Open letter to Ben Goldacre and Guardian Readers ….

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

This post was written by Rose Woodward on April 24, 2010

Lib Dem Conference Fringe Debate on End of Life Drugs…..

I had a great time the other day at the Liberal democrats party conference.  I was invited to sit on a panel to discuss “End of Life” drugs and how N.I.C.E. decide on who should and who shouldn’t be given these drugs.

The panel consisted of Myself as a Kidney Cancer patient, Dr Evan Harris as the Lib Dem MP,  Prof Chris McCabe – Chair in Health Economics at the Leeds Institute of Health Sceince and Mike Hobday, Head of campaigns, Policy and Public Affairs for Macmillan Support.

It was such a shame that there wasn’t more time to get a real debate going, but it seemed that no sooner had we started than it came to an end.  I think all of us on the panel (including me) spent too much time on our opening remarks which left little for questions and answers.

I ended up feeling a bit militant to be honest.  I sensed that the actual patients’ voice is really dissregared in these matters, but I hope I held my own.   My own personal view is that N.I.C.E. add little or no value and are far too driven by cost than they are anything else.

Prof McCabe came up with the ususal “it’s all about balance”, saying that if they allowed the more expensive Kidney Cancer drugs such as Avastin, Torisel and Nexavar that something else would haev to be denied elsewhere.  yeah, yeah, yeah… heard it all before, it sounds like a sensible argument until you look at the waste across the NHS system. 

I brought up the huge waste in the National Program for IT, the fact that in gerneral nobody really wants much of what it proclaims to offer.  Cut this area and you free up money to deliver drugs and treatment to the patients.  The trouble is, if you argue this as a patient you get acused of broadening the debate too much.  Well, you have to broaden it to get people to see sense dont you?

Dr Harris talked about efficiencies, and I suppose I partially agree with this, but there was no real meat behind the statements, no addmission of where those efficiences would come from, and he also defended N.I.C.E’s position way too much for me.  It didn’t like the fact that I’d suggested N.I.C.E should hang their heads in shame for what they have done and how cruel they’ve been.  He even suggested that campaigning was not what we should be doing, we should be lobying our MPs (been there, tried it… falied).  He was also very unclear as to where the responsibilty lay.  One minute he said MPs should only set budget and NICE should make the decisions… next minute he’s asking me to lobby MPs.  Well if MPs aren’t allowed to interfear (in his words) then what’s the point?

At one point an Oncologist stood up and defended Dr Harris by saying that without NICE she would not be able to freely prescribe drugs, to which I replied “had we not campaigned outside of NICE HQ last year you would not have the drugs available to you to prescribe “, so I’m sorry Evan campaigning and pressure groups do work, government does not.

Mike Hobday argued for a more fair balance between the more well known cancers and rarer cancers.  The balance tips far too much towards the more well known ones.  My guess is that this is because of public pressure and visibility, which is hardly the way an organisation such as NICE should behave.

For someone who hates public speaking, I enjoyed it.  Just wished it had been longer so we could get the topics out on the table.  Maybe next time .. (if I get invited back that is)

Posted under Andy Thomas, Avastin, Cancer Drugs, Events, Nexavar, Sutent, Torisel

This post was written by AndyThomas on October 2, 2009

2008 August 28 – YOUR Government’s Shamefull Behaviour!

2008 August 28 03:30:37 BST
Posted By: Greg_L-W.
Discussion
Greg_L-W.’s Blog
 

Hi,

I do find the behaviour of the British Government shamefull.

It is clearly revolting that on the very day the Government’s shelter organisation the QUANGO N.I.C.E. is befouling the image of what was the envy of the world, the British NHS, by hiding in their luxury Head Quarters behind their £30,000,000 annual budget.

