A mum of two is forced to pay £5,000 every three weeks for life-saving treatment because she has the wrong kind of cancer.
Julie Woodington, 56, said she is going to have to sell her home to fund the treatment for her lung cancer, which is approved in the EU and the US - but not in the UK. Meanwhile patients next to her on her ward with the same kind of cancer but in their breast rather than their lungs, get treatment for free in the UK.
Julie from Bristol has contacted the NHS, NICE, her local MP and both pharmaceutical companies who make the drug named Enhertu, AstraZeneca and Daiichi Sankyo - but they state there is nothing they can do for her.
Julie Woodington with her husband Mark from Kingswood in Bristol have been married since 1987 (Supplied)
The "out of the blue diagnosis" came after Juile woke up one morning with a blurry patch in her eye. The news has been a “The "devastating shock" for the Woodington family - as Julie was a non-smoking, active and otherwise healthy woman. The mother-of-two said: "It's stressful and bad enough enough fighting cancer and trying to stay alive. Now we are going to have to end up selling our house.
"There is somebody sat next to me in the hospital ward getting that treatment for breast cancer and get it for free - but because I have the wrong type of cancer they won't give it to me." The UK is lagging behind some EU countries in new cancer treatments, a recent report stated more than twice as many cancer patients in Germany and France are able to access cutting-edge treatments than in Britain.
For every 17,000 people in the UK taking a newly approved cancer drug, there were 36,000 in France, 39,000 in Germany and 234,000 in the USA, the analysis found, which included an adjustment to account for different population sizes. Pharmaceutical and health body restrictions mean NHS patients are missing out on these life-drugs. And Julie says she is "one of those people".
On 28 December 2020, Julie described waking up with a "funny blur" in her vision.
Julie's family have set up a crowdfunding cmapaign to help cover the costs of her treatment (Ben Woodington)
After a trip to the opticians, followed by a visit to the Bristol eye hospital - Julie was told she had a blister on her eye and would need to get it scanned the next day.Julie said: "I went back the next morning, they scanned my eye and told me I had stage four cancer. It had come from somewhere else in my body - and after months of testing to find the primary, they found it in my lung.I naively thought it was smokers who got lung cancer - I have always gymed, eaten well, didn't smoke, didn't drink - but I have a genetic mutation called HER2."
Julie says she has exhausted all other treatments, so has been left with no choice but to fund this therapy privately. She said: "I have had treatment after treatment, most of them have failed on me. "Enhertu is the best treatment around - but it's licensed for breast cancer, not lung cancer in the UK (it is in the US and EU though)."
Julie's bronchologist prescribes her the Enhertu in the Bristol Royal Infirmary. Julie, who has been married to her husband Mark since 1987, said she has "two beautiful children" and she "just wants to her there for them". Julie's son, Ben, added: "We are not a wealthy family, and every penny of my family's savings is being spent on enabling our Mum to buy a little more time with her family. Our hope is that one day all patients will have access to the best possible treatment for their disease and not be faced with these nightmarish decisions. Julie should be living the best part of her life right now but is forced to live this one instead."
Julie and her husband Mark are struggling to find the thousands of pounds she needs each month for medicine (Ben Woodington)
Julie has received three courses of these treatment and has one more on the 2nd January - but then says she "will have to find more money somehow" to continue. A spokesperson for NICE (National Institute for Health and Care Excellence) said: "NICE’s appraisal of trastuzumab deruxtecan for treating HER2-mutated unresectable or metastatic non-squamous non-small-cell lung cancer after one or more therapies has been delayed at the request of the company to enable them to produce a comprehensive evidence submission.The appraisal is now anticipated to begin in mid-July 2024."
A spokesperson for Daiichi-Sankyo said: "Our thoughts are with the patient and their family, we appreciate the significant impact this devastating condition has on the lives of individuals living with cancer, as well as their families and loved ones. We are working diligently to try to bring this medicine to as many appropriate people as possible. For HER2-mutated non-small cell lung cancer (NSCLC) we are going through the appropriate regulatory channels in order to obtain a UK licence. We are unable to speculate on the timelines or outcome of our licence applications, however we are committed to working closely with the regulatory authorities to support the process."
Julie's MP, Chris Skidmore, has been made aware of her case since May this year. A spokesperson said: "Chris has been supporting his constituent Julie since May of this year and has taken a number of actions on her case, including raising her case with Will Quince MP, then Minister of State for Health and Secondary Care, as well as Prof. Gillian Leng, Chief Executive of NICE, regarding the institute’s recommendations on Enhertu for patients with lung cancer.
"We are in regular contact with Julie and have reached out to her most recently today to discuss any further steps Chris could take to be of assistance to her." The family have set up a crowdfunding campaigh to help cover the costs of Julie's treatment, you can visit here to find out more.
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