Cancer patient in Wales denied life-extending drug

Rachel Davies is calling for a life-extending drug to be made available through the NHS in Wales

A woman whose cancer has spread to her bones, back, pelvis and neck but has been denied a life-extending drug because she lives in Wales says she "wants a chance to live".

Rachel Davies, 40, from Swansea, was diagnosed with secondary breast cancer in 2021.

The drug, called Enhertu, can give patients with a specific type of incurable breast cancer an extra six months to live on average.

It is available in Scotland, as well as 19 other countries in Europe, but not in Wales, England or Northern Ireland because the health assessment body, NICE, said it was too expensive for the NHS to fund.

Charity Breast Cancer Now has criticised the decision.

A Welsh government spokesperson said it relied on NICE's independent advice.

Rachel is currently having her final chemotherapy treatment through the NHS and said there would be a high chance of the drug working for her specific type of HER2-low metastatic breast cancer.

"I should have had this already," she said.

"My cancer probably wouldn't have progressed as much.

"I just want the chance, the chance to be able to live. That's why I'm doing this, for my son and my family, not just for me.

"My son's 18. It's been really hard for him, he's faced with knowing that his mother is ultimately going to die soon."

Rachel said the drug should be made available in Wales.

"I haven't heard any of the Welsh ministers talking about this matter. I don't think it's good enough that they follow and wait to see what England decides."

Rachel said she may have to fundraise for the drug privately.

"How much do you pay to stay alive?

"I've seen figures range from £3,000 to £11,000 for each treatment, which you've got to have every three weeks. I've heard of some women who've sold their house."

Her application for specialist funding from her local health board was rejected.

Swansea Bay University Health Board said it "carefully considers all requests for the funding of treatments that fall outside normal treatment protocols" and takes NICE recommendations into account.

It added: "We do not have unlimited resources to be able to agree to all requests and as a result we were unable to support this application on this occasion."

In July, NICE decided not to recommend the drug, saying it would not be cost-effect and called on pharmaceutical companies to offer a fairer price.

Prof Arwyn Tomos Jones from Cardiff University's School of Pharmacy said the process of producing the drug was costly.

"Enhertu is a really good example of what we would call a biological drug, and right from initial experiments in a laboratory through to the clinic, they are much more expensive," he said.

"It's a lot more costly, generally, than what you would class as a small molecule drug that you can chemically synthesise."

Prof Arwyn Tomos Jones from Cardiff University says the type of drug is expensive to produce

Breast Cancer Now charity said the situation was "absolutely devastating".

"We think that there are around 1,000 women, and we think about 40 women a year in Wales, who could benefit from access to the Enhertu drug," said the charity's Melanie Sturtevant.

"Women are telling us that this extra time is just invaluable."

A Welsh government spokesperson said cancer was "one of the NHS's top planning priorities".

"NICE considered whether Enhertu should be routinely available but has concluded the cost outweighs the benefits to patients and the NHS."

Companies AstraZeneca and Daiichi-Sankyo said they "disagreed" with the decision and were "committed to working with NICE to find a way forward for patients".

"We are calling on NICE to evolve the way treatments are assessed for patients in England and Wales to create a system that enables equitable access for patients in line with other countries."

A NICE spokesperson said: "Recent analysis shows the severity modifier is doing what it was designed to do".

According to the Association of the British Pharmaceutical Industry, the severity modifier in 2022 "was introduced to provide an additional weighting to the 'value' of some medicines which treat more severe conditions".

The severity modifier replaced the previous end-of-life modifier, "offering a broader approach and potentially benefiting patients with a wider range of conditions than was the case".

Helen Knight, director of medicines evaluation at NICE, said it was "deeply disappointed" not to be able to recommend Enhertu for use in the NHS.

"The companies did not put forward a new price, so we have no choice but to publish our final decision which is not to recommend the medicine in this group of patients."