Scots denied cancer drug that prolonged man’s life and allowed him to marry

Scott McIntyre with his wife Paula on their wedding day
Scott McIntyre with his wife Paula on their wedding day
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A LIFE-CHANGING cancer drug which meant a terminally-ill Edinburgh man was well enough to get married and raise thousands of pounds for charity was today approved for widespread use in England, but it will continue to be denied to Scottish patients.

A LIFE-CHANGING cancer drug which meant a terminally-ill Edinburgh man was well enough to get married and raise thousands of pounds for charity was today approved for widespread use in England, but it will continue to be denied to Scottish patients.

Scott McIntyre, of Colinton Mains, passed away in August aged just 39, but not before the drug Zelboraf – which he was given as part of a clinical trial – slowed the progression of his cancer and allowed him to achieve many of his ambitions.

But following Scott’s death, his widow, Paula, was left heartbroken when the drug which extended her husband’s life by half a year and improved his quality of life immeasurably was denied to other patients after the Scottish Medicines Consortium decided that it did not offer value for money.

While Scottish patients have been denied Zelboraf ever since the SMC decision in September, the English equivalent of the SMC, the National Institute for Health and Clinical Excellence (NICE), today recommended that it is approved south of the Border, calling it a “step-change” in the treatment of metastatic melanoma – the most deadly form of skin cancer.

Paula welcomed the news, but said the fact that Scotland had become the only place in the UK where it is not routinely available to terminal melanoma patients was “unfair”.

She said: “I’m happy that people in England are going to get it, and it’s been approved because it works.

“The SMC have explained how restricted they are because of the budget they have got, but it still sticks in my throat.

“People in Scotland are making their NHS contributions so why should the people here be losing out? I’ve just been watching our wedding video and thinking of how much the drug turned Scott around. You can’t put a monetary value on things like that. He said to me it didn’t feel like he had cancer anymore.

“I’m hoping the drug company will continue to talk with the SMC and they can work out a price that’s agreeable to everybody. It’s sad that it’s come down to money and where you live. It’s not right.”

Scott, who worked as an IT officer for Dunedin Canmore Housing Association, was treated for metastatic melanoma in 2005 after he had a cancerous mole removed from his jawline.

He was given the all-clear, but in December last year he noticed a lump in his neck and began to experience abdominal pains. He was diagnosed at the Western General Hospital in January and told that he had just months to live.

His condition deteriorated rapidly and he found himself confined to bed, before he was put on the trial for Zelboraf, which works by targeting a specific gene that causes tumours to grow.

Cancer masses in Scott’s body reduced by 20 per cent and he was given a new lease of life, allowing him to propose to Paula, who he married in March, attend the FA Cup final and go on holiday to Barcelona.

He also recorded precious home videos for his three-year-old stepdaughter, Caitlin, and raised £18,000 in a golf marathon which he organised.

Leigh Smith, chair of Melanoma Action and Support Scotland and a melanoma survivor, said it was “frustrating” that the drugs remained unavailable in Scotland.

Another skin cancer drug, Yervoy, was also approved by NICE today, despite previously being rejected in Scotland.

Ms Smith said: “Zelboraf is absolutely fantastic if you are the right person for it. It can work quite dramatically, as it did with Scott McIntyre and it has done with other patients. They can go from being seriously ill to being almost as good as new.

“People will ask whether it’s fair to spend money on someone who has only got a short time left, but the majority of these people are young and working. They are taxpayers and should be given whatever’s available. If they get another year then something else might come along.”

Ms Smith called on the manufacturer to offer a better price if it decides to resubmit an application to the SMC, saying it “wouldn’t do” to have the life-changing drugs “sitting on a shelf”.

John Melville, managing director of Roche UK, which manufactures Zelboraf, said the drug offered a “clear advance” in the treatment of metastatic melanoma and called for a change in SMC policy, saying Scotland was “falling further behind” with new treatments. Zelboraf’s list price is £7000 for four weeks of treatment.

Jackson Carlaw MSP, the Conservative health spokesman, said it appeared that the SMC was significantly more stringent than its English counterpart and reiterated calls for the creation of a Scottish Cancer Drugs Fund.

Through the fund, which exists in England, £200 million a year is provided to pay for drugs which have not been approved for routine use.

Scottish patients are able to fill in an individual patient treatment request which is considered by individual health boards, but just 17 were submitted in Lothian last year, of which 13 were successful.

Mr Carlaw added: “Scottish patients are being disadvantaged. People whose life and quality of life could be extended by the creation of this fund are losing out and the SNP is refusing to do anything about it.”

An SMC spokesman said that Zelboraf had been turned down in September due to “weaknesses in the economic case”, but that a new application for approval would be welcome.

Lothian’s postcode lottery

ZELBORAF and Yervoy today became two more drugs that are now widely available in other parts of the UK but are denied to patients in Scotland.

In September, when Zelboraf was turned down by the SMC, it was claimed that there were 19 cancer drugs available in England that were not accessible in Scotland.

It has been suggested that Lothian patients could be among the biggest losers in the “postcode lottery”.

Patients in Scotland are able to make individual patient treatment requests for unapproved drugs.

But just 17 of more than more 350 throughout Scotland were made in Lothian last year.

Deaths hit record high

SKIN cancer has been on the rise across Scotland in recent years and claimed a record number of lives last year.

The 28 fatalities in Lothian in 2011-12 – and death rate of 3.3 per 100,000 people at risk – was the highest ever recorded.

Last month, Cancer Research UK and the Scottish Government launched a joint campaign after it emerged that cases of malignant melanoma had more than tripled among people aged between 15 and 34 in the last three decades.

The rise in skin cancer cases has largely been blamed by experts on an increase in foreign holidays and irresponsible sun bed use.