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NICE fail to back 'miracle' drug credited with saving Boughton Monchelsea man's life

When a father from Boughton Monchelsea went to his doctor complaining of a sore throat he did not realise months later he would be in a hospice, dying of lung cancer.

Simon Lamont-Brown, of The Green was told he had an inoperable stage four tumour in February 2015.

Chemotherapy initially halted the progression of the disease but by August the cancer had spread and he was in a Maidstone hospice saying goodbye to his loved ones.

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Simon Lamont-Brown from Maidstone was given weeks to live last summer but is still alive after getting access to a 'miracle' cancer drug
Simon Lamont-Brown from Maidstone was given weeks to live last summer but is still alive after getting access to a 'miracle' cancer drug

But then, on his 50th birthday, something amazing happened.

"Just by chance the day I was told my chemotherapy had become ineffective this immunotherapy drug was licensed for the UK," said Mr Lamont-Brown.

"They said they would get me on it as soon as they could - but we had to wait and all that time my health deteriorated badly".

The drug was called nivolumab, it works by targeting molecules called lymphocyte receptors. Blocking this receptor’s activity is believed to encourage body’s immune system to attack cancer cells.

For Mr Lamont-Brown, the results were impressive. Within 10 days he was feeling better and walking around.

He said: "I was in the hospice for about a fortnight and then I went home."

Simon Lamont-Brown left the hospice weeks after starting the new treatment
Simon Lamont-Brown left the hospice weeks after starting the new treatment

Regular CT scans showed the growths in Mr Lamont-Brown's lung had retreated, and the size of the tumours had reduced.

"I feel fine now," said the former merchant seaman. "I don't take any supplementary medicines. I have no side effects and I have a normal life now.

"My oncologist called it 'the Lazarus effect' because I just rose from the dead.

"I appreciate it doesn't necessarily have the same outcome for everybody who has it but for me it has been fantastic."

Simon Lamont-Brown with wife Nadine
Simon Lamont-Brown with wife Nadine

The treatment has given Mr Lamont-Brown a second chance, but he was only able to get hold of the new drugs because he had private healthcare and insurance.

Now a draft ruling by independent advisory body the National Institute for Health and Care Excellence (NICE), could mean nivolumab will stay forever out of the hands of NHS patients with some forms of advanced lung cancer.

Mr Lamont-Brown said: "It is very sad but I wish it could be available for everyone in my condition because of the results it has had with me."

A NICE spokesman said while promising, the new treatment is not a cost effective alternative to other existing drugs and therefore the body could not recommend its usage to the NHS.

Simon Lamont-Brown with family
Simon Lamont-Brown with family

Nivolumab costs £439 per 40-mg vial, not including VAT. This would come to a sum of about £31,960 for an average course of treatment.

Bristol-Myers Squibb, who created the drug, have offered discounts including paying for patients after they have been funded by the NHS for more than a year.

"My oncologist called it 'the Lazarus effect' because I just rose from the dead." - Simon Lamont-Brown, cancer survivor

Johanna Mercier, general manager of BMS UK and Ireland, said: "Unfortunately, NHS lung cancer patients are still not able to access this potentially life-extending medicine.

"We hope that NICE and the Department of Health will recognise the potential of nivolumab to increase survival in cancer and we will continue to work with them to find an answer for patients and their families.”

The draft NICE guidance has been shared with consultees, which includes doctors, patients and professional groups, who now have four weeks to provide a response to NICE’s decision. To see the guidance, click here.

A final decision will be taken on Wednesday, June 15.

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