Cancer: Two women tell their stories

A new treatment could beat the disease inside her, but the local NHS refuses to pay.
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Indy Lifestyle Online

Although Tamar Bailey has inoperable cancer, she has, in theory, a good chance of survival thanks to the invention of a new generation of life-saving drugs.

But there is one problem. Her health trust will provide funding only in exceptional cases for the drug, Avastin, that Ms Bailey desperately needs. In their view, the 26-year-old art director is not "an exceptional case" even though bowel cancer is rare in someone so young, and she has secondary tumours in her liver. Ms Bailey now faces a desperate struggle to find the thousands of pounds needed to pay for Avastin out of her own pocket.

Around the country, thousands of people like her are being turned down by cash-strapped NHS trusts for the vital treatment that could save their lives. Charities, MPs and cancer specialists have condemned delays in NHS approval for the prescribing of drugs that are both licensed and safe, and the postcode lottery for cancer treatment which means that some desperately sick patients have to wait three years to get the drugs they need.

In effect, a two-tier system is operating where only the rich and well-informed can afford drugs such as Avastin, which cost thousands of pounds, and where NHS patients are routinely turned down.

The NHS spends £639m a year on cancer treatment, which includes £240m for specialist staff, £192m for drugs and £113m for new equipment. But Britain still lags behind other European countries on cancer treatments and is much slower to provide them. It can take as long as two years for the National Institute for Clinical Excellence (Nice) to approve a drug as a standard treatment. Nice was set up by ministers in 1999 to decide which drugs can be routinely prescribed by the NHS.

The charity CancerBacup says there are at least 23 drugs that have been licensed for use in the UK, but doctors are having to deny them to patients because Nice is dragging its heels over approving them. These include Cetuximab, used for patients with head and neck cancers, which greatly increases the success of chemotherapy but is not expected to be approved by Nice until June 2007.

The new-generation drugs are considered exceptionally effective because they target cancer cells, leaving healthy tissue alone. Drugs such as Avastin have been shown to shrink tumours by up to 40 per cent. This means that a disease that was once seen as a death sentence can be successfully treated - but only if patients get access to the drugs.

Dr Jonathan Ledermann, a consultant in medical oncology at University College Hospital in London, said there was a huge gap between the time it took to license drugs and for Nice to approve them for NHS use. "We have a system that lags behind much of Europe. It's difficult in this age when someone can go on to a website and see the drugs that are available but then be told they have to be a special case."

Other experts are more cautious, arguing that if millions of pounds are spent on cancer treatment then there will be less to spend on, say, heart disease and arthritis. For example, it costs £40,000 for a two-year supply of Herceptin, which is used to treat breast cancer. That could buy six hip replacements.

Others say the amount spent on cancer care in Britain is scandalously low. Jonathan Waxman, the professor of oncology at Hammersmith Hospital, accuses trusts of "outrageous arrogance" for denying people treatment. "Cancer affects one person in three but the spend is not within the top 10 ... Thirty thousand pounds for an additional 10 months of life is not that much when life is terribly sweet."

Some patients have even resorted to court action. Ann Marie Rogers went to the High Court last week in a bid to receive Herceptin to treat her breast cancer. But doctors say that judges should not have to make life-and-death decisions on who should get these drugs.

As Tamar Bailey found, the progress of bowel cancer does not hang around for courts to come to a verdict. Doctors took nearly six months to realise what was wrong with her. In September last year, she started passing blood and was vomiting constantly. Her belly swelled up, making her appear several months pregnant. Ms Bailey was told her condition was probably piles and was refused an internal examination, which would have detected the cancer. Even though she lost 10kg in weight and suspected she had cancer, doctors did not diagnose the disease until February this year. "I went to A and E about eight times, but was just given painkillers," she says. "When they finally checked me out, there was this angry red bulge on the screen."

At first, Ms Bailey was assured that she had a good case for getting Avastin. But last Friday, she received a letter from Sutton and Merton PCT, stating that her case had been turned down because her age "was not considered an exceptional circumstance". Her case is a stark example of the postcode lottery over cancer drugs.

Another patient, Hayley Newbery, who lives in Herfordshire and is the same age as Ms Bailey, has been given Avastin.

Ms Bailey said: "I no longer have any faith in the NHS. I've been faced with all these impossible choices. Apart from the district nurses who have been brilliant, I've been let down on every level."

Debbie's story

The Munros sold all they owned for drugs to keep her alive. But they ran out of money and time. Her widower, John, talks to Steve Bloomfield

When Debbie Munro was diagnosed with bowel cancer in March 2004, she and her husband, John, vowed to fight on and beat it. "We were devastated," said Mr Munro, "but we were going to deal with it."

