Mottingham mum 'NICE played Russian roulette with life-saving cancer drug for dead son'

Maria Thurston pictured with son Ryan, 16, who died from a malignant melanoma

Maria Thurston pictured with son Ryan, 16, who died from a malignant melanoma

First published in News
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News Shopper: Photograph of the Author by , reporter

A bereaved Mottingham mum is begging for a cancer drug which ‘might have saved’ her 16-year-old son to be given to other sufferers.

Maria Thurston says health organisation NICE played "Russian roulette" over drugs given to her son Ryan Thurston who passed away last April from a malignant melanoma.

The 48-year-old is desperate for new drug Ipilimumab to be given straight away to sufferers of the type of skin cancer, which 2,000 people die from each year in the UK, and not used as a last resort to "save cash".

The mother-of-two is calling on News Shopper readers to lobby their MPs and NICE before March 18 and overturn a recommendation not to use the drug as the first treatment for the illness.

The mother-of-two told News Shopper: "It should be available for everybody as a front line. By the time he used it he was too far gone.

"I feel NICE has played Russian roulette with my son’s life.

"I am not saying he might still be here, but because he had another drug first we will never know.”

The teenager, who lived in Elmhurst Road, discovered a mole on his groin in October 2012 and was diagnosed with the disease in January last year.

The West Ham fan, who dreamt of becoming an electrician, was given drug Vemurafenib before being put on Ipilimumab by which time he was too weak to respond.

Ms Thurston says she has since met melanoma sufferers who were given Ipilimumab under clinical trials and are still alive seven years later.

Her battle comes at the end of a public consultation on Tuesday (March 18) with a NICE recommendation not to use the drug as the first treatment.

She said: "I can’t bring my son back but I can help real life people. I have met beautiful people who are going to die and it is because of cost.

"I am not going down without kicking and screaming."

Member of the Melanoma Taskforce, which fights for melanoma sufferers, Pauline Latham agrees that Ipilimumab should be given as the first treatment.

The Tory MP for Mid Derbyshire said: “The type of treatment they currently use only works on one per cent and the disease progresses in that time.

“Ipilimumab won’t work on everybody but it gives more people a chance.

“Although it is an expensive drug, in the grand scheme of things, it is better to get something that works for a greater number of people.”

NICE Chief Executive Sir Andrew Dillon said: “There are limited first-line treatment options available for patients with this type of advanced skin cancer.

"Which is why it is disappointing that the evidence put forward by the company did not conclusively demonstrate the degree to which the regulator approved dose1 of ipilimumab can extend life when compared with current standard care in the NHS.

“We understand that clinical trials are ongoing that could provide an answer to this important question, and are keen to see the recruitment and continued follow up of patients in these trials encouraged.”

The public consultation runs until March 18 and to have your say visit guidance.nice.org.uk/TAG/209

To find out more about a charity set up by Ryan's family to support melanoma sufferers visit http://ryanjustbeatit.co.uk/

Comments (2)

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2:32pm Sun 16 Mar 14

white rabbit9 says...

The word 'might' is not a definite.

'Run from the cure' is all about cancer, type it into youtube and watch it and learn something amazing.
The word 'might' is not a definite. 'Run from the cure' is all about cancer, type it into youtube and watch it and learn something amazing. white rabbit9
  • Score: 0

12:33pm Wed 19 Mar 14

Techvedic says...

Who can feel the burden better than the ones who are bearing it? What Maria is doing may appear something strange or even ridiculous to MP's and NICE, but being a bereaved mother only she can understand the cruse of the cancer. (Editor, Techvedic)
Who can feel the burden better than the ones who are bearing it? What Maria is doing may appear something strange or even ridiculous to MP's and NICE, but being a bereaved mother only she can understand the cruse of the cancer. (Editor, Techvedic) Techvedic
  • Score: 0

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