The cost of staying alive

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By Sarah Winstanley - Freelance journalist/feature writer and PR consultant

An extract of the article below appeared in the Daily Express

A new 'miracle drug' which could prolong the lives of kidney cancer patients across the UK is being denied because it costs too much.

The potentially life-saving drug, Sutent has been shown to reduce tumours dramatically but individual NHS trusts are refusing to fund it saying there is not enough proof it works.

Only around 50 of the 6,700 patients diagnosed with kidney cancer in the UK have access to the drug, mostly through clinical trials, by paying privately or in rare cases, by persuading their local authority to fund it.

But with the drug costing up to £40,000 per year, most patients don't have the funds to pay for the treatment themselves; others are selling their homes to pay for it.

Meanwhile, individual NHS trusts are reluctant to foot the bill because no guidelines have been issued for the use of the drug by the NHS's National Institute for Health and Clinical Excellence (NICE), which produces guidance on the use of new medicines.

Although the drug was licensed for use as a first-line cancer treatment in January this year, without NICE approval, it is not deemed as a cost-effective treatment.

But this week NICE revealed it has not been asked to appraise either Sutent or Nexavar, another new anti-cancer drug, by the Department of Health.

In a statement it added: 'There is no ban on prescribing any drug within its licensed indications in the absence of NICE guidance. Where NICE guidance is not available, licensed drugs and devices are assessed at a local level within the NHS to decide whether local hospitals, GPs and health organisations will prescribe them.'

With individual trusts left to decide for themselves, it is creating a 'postcode lottery' which has been likened to last year's scandal over the breast cancer drug, Herceptin.

Sutent, made by Pfizer, works by stopping the signals which enable cancer cells to grow and divide and starving the blood supply to tumours. It has given new hope to kidney cancer sufferers who, unlike those with other forms of cancer, do not respond to chemo or radiotherapy.

This week, the Department of Health insisted individual NHS Primary Care Trusts (PCTs) should not hide behind NICE approval. A Department of Health spokesperson said: "The drug is licensed and patients should not be refused the supply because NICE guidance does not exist.

"PCTs should consider funding if recommended by the clinician and in the light of existing evidence. It is not an excuse for a PCT to refuse to supply the drug because no NICE guidance exists."

The statement is little comfort to the thousands of kidney cancer patients who could potentially benefit from the new treatment which is already widely used in the USA and Europe.

Pat Hanlon, a trustee for Kidney Cancer UK, said the drugs enable patients to live up to two or more years longer, giving the opportunity to benefit from further advancements in the future.

He added: "We are extremely keen that these new anti-cancer drugs are deemed to be cost effective so all patients, not just those who can afford them or who are on a trial, can benefit.

"Patients with kidney cancer are relatively cheap to treat because, as the cancer is difficult to diagnose and treat, they don't survive very long. These new drugs bring new hope to thousands and we are now seeking legal advice as to whether we have a case against PCTs who deny treatment on the grounds of cost."

The charity has over 1,200 signatories on an e-petition on the 10 Downing Street website calling for Sutent and Nexavar to be made available on the NHS.

One man who is living proof the drugs work is Mark Franklin (39), a builder from Buckinghamshire. Diagnosed with advanced kidney cancer in November 2005, he was given six months to live and placed on the drug, Interferon, which did not work.

By January, doctors said there was no other treatment available and sent him home to die. But last June, with the cancer spreading extensively throughout his body, he was placed on a clinical trial of Sutent.

Now his tumours have reduced dramatically and he is embarking on a challenge to climb the three highest mountains in Britain.

Mark said: "I was written off and told nothing could be done but I never gave up hope. Now I'm living proof the drug works. I'm well enough to climb three mountains when I couldn't climb a flight of stairs nine months ago.

"This drug is literally the difference between life or death and the NHS is letting people down over money."

Some patients are fighting back. Keith Ditchfield (53) from Stonyhurst, Lancashire has just won his appeal on his fourth attempt to have Nexavar provided free on the NHS.

Keith was paying £3,000 per month for the drug privately as East Lancashire PCT refused to fund it stating it had not yet gained NICE approval.

Keith said: "PCTs are looking for reasons not to fund these drugs because of cost. The evidence is there that the drugs work and if you fight your corner long enough, they run out of excuses."

Case study
Nick Adams

A mother whose 24-year-old son was given days to live is fighting to get the NHS to pay for the wonder-drug which is keeping him alive.

Sandi Adams' son Nick was diagnosed with advanced kidney cancer in November last year. Doctors said nothing could save him and by January this year, he lay dying a cancer hospice.

Then Sandi learnt of the new anti-cancer drug, Sutent, which her local NHS trust refused to pay for. Not willing to give up on her son, she rallied the entire community in Skegness, Lincolnshire, into a massive fund-raising drive to raise the £3,500-a-month needed for the treatment.

Now in his second month on the drug, Nick is back on feet and living a relatively normal life. Yet despite his improvements, the Lincolnshire Primary Care Trust (PCT) is still refusing to pay for the drug on the grounds it is not proven.

Now the family are in a catch-22 situation - the PCT refuses to pay for Sutent unless long-term benefits are shown, but the family only has enough money to pay for the drug until the end of March.

Sandi (42), a shop manager who is married to Symon (44), said: "What happened to Nick is nothing short of a miracle. One day he was bed ridden, couldn't eat or take himself to the toilet; nine days after first taking Sutent, he was back on his feet and eating his first meal in over 10 weeks. Now he has his quality of life back again."

She added: "It is so unfair that the NHS won't pay for this drug. We all know it's about the money.

"If I had breast cancer, the NHS would be spending money on chemotherapy and radiotherapy, but those treatments don't work on kidney cancer patients, so the money they save should be spent on Sutent."

She added that the pressure to find the money to pay for Sutent had put a massive strain on her and her family.

"Worrying how we were going to find the money to help Nick was worse than finding out he had cancer. We came to terms with the illness but I lay awake night after night worrying about where the money would come from," Sandi said.

"When he was first diagnosed, I felt I couldn't go and buy food because the money might make a difference to whether my son lives or dies. That's a terrible situation for anyone to be in."

The family is set to appeal against the PCT's decision again in March after Nick's next CT scan results come through.

Meanwhile, a spokesperson for Lincolnshire PCT confirmed it is not currently funding any patients to receive Sutent, adding: "Sutent has recently been licensed for the treatment of advanced renal cancer. As it is a new drug it is not routinely funded by Lincolnshire PCT. Rather, we consider any requests to fund this drug on a named patient basis, based on the published evidence of effectiveness and cost-effectiveness, and the patient's individual circumstances.

"Each request is considered by our Exceptional Case Committee which is chaired by a Lincolnshire GP. Should the decision be not to fund, the patient can appeal to an independent appeals panel."