The death this week of the well-known journalist AA Gill was a tragedy for some, not least for his long-term partner and children. It was a sadness for many more, including me. I have enjoyed his columns for years, and it is always distressing to learn that someone has been struck down at the relatively young age of 62.
AA Gill wrote of his experiences with the NHS in his very last column, published in the Sunday Times after his death. His oncologist, he told his readers, advised him that if he had private insurance, he would have recommended Nivolumab, a form of 'immunotherapy'. But, he complained, "The National Institute for Health and Care Excellence (NICE), the quango that acts as the quartermaster for the health service, won't pay."
Possibly - maybe even probably - AA Gill is dead today because he did not have access to Nivolumab. But let's not kid ourselves that he had a healthy old age, dangling grandchildren on his knee, snatched away from him. Most studies on the effects of cancer drugs are first done in late stages of cancer. This is because it's often considered unethical to test experimental drugs in early cancer, when there are lots of other options. If these first studies on late stage cancer, carried out on patients who don't have any other options, are positive, the next studies will usually involve patients with earlier cancers.
Now let's be clear what we mean by a 'positive study'. If your life expectancy is five years and we increase it by 50%, this means the average person will live for 7.5 years. If, on the other hand, the average person with very late stage cancer could expect to live for five months, then a 50% increase in life expectancy would only mean another 10 weeks of life. Of course there will be variability within this - if half of people in a study don't live any longer, and half live twice as long, the 'average' increase in life expectancy will be 50%.
But the NHS only has a finite pot of money. The drug AA Gill was looking at is one of a new breed of 'personalised medicine' drugs. These drugs latch on to cancers in the same way that our own body's white blood cells latch on to enemies like viruses. They're called Monoclonal Antibodies, and they offer extraordinary hope for the future. The theory is that because they're so targeted, they can hone in on cancer cells and destroy them with minimal side effects - or at least less collateral damage to healthy body cells than many current cancer treatments come with. But they come at a cost.
We have to accept that sometimes cancer can't be cured, even with all the money in the world. After all, it's hardly likely that David Bowie was unable to afford the most cutting edge treatment. And yet he died of cancer. AA Gill himself conceded that he hadn't been told any treatment would cure him. His cancer, it would seem, was far too advanced for that. Immunotherapy would buy him precious weeks, or possibly months of life. But Nivolumab costs up to £100,000 a year, and the NHS has a finite pot of money.
We also have to acknowledge that drugs cost a vast amount to produce. If you count up all the research and drug trials that go into bringing a drug to market, along with the cost of research into drugs from the same company that didn't make it to the licensing stage (but which companies invested expensive research into), a very rough estimate is $1 billion dollars to get a drug to the stage where it can be prescribed. That money has to be recouped so that it can be ploughed back into more drug development. We may not like the profits drug companies make, but millions of people in the UK alone are only alive because of the research they do. If nobody paid the cost of their drugs there would, quite simply, be no more research. The NHS most certainly doesn't have enough money to develop new drugs.
So we have a fundamental mismatch. Drugs that can be used to treat millions of people can be priced at a few pounds, and will still recoup the cost of their development in a few years. Drugs that treat only a few thousand people cost the same to produce - so the cost of research has to be divided among far fewer eligible people. That stacks up to a far higher cost per patient. We cannot reasonably expect drug companies to slash the costs of their drugs by 90+% without jeopardising future research which could save or transform tens of thousands of lives.
NICE has a very tough job to do - it has to weigh up improvements in the quality and quantity of life offered for vastly different conditions. A new-look Cancer Drugs Fund, the product of partnership working between NHS England, NICE, Public Health England and the Department of Health, was brought in to England in July this year. Why? Because the previous Cancer Drugs Fund had "unsustainable financial pressure with calls for urgent reform coming from the independent Cancer Taskforce, the National Audit Office and from Parliament's Public Accounts Committee." That's bureaucrat-speak for the NHS couldn't afford it.
Is an extra three months of life for AA Gill - or for anyone else in his position - worth more than relief from misery for dozens patients suffering daily misery from hip pain that could be relieved by surgery? I'm very glad I'm not the one who has to decide.
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.