Scandal of live-or-die drugs lottery

Oct 9 2007 by David Higgerson, Liverpool Daily Post

Cancer drug Sutent saved Frank Buckle’s life. He told David Higgerson why more people should be prescribed it

UNTIL today, only a small number of people have known about Frank Buckle’s fight with cancer.

The 69-year-old company director had hoped to keep it that way. But the fact he is still here, three-and-a-half years after being diagnosed with kidney cancer is, he believes, down to a drug which health trusts regularly refuse to sanction.

Mr Buckle, who once served in the RAF, takes Sutent, a drug he was first given in 2005 after being placed on a trial being run at Manchester’s Christie Hospital, one of Europe’s lead-ing cancer centres.

The National Institute for Health and Clinical Excellence (NICE) is in the process of assessing the medication for ‘clinical and cost-effectiveness’.

In the meantime, kidney cancer sufferers have to undergo a much more debilitating course of treatment which, in Mr Buckle’s case, wasn’t as effective as Sutent. It involved drugs including Interferon and Interleukin, both known for their side effects.

Mr Buckle took Interferon and Interleukin after removal of one kidney failed to stop the cancer.

The company director who lives in Kew in Southport, said: “When I was on the triple treatment, everything was a real struggle. I would have to crawl into the bathroom and sit down while I shaved. It felt like I was in a permanent state of flu, and it didn’t work for me.

“The cancer had caused a visible tumour on my arm, which was the size of a golf ball. In the end, my consultant at Christie’s, Professor Robert Hawkins, tried me on Sutent as part of a trial.

“Within three days, I was looking in the mirror and thinking the tumour had gone down. I also felt much better. It is now the size of a Smartie, and I think I’m proof this drug works.”

The case of celebrated music mogul and broadcaster Tony Wilson, who died in the summer after battling kidney cancer – and having to rely on his friends to pay for Sutent because his PCT wouldn’t – is one of the reasons Frank has spoken out now.

He said: “The idea that it takes so long to decide if something is cost-effective enough or that it works is a national scandal. If the doctors say it is worth trying, then surely that should be good enough. The doctors aren’t going to prescribe something that isn’t good for you, but my experience with the NHS was that if you didn’t push for something, the chances were you wouldn’t get it.

“When I was first diagnosed, I was given months to live. I really had to push to get treatments, and it was only when I asked about certain treatments that I got referred to Christie’s, which is how I got the Sutent in the end.

“You shouldn’t have to push like that, and bureaucrats shouldn’t be allowed the final say either.

“I don’t know if I’d be here without Sutent, and that should be proof enough to give it to other people.”

Sutent is among the list of drugs denied to 70 people by PCTs in Merseyside in the last 18 months. The fact it is now available in other parts of the country has prompted claims of a drugs ‘postcode lottery’. And it is by no means the only drug which doctors want to prescribe – only to be overruled.

Since being created in 1999 by then Health Secretary Frank Dobson, NICE has rarely been out of the headlines. It was set up to decide how health budgets should be spent, and decide which drugs were worth prescribing. Drugs such as Herceptin, a breast cancer drug NICE was very slow to authorise the use of, have become household names as sufferers have fought to get treatments that did work, but which had failed the cost-effectiveness test.

SOME of the other drugs are less well-known. Last year, Formby student Nick Keher launched a fund-raising drive to raise £50,000 to cover the cost of paying for Avastin, the drug doctors told him was his best chance of beating bowel cancer.

Mr Keher, who has now qualified as a pharmacist from university in Birmingham, underwent five cycles of the treatment in London and has had two clear scans since.

The 24-year-old said: “I know NICE has a job to do, and it’s a job I’d never want to do because of the hard decisions involved, but there has to be a better system.

“There is a lot of money wasted in the NHS and that is money which could be spent providing treatments for people with conditions such as cancer.

“I’m very grateful to everyone who helped raise money for me to get the treatment, but the last thing I needed was the stress of raising money when I was facing bowel cancer.”

It is a situation which is repeated up and down the country – people finding themselves facing serious or life-threatening conditions, being told by doctors what treatment would be best for them, and then being told it wasn’t available, often because of the cost.

Two years ago David Gavin returned to Merseyside from Newcastle, which had been his home for nearly 20 years, after being diagnosed with asbestos-related cancer mesothelioma.

The drug doctors believe best helps fight the cancer is called Alimta. At the time, it was widely available on Merseyside – largely because of the high number of dockers who had contracted illnesses through exposure to asbestos – but not in Newcastle, also a large port city. Newcastle’s argument was that it hadn’t been approved by NICE.

Former shipyard worker Mr Gavin, who had worked on the banks of the Tyne for much of his life, received two treatments of Alimta at Clatterbridge after moving in with his sister Ann at her home in Huyton.

When he went back for the third dose, doctors said he was too weak to receive it. He died last October. Ann is still angry that NICE has only approved the use of Alimta in the last year.

“David paid his taxes for nearly 40 years and had made a home for himself in Newcastle, she said. “Like thousands of others, he had been exposed to asbestos while working on the ships for years.

“His lung collapsed and doctors then diagnosed his cancer in hospital, but they said Alimta wasn’t available. It’s wrong that when you’re faced with something like that, you’re told that if you want it, you will have to pay for it, at £4,000 a time.

“We got him down here and I can’t fault the treatment he got, but by then it was too late. I’m sure if he’d got the treatment sooner, he’d have been here for longer.

“Every day counts when you’re fighting something like that. It’s wrong that this is allowed to happen.”

One of the ways people try to overturn NICE decisions is through the courts – but that isn’t always the end of the story. In the case of Alimta, appeals have now been lodged against NICE’s decision to approve it, meaning PCTs once again don’t have to prescribe it. Ian McFall, head of asbestos policy at Thompsons Solicitors said: “The last thing people suffering from terrible illnesses need is more uncertainty.

“They are going through hell as it is and should be entitled to know what treatment is available to them.”

And for the doctors who know the drugs can work, but can’t get NICE to agree quickly, all they can do is keep pushing the benefits.

IN THE case of Sutent, Christie’s consultant Prof Robert Hawkins said: “We have been very impressed with Sutent at the Christie.

“It’s a treatment, not a cure, but it’s not only been better in terms of shrinking tumours and keeping people well, it gives people a better quality of life.

“I hope it won’t be necessary to campaign for Sutent and that there won't be a situation like there was with the breast cancer drug, Herceptin.

“In the future, we may not have to operate on patients. Sutent is a good drug for a group of patients who do not have many options.”

Sadly, with the Scottish equivalent of NICE declining to authorise the use of Sutent, it appears that the battle may be far from over.

Drugs and treatments turned down by Merseyside and Cheshire PCTs

BEXAROTENE – used to treat lung and breast cancer.

Anti TNF Alpha Therapy – used to help reduce effects of Rheumatoid arthritis.

Diphencyprone – used for alopecia to aid re-growth of hair.

Velcade – a drug to help treat multiple myeloma, a cancer of the plasma cell, approved this year.

Melphalan – a chemotherapy drug used for some forms of cancer.

Prednisolon – used for the treatment of asthma, rheumatoid arthritis, ulcerative colitis and Crohn's disease, multiple sclerosis and cluster headaches

Pegintereron Alpha and Ribavarin Therapy – can be used to treat hepititis C.

Botulinum Toxin Injections – can be used to control severe muscle spasms.

Etanercept – used to treat Rheumatoid arthritis.

Rituximab – used to treat non-Hodgkins lymphoma (cancer).

Sunitinib – also known as Sutent, can be used for renal and kidney cancer.

Intravesical botox therapy – can be used for bladder cancer.