Hiding from some 60 Kidney Cancer patients and their carers peacefully demonstrating against the new Government policy, as announced by N.I.C.E., to selectively EUthenase an entire category of patients those Challenged by Kidney Cancer who are now to be deliberately denied the drugs they clinically require both to continue to live and to have a quality in the life that is left to the,

Whilst these brave people, some of whom were dying as a result of this deliberate action, were demonstrating I, as a Kidney Cancer patient was unable to attend due to the damage I have received physically as a result of my Kidney Cancer, but whilst my friends were there to protest at their impending death, against the very people who can save them N.I.C.E. – I was aware the disingenuous claim of N.I.C.E. was that they could not afford the drugs and rather than admit it was directly due to the incompetence of the Government in the management of the Health Service – the devolved irresponsibility of regionalisation that has led to the “post code lottery”.

N.I.C.E. has even tried to shelter their incompetence to manage or negotiate, behind the specious claim that the people who researched and funded the developement of these drugs charge too much – yet it is clear that America who fund the drug for prisoners on death row and the Argentine that prescribes it more than Britain, Malasia and the EU and a total of some 70 Countries around the world would seem to disagree!

Consider – on the very day whilst my friends were demonstarting and their servants the Government funded N.I.C.E. lacked even the manners to meet with these very ill people and N.I.C.E. security was turned on these sick people to intimidate them by photographing them in the street despite the presence of Police Officers invited BY the demonstrators!

Whilst they were peacefully demonstrating and N.I.C.E. hid in shame – I read on my computer that MY Government had pledged to squander from the NHS budget £170,000,000 to train therapists to councel those with ‘Cognative Behaviour Disorder’ – to buy votes by providing this fashion and lifestyle service rather than fund the drugs that are available world wide for Kidney Cancer that may, if nothing else, provide experience for the Oncologists and researchers towards an actual cure whilst giving hope to us The Kidney Cancer Patients that N.I.C.E. have selected to deliberately permit to die for economic expediency – whilst still funding breast enhancement, In Vitro Fertilisation, tattoo removal and many other treatments that can ONLY be seen as frivolous when compared with the deliberate death of Kidney Cancer patients!

Do warn us at what stage we are to be moved into The Harold Shipman Ward in our Regionalised NHS Hospital.

First they came for Kidney Cancer patients and took away their lives

but as you were no a Kidney Cancer Patient I guess you did nothing!

Then they came for those with Crohns Disease (?) and withdrew their treatment

but as you didn't have Crohns Disease I guess you did nothing!

When they come for YOU in your hour of need and weakness -

there was no one left to help you they had been swept away, I guess 'cos you did nothing!

Where will YOU draw the line – Must it be YOUR child, YOUR Mother, YOUR wife?

Or would it have to be YOU?

That is YOUR Shame to share with N.I.C.E. and the Government that hides behind them!

Regards and Warm Hands for YOUR Hour of Need,

Greg L-W.

www.KidneyCancerResource.com

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Blog Entry: User:Greg L-W./BlogEntry: 2008 August 28 03:30:37 BST

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on October 11, 2008

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2008 August 26 – YOUR Government’s Dubious Honesty!!

2008 August 26 03:45:14 BST
Posted By: Greg_L-W.
Discussion
Greg_L-W.’s Blog
 

Hi,

I do feel you might be fascinated to read the extent to which YOUR GOVERNMENT is prepared to LIE to YOU.

You will find on the Department of Health Web site the following statement for which the web address is: Click Here [Quote] Consultation on core principles for everyone providing care to NHS patients

Launch date: 11 December 2006
Closing date: 16 March 2007
Creator/s: Department of Health
Audience: Health and social care professionals
Copyright holder: Crown
Gateway number: 7408

‘The NHS in England: the operating framework for 2007-08’ sets out for consultation a draft set of NHS principles.

All NHS and independent sector providers who sign national model NHS contracts with commissioners from April 2007 will be required to have regard to these principles once they are agreed and published. The relevant contracts will be those covering hospital care.

The draft principles on which we are consulting are:

1. The NHS will provide a universal and comprehensive service with equal access for all, free at the point of use, based on clinical need, not ability to pay. Healthcare is a basic human right. Unlike private systems, the NHS will not exclude anyone because of their health status or ability to pay. Access to the NHS will continue to depend upon clinical need, not ability to pay. Unless a charge has been specifically sanctioned by the NHS (e.g. for prescriptions or dental treatment), we will not charge a fee or require a co-payment from any NHS patient. We will provide appropriate care for all those referred to us, within our clinical competence. [/Quote]

The fact that it is subsequent to April 2007 indicate that these are the adopted ‘principles’ for lack of an expletive!

