Kidney Cancer Bloggers Have your Say

NICE have rejected all our new drugs for kidney cancer apart from one, Sutent, which was finally won after a huge unnecessary cost of life, due to their usual unfathomable delays and our dreadful NHS Post Code Lottery. NICE recently issued draft guidance to reject our latest drug Everolimus, for second line treatment, and now we await the outcome of their appeal process, which is not due until June. Whilst NICE continues to take its time many have been left with no effective treatment. Patients are again having to apply directly to their own PCT for funding, which is in itself just another time-consuming paper intensive and cruel process. The last thing a seriously ill cancer patient wants to do is to spend valuable days and months in a fight against local NHS bureaucracy.
Cancer patients appear to be an easy target for NHS cost cutting, despite the fact that most of us have paid a lifetime of contributions. We now appear to be little more than an expensive nuisance to some highly paid NHS administrators. It was reported recently in the press that Sophia Christie, who is none other than the Chief Executive of Birmingham NHS, had upset cancer patients by dismissing cancer drugs that provide vital pain relief to thousands, as “death deferring,” and she suggested money would be better used elsewhere. Just to add insult to injury Ms Christie was addressing the NICE Annual Conference in Manchester as a guest speaker when she made these remarks. So who knows what influence she may have had on the very people we rely on for our new drugs? This was particularly insensitive as we look upon each new cancer drug as a “bringer of hope” for the extra time we are given, which is a more positive way to view our options. Also, who knows, perhaps during this extra time a new drug will become available even better than before. If “hope” is taken away then what are we left with? It is worth reminding ourselves that those countries with the best cancer survival rates are those who allow sequential treatment with the most effective new drugs. One could argue that many other interventional medical procedures may be considered as “death deferring”. Shockingly, we have since discovered that Ms Christie now appears to have been appointed as lead advisor to the new NHS End of Life Care “workstream” for us all!
In today’s Telegraph it is reported that Ms Christie says, “We are still in a state where we are operating what is a lot of 19th century healthcare alongside 21st century healthcare. This is an opportunity to move to 21st century healthcare.” Good of her to confirm this, as I would have thought that modern effective cancer drugs are a true representation of 21st century healthcare treatment! She talks about the need to use hospitals less as a way of addressing the £20 billion that the NHS has to save over the next three years. Would it not make more sense for the many duplicated expensive tiers of Senior Managers, Very Senior Managers & Directors to first be culled before they cut the patient care and front line services – or are they just all protecting their cosy non-accountable jobs and associated perks? In 2008/2009 these managers and administrators cost us the taxpayer, some £5.6 BILLION compared with £2.7 BILLION when this government came to power. We certainly do not need 152 PCTs, & 10 SHAs with all the associated job duplication and meetings involved. We could have the best healthcare system in the world but alas it needs a truly dedicated and strong leader to take the NHS by the scruff of the neck and shake out all the time wasters and unecessary processes and put the patient first for once.
Our online petition to the Prime Minister asks for a full and urgent review to be made of the NICE process for appraising all newly licensed and approved Cancer drugs. We already have over sixteen hundred signatures and we are approaching the top of the list in the Health category. So if you want to add your own support to try and make a difference for ALL cancer patients then please do so at:

http://petitions.number10.gov.uk/NewCancerDrugs/

Share on Facebook

Posted under Cancer Drugs, Clive Stone

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 sorry 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!

Share on Facebook

Posted under Clive Stone, N.I.C.E.

Well would you believe it, a report out today from the Dept of Health confirms that we cancer patients are subject to a Post Code Lottery – please tell us something we don’t know.  How much did this report cost I wonder?  You couldn’t make this up!!  It says that almost all Primary Care Trusts (PCTs) failed to match the best cancer survival rates in Europe.  We have known this for years.  This country now stands alongside Poland and the Czech republic for five-year survival rates in 16th position.  Where have all the extra billions from tax revenue gone, input into the NHS by this government - we know don’t we?  Now they have identified the problem perhaps they will set up yet another money-pit department for the Very Senior Mangers to come up with some ideas over the next ten years or so!

This comes as no surprise to any of us.  Speaking as someone with advanced kidney cancer and chair of a large KC patient support group here in Oxfordshire, I know this from first hand experience.  We have lost so many from our group.   Many of whom had little option but to spend their last precious months battling with Oxfordshire PCT trying to gain access to Sutent (sunitinib) before the final NICE decision.  Most PCTs had different policies then (and probably still do).  What was most shocking was that our PCT made the decision NOT to fund Sutent at a meeting where no specialist medical Oncologist was even present, and they were sitting on an unspent surplus of £2 million!  Despite patients meeting with the Chief Executive and a Public Health Consultant, they still would not shift their position, or even agree to reconsider their policy – and so more patients died without the option of Sutent.  The clinicians did what they could but their hands were tied by this draconian policy.  The PCT chief executive has since been promoted to chief exec of our SHA.  If their performance management bonus scheme rewards those who make a financial surplus whilst denying patients life extending drugs then something is very wrong!

At this special time of year it is important that we all pause for a moment and remember these brave patients together with all those others we know, and their loved ones they have left behind.  Many came along with us to the London demo at NICE HQ and as a result of their actions gave vital extra time for others with this dreadful cancer.

It is now time for all of us to join together, regardless of our type of cancer, and to speak out with one voice to demand the best for all of us.  We are fully paid up citizens and it is time to show the powers that be that we will no longer accept the status quo – IT IS TIME TO RAISE THE BAR!!

Share on Facebook

Posted under Clive Stone