Article Cancer Drugs Fund to get £200m a year

Rose Woodward – Patient Advocate

At long last…… confirmation that the

Cancer Drugs Fund to get £200m a year  

There was good news for cancer patients in England this week after the government confirmed it will provide £600 million for a three-year fund to improve access to new cancer drugs on the National Health Service.

There had been fears that the pot may be reduced under the current spurt of cost cuts, but the Department of Health announced yesterday that £200 million a year will be made available for the Cancer Drugs Fund from 2011 to 2013. 

The move is designed to help patients get better access to therapies recommended by their specialists, even if they have not been approved by cost regulator the National Institute for Health and Clinical Excellence, giving clinicians yet more power to dish out the treatments they feel are the most appropriate.

In addition, it is hoped that the extra cash pile – which is separate from existing Primary Care Trust budgets – will also help to improve the country’s ranking in terms of the provision of innovative cancer treatment to patients, as it is low on the list compared with many of its global peers.

Just a few weeks ago the government said it is has also set aside £50 million for an interim fund to help patients get treatment with drugs that have the potential to extend survival or improve quality of life before the fund ‘proper’ is launched next year, with clinically-led panels deciding on how to spend this money for patients locally.

The move does not take away from NICE’s remit, as the Institute will continue to appraise most significant new drugs and will have an important part to play in the government’s plans to switch to a system of value-based pricing for new medicines when the current Pharmaceutical Price Regulation Scheme expires, it said.

“Our longer-term plans will change the way we pay for drugs so that patients get better access to drugs and the NHS and the taxpayer get better value for money,” commented health secretary Andrew Lansley.

Consultation launched

The DH has now kicked off a consultation over its plans, seeking public opinion on the arrangements and other proposals for the fund’s operation, including ways in which patients and clinicians can be supported to make the best treatment decisions and what the scope of the Fund should be.

The Association of the British Pharmaceutical Industry has welcomed the launch of the public consultation and the government’s commitment of £200 million a year to help boost patient access to innovative cancer treatments.

Director-General Richard Barker said the consultation raises many important questions about how the fund will operate, such as “whether the fund should be administered at regional or national level and how to ensure that NHS cancer patients across England have a fair, timely and equal opportunity to benefit from the fund”.

The consultation will run until January 19, 2011.Its really important that as many cancer patients and families complete the consultation document and let the NHS know how we feel and to stress the need for this Cancer Drugs Fund to be continued for as long as some people in the NHS wish to refuse treatment to cancer patients.

 Please contact me if you would like a consultation document sent to you by email..

contact@kidneycancersupportnetwork.co.uk

or download it from our patient forum at     www.kidneycancersupportnetwork.co.uk

Rose Woodward

Posted under Afinitor(aka Everolimus/RAD001), Avastin, Campaigns, Cancer Drugs, General, N.I.C.E., Nexavar, Patient Day 17thNov2010, Rose Woodward, Social Medicine, Torisel

This post was written by Rose Woodward on October 28, 2010

Who will notice another life ending? –

 

Rose Woodward – www.kidneycancersupportnetwork.co.uk

Last night in Scarborough Fred Binch died. Fred was a kidney cancer patient who was denied treatment by his Primary Care Trust. Fred’s Oncologist wanted to treat him him with a new and effective  drug called Everolimus.  Fred had responded well to previous treatments and his Dr’s  thought he would do so again if he was given the opportunity. But somebody sitting behind a desk in a PCT Office miles from the Hospital deciided they knew better than the  Oncologists and the MDT and they had a meeting and condemned Fred to a premature death all to save £100.00 per week. The difference between the cost of the treatment Fred had been taking and the new treatment they wanted to prescribe for him.

Imagine the last few weeks of your life knowing that a  Group of people have decided you cannot have the treatment  your Dr’s say you need. Someone like Fred didn’t have a cats chance in hell of being able to pay for the drug he needed. yet with  dignity  he just kept on fighting as his  disease  robbed him of his speech and his very life’s breath as a tumour continued to grow  putting pressure on his windpipe.  Cruel beyond understanding. This was  a man  who had worked hard all his life, married his childhood sweetheart, raised a family – lived a “good life”.

