A 34-year-old woman who has been kept alive by a lung cancer drug unavailable on the NHS has launched a campaign to highlight a two-tier health system that denies potentially life-extending treatment to patients without private insurance.
Katie Cohen, a former long-distance runner from Bushey, Hertfordshire, was diagnosed with advanced, incurable lung cancer in January 2015.
She told a meeting of MPs that she had been eligible for nivolumab, the pioneering drug that has kept her alive, only “because I have private healthcare. That raises the question of whether or not I would be standing here if I didn’t have this luxury.”
Nivolumab, a new immunotherapy treatment, is intended for cases where chemotherapy has not worked. Its use was highlighted by AA Gill, the Sunday Times writer, who died last weekend of complications of what he described in his final article as “a migrated, refugee, desperate, breathless lung cancer”.
Gill discovered he was unable to access nivolumab, which costs £6,000 a month, on the NHS after his chemotherapy failed.
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Cohen’s campaign and Gill’s experience have highlighted the dilemma facing cancer patients who find that treatments that might extend their lives are not available on the NHS.
The National Institute for Health and Care Excellence (Nice), which advises on NHS treatments in England and Wales, has ruled in draft decisions that nivolumab is not cost-effective.
As a result it is funded by the NHS for lung cancer in Scotland but not in England and Wales.
Paula Chadwick, chief executive of the Roy Castle Lung Cancer Foundation, said: “It’s simply not acceptable that a patient can receive nivolumab if they live in Scotland, while someone living in England or Wales is denied access. This is postcode prescribing. It must stop — and quickly, because patients simply don’t have time to wait.”
Cohen, who ran half-marathons before she fell ill, first visited her GP in September 2014, complaining of a persistent cough. She was initially told she did not meet the criteria for a referral to an NHS consultant and was eventually diagnosed with cancer privately after five months.
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Her mother also had lung cancer and died in April. Cohen told MPs: “Unfortunately for us both, we were diagnosed at an advanced stage, an incurable stage. Had we been diagnosed sooner, we may have been cured — my mum may still be here and I would be living the life that I now only dream of.”
Cohen, whose husband Daniel is a property developer, told MPs: “The fact that I am standing here today means that I am defying statistics, as 50% of people are dead within six months of diagnosis.”
She said lung cancer patients faced a difficult stigma. “We are made to feel like we are at fault . . . the first thing [people] say is ‘Did you smoke?’” She said lung cancer had overtaken breast cancer as the biggest killer of women. “It is no longer an old male smokers’ disease . . . yet no-one is running 5ks, holding bake sales or selling ribbons in the name of lung cancer.”
Cohen said: “This lack of [NHS] funds explains why 70% of late-stage patients are dead within a year. It explains why it took five months for me to get a diagnosis, why, after less than two years, I am running out of treatment options and why my medical team do not expect me to make my 40th birthday.”
The lack of access to new therapies is not confined to lung cancer, as Dr Mark Saunders, a consultant oncologist at the Christie NHS Foundation Trust in Manchester and chairman of the medical board of Beating Bowel Cancer, makes clear in a letter to The Sunday Times today.
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He writes: “I am deeply concerned that we are returning to the situation in the NHS where patients have to fundraise or use their own assets to pay for drugs through the NHS.”
Saunders points out that the NHS Cancer Drugs Fund (CDF), which has a fixed budget of £340m, “initially allowed English patients with bowel cancer access to many of the new chemotherapies widely available in much of Europe and north America. These agents were then steadily removed. This is tragic.” A definitive decision from the CDF on funding nivolumab is expected next month.
Saunders acknowledges that the extra time cancer patients gain from drugs not funded by the NHS is small — if they pay for new drugs they typically gain an additional three months — but a short time is important to those with only a few months to live.
His words echo what Gill wrote in his final article for The Sunday Times: “As yet, immunotherapy isn’t a cure, it’s a stretch more life, a considerable bit of life. More life with your kids, more life with your friends, more life holding hands, more life shared, more life spent on earth — but only if you can pay.”
Some patients survive for much longer. Steve Clark, 52, a marketing consultant from Berkshire, has been living with advanced bowel cancer for 3½ years while receiving the new drug Avastin (bevacizumab) through his private health insurance. It is not available for bowel cancer on the NHS anywhere in the UK.
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When Clark was diagnosed with the illness in 2013 it had already spread to his liver and lungs. His doctor says he believes he will survive for another two years. Clark is aiming for five. He said: “I’ve now got a real balance to my life despite being on lifetime chemotherapy. I think it’s shocking that there is now a two-tier system where NHS patients are no longer able to access drugs like Avastin.”