Bristol mum pays £5k every three weeks to stay alive because her cancer treatment is not approved in UK

A desperate patient from Bristol has to pay £5,000 every three weeks to keep herself alive as the treatment she needs is not approved for her type of cancer in the UK.

Julie Woodington, 56, says she might have to sell her home to be able to afford the life-saving treatment.

And her ordeal is made all the more heart-breaking as she sits next to other cancer patients in her ward who receive the same treatment for free - as they have the 'right' type of cancer.

Julie, who was diagnosed with late-stage HER2- positive lung cancer three years ago, says her drug is approved in the EU and the US - but not in the UK.

The mother-of-two 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.

The "devastating shock" of what Julie's family have described as an "out of the blue diagnosis" has hit the Woodington's and their loved ones hard - as Julie was a non-smoking, active and otherwise healthy woman.

The mother-of-two from Bristol 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."

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.

NHS patients are missing out on these life-drugs due to pharmaceutical and health body restrictions on who is able to benefit from them. And Julie says she is "one of those people".

On 28 December 2020, Julie described waking up with a "funny blur" in her vision.

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 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.

When contacted about Julie's situation, the NHS recommended to contact NICE (National Institute for Health and Care Excellence) but said they would "not be best" to comment.

A spokesperson for NICE 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.

"In the UK, trastuzumab deruxtecan has been granted conditional authorisation as monotherapy for the treatment of adult patients with unresectable or metastatic HER2-positive breast cancer who have received one or more prior anti-HER2-based regimens and as monotherapy for the treatment of adult patients with advanced HER2-positive gastric or gastroesophageal junction (GEJ) adenocarcinoma who have received a prior trastuzumab-based regimen. It is not yet licensed for any other cancer or disease.

"We are working diligently to try to bring this medicine to as many appropriate people as possible.

"Daiichi Sankyo and AstraZeneca have a global programme of clinical trials to explore the potential of trastuzumab deruxtecan and we are working closely with regulators, health authorities and commissioning bodies around the world to expedite approval of this medicine for patients across a number of different cancers where there is the potential of clinical benefit.

"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.

"Following recent dialogue with NICE, the proposed NICE appraisal will be rescheduled to align with the availability of a more mature future data cut from the DESTINY-Lung02 trial to allow for a more informed assessment of appropriate routes to access in the UK.

"We appreciate this delay is disappointing news; however given the complexities of UK health technology appraisals, it is important that any submission is supported by the most robust data possible."

Julie's MP, Chris Skidmore, has been made aware of her case since May this year.

A spokesperson for Chris said: "Chris has been supporting his constituent Julie since May of this year and hs 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."

To support Julie with her life-saving treatment visit: https://www.gofundme.com/f/help-get-our-mum-the-cancer-treatment-she-needs