He was let down by the very people charged with looking after him. Do they care – do they even know? Fred was just another nameless, faceless statistic. A kidney cancer patient who had the audacity to ask to be  treated.

To me he was a quiet hero.  At peace now.

Rose  x

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, N.I.C.E., Rose Woodward, Social Medicine

This post was written by Rose Woodward on September 1, 2010

Press release issued about the Cancer Drugs Fund

Rose Woodward, herself a survivor of kidney cancer and Patient Advocate for the James Whale Fund for Kidney Cancer said “On behalf of the James Whale Fund for kidney Cancer and my fellow kidney cancer patients, we welcome the news today that Conservative Party will set up a Fund to enable patients suffering from rarer cancers to get the cancer drugs they desperately need.

Over the past 4 years, on behalf of terminally cancer patients from all over the Country, we have been pleading in front of jury’s of PCT administrators to allow  patients to have  proven, innovative cancer drugs that  Clinicians want to prescribe. By anyone’s standards it is  cruel and callous to refuse to treat vulnerable patients who  are already having to cope with a diagnosis of a serious cancer.

At the James Whale Fund we are passionate believers in the NHS and universal care. We welcome the day when it is the Doctor who will decide what drugs he will prescribe for his patient not an administrator sitting behind a desk far away from the Hospital.

N I C E (National Institute of Health & Clinical Excellence) denies drugs on the basis of cost, but Oncologists want to prescribe drugs on the basis of clinical effectiveness and the needs of their patients.

Cancer patients need to know the NHS will be there for them when they most need it and at the moment they are being let down.  The NHS must stop saying to cancer patients “You are too expensive for us to keep you alive.”

Rose Woodward.

Patient Advocate for the James Whale Fund for Kidney Cancer & Founder of the Kidney Cancer Support Network

Posted under Afinitor(aka Everolimus/RAD001), Campaigns, N.I.C.E., Rose Woodward, User Posts

This post was written by Rose Woodward on April 6, 2010

Patient Advocacy for KIDNEY CANCER PATIENTS

Patient Advocacy

Well  this is how I explain  what it means to use the title a ” Patient Advocate” To me it   means putting the interests of  Kidney Cancer patients first and foremost and having the experience and knowledge to be able do that.

Julia Black and I have been advocating for rights for Kidney Cancer  patients, since way back when. It was in  2006  that we started this battle and sadly it is still going on today. Only the drugs have changed as more advances are made in our treatment options - but we are still thwarted  by the NHS and N I C E  who will not allow cancer patients to have these drugs funded by our  NHS.

Julia was one of the first cancer patients to fight the battle for the right to access to clinically effective drugs and to challenge rationing of cancer drugs by N I C E, who  stopped cancer patients getting the drugs their Clinicians wanted to prescribe.  It’s a long story and one which needs to be told, all the different patients and families ; the tragedies and the triumphs. Families who then joined in to try and help Mums and Dads and brothers and sisters, Julia and I have files full of letters and emails  and some long  hard fought battles took over 500 letters and months to fight. It was a terrible time and a disgraceful episode in the history of the NHS BUT STILL OUR FIGHT  GOES ON.

Julia was in the brave group of breast cancer patients  who fought, not only to get the drug she and other desperately needed (Herceptin) but  then  had to fight the funding bodies and regulatory bodies  like N I C E to get the drug approved for others .

I met when  Julia  was trying to help a Kidney Cancer Patient friend  called Keith Ditchfield who was trying to get funding for the drug Nexavar. Julia’s knowledge and contacts were working for Keith and through Julia’s efforts Keith was finally funded to have Nexavar paid for by the NHS – one of the first in the Country if not the first. We thought we could take Julia’s methods and my knowledge of the Cancer Networks and PCT commissioning processes  and make it work for the many other Kidney Cancer patients who needed the new innovative  drugs that were being used all over the world to treat Kidney Cancer except here in the UK.

I will continue the tale of what happened as when I have the time, but in the past 3 weeks mine and Julia’s time in increasingly  taken up now with a new tranche of kidney cancer patients who are now being denied Everolimus ( AFINITOR) a new drug manufactured by Novartis.