Let us consider the FACTS rather than the DoH sales ‘Guff’:

1. The NHS will provide a universal and comprehensive service with equal access for all,

Perhaps they would care to explain why that excludes certain groups of cancer patients and why it is felt necessary to use money from the NHS to fund the salaries of QUANGOs and more particularly the PRIVATE HEALTH CARE of those on those QUANGOs and elsewhere in the Government?

free at the point of use,

If it is FREE at the point of use/need perhaps it can be explained why Kidney Cancer patients are selected for EUthenasia and under which specific Act of Parliament the State has authorised the NHS to MURDER its patients and on what terms?

based on clinical need,

The FACT that drugs such as Sutent, Nexavar, Avastin & Torisel are the ONLY current treatment effective on ARCC & mRCC and are thus advocated by every reputable oncologist when apposite as a clinical need – the FACT that the ‘service’ has seen fit to withold these drugs is not only counter the DoH ‘principles’ but also as effective a method of EUthenasia as employing an army of Doctors in the ilk of Harold Shipman injecting drugs to kill – no doubt specialist wards will be set up named after him to commemorate his clever idea for saving money!

not ability to pay.

This is a deliberate misrepresentation on two counts – firstly it is stated that an individual CAN self fund the drugs therefore the treatment you receive IS based upon the ability to pay. Secondly this is a selective situation as many more costly treatments ARE available on the NHS and treatments for the frivolous, by comparison, are funded to a staggering degree relative to the funding required to provide these drugs to all those with a clinical need.

Healthcare is a basic human right.

Did I hear them say EXCEPT if you have Kidney Cancer – no I thought not!

Unlike private systems, the NHS will not exclude anyone because of their health status or ability to pay.

If the latest concept of EUthenasing patients on a cost convenience basis starting with those with Kidney Cancer ever comes into being this ‘principle’ has become a lie – further it equates to The Process decided upon at The Wannasee Conference under ‘The Final Solution’ whereby it was decided to selectively exterminate certain sectors of the community based upon a slogan of ‘Arbeit Macht Frei’ including those of certain superstitions and beliefs, DISABLED, and others – I’m not sure if those with Kidney Cancer were specified but they would by the terms of the society at the time have been considered disabled!

Access to the NHS will continue to depend upon clinical need, not ability to pay.

Pray explain this in the context of the new policies of N.I.C.E. the QUANGO behind which the Government would seem to shelter their obscene incompetence to maintain and manage what was once the envy of the world The NHS.

Unless a charge has been specifically sanctioned by the NHS (e.g. for prescriptions or dental treatment), we will not charge a fee or require a co-payment from any NHS patient.

So I presume this means that you will honour the ‘principle’ but have failed to include the statement but we will permit patients to die without treatment although it is readilly available and more than affordable from savings that can easily be made by cutting out expenditure on ‘life style’ treatments that would seem to be provided on a purely Political basis as ‘vote winners’ from large numbers rather than life saving for small numbers – to whit: Tattoo removal at a cost of upto £300,000,000 (QUOTE Baroness Gardiner, House of Lords Hansard), VIAGRA at a cost of £Millions,

One must of course remember the largely self inflicted problem of constipation due to the wrong diet on which the NHS spends more money than all cancer treatment added together – just as more is spent on the self inflicted problem of obesity than is spent on Kidney Cancer. Then consider the cumulative £Millions spent on criminal unemployed drug addicts at a cost of £12,000 per annum each for Methadone alone!

We will provide appropriate care for all those referred to us,

I was unaware that my taxes over the years not only deny me the fundamental human right to end my life if I wish but grants the State the right to end my life if THEY wish!

within our clinical competence.

