12th December 2016

The legacy of AA Gill?

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We, like many, are deeply saddened by the death of the Sunday Times restaurant critic, AA Gill, who passed away on Saturday aged 62.

The columnist only recently spoke out about his illness, announcing just three weeks ago he had the “full English of cancers”. He was diagnosed with lung cancer that had spread to his neck and pancreas, with tumours that were inoperable and unsuitable for radiotherapy.

Restaurant critic, AA Gill, who sadly passed away from lung cancer on Saturday 10th December 2016

He had a course of platinum chemotherapy but it did not work. His oncologist recommended immunotherapy, specifically nivolumab, but it was not available on the NHS in England and Wales for lung cancer patients. It is, however, available for Scottish patients.

AA Gill’s story is one we have heard before. Four months ago, we met Fiona Fail and her family who were petitioning for National Institute for Health and Care Excellence (NICE) to approve nivolumab for lung cancer patients in England and Wales.

Fiona was diagnosed with lung cancer in November 2014. She lives in in Blyth, Northumberland. If she lived just 60 miles north, over the Scottish border, she would have access to the immunotherapy which her oncologist believes, in her case, is her ‘only chance to live longer’.

Fiona’s petition has since received nearly 175,000 signatures and we await the next NICE appraisal committee meeting in mid-January, where they will again discuss this drug.

What is nivolumab?

We completely understand the frustrations of those living with lung cancer. Nivolumab is being reported as a ‘wonder drug’ which could give patients more time with their children, grandchildren, husbands and wives. Sadly, not all lung cancer patients derive any benefit from this therapy and, as with most treatments, it is not without its side effects.

Nivolumab currently has a European licence in non-small cell lung cancer (squamous and non- squamous cell type) as a second line therapy drug, administered after platinum based chemotherapy. Only certain patients are suitable for nivolumab and only some patients will respond to this treatment.

Nivolumab is currently being assessed by NICE, for use in the NHS in England. NICE assesses the clinical and the cost effectiveness of therapies, as compared with other standard treatments. As has been widely reported, this therapy is quite costly. NICE’s initial findings have been to not recommend nivolumab, based on the price. We have been urging NICE, NHS England and the drug manufacturer to come together and negotiate on the cost.

Understandably, it is nivolumab that is getting a lot of press at the moment due to it being the immunotherapy recommended to AA Gill but is not the only immunotherapy drug for lung cancer.

Two weeks ago, NICE recommended the immunotherapy drug, pembrolizumab, be made available on the NHS for people with PD-L1-positive non-small-cell lung cancer (NSCLC) who have already received platinum-based chemotherapy.

In addition to this, there are several other similar immunotherapy treatments in the drug approval pipeline for lung cancer.

Lung cancer stigma

“Old men who think they’re going to die anyway aren’t very effective activists. They don’t get the public or press pressure that young mothers’ cancers and kids’ diseases get.”

When it comes to lung cancer, the figures are not good; over 45,000 people are diagnosed with lung cancer and over 35,000 patient die from it each year – more than breast, bowel, bladder and uterine cancer combined. Yet it receives only 7% of research funding. Why is that? AA Gill believed it was largely down to the perception of the disease:

“There is little sympathy for lung cancer. It’s mostly men, mostly old men, mostly working-class old men and mostly smokers. There is a lot more money and public sympathy for the cancers that affect women and the young. Why wouldn’t there be?”

The stigma of smoking is one that continues to haunt lung cancer patients. It is the cancer you caused yourself, you got what you deserve. Forget that people started smoking before the health risks were fully understood. Forget that more than half of smokers start before they’re old enough to do their GCSE’s. Forget that smoking is not the only cause of lung cancer.

Katie Cohen understands this better than most. Diagnosed with stage IV lung cancer in January 2015, she is about as far away from your stereotypical lung cancer patient as you can get. Aged just 34, she comes from a very healthy and active family – a tennis family – and yet she, her mum and her grandmother all had lung cancer.

Sharing her story in Inspire, Katie recalls feelings of isolation and even shame at having the disease. In the case of any other kind of illness, people say ‘I’m sorry’ or ask ‘Are you ok?’. In Katie’s case, and many lung cancer patients like her, the first thing people ask is ‘Did you smoke?’. It’s like nobody cares.

We certainly care. We are working with Katie, and many other people living with lung cancer, to reduce and eradicate this stigma. We are also funding vital lung cancer research including an early detection programme which aims to identify, scan and support people most at risk of developing lung cancer.

But most of all, we want to get people talking about lung cancer because the more we talk about it, the better the chances are of beating it. AA Gill was a man of words. Perhaps his final ones will play some part in saving the lives of others. It feels like a fitting legacy.

What is immunotherapy?

Immunotherapy is a type of drug treatment that works with part of the immune system called T-cells. Normally T-cells identify and attack cancer cells. However, some cancers send out chemical signals that shut down these T-cells so cancer cells are “hidden” and grow unchecked.

Immunotherapy treatment helps to stop these signals and allow T-cells to re-identify and attack cancer cells.