But please don’t just soldier on alone, do remember there is help here at the James Whale Fund for Kidney Cancer  www.jameswhalefund.or and the Kidney cancer Support Network  www.kidneycancersupportnetwork.co.uk  -  we are here to help each other.  Julia and I  are cancer patients ourselves, we know what this is like and we are doing this for no other reason than we believe cancer patients have a right to proven licensed clinically effective drugs. Please don’t  go on feeling you are on your own with no-one to help you.  Don’t feel you need to pay out for professional advice -  knowledge is power is this situation and we  can unlock that knowledge  for you to help you get the drugs you need. Our methods are used all over the Country by other  bona fide cancer charities who are trying to help their patients access treatments. Don’t be afraid to ask for help – we are  a community  of Kidney Cancer Patients and we need to look after each other. Which is what we  do here  at the JWF and the KCSN – come and join us and together we  will campaign for kidney cancer patients to have  NHS  treatment  “the right treatment at the right time” !!!

Posted under Afinitor(aka Everolimus/RAD001), Campaigns, Cancer Drugs, General, N.I.C.E., Rose Woodward, User Posts

This post was written by Rose Woodward on March 28, 2010

My letter to N.I.C.E. with regard to the Afinitor decision.

Let’s see if this has any impact.  I’ve cc’d my local MP and prospective MP and Sir Andrew Dillon as it usually forces them to reply and aknolwledge

Dear Professor Littlejohns,
I am writing to you directly as a Kidney Cancer patient in regard to your decision to deny Afinitor as a second line treatment.
Why if N.I.C.E. openly admit that this drug shows clear clinical benefit do you not seek to approve it?
As you are well aware there are very few treatments available to Kidney Cancer patients in the UK and as such when one comes along it seems only fair to approve it.
You seem (as usual) to have based this negative decision purely on cost.  The QALY calculation you use for some reason is not disclosed to the public due to  IPR which appears ludicrous given this is a public service.  I think it would be fair and proper to make your process transparent and available to the public at large as these are the people you work for.
As a supposed independent body I would expect N.I.C.E. to act as such and not just follow the direction of the Department of Health.  I expect N.I.C.E. to work in the interest of the patient NOT in the interest of government policy.
What real representation did you have from patients?  How much weight was attached to patients as you came to your conclusions?
It is also extremely unfair to only give the public (patients) a few weeks to put their case together.
Why are we given such little time?  If you want a response from patients then they need to be engaged at an earlier stage.  It is outrageous that we only have to the 2nd March to put a case together.
These drugs offer precious time to patients and families.  We are not talking weeks we are talking significant numbers of months and years (as you are well aware).  What cost do you attach to this?
I would also like to add that as a rarer cancer we are not looking at a significant number of patients that need these type of drugs so why do you attach so much weight to cost when we are talking 100’s rather than 1000’s of people?  At £100/day this is not a significant cost.
Kidney Cancer is not a large drain on NHS resources in comparison to other cancers,  so why are we treated in an inferior fashion?  Is it because we are small minority that can’t fight back?
All we ask for is a level playing field, this is clearly not the case and I would expect you to be addressing this in the interest of the patient NOT in the interest of the people who pay your salaries.
I was also shocked that Ann Keen chose to announce that she was spending money on a new design of hospital gowns the day you announce that you will not approve Afinitor as a second line treatment, this was heartless and cruel.  Disgraceful that we seem able to waste money and resources on items such as these and yet deny patients vital drugs that can give them a real quality of life.
Clearly there are hundreds of other examples within the NHS where resources are being wasted (not least of which is the NPfIT) but there is little point in documenting them each in detail in this letter as you are well aware of it yourself.
I urge you not to respond by saying that you are not responsible for any spend within the NHS or for government policy, rather I would like to hear how you will engage with the government (DoH) on how we can stop this waste. I’d also like to hear how you will start to engage with patients at a real level.  The NHS is a wonderful resource and it is sad to see it being destroyed by bureaucracy in this way.
Please realise that N.I.C.E. is meant to be an independent body working in the interest of the patient and as such we expect you to behave as such not to just throw cost in our faces each time a new drug is presented that offers valuable time and quality of life to people.
I respectfully ask that you reverse your cruel decision and allow Afinitor as a second line treatment for Kidney Cancer patients.  I also respectfully ask that you review what is clearly a floored approval process.
Yours Sincerely
Andy Thomas
97 Sheepcot Lane
WATFORD
WD25 0DU
cc Sir Andrew Dillon
cc Claire Ward MP
cc Richard Harrington
The more of us who do this, the more we can keep it in the public eye. The meeting at the House of Lords last week went very well and Rose has secured a meeting with Ann keen to discuss this further.  This is a great step forward!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 27, 2010

