NHS patients denied the drugs that have kept ‘Bowel Babe’ Deborah James’ cancer at bay

Picture credit: Youtube

National Institute for Health and Care Excellence (NICE), the organisation that produces guidance and advice for drugs that the NHS can prescribe, has rejected a drug combination for people with a rare type of bowel cancer.

The targeted treatment combo of encorafenib and cetuximab was being trialled for patients whose cancer has spread and has a rare error in the BRAF gene, once they've already had chemotherapy. The trial is known as The BEACON Trial. 

Deborah James, who was diagnosed with Stage 4 bowel cancer at the age of 35, has been on the trial. She is known for her blog, 'bowel babe', her podcast ‘You, me and the big C’ and column for the Sun online, Things Cancer Made Me Say.

Earlier this year, she announced she was ‘cancer-free’. 

For someone with advanced cancer to say they are ‘cancer-free’, means there is No Evidence of Active Disease (NEAD). It does not, however, mean that the cancer is cured.

Advanced cancer (also known as metastatic or stage 4) is incurable and treatments are focussed on extending life. For patents with advanced bowel cancer, 14% of people are likely to still be alive 5 years after they are diagnosed.

Deborah, who has two young children, is naturally delighted with the fact her bowel cancer has responded so well to treatment. 

She said in a TV interview: 

It is a dream, to be in my position. To suddenly go from planning your death, and I genuinely was planning my funeral. To now suddenly think, now I have a future – it’s a really hard mind shift.

In her column for The Sun, Deborah wrote about The BEACON Trial.

'In the last three years, researchers have been trialling a mix of targeted drugs to blast this mutation. Known as the Beacon trial, it's been funded by Cancer Research UK and the results so far have been really positive.'

Deborah added: 'Don't get me wrong, this is no cure. Rather, it's the kind of miracle drug that gives people like me more time. More time with our husbands, kids, family and friends. It gives people months extra, and frankly faced with my prognosis I will take extra weeks, even days.'

In the column, which was written last year, Deborah said: 'Since the trials have shown promising results, the drugs are being fast-tracked to market. It means they will likely become the first chemo-free treatment for bowel cancer in the UK.'

Trial results showed those taking this drug combination lived for an average of nine months compared to 5.4 months for those taking one of two different combinations of chemotherapy and cetuximab.

NICE’s decision will be a disappointment to other bowel cancer patients who have been following Deborah’s progress. NICE had been concerned about the trial’s design and felt it was flawed. The decision has been described as initial, so there is still a possibility that the drug may be given the go ahead in the future.

Cancer Research UK says the decision not to recommend the combination will be 'disappointing' for those affected and urges manufacturers and the NHS to work together to resolve current uncertainties around its cost-effectiveness. Patients who are privately-funded may still be able to access the drug.

Consultant Laparoscopic & Colorectal Surgeon Mr Austin Obichere says that early diagnosis is important when it comes to survivorship: 'Bowel cancer is a major health problem in the United Kingdom. Men and women are equally affected by the disease and improved survival is dependent on the diagnosis and surgical treatment of early stage disease (no cancerous spread to the lymph glands or distant organs).'

He added

It is now widely accepted that most bowel cancers arise from pre-cancerous polyps, and that early detection of these polyps through screening offers the opportunity to prevent bowel cancer developing and to treat the condition before it progresses to an advanced stage.

Talk to your GP if you have these symptoms:

  • Changes in your bowel habits, including diarrhoea or constipation 

  • Your stools alter in in their consistency 

  • Rectal bleeding or blood in your stool

  • Abdominal bloating

  • Stomach pain

  • Passing wind more frequently

  • A feeling that your bowel doesn't empty completely

  • Tiredness

  • Unexplained weight loss.

Find out about treatment options here

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