Ready for Action

[Clive]

We urgently need another campaign as NICE have rejected our remaining kidney cancer drugs. Patients who are intolerant to Sutent now have no other treatment options apart from trying to get on a trial, and these are few and far between. Everolimus (Affinitor) would fill this gap. It is available in other countries and has recently been licensed here, but has not yet started the lengthy NICE appraisal process. (NICE now costs the taxpayer £70 million per year and they use outdated QALY figures set in 1999 which they refuse to increase with inflation. NICE was introduced by Tony Blair purely as a rationing body). So, in the meantime, we will once again face the Post Code Lottery for this new drug which means that stories of patients battling with their PCTs for the drug will again be a regular feature in the media. The last Health Secretary, Alan Johnson, promised more flexibility for these type of drugs but (surprise, surprise) they appear to have gone back on their word. If I again hear the phrase "there is only a finite sum of money available" then I think I will blow a fuse. The NHS made a surplus of £1.75 BILLION last year (that's money not spent on patients and clawed back by the Treasury - our money) and still patients were denied cancer drugs and effective treatments. I am finding that more and more PCTs and SHAs are sitting on massive underspends some with year-end forecast surplus funds of £100 million!!

I am still waiting to hear from members who are prepared to support me in our next campaign and have yet to contact me. Although we have had a strong response so far, I would like to ensure that ALL our members who are able to will become involved, for it's time to make a stand, So come on let's be having you, as there is much to be done if we want to change things! Please contact me by email via this site.

[Clive]

I have today emailed those who have contacted me over the last few months and who are ready to support another campaign. We have strong support but we need many more people. In my email I have mentioned the need to maintain momentum, especially as we now know that the "powers that be" are already moving against us. A number of senior NHS managers from PCTs and SHAs all around the country have already set up a powerful lobby group to influence NICE committees with £300k of taxpayers money. This group is called the Commissioning Support Appraisals Service. NICE already costs us £70 million per year and is meant to be fully independent of NHS. So you can see that they are now positioning themselves to try and block any more expensive cancer drugs coming forward. Two members of the new lobby group a Ms S Christie and Ms C Cheung-Leen are already speaking to NICE at their meeting in Manchester see: http://www.nice2009.co.uk/fprogramme2.htm

So further action is being planned.

I AGAIN CALL UPON ALL OUR MEMBERS TO CONTACT ME DIRECTLY BY EMAIL TO PLEDGE YOUR SUPPORT FOR OUR ONGOING CAMPAIGN. THE TIME HAS COME FOR US ALL TO STEP UP TO THE PLATE IF WE ARE EVER TO PUT AN END TO THIS CRUEL INJUSTICE THAT WE HAVE HAD TO SUFFER AT THE HANDS OF THE MANY LAYERS OF HIGHLY PAID AND MEDICALLY UNQALIFIED MANAGERS AND BUREAUCRATS. IT IS TIME THAT CLINICIANS HAD A GREATER SAY IN THE TREATMENT OF THEIR PATIENTS!

[Clive]

Last year the previous Health Secretary, Alan Johnson, promised us greater flexibility from NICE for end of life drugs and yet we have still only been left with one drug, Sutent (Sunitinib). Our three remaining drugs have since been rejected. Because of this we cannot be treated sequentially, as in many other countries. NICE now appears to be on a roll, as they have also rejected Nexavar (Sorafenib), the only option for liver cancer patients. Also, Avastin (Bevacizumab) has been rejected for bowel cancer patients. These drugs are available in most other EU countries and our NHS is forecasting yet another massive surplus, this time of £1.476 BILLION!

NICE uses a QALY figure to determine cost which must be no more than £30,000 pa, a figure that was set in 1999, which they refuse to increase for inflation. NICE introduced a new end of life QALY at the beginning of this year, which was meant to make it easier for patients to access these treatments. But this QALY is governed by strict criteria where drugs already licensed for other indications are among those barred from being considered under the system. This is grossly unfair to patients.

If NICE continues with this tough approach then drug companies will no doubt consider withdrawing some of their new cancer treatments from the NHS assessement process. Cancer patients in Britain will consequently be denied more effective drugs that are available in other countries.

The sad thing about all this is that kidney cancer patients who cannot tolerate Sutent are already again having to plead with their local PCT for access to a drug such as Afinitor (Everolimus) which has yet to be assessed by NICE. This drug is considered to be one of the most effective second line treatments after Sutent.

A recent report by the Organisation for Economic Cooperation and Development, shows that Britain still has a lot to do to increase cancer survival rates, which are among the worst in the developed world. This is despite an above average healthcare spend and investment in nurses and doctors.

I am finding it ever more difficult to ascertain just why our cancer care in this country is in such a parlous state when so much of our money has been invested in healthcare. It seems to me that we have no option but just to keep on campaigning for the best treatment for cancer patients and to ask what they have been doing with all our taxpayers’ money – we owe it to the next generation!

[Julia]

It is of vital importance that we continue to lobby to bring an end to the disgraceful postcode lottery that prevails in this country with regard to the availability of cancer treatments. Below I have listed just a few quotes from key personnel within the Health sector.

I am sure like me you will be utterly horrified by the things these people say so calmly and seemingly without thought or care for the utter devastation that their simple words can cause to people’s lives who live with cancer. On top of the trauma of battling a deadly and aggressive disease patients are having to endure the utter heartless comments of apparent caring professional individuals.

I have no doubt you will agree we have real cause for concern when the very people who are charged to take care of our healthcare and determine which drugs/treatments are made available to cancer patients are able to make such cold and callous remarks.

We must continue to work together and continue to lobby to bring an end to a system which is simply not working for cancer patients. A system that is morally wrong, a system that is denying cancer patients access to treatments that are so readily available in other parts of the world.

