On Clive James, ibrutinib, and the NHS

“One of the virtues of the NHS is that it doesn’t worry you about money at the moment when you’re least capable of doing anything about it.”

his was one of the multitude of Clive James quotations printed on the death of the writer, poet, and broadcaster last November. Towards the end of his life, James wrote a lot about his failing health. In early 2010, he was diagnosed B-cell chronic lymphocytic leukaemia (CLL) and emphysema. He believed he did not have long to live, stating in a 2012 interview that the “end is near”. His productivity, however, did not slow down. He produced a new translation of Dante’s Inferno in 2013. The subject of his poetry turned toward his own mortality, the most notable example of which is Japanese Maple. The poem went viral in 2014 after it was published in The New Yorker. A collection of essays the following year was dedicated to “my doctors and nurses at Addenbrooke’s Hospital, Cambridge, UK”.

This was around the time when James began taking ibrutinib as a less toxic alternative to chemotherapy. The drug, which is a tyrosine kinase inhibitor, caused his leukaemia to relapse. James credited ibrutinib with extending his life for years. He even wrote a poem dedicated to the drug, describing it as a “little cluster bomb of goodness”.

The Marvel Comic name should tip you off

That this new drug is heavy duty stuff.

You don’t get this one just to cure a cough.

A chemo pill, and powerful enough

To put the kibosh on your CLL,

It gets in there and gives the bastard hell.

Despite its benefits, access to ibrutinib has been restricted in the NHS. Only last year senior haematologists came out against NHS England’s stance on the drug. At the time, it was only made available if patients had relapsed less than three years after chemotherapy. If remission had lasted for longer than three years, it was considered that patients should undergo further chemotherapy, even if their doctors judged that ibrutinib would be more beneficial.

In an open letter, NHS England was accused of over-riding guidance from the National Institute for Health and Care Excellence (NICE) in the use of the medication. It was only in August 2018 that the NHS guidance was updated so people with CLL who relapse after more than three years could now be treated with ibrutinib instead of with chemotherapy.

The cost of new medications is a challenge facing health services the world over. While James rightly wrote that a virtue of the NHS is that it doesn’t “worry” patients about money, the institution itself is not free from monetary concern. During the UK general election campaign, the Conservatives were accused by Labour of planning to “sell-off” the NHS to private US healthcare providers post-Brexit, as a means to generate additional funding. Although the Tories won a landmark victory in the election, any meddling with the fundamental nature of the health service and its creed of universal eligibility, would face stiff resistance.

As James wrote in a tribute to the NHS in The Guardian in June 2018: “The NHS will go on for ever being almost broke, because there will always be more things it can do. You might profess to be appalled that the NHS has spent millions on a new drug to stop people suddenly turning upside down and falling on their head, but you will be less appalled the first time you yourself suddenly turn upside down and fall on your head.”