A 40-year-old woman announced her death on Facebook this past December. Rachel Davies from the UK was diagnosed with secondary breast cancer in 2021. She had tried to access a treatment that could’ve lengthened her life, but she was denied because it wasn’t approved for funding in Wales, where she lived. She and her loved ones had worked to raise money and awareness for breast cancer research before she passed, leaving her final goodbye on social media.
“What a life I’ve had…”
“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!” reads Davies’ final Facebook post on December 21.
She reflects on her life and encourages people to cherish every moment. “What a life I’ve had… 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 have no regrets”
Davies adds a special goodbye for her loved ones, including her 18-year-old son. “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.”
She concluded by saying, “So to all of you, don’t be sad I’ve gone. Live your life and live it well. Love, Rachel x.”
Unable to afford treatment
Early 2024, Davies’ sister, Melanie, started a GoFundMe, which helped with medical expenses including some alternative treatments. However, the cancer continued to spread through Davies’ body, including her liver, spine, pelvis, and legs. The ultimate goal was to pay for a medication called Enhurtu out of pocket but there weren’t enough funds for it. Davies had been denied this treatment from her health provider because it was deemed too expensive to cover. She had also applied for the drug to her local health board but was denied again.
What Is Enhertu?
Enhertu (fam-trastuzumab deruxtecan-nxki) is a drug for a specific type of breast cancer, namely metastatic human epidermal growth factor receptor 2-low (HER2-low) breast cancer. It is particularly hard to treat, and has limited treatment options. Enhertu has been shown to improve the life expectancy of people with this disease, according to Health.
The treatment involves visting a healthcare professional to administer the medication intravenously once every three weeks. Research shows Enhertu improved the overall survival rate of patients with HER2-low breast cancer compared to those who used chemotherapy.
Denied treatment in Wales
In October, Davies appeared on BBC Breakfast to speak about her experiences with cancer and her frustration at Enhertu being approved for funding in Scotland but not in Wales, England, and Northern Ireland. This was because NICE, the health assessment body, considers it too pricey to be funded by the NHS.
At the time, Davies was undergoing her final round of chemotherapy. However, she had hoped she would be receiving Enhertu at this time because of its high likelihood of helping with her specific type of metastatic breast cancer.
“I just want the chance to live”
“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.”
“I’ve seen figures range from £3,000 to £11,000 for each treatment, which you’ve got to have every three weeks,” Davies said to BBC. “I’ve heard of some women who’ve sold their house.”
Why the health board denied the treatment
Swansea Bay University Health Board explained that it “carefully considers all requests for the funding of treatments that fall outside normal treatment protocols” as well as utilize NICE recommendations. “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.”
“Too expensive”
Unfortunately, NICE did not recommend Enhertu because they believe the costs outweigh the benefits and requested pharmaceutical companies offer a more reasonable price. Meanwhile, the cost to make the drug is high, according to Prof Arwyn Tomos Jones from Cardiff University’s School of Pharmacy.
“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.”
“Absolutely devastating”
Breast Cancer Now charity sides with Davies, calling her case “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 Melanie Sturtevant on behalf of the charity. “Women are telling us that this extra time is just invaluable.”
The last post
In early November, Melanie added a personal update to the GoFundMe. “I don’t think you’re ever ready to lose someone you love. But to know you will lose them sooner because of the postcode you live in, just adds to the hurt,” she wrote. She added that Rachel was to be maid of honor at Melanie’s daughter’s wedding next fall. She implores others to continue campaigning for Enhertu to be approved to help others even though “changes may not happen in time for Rachel.” About a month later, the page published Rachel’s final goodbye.
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