13/01/2017 11:44 GMT | Updated 14/01/2018 05:12 GMT

You Have A Week To Help Keep Kadcyla Available To Women With Secondary Breast Cancer


The great Welsh politician Aneurin Bevan, main architect of the NHS, famously said "No society can legitimately call itself civilized if a sick person is denied medical aid because of a lack of means." I wonder what he would think about the recent news that the National Institute for Health and Care Excellence (NICE) would no longer be recommending the use of the revolutionary drug, Kadcyla, to women with secondary (i.e. incurable) breast cancer in England.

NICE is the national body responsible for making decisions about which treatments should be made available to patients on the NHS, using a review process which takes into account cost-effectiveness and patient quality of life. NICE is a clever acronym, with associations of coconut-flavoured biscuits, but its recommendations have far-reaching consequences for patients. I should know. The 2010 NICE guidelines deemed my risk of having an inherited mutation to be too low to warrant genetic testing on the NHS and my BRCA1 mutation was only discovered because I took part in a research study. By the time I had risk-reducing surgery, 9 months later, I'd developed breast cancer again.

According to NICE, Kadcyla does "not work well enough to justify its high cost." Yet women like Fiona, diagnosed with secondary breast cancer in June 2014, seven months after her diagnosis with primary breast cancer, know that Kadcyla can be an effective, life-extending treatment with few side-effects:

"I've been taking Kadcyla for 20 months and have an amazing life. I work, pay taxes, raise money for charity and I'm a wife, daughter, sister, aunt and friend - all thanks to Kadcyla.

To be told you have incurable cancer is devastating....that the average life expectancy for someone with secondary breast cancer is 36 months (many patients die sooner), and that only 20% of patients survive for five years, is utterly terrifying, but drugs like Kadcyla give us hope - and our lives back.

Kadcyla is a wonder drug, keeping my lung tumours stable and healing the cancerous tumours in my spine to a point where there is No Evidence of Active Disease. I know others who've had similar amazing results, enabling them to return to work, care for their families, and contribute to society at large.

Media reports give the impression that Kadcyla is an 'end of life' drug which only works for a matter of months (six months is the figure bandied about) but that is simply not the case. The median overall survival rate on Kadcyla is 30.9 months - almost three years!"

But unless NICE and Roche Pharmaceuticals (Kadcyla's manufacturer) can reach an agreement, Kadcyla will not be available to women like Bonnie, who was diagnosed with secondary breast cancer when her son was just four months old, and for whom Kadcyla would be the next drug when her current treatment stops working:

"I already feel cheated being diagnosed with secondary breast cancer at 37 with a baby, so having a drug taken away that could potentially add years to my life and give me more quality time with my son is so cruel."

Fiona, aged 49, says that those women whose Kadcyla treatment was funded through the Cancer Drugs Fund are lucky:

"Our treatment will continue to be funded, but hundreds of women will need Kadcyla as their next line of treatment and to take that option away is sentencing them to an earlier death."

The development of drugs like Kadcyla reflects the increasingly personalised treatments needed to treat cancer effectively, and are our best hope in the search for a cure. Breast cancer is not one disease and there are many types, for instance because I had triple negative breast cancer, Kadcyla wouldn't work for me. Innovative treatments are currently under development for people with triple negative breast cancer, but there's no guarantee that NICE, who haven't approved the use of a new breast cancer drug for 7 years, will recommend their routine use on the NHS, especially when they are only beneficial to a small number of patients.

And it's not just an issue for those of us with breast cancer - A.A. Gill, the provocative writer and journalist who recently died a mere month following his diagnosis of lung cancer, wrote poignantly in the Times about his discovery that he couldn't have a drug called Nivolumab which might prolong his life unless he paid for it.

Like any disease, cancer begins and ends with people - men and women from all walks of life. Ordinary people like Fiona, Bonnie and me whose rich and meaningful lives lie behind the statistics. We are irreplaceable to our families, friends and communities. Kadcyla, which is available in many other countries, including France, Germany and Canada may soon no longer be available to women in England. Can we consider ourselves a civilised society if it's within our means to treat women like Bonnie, and yet we don't? The answer is simple. We can't.

Please sign Breast Cancer Now's petition calling on NICE and Roche to reach a solution before the Consultation period ends on the 20th January 2017.

With thanks to Bonnie, and to Fiona for her vital input.

Find Tamsin at the Centre for Building Psychological Resilience in Breast Cancer and Fiona at her blog fidancingintherain