Wednesday, 23 April 2014


Since June last year I've been taking part in a drug trial for a chemo/targeted therapy called TDM1 (trade name Kadcyla).  This time last year I couldn't walk up a flight of stairs without panting for breath due to the spread of breast cancer into my lungs.  I knew it was getting worse.  I was unwell and frightened, especially as I had previously been treated with two other types of chemo without a great deal of success.  I know this disease is going to kill me but it seemed the end was hurtling towards me at speed. 

However, since starting TDM1 last year, I have had three CT scans.  These scans have shown either shrinkage of the lung mets or stability.  My breathing has improved significantly and I'm able to get out and about, enjoy life and not quake in fear at the sight of a staircase.  

In the United States TDM1 is approved by the Food and Drug Administration and has been available to people there since February 2013.  While TDM1 doesn't work for everyone, I've read, on US online forums, of numbers of people who have had several months of improved health due to TDM1.

Here in the UK TDM1 has been undergoing consideration by the National Institute for Health Care and Excellence (NICE).  NICE  determines which treatments will be provided and funded by the National Health Service.

Today NICE have announced their decision NOT to approve TDM1.  It's not cost effective you see.  I have to say this isn't a massive surprise.  NICE have a bit of a track record for this sort of thing, click here for how they turned down another treatment for secondary breast cancer, Perjeta. 

Am I angry?  You betcha.  I don't think I can express how angry I am.  Certainly not without swearing.

The 'problem' with any treatment for secondary breast cancer is that, at best, it's going to extend life NOT be a cure.  I sometimes think it would be easier for NICE to just issue a blanket statement to people like me with incurable cancer along the lines of 'you're screwed so why should we pay for a few months of extra life'.  How dare these callous fuckers sit in judgement on the value of a chance at an improved and longer life for those of us already facing a massively reduced life expectancy.

Even if, God forbid, TDM1 stops working for me tomorrow, I am immensely grateful for the last ten months of relatively good health and the chance I've had to enjoy being with family and friends,  living a 'normal' life and making memories.  Yet NICE seem to be able not only to put a price on all this put to determine it's not worth the financial cost.  What a bunch of bastards.

TDM1 is expensive at 90,000 pounds per person per year.  Knowing nothing about the drug company's research and development costs etc I've no idea if this is exorbitant, but I do acknowledge the drug companies are not generally known for their altruism.

However, the bottom line is that a drug that enables some patients more time with their friends and families is being denied to people.  In my book that's immoral.

This decision isn't going to change my treatment as I'm lucky enough to be on a drug company funded trial but is very bad news for anyone in the UK who thinks TDM1 might help them.  If you are in this position I would urge you to ask your oncologist if places are still available on the trial or to access funding, if you are based in England, through the Cancer Drugs Fund (this fund is due to cease in 2016).

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