Grieving widow’s agony after NHS says medicine that prolonged husband’s life is too expensive

Just weeks previously, fit and healthy Scott had been handed the catastrophic news that he had metastatic melanoma – the most dangerous and aggressive form of skin cancer – and had just months to live.

But with his condition deteriorating rapidly, he was accepted onto a clinical trial for a new drug, Zelboraf – or vemurafenib – which could potentially slow the spread of the disease.

It was to give Scott and Paula their lives back.

The couple married, while Scott found he was suddenly well enough to rattle through other tasks on his ‘bucket list’ of things he wanted to do before he died – including making a home video for his three-and-a-half-year-old step-daughter, Caitlin.

Scott passed away two weeks ago, aged just 39, but with many of his ambitions fulfilled.

But grieving Paula has said she has this week suffered “another blow in the stomach”, after the drug which prolonged her husband’s life was deemed too expensive to be given out to others on the NHS.

The Scottish Medicines Consortium (SMC) ruled that the drug, which has a list price of £7000 for four weeks of treatment, did not represent value for money and refused to sanction its use routinely for other patients with terminal melanoma.

Paula, 36, has vowed to fight the decision so that other patients and their families can benefit from Zelboraf.

“We would have lost Scott in February if it wasn’t for this drug,” she said. “It’s just another blow in the stomach to think that other people won’t have their symptoms alleviated and their families won’t have the opportunity to have that precious time.

“I’m dumbfounded at this decision. The drug brought Scott back from death – within days he felt better. He went from being bedridden to coming home and playing golf to raise money for charity.”

Scott, of Colinton Mains, worked as an IT officer for Dunedin Canmore Housing Association. He had been treated and given the all-clear for melanoma in 2005 when he had a cancerous mole removed from his jawline.

However, in December last year, a lump appeared in his neck, close to the site of the original mole, and he started to suffer from abdominal 
problems. In January, after being diagnosed at the Western General Hospital, he was told he had just months to live.

His condition deteriorated rapidly before he was put on a medical trial for Zelboraf, which meant travelling to the Beatson Cancer Centre in 
Glasgow for treatment.

The drug caused the size of cancer masses in Scott’s body to reduce by more than 20 per cent, and meant he was healthy enough to complete many of the bucket list ambitions.

A golf marathon raised £16,000 for the Beatson Cancer Centre, he went on holiday to Barcelona, filmed hours of camcorder footage for Caitlin to watch at important stages of her life, went to the English FA Cup final, enjoyed countless family days out taking 2000 photos and got married to Paula, after he proposed on Valentine’s Day with a Haribo sweet ring.

Scott, who would visit the gym five times a week before he became ill, wed Paula at the Point Hotel in the Capital in March.

Paula added: “It’s heartbreaking that we lost Scott, but we got so many memories we’ll cherish in those last months. They say it’s down to cost but to us the memories are ­priceless. Scott was so brave – the glass was always half full. He was an amazing person and was more worried about the people he was leaving behind than himself.

“He was so passionate about taking part in the study. At the moment I’m concentrating on me and my daughter, but once I get a little bit stronger I’ll be getting back out there and fighting his case. He would have wanted other people to get the same chance as him and the extra time.”

The added months and life quality credited to the drug also allowed the couple to prepare Caitlin, who called Scott daddy bear, for the loss. Paula, a training consultant, said: “She says he’s in the sky. We got a star in his name for his birthday. If she’s missing him she just looks up at the star. We knew what was coming and the drug gave us the chance to think of what to tell her.”

There are no places left on the drug trial Scott was on.

A spokesperson for the SMC said that while the drug would not be routinely available through the NHS, health boards could pay for it on a case-by-case basis.

The SMC spokesperson added: “We were disappointed not to be able to recommend the medicine due to weaknesses in the economic case made by the manufacturer and the balance of costs and benefits meant the medicine was not considered to offer value for money.”

• What is Zelboraf?

THE drug which was used to extend and improve the quality of Scott’s life, taken as a pill, has been developed over the past seven years.

It has been designed to target a specific gene, known as the BRAF gene.

Around half of metastatic melanoma patients have the faulty BRAF gene, which causes tumours to grow.

Before they are given the drug, patients will be tested for the gene. If it is present, the drug will work by effectively ‘turning it off’, halting the spread and growth of the tumour.

The main alternative is chemotherapy, which can have limited results and severe side-effects in patients who are already very ill.

A study showed that 84 per cent of patients on the drug were still alive after six months, compared with 64 per cent of those on chemotherapy.

• VALUE FOR MONEY?

THE Scottish Medicines Consortium (SMC) decides which new medicines are good value for money.

A New Drugs Committee will look at information from a manufacturer and price before providing a recommendation to the SMC’s eight executive members, who make a final decision.

The consortium includes clinicians, pharmacists, health economists, the pharmaceutical industry, the public and the Scottish Government.

Zelboraf is available in England on the NHS through the Cancer Drugs Fund, although it has not yet been approved by NICE – the equivalent of the SMC.

The Cancer Drugs Fund offers £200m of funding for drugs which have not yet been approved,

but there are no plans for a similar scheme north of the Border.

It has been claimed that there are 19 cancer drugs available in England that are not offered to patients in Scotland.

ANALYSIS

By Vicky Crichton

Public affairs manager at Cancer Reserach UK

Treatments at the end of patients’ lives can give extra weeks or months of life which might otherwise have been denied to them.

These precious extra months can mean being around for the birth of a grandchild, going on the trip of a lifetime or spending precious extra time with loved ones. It’s incredibly difficult to put a price on this.

At present, the pharmaceutical industry sets the price for a new drug and then the Government decides whether this represents “value for money” in terms of things like potential to extend life, quality of life and the number of patients

who stand to benefit.

But this system has been criticised and for many

years politicians have been trying

to devise a better one.

Their answer is a new scheme called “value-based pricing”, due to come into force across the UK in 2014, which the Government hopes will incentivise the development of innovative treatments while representing good value for money.

To work, it needs to be flexible enough to include all the things that are important to cancer patients – such as extra time at the end of life, and improvements to quality of life – while at the same time balancing the interests of the health industry and drug developers.

But it’s not clear exactly how this will work in practice .

What’s needed now is for the Government to publicise detailed plans, so we can be reassured about how the interests

of stakeholders – and above all patients – will be involved in setting the price of new treatments in the future.