Non-smoker with lung cancer forced to spend £150k on medicine not available on NHS

A woman who has never smoked was diagnosed with a rare form of lung cancer and has spent £150,000 on drugs to keep her alive. Elaine Lynch, aged 59 and from Solihull, had no symptoms until she coughed up blood on August 31, 2001.

After a CT scan and chest x-ray, she was diagnosed with non-small cell lung cancer 24 hours later in August 2021. More scans revealed the cancer had spread to Elaine's spine and she was told it was stage four and terminal.

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

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But the drug - Enhertu - is not currently available on the NHS for lung cancer. Elaine and her husband, Chris, 61, a duty manager, have instead forked out £7,294 every three weeks for it from the pharmaceutical company.

They estimated they had spent £150,000 on the drug and administrative fees in the last 12 months - using their life savings and £50,000 donated by strangers. They had hoped it would be approved and licensed by the National Institute for Health and Care (NICE) this year but the pharmaceutical company Daiichi Sankyo decided not to make an evidence submission.

NICE rejected the same drug for breast cancer patients in England and Wales. Elaine, an ex-business manager at a primary school, said: "We've spent £150,000."

"It's devastating. We want the same chance as anyone else. They don't know how long you could live."

Before coughing up blood on three years ago, Elaine had no symptoms. She said: "I wasn't short of breath. I didn't have chest pain. I've never smoked. My only symptom was when I coughed into my hand and there was blood."

After continual bleeding, she sought medical aid that night. The next day she received her lung cancer diagnosis. A subsequent scan confirmed the cancer had spread to her spine.

"They said it was stage four and that's terminal," she said. "It's very traumatic. You're perfectly fine one day and then the next your life has ended.

"It's such a shock. It rocks your world." From October 2021, Elaine underwent three rounds of chemotherapy and subsequent radiotherapy - shrinking the tumour.

However, when immunotherapy proved ineffective and the tumour began to grow again, further scans in April 2023 revealed it had spread to her brain. With targeted radiotherapy helping to shrink these, Elaine was advised the optimal treatment for her would be a drug called Enhertu. The medication is licensed for lung cancer sufferers in the US, Canada and EU, but remains unlicensed in the UK.

It's the same drug given to treat HER2-low breast cancer patients across Scotland and Northern Ireland. Elaine and Chris believed the NHS would license the drug in July this year but it had to first gain approval from NICE. Chris said: "It was the light at the end of the tunnel. The chance to get it on the cancer fund."

Elaine has been funding the treatment herself using a settlement from her job combined with savings, even resorting to selling her jewellery to cover the costs.

Her kids, Adam, 36, and Ellie, 34, launched a GoFundMe campaign which succeeded in raising about £50,000. Although the drug is working and reducing Elaine's tumours, she is running out of money.

She said: "I'm doing really well on it. We had high hopes that we'd be able to stop paying now."

"That money we wanted to use to go away and enjoy our time. You want to make memories with your family. It's really a horrible situation to be in."

Chris said: "It doesn't look like it is going to be made available for lung cancer patients. It's unacceptable."

Daiichi Sankyo was expected to present an evidence submission to NICE, but on May 29, 2024, Elaine and Chris discovered that it didn't happen.

Elaine said: "They [Daiichi Sankyo] are not bothering with people who are dying. They see it as a waste of money."

She has started a petition demanding access to the medication and pledged her support for others in her situation. She insisted: "This is a personal fight and there will be others behind me."

You can show your backing by signing Elaine's petition here - https://www.change.org/p/lung-cancer-patients-right-to-live/u/32575322.

Daiichi Sankyo said: "We have made the difficult decision to withdraw our application from the NICE appraisal process of ENHERTU (trastuzumab deruxtecan) for the treatment of HER2-mutated unresectable or metastatic non-small cell lung cancer in the UK.

"This decision was driven by the significant challenges posed to some late-stage oncology medicines by the new appraisal methods implemented by the National Institute for Health and Care Excellence (NICE). The current appraisal framework and recent methodological changes introduced by NICE have impacted our ability to present a viable case for reimbursement in England, as we project the new formula would categorise this lung cancer setting as 'medium severe'.

"We firmly 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 appropriately recognises the severity of this disease and the value of the medicines that target it."

A spokesperson from NICE said: "NICE is unable to make a recommendation about the use in the NHS of trastuzumab deruxtecan for treating HER2-mutated advanced non-small-cell lung cancer in adults after platinum-based chemotherapy. This is because the company did not provide an evidence submission.

"We will review this decision if the company decides to make a submission in the future. NICE single technology appraisals are driven by company submissions, and we are unable progress topics without this information. However, NICE stands ready to review terminated appraisals should the company decide to make a submission."

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

"So, as well as just those that extend survival in the last two years of life, we now value highly treatments that improve quality of life, those that treat other (non-end-of-life) cancers, and those for other non-cancer conditions that have dramatic and far-reaching impacts on patients.

"As of the end of May this year 15 technology appraisals had been published by NICE where the criteria for a severity modifier had been met."