Today’s BBC lead health story not about Afinitor/Kidney Cancer,but “Does my bum look big in this?”……

Well I suppose it would be arrogant of me to presume that the leading headline on the health section of the BBC’s website would be about N.I.C.E.s disgraceful denial of Afinitor as a second line treatment for Kidney Cancer patients, however I was rather hoping that it would at least feature somewhere on the BBC Health news, but no.

The great thing though is that they’ve given us a smashing example of how we waste our money in the NHS on trivia that nobody cares about and yet deny valuable life extending drugs that do matter.   Not much logic going on from what I can see. 

So what’s the waste I was talking about?  Well apparently we all care deeply about “backless hospital gowns” and how our dignity is compromised by these odious garments. I have to admit that was the first thing on my mind as I was carted off to theatre for my Kidney Removal (nephrectomy), it certainly wasn’t the fear of maybe not coming out of it, or the fear of a cancer diagnosis, oh no, the fist thing I thought was …“Does my bum look big in this?” (and for those of you wondering, yes it did look big …… very big!)

The Offending Article

Sorry to make a joke of this but come on the BBC what were you thinking? yes it’s an interesting(‘ish) article, but not one mention of  N.I.C.E.s decision today on Afinitor anywhere on either the UK section or the health section of the website?  In an ideal world we’d have an NHS system with enough cash floating around to chuck away on “nice to haves”, but somehow I don’t think we’re there yet.

Maybe I’m doing old “Auntie” an injustice and there is mention of the decision on their website, in which case I apologise unreservedly, and anyway thanks for pointing out that Ann Keen (Health Minister) sees this as a burning issue.  That £25,000 you gave to the design council for the gowns could have funded 5 cycles of Afinitor for a patient……. Nice one Ann!!

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 9, 2010

What’s the point of N.I.C.E? …..

Here’s the mission statement (or purpose) of N.I.C.E. according to the front page of their web-site

NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health

So you’d think with this kind of remit they’d be working in our favour, and when I say “our favour” I mean the population of the UK and specifically its patients.

Yet when it boils down to it what they really do is to create negative guidance that allows others to wash their hands of the situation, such as the government who can just say “well this is down to N.I.C.E.”.   It also enables PCTs to deny patients treatment despite what the specialists say.

I’ve been to meetings, received mails, read articles where time and time again specialist oncologists are screaming for drugs that they know will help and yet they are denied.  It’s an appalling state of affairs and I would hate to have to be the one that has to give a message to a patient that says “yes, there is a drug that could help, but I’m afraid you can’t have it because it costs too much”.  It’s inhumane.

You can tell this is N.I.C.E.’s stance because of the clear statement again made on their front page

Disinvestment. Decommissioning. Saving money. Whatever you call it, the NHS faces an unprecedented financial challenge.

Use NICE guidance to help you to cut costs and maintain and even improve services.

Ok, so it would be churlish of me to not admit that the sentiment is that they are there to help, but it’s how they go about it that gets me.  This statement is all about costs, where does it really address the need of the patient?

I can plainly see that an independent body such as N.I.C.E. that looks at new drugs and treatments and offers guidance on their usage is no bad thing.  However the guidance is just that… guidance, but the PCTs use this as ”carte blanche” to deny patients, on what basis? Certainly not on clinical grounds.  No, it’s just cost.

I’ll use the example of Affinitor which has just been cruelly denied as a second line treatment for Kidney Cancer patients.  So, here we have a drug that has been clinically proven to work, every specialist (that I know of) in the country is backing this up.  A drug that’s been approved for usage in other European countries and in the US and yet for some reason (cost) we can’t have it in the UK.