We are discussing treatments that can save lives, treatments that can benefit people who have been faced with a cancer diagnosis, we are NOT discussing spending money on a new car, we are not discussing spending money on a new house, this is not a new ‘commodity’, a new gadget - this is real peoples lives, people who want to live, people who are mothers, fathers, daughters, sons, real people we are not just ‘consumers’:


Professor Sir Ian Kennedy, Emeritus Professor of Health Law, Ethics and Policy at University College London

‘........warned of the danger of the NHS becoming driven by consumerism and what the individual patient demands’.



Sophia Christie, Chief Executive of Birmingham North and East PCT

“The reality is that many of the rarer cancer drugs are used solely for the purpose of extending life during the end-of-life phase of care...”

“The focus on cancer interventions potentially has a particular negative impact in diverting investment away from those interventions which may have a greatest impact in tackling health inequalities”

“Despite the media face of cancer.....”


June 2009 - Health Service Journal
Sophia Christie

“Cancer is typically a disease of older people......

.....if the priority is always the new drug, which too often adds just a few months at the end of life”.


November 2009 - Oxford Mail

Northamptonshire PCT says the drug is too expensive and yet according to its finance report of September 30, it is sitting on an “underspend” £1.9m, with a forecast end of year “underspend” of £4.6m!


September 2008 - Sky News
NICE Chairman Sir Michael Rawlins told Sky News that Nice is unfairly seen as nasty.
"A drug may give you the opportunity to go to a wedding or a birthday party. I understand that”.


August 2008 - Daily Mail

In an astonishing attempt to shift the spotlight onto the pharmaceutical industry, Professor Sir Michael Rawlins, chairman of the beleaguered National Institute for Health and Clinical Excellence, accused drug companies of driving up the price of vital new medicines in order to boost profits and protect executive bonuses.


Professor Sir Michael Rawlins said

the blame lay not with Nice, but with a pharmaceutical industry subject to 'perverse incentives' to hike prices.
'We are told we are being mean all the time, but what nobody mentions is why the drugs are so expensive,' he said.



August 2008 - The Independent
Mr Dillon told an edition of the BBC's Panorama, to be screened tonight.

"It shouldn't make any difference where you live,"

"There ought to be a common basis for decisions about exceptional circumstances.


June 2007 - BBC
Sophia Christie
"Frankly, Herceptin is just about the worst thing I could choose to spend that money on.


December 2009 - James Whale Fund report on NICE Annual Conference 2009
Sophia Christie, Chief Executive of Birmingham North and East PCT

Ms Christie talked about the pressure that new drugs exert on the NHS budget, particularly drugs which serve a small portion of the public who have a severe disease,

those that are “death deferring” and the new oncological drugs.
She suggested that the NHS needs to look at ways to reduce their expenditure on the treatment of cancer.....

She also suggested that instead of a post-code lottery for the availability of drugs, there was now a disease lottery....


You can see this is not a new issue, the continued lobbying of patients groups and individuals has seen some real progress in terms of access to treatments, but we must continue this pressure to bring about an overall change to a system that is outdated and becoming increasingly discriminatory against cancer patients.


Julia

[Sandy63]

I would like to flag up a personal experience. CT Scan showed a tumour on my Adrenal Gland. Sadly the RCC Team were unable to convince a local Endocrine Surgeon to perform the surgery. Following some Internet research I contacted my GP and asked him to refer me to another PCT. Outcome - success and surgery within four weeks. All patients have the right to treatment anywhere in the UK. So for all of those having to wait for surgery or being refused it just do the research and request your GP to do the referral. I will not hesitate to do the same should anything else light up on future scans!

[Julia]

Hi Sandy

Many thanks for the info, it is really helpful to all who come on the site to know what is going on around the country. Your case highlights the huge inequalities we are having to face. We talk and discuss the inequalities in accessing drugs, but as your own experience highlights it stretches beyond this aswell.

It all backs up the report highlighted in the Telegraph in November last year



Cancer care on the NHS falls behind the rest of Europe

More than nine out of 10 NHS trusts in England are failing to provide a good standard of cancer care compared with other countries, official figures show.


Harpal Kumar, chief executive of Cancer Research UK, said: “These statistics confirm that the cancer postcode lottery remains a real problem.



This reinforces the need for us all to continue to raise the profile of the huge inequalities we are facing with regard to access to cancer treatments.


Julia

[Julia]

Below is a quote from Prof Peter Littlejohns - NICE Clinical and Public Health Director , he is referring to 2 new drugs for Leukaemia which NICE are so far refusing.

He states the evidence of clinical effectiveness is poor, but then finishes by asking for the pharmaceuticals to share the ‘high cost’ of the drugs.

I really do not understand why individuals in such highly influential positions come out with statements like this, either the evidence is poor or it isn’t??

Surely whether the pharmaceutical companies share the cost or not is irrelevant, if you have not even passed the first hurdle that a drug is clinically effective???

On the other hand, if he is inviting the pharmaceuticals to share the ‘high cost’ then is he not by his own admission saying the drug is clinically effective???

We really have to keep the pressure on people like him, so they can not get away with trying to confuse us all.


“But Prof Peter Littlejohns NICE Clinical and Public Health Director said: “Although there is some evidence to suggest that Dasatinib and Nilotinib could be considered clinically effective in cases of chronic myeloid leukaemia (CML) where treatment with Imatinib has not worked, the quality of that evidence was extremely poor.

“This, coupled with the very high cost of the drugs, meant that the independent appraisal committee could not recommend these drugs as an appropriate use of NHS resources.

“We hope that the pharmaceutical companies that make these medicines have been able to provide more robust evidence for the independent appraisal committee’s next meeting. And it would be heartening to hear that they are prepared to share some of the very high cost of the drugs with the NHS.”




Julia