|Picture from here|
Did you think I'd got all the anger out of my system with my last blog post Well more fool you.
For those who haven't been keeping up (if not why not) in my last post I was dismayed, angry and generally pissed off about the National Institute for Health Care and Excellence's(NICE)decision not to approve use of TDM1 by the UK's National Health Service (NHS). TDM1 (trade name Kadcyla)is the chemo I've been lucky enough to have been receiving, at the drug company's expense, for 10 months as part of a clinical trial.
I realise that not everyone who reads this blog has cancer or lives in the UK, so rather than labour the point I will give you the bare bones here but will provide more
NICE say that TDM1 is, at 90,000 pounds per person, too expensive to approve for NHS use. The drug manufacturers, Roche, say they have to recoup their research and development costs.
I believe that there are debates to be had about NICE's criteria, the price set by Roche and what the NHS should and should not be funding. But the bottom line is that there are people out there who will die sooner than need be because they cannot access this drug on the NHS. Appalling.
I am not sure how useful the following are but here are some actions those interested in all this could take:
- A petition asking Roche to lower the price - click here
- NICE's TDM1 appraisal consultation. Long, complicated but open for comments until 19th May - click here
- Breast Cancer Care (UK charity) will be responding to NICE's appraisal and, as part of their response, will tell NICE just how many people have contacted them with their concerns. Breast Cancer Care can be contacted at
- Write to your Member of Parliament - click here for website with contact details
The article expressed the opinion that NICE were right to turn down TDM1. Fair enough, everyone's entitled to their opinion (especially me) but, dear God, the things the author of the piece said! Read it, if you dare, by clicking here.
I have rarely been as angry as when I read this. I haven't done a massive amount of crying since this whole cancer malarkey started (preferring the crazed rabbit in headlights response)but this reduced me to tears of fury.
To refute everything I'd like to in Jenni Murray's vile, inaccurate and sanctimonious piece would take me several more paragraphs and try your patience to breaking point. Let me just say three things:
- I have had ten fantastic months on TDM1 and am certainly not the 'ravaged' pathetic creature portrayed by Ms Murray, spending my extra months waiting to die.
- Neither I, nor anyone I know with secondary breast cancer, is under any illusion that the disease will spare us. Treatment is to extend life not a 'false hope' that it will be a cure.
- If any life-extending treatment for people with a terminal illness is a 'false hope' then presumably the author advocates withdrawal of all treatment (beyond pain relief) on diagnosis. Nice.
OK, I've stopped. For now anyway. Hopefully the cat or the other-half will have done something disgraceful by the time I next post so I'll be able to tell you something at least slightly diverting. However, tomorrow I'll be seeing the surgeon who operated on my broken wrist. Unless said surgeon, known to the other-half and I as Lee Van Cleef, tells me my wrist has healed incredibly well and the plaster can come off for good you may well get more moaning instead.