 18 months even if she underwent radiotherapy. I refused to believe that there was simply nothing that they could do.”
The family raised £246,000 for overseas treatment but, sadly, Jasmine died in January 2024, less than a year after diagnosis.
Access to clinical trials is a key issue faced by brain tumour patients in the UK, with only 5% of patients entering the limited number of clinical trials available. Our 2024 Manifesto asks the Government to commit to increasing participation of adult and paediatric brain tumour patients in clinical trials.
Our Director of Research, Policy and Innovation, Karen Noble said: “We know of at least five families who last year were raising money to travel overseas. The numbers taking these last-chance options shames the UK.
“Of course parents will travel the four corners of the Earth to find hope, but this hope must be based on science and clinical evidence. Our position isn’t one of criticism of the families, it is one of complete understanding and outrage that this situation has been reached as the UK slides down the list of countries where clinical trials are being instigated.”
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