Mum who never smoked paid £150,000 for drugs to fight lung cancer

A mother diagnosed with a rare lung cancer, despite never smoking, spent her life savings and sold jewelery to fund the drugs that keep 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, pay £7,294 every three weeks to get it direct from the drug company.

Elaine was diagnosed in August 2021 without experiencing any symptoms until she suddenly coughed up blood and immediately went for a scan. Subsequent scans showed the cancer had spread to her spine and she was told it was terminal, undergoing chemotherapy and radiotherapy to shrink the tumour. When a biopsy showed Elaine had a rare mutation called HER2 and the tumor grew again, spreading to her brain, in April 2023, she was advised to take the 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 breath. I didn’t have chest pain I didn’t never smoked. My only symptom was when I coughed in my hand, it’s very traumatic, you’re perfect one day and then your life is over.”

The couple estimate they spent £150,000 on drugs and administration fees in the last 12 months. This includes a payment from Elaine’s job, their life savings, the sale of jewelery and £50,000 donated through a GoFundMe campaign set up by her son Adam, 36, and her daughter Ellie, 34 years old.

Enhertu is licensed in the US, Canada and the EU for lung cancer patients, but not in the UK. It works for Elaine, but she runs out of money to afford it. She 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 said: “I’m really good at it. We had high hopes that we would 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. They (Daiichi Sankyo) don’t bother with people dying. They see it as a waste of money. She is petitioning to make the drug available and wants to help others like her.

A Daiichi Sankyo spokesman said: “We have taken the difficult decision to withdraw our application from the NICE assessment process.
“This decision was prompted by the significant challenges brought to some advanced stage cancer medicines by the new assessment methods implemented by NICE. We are committed to ensuring that patients around the globe 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’. Daiichi Sankyo and AstraZeneca remain committed to finding a way forward for these patients – one that properly recognizes the severity of this disease and the value of the medicines that target it.”

A NICE spokesman said: “We cannot make a recommendation as the company has not provided evidence. We will review this decision if the company decides to make a submission in the future. Unique NICE technology ratings are driven by company submissions. , and we cannot progress topics without this information. However, NICE is ready to review completed assessments should the company decide to make an application.

“NICE has moved away from the narrow and restrictive end-of-life modifier to encompass a wider and fairer range of treatments.
“So, in addition to those that extend survival in the last two years of life, we now place a high value on treatments that improve quality of life. At the end of May this year, 15 technology assessments were published by NICE where the criteria for a severity modifier were met. To sign Elaine’s petition click here.