Sophie Blake has a ‘ticking timebomb’ inside her and is determined to make memories with her teenage daughter. But she says they are being denied a life-extending ‘wonder drug’
A terminally ill mum says she is losing friends too soon because the Government won’t approve a life-extending drug. Sophie Blake, 53, from Brighton, has been diagnosed with incurable stage four breast cancer.
She is devastated that she and her friends are being denied access to the groundbreaking drug Enhertu. In just a few weeks she has lost two people close to her who could have benefited from ‘precious’ extra time, one a mum with a five year old son.
The drug is available to women around the world, but is currently being denied to women living with HER2-low stage 4 secondary breast cancer in England and Wales and northern Ireland. It has been rejected for use on the NHS despite it offering people the hope of six months more to live.
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“I have lost so many friends who desperately needed this treatment,” Sophie said this week.
“I lost another fellow campaigner and dear friend today, a mother whose life could have been extended, giving her more time with her children. It is devastating and frankly, utterly shameful. Another friend of mine who died a week and a half ago, she was 39 with a five-year-old. Women are dying prematurely because of this decision.”
Sophie, who has an 18-year-old daughter called Maya Nicholls-Blake, was diagnosed in May 2022 with secondary breast cancer which spread to her liver, lungs, lymph nodes, pelvic bone and ended up growing on her skin.
Currently she says the ‘cancer is asleep’ after having a targeted cancer drug but she says: “It’s like having a ticking time bomb inside me. I live scan by scan.”
“I’m just waiting for it to return and living with that horror of it could return any day. It (the drug) would buy me valuable extra time to live with my daughter, to be alive, to make more memories, to be her mother longer. I absolutely don’t have a death wish.”
She said not having the drug has “taken away hope for us and women in England, Wales and Northern Ireland.” She says they “have been made to feel that our lives are not valued whilst countries all over the world and in Europe have access to it.
The National Institute for Health and Care Excellence (NICE) which provides national guidance and advice to improve health and social care turned the drug down in 2024, as not being cost effective.
“Metastatic breast cancer is the biggest killer of women aged 35–64, yet in 2022 NICE downgraded it from ‘severe’ to ‘moderate severe’ without consulting oncologists, when introducing its severity modifier.
“As a result, funding that should be available for the latest treatments has been diverted elsewhere. Breast Cancer Now has been “sounding the alarm” with 250,000 people signing a petition calling for change.
“Despite this, women continue to die. My own oncologist described Enhertu as a ‘wonder drug’ and was flabbergasted that it could be rejected,” Sophie.
“Our fear is that drug companies will no longer go to NICE for drug approvals with the latest treatments, as they know that the money in the kitty hasn’t gone up in 20 years, and now even less is available. It just won’t be worth their while.
“This is costing women their lives, and time is something we simply do not have.”
She claims oncologists were “absolutely shocked” when metastatic breast cancer, with a medium lifespan of three to five years, from severe to moderate severe.
“It’s the biggest killer of women in the UK between the ages of 35 and 64.
“When you get that diagnosis your life is in the hands of your treatments and there’s no rhyme or reason why some people respond well and some don’t.
“There aren’t many lines of treatments available for secondary breast cancer so many end up going on trials and often have to fight to access trials as well.
“So you literally from the moment you’re diagnosed spend the rest of your life advocating and fighting for the right treatments. to be heard, to be listened to, for scans, waiting for scan results, to get those latest drugs.
“You think arms will be wrapped around you and you’ll be taken care of as a stage four patient, but it feels like you just become more forgotten about. It’s like you’re expendable.
“The precious time we have left living should be about making memories with our families, living as good a life as we can not fighting constantly and campaigning and using up that precious time. It’s so unfair. It really is. “
NICE said it was unable to recommend Enhertu as the companies and NHS England were unable to reach an agreement on its price.
A NICE spokesperson said: “We are extremely disappointed that talks to reach a price agreement that would have made advanced breast cancer drug Enhertu available to around 1000 women in England and Wales have not been 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. We have done all we can to try and achieve that.”
