Skip to content

Woman, 40, denied cancer drug announces her death

BBC Rachel Davies standing in her living room during her campaign to make the life-extending drug Enhertu to be made available through the NHS in Wales. She is wearing a green jumper, and facing the camera.BBC
Rachel Davies has died after calling for a life-extending drug to be made available through the NHS in Wales

A 40-year-old woman who was denied a life-extending cancer drug because it is not available in Wales has died.

Rachel Davies, from Swansea, who was diagnosed with secondary breast cancer, which spread to her bones, back, pelvis and neck, announced her death in a planned post on social media.

She wrote on Facebook: "If you're reading this, then it means I'm no longer here, I can't say to a better place as that is impossible!"

Enhertu is available in Scotland, and 19 other European countries, but not the rest of the UK, and a Welsh government spokesperson said it relied on independent advice from health assessment body NICE, which called it too expensive for the NHS to fund.

Rachel wrote: "What a life I've had, and surprisingly, since cancer entered my life.

"When I look through my photos, I've done and seen so much since cancer, and probably some of my best memories are from this period."

"In so many ways, I have to thank it for learning how to live fully. What I wish is that everyone can experience the same but without needing cancer. Get out there, experience life fully, and wear that dress!!!"

"I'm so sad to leave my family and friends, I wish I never had to go.

"I'm so grateful to have had Charlie young so that I've watched him grow into the man he is today, I'm unbelievably proud of him. I am thankful I had the opportunity to have Kacey and Jacob in my life."

"Lastly, I was blessed to meet the love of my life, my husband, and my best friend. I have no regrets, I have had a wonderful life.

"So to all of you, don't be sad I've gone. Live your life and live it well. Love, Rachel x"

'We just want more time to be able to live'

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

The charity Breast Cancer Now, which criticised the decision not to make the drug available, said: "Rachel was a tireless campaigner for the drug Enhertu, and an incredible advocate for people living with secondary breast cancer.

"We will miss you Rachel. Thank you for being such an important part of our campaigning work."

Family photo Rachel and her husband stand on the railing of a ship at sea as the sun sets in the background. She has short hard and a green dress and is leaning into his shoulder with her hair touching his cheek. He is a wearning a white lacoste t-shirt. Family photo
Rachel called her husband the love of her life

When receiving her final chemotherapy treatment through the NHS last month, Rachel told BBC Wales News she thought there would be a high chance of the drug working for her specific type of HER2-low metastatic breast cancer.

"I just want the chance, the chance to be able to live," she said.

"That's why I'm doing this, for my son and my family, not just for me."

"My son's 18… he's faced with knowing that his mother is ultimately going to die soon."

Family photo Rachel and her son stand arm in arm on the beach wit the sun setting in the background behind a pier. Family photo
Rachel said she was thankful to have watched her son grow into a man

'She was the best of us'

Rachel's oncologist from Swansea Bay health board applied for specialist funding, but was refused.

The health board said at the time it "carefully considers all requests for the funding of treatments that fall outside normal treatment protocols" and takes NICE recommendations into account.

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

The health board paid tribute, saying: "We are very sorry to hear of Rachel's loss and express our deepest sympathy to her family and friends."

Family photo Rachel sits on a bench at the end of a dock looking out onto a bay with beach huts as a sun set in the back ground. She is looking out towards the water, has a loose pink top, shorts and sandals with her legs crossed. Family photo
Rachel could not get the life-extending drug because it was not being offered at a fair price, NICE says

Rachel's family paid tribute to her strength and courage, saying: "We are incredibly proud of our wonderful Rachel. She was the best of us."

"We're incredibly proud of the campaigning she did, and the awareness she raised of secondary breast cancer and the need for Enhertu.

"The sadness we feel is tainted by the knowing that other families in Wales, Northern Ireland and England will go through this without access to the drug.

"We as a family are heartbroken."

NICE said: "We were sorry to hear about the death of Rachel Davies and our thoughts are with her family and loved ones".

"We were extremely disappointed that talks to reach a price agreement that would have made Enhertu available to around 1,000 women in England and Wales were not successful.

"As we've always made clear, the fastest and only guaranteed way to get medicines like Enhertu to the patients who need them is for companies to offer a fair price.

"Enhertu remains the only breast cancer treatment we've been unable to recommend for six years."