A 40-year-old woman has passed away after being denied a life-extending cancer drug unavailable in Wales.
Rachel Davies, from Swansea, was diagnosed with secondary breast cancer that spread to her bones, back, pelvis, and neck. She shared her death in a planned social media post.
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!”
While Enhertu is available in Scotland and 19 other European countries, it is not offered in the rest of the UK. A Welsh government spokesperson explained that they rely on independent advice from the health assessment body NICE, which deemed it too expensive for the NHS to fund.
Rachel shared: “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 many ways, I have to thank it for teaching me how to live fully. What I wish is that everyone could 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”
Enhertu can extend the life of patients with a specific type of incurable breast cancer by an average of six months.
The charity Breast Cancer Now, which criticized the decision not to provide the drug, 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.”
When receiving her final chemotherapy treatment through the NHS last month, Rachel told BBC Wales News she believed there was a high chance the drug would work for her 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.”
‘She was the best of us’ Rachel’s oncologist from Swansea Bay health board applied for specialist funding but was turned down.
The health board stated it “carefully considers all requests for the funding of treatments that fall outside normal treatment protocols” and follows NICE recommendations.
In July, NICE decided not to recommend the drug, calling it cost-ineffective and urging pharmaceutical companies to offer a fairer price.
The health board expressed its condolences: “We are very sorry to hear of Rachel’s loss and express our deepest sympathy to her family and friends.”
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.”