The provision of Sutent, Nexavar, Avastin & Torisel are indubitably within the ‘clinical competence’ of the NHS – Perhaps the cronies on unaccountable, over paid, indemnified QUANGOs would be so good as to identify ANYWHERE in the criminal refusal of drugs and resultant killing of patients by PCTs over the last couple of years or N.I.C.E. in particular in their well engineered leak, at the hight of Olympic Publicity (and largely public indifference) whilst some 600 individuals unrelated to performing or training were in Beijing funded from the public purse when the cost of sending an MP was coincidentally almost the same as providing Sutent for a year! This of course does not include over 450 individual from the BBC funded most reluctantly by the tax payer!

August is, to quote a Government spokesman, a good time to leak bad news!

Perhaps before we hear further fatuous appologias made by spokesmen of the Government and its lakeys on QUANGOs we might hear The Minister for Health appologise both to the patients and carers who in their hour of need have taken a really good emotional kicking from the very people they pay to protect them. Then perhaps it would be wise if The Minister would appologise to the Pharmaceutical Companies for the gross and unwarrented slur cast on them by his staff both in and out of QUANGOs and fatuous idiotic spokesmen like Paul Flynn who was so very ready to pontificate on a subject on which, as is so often, he knew virtually nothing.

If The Minister and his staff are incompetent to negotiate with the Pharmaceutical Companies may I suggest they resign. I have found both Pfizer and Bayer incredibly willing to assist, negotiate and co-operate and it was patients and Oncologists who so far have negotiated the first course FREE and all the trials – whilst N.I.C.E. and the other parasites feeding off our disease funded and rewarded themselves for an achievement of shame on a budget of £30,000,000.

The Minister’s final act had he integrity would be to demand the resignation without compensation or pension and a refusal to rehire in any Government Department or QUANGO all those who have brought about this despicable situation that leavs any honourable Minister with absolutely no option but to resign his office and from politics putting his seat up for election. No man of honour could possibly continue in public office let alone public employ under the circumstances but we must remember that in a septic tank it is not only the scum that rises and I would hazard a guess that The Minister and his staff will prove it.

The great tragedy is that there are times when I am ashamed to be British albeit I’m also concerned as I have Kidney Cancer although I am in the fortunate position that AT THE MOMENT I have no need of these drugs but I am minded of Pastor Martin Neimoller who famously said:

First they came for the communists, and I did not speak out–

because I was not a communist;

Then they came for the socialists, and I did not speak out–

because I was not a socialist;

Then they came for the trade unionists, and I did not speak out–

because I was not a trade unionist;

Then they came for the Jews, and I did not speak out–

because I was not a Jew;

Then they came for me–

and there was no one left to speak out for me’.

We have learned little since he said this as I am sure he would have added Sutent, Nexavar, Avastin & Torisel had he been here today.

Where will YOU draw the line?

Regards,

Greg L-W.

Blog Entry: User:Greg L-W./BlogEntry: 2008 August 26 03:45:14 BST

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on October 11, 2008

Tags: , , , , , ,

2008 August 25 – Suggestions on N.I.C.E. – How to fund drugs

2008 August 25 22:23:16 BST
Posted By: Greg_L-W.
Discussion
Greg_L-W.’s Blog
 

Andrew Dillon, chief executive of Nice, said: “The provisional conclusions on the use of drugs for treating renal cancer are those of an independent appraisal committee whose membership is largely drawn from NHS clinicians in active practice. They understand the issues at stake.”

He said that if the 26 oncologists are to “maintain the credibility of their argument” they must explain which patients “should forgo cost-effective care in order to meet the needs of those with renal cancer”.

May I usurp their authority and propose that savings could be made as follows:

1. £30,000,000 could be saved by closing N.I.C.E. which is merely a QUANGO behind which corrupt politicians shelter their mismanagement of the NHS.

2. £190,000,000 PER ANNUM could be saved by making organ donorship an opt out scheme rather than an opt in scheme. This being the sum spent on those who are on waiting lists for organs spent annually keeping them alive.

3. Upto £300,000,000 which the Health Service spends per annum on tattoo removal QUOTE Baroness Gardiner House of Lords see Hansard.

4. Cease providing any Government employees with ANY aspect of Private Health Care this would not only make massive multi £Million savings but would also ensure the inducement that they ensure the Heath Service is repaired.

5. Cease providing funding for inflation linked pensions for Government employees – since they are indemnified from their incompetence as inflicted on the balance of the public.