The drug Debbie needed was Avastin - but her primary care trust refused to pay for the drug because it had not been reviewed by the National Institute of Clinical Excellence. "The oncologist said Deb didn't fit any of the criteria for treatment. There was nothing that would be of any help," said Mr Munro.

Denied Avastin on the NHS, the couple sold their house and left their jobs to move to the US, where the drug was available. "We sold the house, left our jobs - everything. After 10 months in the States, Deb was showing progress but the chemotherapy wasn't doing her any good."

The couple had taken their 10-year-old son, Callum, to the US with them, but they had left their daughters, Holly, 23, and Tamzin, 17, at home. After hearing that Avastin had become available in Britain, they came home.

They returned penniless, having used the proceeds of the sale of their £185,000 house in Ormesby in Norfolk to fund Mrs Munro's treatment in the US. "We found a private clinic in Bournemouth, but the treatment cost us £3,000 every three weeks. We couldn't afford it," said Mr Munro.

The couple hoped that Avastin would shrink Mrs Munro's tumours enough to allow her to return to the US for a live-related liver transplant, in which surgeons would have removed part of her twin sister's liver and given it to her.

By this stage, her cancer had spread to her liver and her lung. The distinguished crime writer Patricia Cornwell heard about Mrs Munro's case and was so moved she decided to pay for her treatment. Ms Cornwell treated the family to a weekend at the Savoy in London in August last year.

"We had a wonderful time," said Mr Munro. "But the next day Deb got an infection." Within 24 hours, she was dead.

"I'm so angry that the NHS refused to pay for Deb's treatment," he said. "It angers me that there are so many things wrong with the NHS. They will pay for people who are overweight to have personal trainers or encourage doctors to give counselling to smokers - but these are the easy things. When it comes to cancer care, everyone is left high and dry. There is something going very wrong somewhere.

"We always had the attitude that we would beat it. As a family we thought we would just fight and fight. That kept us going. It would have been very easy to get bogged down by bitterness. The kids have made huge sacrifices to help make their mother well. They are coping well." The family now lives in the New Forest. Mr Munro added: "Deb passed away here. She's buried in a cemetery nearby. We are staying here with Deb."

CLINICAL LOTTERY

Vital drugs: what they cost, how they work and who gets them

Herceptin (trastuzumab)

COST: £20,000 per year

WHAT IT IS: Breast cancer drug - a monoclonal antibody, which uses the natural immune system.

WHAT IT DOES: Stops cancer cells growing and signals to immune system cells to kill the tumour.

HOW TO GET IT: Available on the NHS for late-stage breast cancer, depending on where you live and your circumstances. Currently no approval for use on early-stage breast cancer in Britain.

Avastin (bevacizumab)

COST: £20,000 a year

WHAT IT IS: Another monoclonal antibody for use primarily on colon cancers. It attacks the tumour cells while causing little damage to the body's normal, healthy cells.

WHAT IT DOES: Trials have shown it can shrink tumours by up to 40 per cent by reducing the cancer's oxygen and nutrient supply.

HOW TO GET IT: Available in Scotland for colon cancers. Nice is expected to decide this autumn on its use for colon cancers in England and Wales.

Cetuximab (Erbitux)

COST: 12 doses cost £7,000

WHAT IS IT: Monoclonal antibody for use on patients with colon cancer whose tumours have returned after initial treatment. Also used on head, neck and lung cancers. Used in combination with chemotherapy.

WHAT IT DOES: Stops cancer cells dividing and growing and raises success rate of chemotherapy.

HOW TO GET IT: Not yet licensed in UK for all cancers. Available on NHS in exceptional cases. Nice approval for use on head and neck cancers expected in summer 2007.

Xeloda (capecitabine)

COST: £1,300 per year

WHAT IS IT: Used on advanced bowel and breast cancers where hormonal treatments have not worked.

WHAT IT DOES: Delivers chemotherapy in oral form.

HOW TO GET IT: Available privately, but rarely on NHS. Nice guidance is expected next month on whether the NHS will issue the drug.

Rituximab (MabThera)

COST: £15,000 over 15-year period

WHAT IS IT: Monoclonal antibody used on lymphatic cancers and used in combination with chemotherapy for advanced cases.

WHAT IT DOES: Slows the progression of non-Hodgkin's lymphoma by linking to cancer cells and making them self-destruct.

HOW TO GET IT: Approved in Scotland. No Nice decision for England and Wales until next year.

Arimidex (anastrozole)

COST: £1,084 per year

WHAT IS IT: Hormonal therapy for use on advanced breast cancers in post-menopausal women.

WHAT IT DOES: Breast cancers need oestrogen to develop but the drug reduces the amount of it in the body.

HOW TO GET IT: Health authorities can prescribe it at their discretion but are not obliged to do so. Decision by Nice awaited.

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