Mother’s relief when son gets cancer drug on NHS

VaselineJuly 24, 2024

0 2 minutes read

Mother’s relief when son gets cancer drug on NHS

image caption, Alexander’s mum recently got her first NHS prescription for her medication

Author, Aurelia Foster
Role, BBC news
26 minutes ago

A mother who was spending £11,000 every three months to pay for her son’s brain tumor drugs has spoken of her relief after the drugs became available on the NHS.

Alexander Josephs, 10, has been taking the drug for the past two and a half years since it was shown to slow the growth of his type of tumor.

His mother turned to crowdfunding to privately obtain the treatment – a combination of the drugs dabrafenib and trametinib.

The National Institute for Health and Care Excellence (NICE) approved the drug in April.

“More Than We Could Handle”

Alexander’s mother Rhonda Josephs, from Bromley, south-east London, said the family had to turn to crowdfunding for donations.

“Having a child with cancer, then having to raise loads of money – it was almost more than we could handle.

“For the financial stress to be removed, I can’t put it into words.

“It felt so strange to be able to walk past the cashier and not hand over £11,000 and go to the pharmacy like any other person.”

Alexander has glioma, the most common type of brain cancer in children.

The two drugs work together by blocking the growth signal that comes from the mutated BRAF protein and can slow or even stop tumor growth.

NICE – the body that decides what treatments should be available on the NHS – has approved it for use in patients aged one and over with glioma with the BRAF V600E gene mutation.

Followed clinical trials undertaken at Great Ormond Street Hospital.

In addition to taking the drug, Alexander underwent three rounds of surgery and radiation therapy.

He is now in remission but continues to take the treatment.

Part of the money raised through crowdfunding allowed Alexander to visit Germany to have a personalized cancer vaccine that could help prevent the disease from returning.

image source, Brain tumor charity

image caption, Alexander underwent surgery and radiation therapy, as well as medication

Mrs Josephs described her son as “perfectly fit and healthy, really strong and keen on sports” before his condition was discovered in 2020.

The first sign of illness was a seizure that “lasted a very long time … it was terrifying.”

When Alexander returned to hospital three months later after another seizure, scan results showed he had a brain tumour.

This turned out to be an aggressive glioma that had grown and spread to the spine.

Doctors told the family Alexander was in remission in January, leaving Ms Josephs “cautiously optimistic”.

“They were words we’ve been waiting to hear,” she added. “Alexander is back in sports and just becoming a normal little boy again. He’s doing remarkably well.”

“A huge challenge”

Cameron Miller, director of strategy and external affairs at the Brain Tumor Charity, said the charity had previously funded research that helped identify BRAF mutations in brain tumours.

“When a breakthrough came from clinical trials, we worked with NICE to make sure the patient’s voice was heard.

“Our representatives, including a patient expert, attended the scoping meeting and provided key evidence to the committee meeting. We are therefore delighted with this result.

“However, Alexander’s struggle underscores the immense challenge of finding cures for this complex and unpredictable group of diseases.”

Ms Josephs added: “I feel like children with brain tumors are being written off and this shows they shouldn’t be.”

VaselineJuly 24, 2024

0 2 minutes read