6. Place a ceiling on incomes in Government QUANGOs as few if any of these people are employable in the commercial world which is why they flourish in the unaccountable world of sheltered employment in QUANGOs.

  • Be minded of the fact that in the real world high salaries are determined by the ability to generate high profits leading to greater levels of employment and more tax profit for Government – high salaries in QUANGOs and Government merely produce a need for higher taxation and contribute nothing additional to the Country.

7. Cease giving early retirement and compensation for stress related claims – individuals should be free to select whether they do a given job it being their choice to accept the additional incomes of a given job. Stress in employment is a choice: if you are out of your depth and suffering stress hand back the salary you clearly are failing to earn and quit!

8. Cease providing life style care as a given whereby life style care should ONLY be provided once primary Health Care is provided thus saving on:

  • In Vitro Fertilisation.
  • Breast augmentation.
  • Rectal repair when self inflicted for sexual pleasure.
  • VIAGRA & other erectile defficiency drugs.
  • All forms of fertility enhancement.
  • Treatment of any long term condition for aliens & health tourism.
  • Close all councilling services on the Health Service that are not directly medical.
  • Charge for failure to attend appointments.
  • Cease all concepts of gender reassignment.

9. Withdraw from membership of the EUropean Union as clearly we have joined a club we can afford as we are unable to take care of our own people and are paying £1,800,000 per HOUR of British tax payers money (QUOTE Institute of Directors) and are having to kill British Kidney Cancer patients to find the money to fund the Warsaw Underground, Incompetent French farmers, Corrupt Fishing quotas for great maritime nations like Austria and whilst funding Spain to build their roads we permit them to enrich themselves by stealing fish from British fisheries.

10. Surrender the utterly specious Olympic Games which we clearly can not afford as already the budget of £2.8 Billion has already run to £9.3 Billion with an expectation of a final spend wasted on these irrelevant games of £18 Billion where less than 1% of the population will participate meaningfully in the related sports unlike 100% who will have need of the Health Service where the new policy is to Kill Patients who are too costsly.

I do appreciate that Andrew Dillon on his massive salary may well be able to turn a brief phrase in defence of his job and his QUANGO but clearly he is not competent to the job he is paid to do or he would not have made such a staggeringly stupid and ill considered statement regarding the murders he is planning to preside over.

Regards,

Greg L-W. 01291 – 62 65 62

Blog Entry: User:Greg L-W./BlogEntry: 2008 August 25 22:23:16 BST

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on October 11, 2008

Tags: , , , , , , , ,

2008 August 25 – I HAVE THE ANSWER for Cancer Research!

2008 August 25 01:13:35 BST
Posted By: Greg_L-W.
Discussion
Greg_L-W.’s Blog
 

Hi,

I’ve just put this on the Cancer Research comments section on their web site:

http://scienceblog.cancerresearchuk.org … omment-537
Quote: I HAVE THE ANSWER

May I suggest that if you are worried that you have or may get Kidney Cancer and need to claim on your Health Service:-

Make sure you are on a Government QUANGO the beauty of the job is that the Government doesn’t believe in the Health Service and provides all its senior staff with PRIVATE HEALTH INSURANCE!

Also the Government doesn’t believe in the Public Pension Service so it gives all its Staff prefferential INFLATION LINKED PENSIONS to compensate for the c*ck up they know they will make in Government.

Also Government staff on QUANGOs are not held accountable for mistakes just put all the data you can find on your provided Lap Top and lose it like the MoD do having lost over 700 to date!

If you want more expenses just loose your CD with all the records on them and claim for a larger sum.

Perhaps you have been away for the last month in Beijing with the other QUANGO members and 650 people funded from the public purse who had NO relevance to performing in the tedious and obscenely costly farce.

Join N.I.C.E. or a P.C.T. where you can be sure of no meaningful work, regular long holidays, inflation linked pensions, early retirement, stress related compensation, staff car schemes and of course PRIVATE HEALTH INSURANCE as of course you can’t relly on or trust the old NHS which is so badly managed it is obviously broken.

