This is a deeply personal post and comes with a trigger warning for cancer.
Over the weekend my amazing little sister shared a campaign she’s doing with Breast Cancer Now, as part of their More Time to Live campaign: Jess has secondary breast cancer, and is currently denied access to a treatment called Enhertu on the NHS that could give her six more months to live, maybe more.
That’s six more months with her children, with her husband, and with me and her family. Six more months for her to laugh and sing and love. To smell the flowers, hear the birds, walk the dog, cuddle her cats, eat cake, read books – do all the important stuff, and just be. Here. With us.
It’s not enough time – it will never be enough – but it’s immeasurably precious to us. NICE (who set NHS guidelines) have to reverse this callous decision now. The drug companies have to renegotiate. Now. For my sister, and for the 1,000s of women in England, Wales and Northern Ireland also affected. Their lives are invaluable. Our lives are invaluable.
Right now Jess is urging the pharmaceutical companies AstraZeneca and Daiichi Sankyo to take this opportunity to submit a new commercial offer for Enhertu for HER2-low secondary breast, after it was rejected for use on NHS in England in 2024.
And I’m asking for your help – here’s her campaign post on Facebook, Instagram and LinkedIn – please share my sister’s story. You can sign up for campaign updates here, and read more about Breast Cancer Now’s More Time to Live campaign here. There’s a template on their page to email your MP (it’s very easy, the more pressure the better so please do this), and details on how to contact AstraZeneca and Daiichi Sankyo directly as well.
I haven’t written about Jess’s cancer diagnosis before now – because it’s not my story to tell, and because I’m overwhelmed by seeing one of the people I love most in the world being dealt such a shitty hand by the universe, and then treated like crap by the powers that be.* And because I’m crying while I write this and can’t really see what I’m typing. So here are Jess’s own words:
“After several wonderful cancer free years following primary breast cancer, enjoying the juggle of being a mum and working, I was diagnosed with secondary breast cancer in my lymphatic system, bones and lungs.
“In 2024 I started on Capecitabine and saw great results - it shrank everywhere! Although I have had some side effects from the drug, such as very sore feet, I had a wonderful year of adventures with my kids. It's been incredible to be a 'normal' mum during these times.
“Unfortunately, the Capecitabine has stopped working. All the next treatments on the NHS in England are hardcore chemo drugs with all the lovely side effects such as immune system compromise and hair loss - the very visible reminder to my kids of what is happening.
“If I lived in Scotland, I would be eligible to take the drug Enhurtu, but not in England after it was rejected for use on the NHS in 2024. Enhertu being available could mean the difference of me dying in the middle of my daughter’s GCSEs or being around to see her through college.
“It makes me feel unvalued as a human and member of this society. It’s quite frankly unbelievable to be told it’s okay for me to die, possibly years earlier, than women in other countries who have access to this drug. But with changes coming in that will allow the NHS to spend more on drugs, there’s a sudden lifeline for more time that I’m so desperate to have.
“So, I’m asking the drugs companies to take this opportunity and please act as swiftly as possible to stop anyone else dying before being able to access this drug. Treat this as the health emergency it is and renegotiate, in good faith, as quickly as possible.
“For many of us, like myself, it's a life and death emergency. My children deserve to have their mum here for as long as medically possible.”
Thank you.
* to be clear she’s been treated like crap by NICE and their penny-pinching bureaucracy which goes against the public’s wishes. Her NHS, MacMillan and Marsden team of doctors and nurses are the BEST. They’re doing everything in their power to care for Jess, and her family.