Suki Sandhu, who lost her son Raj to brain tumour, has hailed a precision treatment for children that will now be offered by the National Health Service (NHS) in England after the National Institute for Health and Care Excellence (NICE) green-lit its rollout.
Sandhu, a Trustee at the Brain Tumour Charity, lost Raj to a high-grade glioma in 2018 when he was just eight years old. Gliomas grow in the brain or spinal cord and can be low-grade, where tumours grow slowly, or high-grade, where they grow more rapidly and can often be fatal.
She said: “I am so pleased this drug has been approved the use on the NHS. Many years ago, I had to make the decision to stop chemotherapy treatment for my son as he was suffering with horrible side effects after years of harsh treatment. It was one of the hardest decisions I have ever had to make as it was a clear sign we were running out of options, and it was likely I would lose him.
“We need kinder drugs and new treatments for those with brain tumours like this treatment and I am hopeful other families will go on to get access to these drugs and, hopefully, remain disease-free for longer and live good quality lives.”
Dabrafenib with trametinib has been found to stop the disease progressing for more than three times as long as standard chemotherapy for children with low-grade gliomas that have a specific genetic mutation, while helping many be spared the harsh side effects that can come with chemotherapy. The treatment will be available on the NHS in the coming months for young people aged 1-17 with low-grade or high-grade gliomas that have a BRAF V600E mutation. The combination treatment, which is given at home rather than in hospital, works by targeting the proteins made by the altered BRAF gene that are responsible for uncontrollable tumour growth.
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Aaliyah, 12, whose brain tumour was found during a routine eye appointment and has been taking dabrafenib and trametinib as part of a trial at Great Ormond Street Hospital, said: “I’m able to just take tablets twice a day and go to the hospital every few months, rather than be in hospital to have chemotherapy. I’ve been able to start secondary school with my friends and go to pretty much all my lessons. I’ve also been able to be at home, rather than staying in hospital for treatment, and carry on my hobbies such as majorette.
“I’m really pleased that other teenagers and children will now be able to have this treatment instead of chemotherapy, without needing to be part of a trial, it will make a real difference.”
Dabrafenib (Finlee ®) is given as dissolvable tablets which are taken twice a day and trametinib (Spexotras ®) is an oral solution which is taken once a day.
Professor Peter Johnson, NHS National Clinical Director for Cancer, said: “It is fantastic news that this new and kinder precision treatment for children and young people with this type of brain tumour will now be available on the NHS – it is a significant step forward in treatment that has been shown to be easier to take than chemotherapy and very effective in blocking the growth of the disease, helping children have a better quality of life for longer.
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“It can also be taken at home, meaning children and teenagers can spend less time in hospital having treatment and more time with their loved ones and doing things they enjoy – this is just the latest example of our efforts to make more effective treatments available for patients to improve the lives of those facing cancer, like Aaliyah.”
*Info: Brain Tumour Charity