Don’t worry your job will be safe N.I.C.E. alone has a budget of £30,000,000 and if you need a pay rise you can take it out of the drug budget and kill off a few more Cancer Patients – they’re a nuisance anyway they just won’t die quietly they are just selfish – next they will start demonstrating but never mind the Government is on your side on a QHANGO so the State Police will be called in under the terrorism laws we can just murder them – woops sorry Mr. Menenez can we have those 8 bullets back!

Cover your risk – join a QUANGO.

The other beauty of a QUANGO or Government job is you get promoted for lies – look at Blair and his lies about Iraq which used so much of the money we could have used for health. Why do soldiers get health care? They knew the risks they should be like smokers or the obese and denied care!

Mandelson lied so often he is now an EU commissioner WITH PRIVATE HEALTH CARE!

On a £2.4Billion Budget I note incompetency and waste has already run that to £9.3Billion and it is rumoured the Olympics will cost Britain over £18,000,000,000 – Howmany people will the Government have to kill to pay for their tedious sport? Already they CLAIM that due to their incompetence they are going to have to kill Kidney Cancer patients!

Quick join a QUANGO and be safe for life.

Join me at http://www.KidneyCancerResource.com where we can fight this clearly non political issue!

‘First they came for the Jews but I was not a Jew so I did nothing….’

Regards and Warm Hands, Greg L-W.
Have YOU commented? There are loads of ideas there!

Regards, Greg L-W.

Blog Entry: User:Greg L-W./BlogEntry: 2008 August 25 01:13:35 BST

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on October 11, 2008

Tags: , , , , , ,

Kerry McCarthy MP – it ALWAYS pays to Lobby!

Hi,

I just posted this as a comment on Kerry McCarthy’s web blog at:
http://kerry-mccarthy.blogspot.com/2008/08/too-much-to-ask.html

Perhaps you would care to post YOUR comment too!

Regards,
Greg L-W.

[quote="Kerry McCarthy MP"]
Monday, 11 August 2008
[b]Too much to ask[/b]
Breaking news from the Guardian… which doesn’t particularly surprise me where Bristol is concerned, but it’s very useful to have the figures with which to confirm my suspicions. Although it doesn’t necessarily mean that the PCTs who turned down appeals are in the wrong; NICE is there for a purpose, and generally I would back its decisions. But I see its role primarily as ensuring that public money doesn’t get wasted on virtually useless products being pushed by big pharmaceutical companies. It gets more difficult when there is clear proof that the drug does have some positive effect, but it comes down to a cost-benefit-analysis, which is roughly based on cost of the drug cf. additional years of quality life. How do you decide whether giving someone an average six months extra is worth £30,000?

The PCT exceptional funding appeals panels are meant to look not at whether someone’s personal circumstances are exceptional, but whether their potential response to treatment sets them apart from other applicants. So it’s not about whether you’ve got young children, or have led a blameless life, or whatever (which would get you into very difficult territory); it’s about whether you’re likely to live longer, respond better, etc. (Correct me if I’m wrong on that, someone).

I had one constituent recently who appealed successfully against being refused the kidney cancer drug Sutent – see my The Drugs Don’t Work post from July, and no I didn’t really mean that the drugs don’t work as one email correspondent thought. On Friday however I was visited at my surgery by another constituent whose father has kidney cancer and is being denied Sutent. The family are faced with selling their belongings to try to fund the drug privately. They could also fall foul of the ridiculous NHS co-payment guidelines, which basically mean that if you pay for the drugs privately, you have to pay for everything privately. (We’re doing something about that, thank God, although it won’t come quickly enough for my constituent’s father.)

Although my constituent’s father doesn’t live in Bristol, I’ve said I’ll do what I can to support his appeal, along with his own MP. I’m not sure we’ll succeed this time, given the NICE interim guidelines. But how do you tell someone what price you think should be put on a year of her father’s life?
Posted by Kerry at Monday, August 11, 2008  [/quote]

1 comments:
[quote="Greg L-W."]
Hi,

May I take the liberty of reminding you of the self serving speech of our glorious leader Gordon Brown in his speech on the 60th anniversary of the NHS:

“As individuals in Britain we know that – should serious illness strike – we will be cared for and the cost of that care will be absorbed not by us as individuals, but by all of us together – in a comprehensive healthcare system publicly funded by taxation”

This is the man who as Chancellor has racked up a National debt of £650bn.; achieved a deficit in government Pensions of £760bn.; accrued a deficit of over £90bn. in local Government pensions, achieved a debt of between £500bn. & £1.3Trillion on PFI.

