Tydd St Mary nurse is calling for an end to the ‘postcode lottery’ and equal access to a drug which could give her an additional two years with her family
A nurse who has served the NHS for three decades wants to change the ‘lottery’ that is denying her access to a drug which could give her two extra precious years with her family.
Tracy Pratt – who continued to treat patients during the pandemic - has an incurable secondary breast cancer and will be cutting short the time she has left with her husband Gary and two children, Harry, 25, and Maisie 22.
There is a glimmer of hope in the form of a drug that has been proven to help extend the lives of some patients with her condition by two years but, while this is available Scotland on the NHS, it is not prescribed in England due to the cost.
The National Institute for Health and Care Excellence (NICE), which provides guidance for new technologies and drugs to the NHS, has not recommend the use of Enhertu after discussions between NHS England and the pharmaceutical companies failed to agree a ‘cost effective’ price. This means that it is unavailable to patients in England and Wales.
The 52-year-old nurse from Tydd St Mary feels that this is incredibly unfair.
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Tracy said: “This drug is registered for use in the NHS but we have been put in a situation where you feel like your life is worth less than someone living in Scotland – which is part of the NHS.
“This decision feels like they have pulled the rug out from under you. It would give people like me so much hope.
“It feels like your life is not worth two years – all those extra things you can do with family and friends. It was a real shock and devastating when I heard about the decision.
“I understand that not everything can go on the NHS but the fact is that the evidence is so good and it is the only drug treatment we have. It is being used across Europe, America and Scotland and that is what everyone has found difficult to deal with.
“The biggest thing we have to focus on is that this isn’t just a postcode lottery – it’s a country lottery. It’s not equal in the UK.”
Tracy was diagnosed with primary breast cancer in October 2018, after discovering a lump in her right breast.
She went onto have a lumpectomy – and a clearance of the cancer cells within the lymph nodes in her right side – along with chemotherapy and radiotherapy.
But the diagnosis for Tracy – who is fit and had climbed Mount Snowden a few weeks before – was a shock.
She said: “I am naturally quite a positive person and I was worried, but not overly worried. I was expecting them to tell me it was a cyst but then they told me otherwise and I was completely floored.
“But once I had my treatment plan that is what I needed to concentrate on. I viewed it as nine to 12 months out of my life to get through the plan and crack on. I had a plan and that was what I was doing.”
Tracy, who was a keen runner, went onto have her ovaries removed in August 2019 as her cancer was found to be fed by hormones. She is HER2 low, which is an enzyme that helps to active breast cancer cells.
But four years later when a niggly back pain did not ease after a few weeks rest from running, she went back to her oncology team at the hospital.
After a few weeks of scans, Tracy received the devastating diagnosis that her cancer had spread.
Tracy said: “There were four or five separate tumours. A CT scan found that one had eaten away a vertebrae which had collapsed and I was a risk of cord compression. I had to have emergency treatment to prevent spinal cord compression - that was scary that it happened so quickly.”
While Tracy has had to give up running, she has not given up on her sport by still swimming, going to the gym and even spin classes. She and her husband have also bought a camper to go off to travel with their dog.
Tracy has also had to give up her rewarding work as an arrhythmia nurse at Peterborough City Hospital due to the risks. But she is still able to care for patients by working in the virtual ward – where patients are treated at home but receive the benefits of acute treatment – one day a week.
But sadly it is not possible to remove the tumours and the cancer is incurable. She is still undergoing treatment which aims to keep her condition stable and slow down the progression.
This is where Enhertu would play an important part as it has been found to help slow down the progression of cancer over two years over HER2 patients.
Tracy said: “If the treatment I was on now stopped working for me, Enhertu would be the next treatment if it was available.
“I am not a statistic – this drug gave me hope that I could see a lot more things with my family than I thought I would do. This drug would give me the chance to have another two years.”
She is now calling on NHS England – along with the AstraZeneca and Daiichi Sankyo, the companies which have produced the drug – to re-start talks and work out a way forward.
Tracy said: “They need to humanise the process more and they need to look at people as individuals. They need to get around the table to discuss things to reach a solution so this drug is available fairly and equally in the UK.”
We did approach NHS England for comment on this issue but they refused the opportunity and instead directed our inquiry to NICE.
Helen Knight, director of medicines evaluation at NICE, said she was ‘extremely disappointed’ not to recommend the use of Enhertu.
She said: “The backdrop to the commercial discussions was the independent appraisal committee’s belief that, based on the available evidence, Enhertu represents a significant development for people with HER2-low advanced breast cancer who currently have limited chemotherapy options and most have no targeted treatments available to them.
“However, a key uncertainty in estimating Enhertu’s cost-effectiveness was how much longer people on Enhertu live compared with those receiving standard treatment in the future. The independent committee carefully considered all the evidence and applied its judgement on the most clinically plausible approach on which to base its decision.
“Despite accounting for the condition’s severity by applying a severity modifier, and accounting for innovation and uncaptured benefits, the cost the NHS was being asked to pay was too high in relation to the benefits it provides for it to be recommended for routine use in the NHS.
“Without a commercial arrangement that results in a price that represents a cost-effective use of NHS resources, NICE cannot recommend Enhertu.”
Charity Breast Cancer Now has launched the Enhertu Emergency petition to call on NHS England and the drug companies to do everything possible to ensure this drug is available on the NHS and give hope to patients like Tracy.
The charity needs 145,000 signatures – and if you would like to help you can click here.
What do you think? Should the medicine be made available on the NHS? Tell us your views in the comments below...
