We are deeply saddened by the death of A. A. Gill, the The Sunday Times restaurant critic, who died on Saturday aged 62.
The columnist spoke publicly about his illness only three weeks ago. At that time, he described having the “full English of cancers”. Doctors had diagnosed him with lung cancer that had spread to his neck and pancreas. The tumours were inoperable and unsuitable for radiotherapy.
Gill received a course of platinum chemotherapy. Unfortunately, the treatment did not work. His oncologist then recommended immunotherapy, specifically Nivolumab. However, lung cancer patients in England and Wales cannot access this drug through the NHS. Patients in Scotland can receive it.
A Familiar Story for Lung Cancer Patients
Sadly, AA Gill’s story reflects a situation we hear about often.
Four months ago, we met Fiona Fail and her family. They launched a petition asking the National Institute for Health and Care Excellence (NICE) to approve nivolumab for lung cancer patients in England and Wales.
Doctors diagnosed Fiona with lung cancer in November 2014. She lives in Blyth. If she lived only 60 miles further north, across the Scottish border, she could receive the immunotherapy. Her oncologist believes the treatment may be her “only chance to live longer”.
Since then, Fiona’s petition has attracted nearly 175,000 signatures. The next NICE appraisal committee meeting will take place in mid-January, when members will again discuss this drug.
What is nivolumab?
We fully understand the frustration many lung cancer patients feel.
Media reports often describe nivolumab as a “wonder drug”. It may allow some patients to spend more time with their children, grandchildren, husbands and wives. However, not every patient benefits from the therapy. Like most treatments, it can also cause side effects.
Nivolumab currently holds a European licence for Non‑small cell lung cancer. This includes squamous and non-squamous types. Doctors use it as a second-line therapy after platinum-based chemotherapy.
Only certain patients qualify for nivolumab treatment. Among those who receive it, only some will respond.
NICE is currently assessing nivolumab for NHS use in England. The organisation reviews both the clinical benefits and the cost effectiveness of new therapies compared with standard treatments.
As widely reported, this therapy is expensive. NICE’s initial findings did not recommend nivolumab because of its price. Therefore, we have urged NICE, NHS England and the drug manufacturer to negotiate a more affordable cost.
Other Immunotherapy Options
At the moment, nivolumab receives a great deal of attention because doctors recommended it to AA Gill. However, it is not the only immunotherapy treatment available for lung cancer.
Two weeks ago, NICE recommended another immunotherapy drug, Pembrolizumab. The NHS will provide it to patients with PD-L1-positive non-small-cell lung cancer who have already received platinum-based chemotherapy.
Researchers are also developing several similar immunotherapy drugs. Many of these treatments currently move through the drug approval pipeline for lung cancer.
Lung cancer stigma
AA Gill also spoke about the stigma surrounding lung cancer:
“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 we look at lung cancer statistics, the figures are stark. More than 45,000 people receive a diagnosis every year in the UK. Over 35,000 patients die from the disease annually. This total exceeds the combined deaths from breast, bowel, bladder and uterine cancer.
Despite this, lung cancer receives only around 7% of research funding. AA Gill believed public perceptions played a major role:
“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.
Challenging Misconceptions
Katie Cohen understands this better than most. Doctors diagnosed her with stage IV lung cancer in January 2015. At just 34 years old, she does not fit the stereotype of a lung cancer patient. Katie comes from a healthy and active family known for tennis. Yet she, her mother and her grandmother have all experienced 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.”
Changing the Conversation
We certainly care.
Our team works with Katie and many others living with lung cancer to challenge and reduce this stigma. At the same time, we fund vital lung cancer research. This includes an early detection programme that identifies and scans people at higher risk of developing the disease.
Above all, we want people to talk openly about lung cancer. The more people discuss it, the better the chances we have of beating it.
AA Gill was a man of words. Perhaps his final ones will help save lives. That would be 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.