Then he found £100bn. for professional gamblers who backed the wrong numbers in the City casinos at Northern Rock, Now followed by £500bn. for those daft enough to take £Millions in bonuses whilst robbing the system blind.

Now it looks as if we are to fund Iceland and the cupidity of the idiots in Local Government & Public Services who took John Prescott’s advice and have lost yet more £Billions of other people’s money – well that’s socialism I guess.

Yet we are expected to turn a blind eye to Brown’s lies in his statement about the NHS where a very small sum relatively would avoid the Government sheltering behind its cronies in its appointed QUANGOs as they EUthenase patients against their will based on economic expediency.

Perhaps someone can explain the difference between prescribing the wrong drugs to kill patients and prescribing no drugs and killing them against their will – How long before New Labour open Harald Shipman Wards in all hospitals to kill off patients who are inconvenient – starting I note with Kidney Cancer patients by refusal of Sutent, Nexavar, Torisil or Avastin when clinically required.

Just as Tony Blair’s Government was guilty of lies about WMDs & Delivery Systems leading to War Crimes & Crimes Against Humanity by their actions and dishonesty – now we have Gordon Brown’s Government guilty of murdering British citizens in hospital beds!

If you want to learn more about Kidney Cancer have a look at www.KidneyCancerResource.com or contact me on 01291 – 62 65 62 or eMail me on Greg@GlanceBack.Demon.co.UK

Thank you for having tried to help one of your constituents with Renal Cell Carcinoma recently perhaps you could extend that to changing the system that kills NHS patients!

Regards,
Greg Lance-Watkins
11 October 2008 04:13  [/quote]

Warm Hands,
Regards,
Greg L-W.
http://www.kidneycancerresource.com/index.php/User:Greg_L-W.

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on October 11, 2008

Tags: , , , ,

2008 August 13 15:02:35 BST Hunting Drug Data World Wide!

Hi all – I’ve just received the message from a friend in South Africa – I thought it would interest you all:

Subject: NICE

Hi Greg,

We may have trouble in South Africa, but at least we don’t have NICE. My sympathies to all kidney cancer patients in the UK. Sometimes I pretend I’m not a Brit!!

==========================================

I have spent most of this afternoon tracking down lists of Countries in the third world where Sutent, Nexavar, Torisel & Avastin. Trying to get details from Pfizer was staggeringly difficult & the switchboard was almost obstructive but the music wasn’t too bad as one waited for yet another staff member on a voice mail! Eventually they promised to send me the details by eMail by 5.30 – it is gone 18.00hrs. and no eMail!

Bayer were difficult but not really their fault as they pull out all plugs at 5pm. So I rang Bayer Germany who were great, switchboard and each person I spoke to was at least bilingual and did all they could to help, eventually I was given the direct line of their international marketing director in the USA & he was very VERY helpfull and has provided help and loads more in the future!

I’ll have to try Avastin & Torisel tomorrow.

Any help would be appreciated. The ‘YOURS’ story/coverage is doing well and thanks to those who have sent photos any more would still be welcome.

Regards, Greg L-W.

Posted under Avastin, Greg Lance-Watkins, Nexavar, Sutent, Torisel

This post was written by Greg Lance-Watkins on September 13, 2008

Setting the tone …….

Professor Waxman is a hero to Kidney Cancer Patients – this is why…………..

We need cancer drugs. NICE must go. The Government’s penny-pinching body has made yet another stupid decision.

Our Government has been a fabulous custodian of healthcare. Public memory is short and many of us have forgotten how difficult things were for patients before 1997. During the past decade we have seen a doubling in NHS spending. As a result, patients don’t have to wait for scans, are seen in hospitals within a reasonable time, and surgical waiting lists are relatively short.

