Former School Business Manager Elaine Lynch (58) from Solihull, England was diagnosed with Stage Four metastatic lung cancer in September 2021, the day before her daughter's wedding.

Bizarrely, she has been told she needs to self-fund each round of her £9,040 treatment even though the same drug is available on the NHS for breast cancer patients.

Elaine has already endured gruelling rounds of chemotherapy, immunotherapy and radiotherapy.

In March 2023, Elaine's oncologist did a biopsy and discovered she had a rare mutation called HER2 which is found in fewer than 3% of lung cancers but 20% of breast cancers.

The treatment her oncologist recommended was a new drug called Enhertu which was licensed to treat breast cancer in 2022.

Unfortunately, use of the drug for other cancers is currently off-label.

Because Elaine's cancer began in her lungs, the family was told the devastating news that they would have to pay £9,040 every three weeks for the treatment.

So far, they have paid £35,000 for four rounds of the treatment which Elaine and her oncologist believe is working.

Elaine's family have since started a GoFundMe to help pay for her treatments and raised £18,400 so far.

They have also taken the fight to big Pharmaceutical corporations AstraZeneca and Daiichi Sankyo, even starting a Change.org petition to help every cancer patient have access to new treatments.

“In September 2021 the day before my daughter’s wedding I was diagnosed with Stage 4 metastatic lung cancer,” said Elaine.

“I have never smoked a day in my life. My only symptom was that the day before I was diagnosed I coughed up a tiny bit of blood.

“Life as we knew it ended on that day. What has followed has been gruelling rounds of chemotherapy, immunotherapy and radiotherapy.

“In March 2023, my oncologist said that they had sent a biopsy off for testing and they had discovered that I had a mutation called HER2, this is very rare and is found in less than 3% of lung cancers.

“The treatment my oncologist recommended was a drug called Enhertu. Unfortunately although this drug is licensed for use in the UK it is only licensed for breast cancer.

“The hospital had stocks of the drug in the pharmacy but they were not allowed to give it to me because I had the ‘wrong’ cancer.”

Elaine's oncologist appealed to the drug company to try and get access to the drug on compassionate grounds but it refused and offered it for a staggering £9,040 every three weeks.

“My oncologist said he would appeal to the drug company to see if they would supply it to me on compassionate grounds, he was fairly confident this would work,” she said.

“Two weeks later we heard that the drug company had refused to give us the drug on compassionate grounds, however they were quite happy for us to pay for it.

“We have been told that once our money runs out and we can no longer self fund then the treatment will stop even though it is working. They will switch to an alternative less effective drug - funded by the NHS.

“The cost was worked out at £9,040 every three weeks. My children set up a GoFundMe site and with the help of family, friends and complete strangers together with most of our savings we have so far managed to pay over £35,000 so far for four treatments.

“The good news is, the drug is working, the bad news is there is no end in sight, the treatment will continue until it stops working so there is a very real possibility that we will have to sell the house to fund further treatment.

"We are still trying all avenues to try and get Enhertu and my oncologist Professor Gary Middleton recently put in an application for expanded access to investigational products to Daiichi Sankyo.

"The professor showed us what he had written yesterday and he put a good case together to gain access to the Enhertu drug through this scheme, i.e. it’s working, it’s the best treatment for the patient, the patient is fit and the perfect candidate and, also, she can no longer afford it after already paying £35,000.

"Unfortunately, Daiichi Sankyo said no yet again."

Elaines has borne the brunt of a very unfair system that dictates if the cancer began in her breast she would have access to the drug on the NHS free of charge.

“Cancer is cancer, I can sit in the chemo centre next to someone who is having the same drug for free simply because my cancer is in a different place, how is this fair?,” asks Elaine.

“This could happen to anyone. Over 165,000 have signed our petition on change.org and they all support us.

“In the last three months we have worked tirelessly to make a change, we have contacted NHS England, NICE, AstraZeneca, Daiichi Sanyko, UHBirmingham NHS Trust, our local MP and other members of the current government.

“No one seems to be bothered, they all quote policy at us at every opportunity but not one of them will stick their neck out and do the right thing.

“Fighting cancer is exhausting enough but we are also fighting red tape and bureaucracy which makes it twice as hard, all of us are exhausted.

“Cancer steals so much from you, your health, your hair, your independence and eventually your life but we shouldn’t have to be wasting our precious time fighting for what should be available free on the NHS for all those who need it, not just the chosen few.

“We are working hard to find hope in the hopelessness and we won’t give up, not just for me but for all those in the queue behind me.”

ENDS