In July 2007, 71-year-old Julia Gatt took part in a drug trial that transformed her life and gave her hope for the first time in the four years since she had been diagnosed with myeloma, a rare incurable blood cancer.

Until then, her treatment had been a variety of chemotherapies and steroids. While these drugs had reduced the number of cancer cells in her blood and bone marrow, she had felt tired and lethargic. But when she began to take one white pill every day containing 25mg of lenalidomide, everything changed. “I thought, gosh, this is a wonder drug,” she said. “It really gave me hope.

I improved so much it was unbelievable. I just didn’t seem to have the side effects. I could run down the stairs — before I sometimes could barely walk. It was amazing.’ ” But her wellbeing was short-lived. After six months, the trial ended, and the drug’s manufacturer stopped funding her treatment. In the summer of last year, she was back on various chemotherapies, steroids and older cancer drugs — and her condition worsened again. Her doctor recommended lenalidomide once again, but whether the NHS would fund the £4,300 per month was not his decision — instead her future would depend on a judgment made by the National Institute for Health and Clinical Excellence (Nice).

I met Julia last year when I began making a BBC documentary about Nice. As she worried about her advancing cancer, it seemed cruel that her fate would hang on the outcome of a committee meeting of a government quango.

I felt for her. Seven years ago, my father fell ill with cancer. He was operated on, irradiated and pumped full of drugs. In that year, I did everything in my power to keep him alive. I met the leading experts, read the research and argued with his doctors. I ended up writing a book about the experience, One in Three: A Son’s Journey into the History and Science of Cancer. I know that I couldn’t have stood by and let him die if a bureaucracy had refused the best treatment for him.

Ever since, I’ve watched the agony as patients have protested in order to persuade the government to give them drugs that could extend their lives — most notably Herceptin for breast cancer. Nice is at the heart of these life-changing decisions. Established a decade ago to assess whether the benefits of new drugs justify their costs, Nice gives a green light to the vast majority of the 45 new drugs it assesses every year. The NHS now spends £1.5 billion a year as a result of the decisions. But the few that Nice says no to cause enormous controversy.

Last August, for instance, patients protested outside Nice’s offices in a desperate attempt to overturn a negative ruling about a kidney cancer drug, sunitinib. And for the past five years, patients have been campaigning for the Alzheimer’s drug donepezil, taking Nice to the House of Lords to challenge its methods.

But how does Nice reach these verdicts?

To find out, I negotiated to become the first journalist to witness a decision about a drug as it took place. I wanted to read all the documents and meet those who would sit in judgment about our healthcare and those who are affected by the decision. By following the appraisal process for lenalidomide, I wanted to decide if it could ever be right to deny a patient a drug for reasons of cost alone.

By May of last year, just as Julia’s illness was exacerbating, Nice began to collect all the data surrounding lenalidomide, manufactured by an American company called Celgene.

The man presiding over the decision is David Barnett, a heart physician, professor of clinical pharmacology and the chairman of Nice’s appraisal committee. I first meet him on his ward round at the Leicester Royal Infirmary. As he talks to his patients, he exudes gentle authority.

I ask what he says to patients like Julia Gatt, who think that they have a right to treatments like lenalidomide. “If it was me, if it was my family, I’d feel the same way,” he admits, “but it is blinkered to think that it is an appropriate way to run a healthcare system within a budget, within a bank account of a certain size. They wouldn’t do it with their own resources. They look at how much money they’re getting from their own occupation and they say, ‘I can’t afford a Bentley Continental, I can only afford a push-bike.’”

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