But there are areas of healthcare where things have gone badly wrong, where wrong meets bad, becomes worse, and then spirals to appalling, and these areas are approached through the bloodstained portals of the National Institute for Health and Clinical Excellence (NICE).

This week’s NICE announcement on treating kidney cancer, a preliminary opinion about the value of new drugs, has sent doctors into apoplexy. Kidney cancer affects approximately 7,500 people in the UK each year, and there are 2,500 deaths. We have recently begun to understand the molecular biology of kidney cancer, and to know of its specific characteristics. Understanding these characteristics allows us to design treatments that exploit the differences between kidney cancer cells and normal cells. As a result, we have wonderful new treatments that double life expectancy in this condition.

NICE has evaluated these four new drugs for kidney cancer and indicated that these drugs will not be recommended for use in patients. This is against all sense, and contrary to the situation in the rest of Europe and in the United States, where these drugs are available. NICE has made its decision on the basis of an arcane and extraordinarily complex calculation which relates the benefit of treatment with these new drugs to a treatment that is comparatively ineffective.

So, a fabulous new treatment has been compared to junk, and the costing for the new treatment rationed up to give a conclusion on costs, which is absolute nonsense (and here I underplay the argument against the decision). In its defence, NICE might feel it has a moral responsibility to save money. But it is a short-sighted morality if the sums involved – as they are in the case of kidney cancer treatments – are paltry.

In the past seven years there have been 407 NICE guidances on cancer. It would be an understatement to remark that virtually all of them have been controversial. Many guidances have been stomped on by judicial review or overruled by health ministers. Now, with this latest decision NICE has told us all how irrelevant it is and why it should be abolished.

NICE was set up in 1999 with a brief to provide clinical guidelines and technology assessments for England and Wales (there is a separate panel for Scotland). But there is no equivalent of it in any other European country, or in the US. In Europe and the US, decisions about the value of treatment are made at the time of licensing of the drug, through either the European Medicines Agency or the American Food and Drug Administration. In Europe and America squabbles about costs are ironed out at this stage, after negotiations between pharmaceutical companies and governments.

NICE is slow about making decisions. It takes two or three years to give its judgment after a drug has been licensed. Input into NICE is made through the Department of Health, by health professionals, patients and pharmaceutical companies. NICE’s timetable for the review of cancer drugs is dictated by the Department of Health. The department tells NICE when to start the review process and when to conclude its review. The NICE committees are patrolled and staffed by health economists – with minority involvement by clinicians – who give a view as to the value of a drug or treatment in the context of a QALY, which is a “year of quality added life”. To put this in simple terms, if a drug is reasonably effective, and also reasonably cheap, then NICE concludes that it can recommend that the drug is used by the community.

But, before the “community” gets to use the drug, there is a second rank of decision-making. Primary care trusts, which are not legally obliged to follow NICE advice, are local area committees that make decisions on how the NHS budget is spent in their part of the country. There are 149 trusts in England and Wales issuing decisions about whether or not it is reasonable to prescribe a drug within its domain. So if the administrators of the PCTs for Bolton, Bognor and Bournemouth are all able to make independent decisions as to whether to follow NICE rulings, why do we need NICE?

Now with this absurd and arrogant decision on the value of drugs for kidney cancer, NICE has told us that it is absurd, arrogant and unnecessary. Our country should no longer underwrite the costs of NICE, which are currently at £30 million a year, and due to increase. This is a sum that could usefully be spent on providing drugs for cancer patients in a country where we spend less on cancer treatments than on drugs for constipation – in a country where, as a result of NICE’s appalling and uneducated interventions, we spend less than two thirds of the European average on drug treatments for our cancer patients.
……….Jonathan Waxman

Jonathan Waxman is Professor of Oncology at Imperial College, London

Thank you Professor Waxman and thanks to all the other Leading Oncologists and Clinicians who have put their heads above the parapet and called this decision by N I C E flawed and cruel and inhumane.

In my book they are renamed ….N I C E = The National Institute for Cost Effectiveness

Posted under Avastin, Nexavar, Rose Woodward, Sutent, Torisel

This post was written by Rose Woodward on September 7, 2008