Mum who has never smoked paid £150,000 for drug to battle lung cancer

A mum diagnosed with a rare lung cancer despite never having smoked has spent her life savings and sold jewellery to fund the drugs keeping her alive. Elaine Lynch, 59, from Solihull, needs the life-saving drug Enhertu but it is not available on the NHS. Instead she and husband, Chris, 61, fork out £7,294 every three weeks to get it directly from the pharmaceutical company.

Elaine was diagnosed in August 2021 having suffered no symptoms until she suddenly coughed up blood and immediately went for a scan. Further scans revealed cancer had spread to her spine and she was told she it was terminal, undergoing chemotherapy and radiotherapy to shrink the tumour. When a biopsy showed Elaine had a rare mutation called HER2 and the tumour grew again, spreading to her brain, in April 2023, she was advised to take targeted drug Enhertu.

Elaine, a former business manager at a primary school, said: "It's devastating. We want the same chance as anyone else, they don't know how long you could live. I wasn't short of breathe. I didn't have chest pain. I've never smoked. My only symptom was when I coughed into my hand and there was blood. It's very traumatic, you're perfectly fine one day and then the next you're life had ended. It's such a shock. It rocks your world."

The couple estimate they have spent £150,000 on the drug and administrative fees in the last 12 months . This includes a pay out from Elaine's job, their life savings, the sale of jewellery and £50,000 donated through a GoFundMe campaign set up by her son Adam, 36, and daughter Ellie, 34.

Enhertu is licensed in the US, Canada and the EU for lung cancer patients but not in the UK. It is working for Elaine but she is running out of money to afford it. She had hoped it would be approved and licensed by the National Institute for Health and Care (NICE) this year but pharmaceutical company Daiichi Sankyo decided not to make an evidence submission. It comes after NICE rejected the same drug for breast cancer patients in England and Wales.

Elaine 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 horrible situation to be in. They [Daiichi Sankyo] are not bothering with people that are dying. They see it as a waste of money." She is petitioning for the drug to be made available and wants to help others like her.

A Daiichi Sankyo spokesperson said: "We have made the difficult decision to withdraw our application from the NICE appraisal process.
"This decision was driven by the significant challenges posed to some late-stage oncology medicines by the new appraisal methods implemented by NICE. We remain committed to ensuring that patients across the globe who can benefit from this treatment have access to it.

"However, 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 that the new formula would categorise this lung cancer setting as ‘medium severe’. Daiichi Sankyo and AstraZeneca remain committed to finding a way forward for these patients – one that appropriately recognises the severity of this disease and the value of the medicines that target it."

A spokesperson from NICE said: "We are unable to make a recommendation 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.

"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. 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." To sign Elaine's petition click here.