This in response to Ben Goldacre’s misleading article in todays Guardian Newspaper - really disappointed that the writer of such a brilliant book - BAD SCIENCE – falls into the same trap as he tries to warn us about in his book – he would do well to reread certain chapters and then take a long hard look at what he has written. His obvious personal political opinions should come second to evidence – or has he changed his mind?
Dear Ben,
Your article in The Guardian today Saturday 24th April is “Bad Research”
It’s pretty obvious being misled & failing to check the facts doesn’t only apply to the readers of your brilliant book Ben, it is something you have fallen foul of here.
Had you checked your facts about the history of Kidney Cancer Patients battle to get just one treatment option funded by our NHS, you would have noted kidney cancer patients met with David Cameron in August 2008 before N I C E did a U turn and approved Sunitinib, a clinically effective and innovative cancer treatment it had previously turned down on cost.
Now of course N I C E are meant to appraise end of life drugs for terminally ill, rarer cancer patients differently thanks to our campaign. The arbitrary (unchanged 9 year old) figure of £30,000 is no longer used to determine whether or not we offer active end of life treatments( and compassion) to patients facing a terminal diagnosis of cancer.
You would have found out that our patient group recently asked to meet with Andy Burnham and Ann Keen; both requests were turned down.
You would have checked your facts and found out the invoice cost of Sunitinib ? It is an oral tablet form of targeted cancer treatment ; without in- patient, nursing or community costs – the invoice cost to the NHS is £26,000 pa- only N I C E with it’s smoke and mirror tricks could turn that into a scare mongering £55,000.
If you want the evidence Ben it is readily available … ask the leading NHS Oncologists and the many patients around the world still on the drug after 3/4/and even 5 years. Many continuing to work and support their families. We could do with your help to convince the bean counters to help keep us alive Ben, not cause us more distress then we are currently under trying to deal with a diagnosis of a serious cancer and being forced to fight for some sort of active treatment at the same time..
I hope many of you commenting on this post never find yourselves in the position of being denied vital treatment readily available in other social welfare systems around the world but not here in the UK. I am a passionate advocate of our NHS . But it is sufering from it’s own illness; incurable bureaucracy . Let our Clinicians do their job- caring & treating patients, helped , not dicated to, by administrators and statisticians
Posted under Campaigns, Cancer Drugs, N.I.C.E., Oxford Support Group Demonstration 27-Aug-08, Rose Woodward, Sutent, Uncategorized
“You would have checked your facts and found out the invoice cost of Sunitinib ? It is an oral tablet form of targeted cancer treatment ; without in- patient, nursing or community costs – the invoice cost to the NHS is £26,000 pa- only N I C E with it’s smoke and mirror tricks could turn that into a scare mongering £55,000.”
Was that £55,000 the cost per QALY or the cost of treatment per annum. If the former, there are no “smoke and mirror tricks” as NICE is concerned with benefits as well as costs. If £26,000 buys only 0.47 QALYs then that is £55,000 per QALY – with the QALY being the measure of benefit derived from treatment
The point is Paul the QALY for Sutent is higher than the .47. As Rose states, there are patients who have been on the drug 3/4 and even 5 years.
If Sutent didn’t work I would agree with you. These drugs are still very new and new ones are coming to the market all the time that can better target Kidney Cancer AND at the same time offer more options to patients.
My point was that I don’t think NICE engage in “smoke and mirror tricks” and that the argument made to deduce that (i.e. an invoice cost of £26,000 pa), most likely shows a misunderstanding of what £55,000 per QALY means.
Is the QALY for sutent more than 0.47? I don’t know but Andy’s response doesn’t settle the issue one way or the other. If sutent has a QALY gain>0 then it works.
There may well be patients on these drugs for the time you say but what % of all patients on the drug are these? The media tend to focus on the “successes” rather than the “failures”. Are there any patients not on Sutent who are still surviving after 3-5 years? What I need to know is the mean increase in life expectancy and the mean increase in quality of life. An increase in life expectancy but small increase in QoL can lead to a small QALY as can a reasonable increase in QoL if it is only accompanied by a small increase in life expectancy.