Woman with rare lung cancer, despite never smoking, forced to spend £150,000 on drugs

A woman has been diagnosed with a rare lung cancer despite never having smoked and spent £150,000 of her savings on a drug to keep her alive. Elaine Lynch, 59, had no symptoms until she suddenly coughed up blood.

Following a CT scan and chest X-ray, she was diagnosed with non-small cell lung cancer 24 hours later – in August 2021. Further scans showed it had spread to Elaine’s spine and she was told it was in stage four and terminal stage.

Elaine underwent chemotherapy and radiotherapy which successfully shrunk the tumour. A biopsy showed she had a very rare mutation called HER2, and when the tumor started growing again in April 2023, she was advised to take a targeted drug.

Unfortunately, the drug – Enhertu – is not currently available on the NHS for lung cancer. Elaine and her husband Chris, 61, a service manager, instead paid £7,294 every three weeks for it direct from the pharmaceutical company.

They estimate they have spent £150,000 on drugs and administration fees in the last 12 months – using their savings and £50,000 donated by strangers. They hoped it would be approved and licensed by the National Institute for Health and Care Excellence (NICE) this year, but pharmaceutical company Daiichi Sankyo decided not to submit evidence.

It comes after NICE rejected the same drug for breast cancer patients in England and Wales. Elaine, a former business manager at a primary school, from Solihull, West Midlands, said: “I spent £150,000 – it’s devastating. We want the same chance as everyone else. They don’t know how long you could live.”

Elaine had no symptoms before she coughed up blood on August 31, 2021. She said: “I had no shortness of breath. I had no chest pain. I have never smoked. My only symptom was when I coughed into my hand. and there was blood.”

Elaine continued to cough up blood and went to the hospital that night. The next day she was diagnosed with lung cancer. She had a positron emission tomography scan that showed the cancer had spread to her spine.

She said: “I was very upset. I was on my own. They said it’s stage four and that’s terminal – it’s very traumatic. You’re perfect one day and then the next life it’s over. shock. It shakes you the world.”

Elaine had three rounds of chemotherapy from October 2021, followed by radiotherapy – which shrunk the tumour. She also did immunotherapy, but found it didn’t work for her and the tumor started growing again.

A follow-up scan showed the tumor had spread to her brain in April 2023. Elaine had targeted radiotherapy to shrink them, but was advised the best treatment was a drug called Enhertu.

The drug is licensed in the US, Canada and the EU for lung cancer patients, but not in the UK. It is the same medicine used to treat HER2-low breast cancer patients in Scotland and Northern Ireland. Elaine and her husband Chris believed the drug would be licensed by the NHS in July this year, but first it had to go through the process to be approved by NICE.

Chris said: “It was the light at the end of the tunnel. The chance to get it due to cancer”.

Elaine used a paycheck from work and her savings to pay for drugs in the meantime and even had to sell jewelry to afford it. Her children – Adam, 36, and Ellie, 34 – set up a GoFundMe which has raised around £50,000.

The drug works and shrinks Elaine’s tumors, but now she runs out of money to afford it. She said: “I’m doing really well.

“We had high hopes that we would be able to stop paying now. The money we wanted to use to go away and enjoy our time. You want to make memories with your family. It’s a really horrible situation where you are.”

Chris said: “It doesn’t look like it will be available for lung cancer patients. It is unacceptable”.

Daiichi Sankyo was due to submit evidence to NICE, but Elaine and Chris found out this did not happen on 29 May 2024. Elaine said: “They (Daiichi Sankyo) don’t bother with people dying. They see it as a waste of money.”

Elaine is petitioning to make the drug available and wants to help others like her. She said: “This is a personal fight and there will be others behind me.”

A spokesperson for Daiichi Sankyo said: “We have taken the difficult decision to withdraw our application from the NICE assessment process of ENHERTU®▼ (trastuzumab deruxtecan) for the treatment of unresectable or metastatic small cell lung cancer, unresectable or with HER2 mutation in Great Britain.

“This decision was prompted by the significant challenges brought to some advanced stage cancer medicines by the new assessment methods implemented by the National Institute for Health and Care Excellence (NICE).

“We remain committed to ensuring that patients around the world who can benefit from this treatment have access to it. However, the current assessment framework and recent methodological changes introduced by NICE have affected our ability to make a viable case for reimbursement in England, as we project that the new formula would classify this lung cancer setting as ‘moderately severe’.

“We strongly believe in the value and efficacy of trastuzumab deruxtecan as an important option for eligible patients facing this terminal form of lung cancer.

“Daiichi Sankyo and AstraZeneca remain committed to finding a way forward for these patients in England, Wales and Northern Ireland – one that properly recognizes the severity of this disease and the value of the medicines that target it.”

A NICE spokesman said: “NICE cannot make a recommendation on the NHS use of trastuzumab deruxtecan to treat HER2-mutated advanced non-small cell lung cancer in adults after platinum-based chemotherapy.

“This is because the company did not provide a submission of evidence. We will review this decision if the company decides to make a submission in the future.

“NICE single technology assessments are driven by company submissions and we cannot progress subjects without this information. However, NICE is ready to review completed assessments should the company decide to make a submission.

“Companies often re-engage with us after a termination when they are able to provide a more robust and comprehensive delivery. NICE has moved away from the narrow and restrictive end-of-life modifier to encompass a wider and fairer range of treatments.

“So, as well as just those that extend survival into the last two years of life, we now highly value treatments that improve quality of life, those that treat other cancers (not at the end of life) and those for other types of cancer. – cancerous conditions that have a dramatic and far-reaching impact on patients.

“At the end of May this year, 15 technology assessments were published by NICE where the criteria for a severity modifier were met.”