What I would love to see N.I.C.E. do is to fight Whitehall on our behalf, not to just sit there and do the bean counting for government.  This organisation seems able to pronounce death sentences on patients by denying them drugs that extend their lives, and yet it seems unable to fight the waste in the NHS and other areas of government.  They are closer to Whitehall than any of us, surely they can see that waste AND actually fight to do something about it?  Why on earth, if they are truly independant would they seek just do the govenerment’s bidding?

Why leave it to patients and the charities to fight? I find it so had to believe that they are impervious to the waste, they probably see it more than we do.  Help do something about it!

So come on N.I.C.E. do what you’re supposed to do, do what you were setup to do, stop being a bunch of bean counters, stop measuring everything against some Qualy calculation.  Stand behind the patients and population you proclaim to be helping.  

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Posted under Afinitor(aka Everolimus/RAD001), Andy Thomas, N.I.C.E.

This post was written by AndyThomas on February 9, 2010

Kidney Cancer – is it the wrong type of cancer !!!

Today we hear that once again  N I C E have refused to provide NHS  kidney cancer patients with  licensed  cancer drugs for kidney cancer. Sometimes I despair of this NHS. In the same week that Gordon Brown announces that each cancer patient will receive a one to one care plan and home visits from nurses, the same cancer patients are told they will be refused treatment that is readily available throughout the rest of world. And not just  Countries like the USA where insurance companies hold sway over who gets what, but countries like France and Germany  and Sweden who operate social welfare systems. What is the UK doing wrong; why can’t we look after our own desperately ill cancer patients in the same they do in the parts of the EU. Will we ever  achieve their high standards of care while UK patients are refused treatment with clinically  effective and proven cancer drugs.

Perhaps someone from N I C E  can explain their actions to the kindly people throughout England who run relays in aid of cancer research, who hold coffee mornings, who clean cars on Saturdays etc  and do so because they want  cancer patients in their communities to receive the best care possible and not condemned to die prematurely because the NHS  can’t manage it’s  own money despite the huge salaries they pay their administrators.

Afinitor,  the drug are refusing to pay for  to help kidney cancer patients,  will cost  less than £100 per day – last week a Director of Commissioning  ( thats costing and buying services to you and me) for a PCT  in London was offered a salary of  £800 per day !!!!!!! . 

Kidney Cancer patients are ill & many are desperately distressed by what they & their families are going through, but we are not stupid. We know that NHS funds are not infinite, but when  for instance,  someone ( who exactly? )  at the Department of Health can sign cheques for £40,000,000 ( forty million pounds) for legal contract advice about the NHS IT programme that doesn’t exist, how do we rationalise that to cancer patients who are told they are too expensive to treat ? Why do we tell patients  their treatment is not a cost effective use of NHS resources when we have Health Authorities sitting on unspent surpluses in their annual accounts. Are cancer drugs are too expensive at £100 per day when we pay Directors of commissioning in PCT’s  £800 per day ? Will we soon reach a time when  the NHS will stop treating ” expensive”  serious road traffic victims, will we stop offering “expensive” dialysis at £35000 pa ,who will say if  heart or lung transplants and after care  are  too expensive? 

I have a dear friend who has terminal cancer who said to me – “being told you have terminal  cancer is not the worse thing in the world, far worse is being told there is a  treatment that will help you but you can’t have it”. That is the reality kidney cancer patients are living and dying with. Do you want your Mum or Dad or son or daughter to spend the last few months of their life with these words ringing in their head. “You are not worth keeping alive”   It is an unforgivable way to treat anyone let alone cancer patients  and their families !!

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, General, N.I.C.E., User Posts

This post was written by Rose Woodward on February 9, 2010

N.I.C.E. fails to deliver for Kidney Cancer Patients again

Yet again N.I.C.E. are refusing to approve a second line drug Everolimus (Afinitor) for treatment of Renal Cell Carcinoma (Kidney Cancer) patients.

On what basis?  Yes, you guessed it, pure cost.  It’s simply dreadful that we’re in this position again having just been through this with Sutent.  When patients life’s are at stake we are dictated to by a committee driven not by compassion but by pounds and pence, it just isn’t right.

Based on what? The drug has only recently come onto the market and to that extent there hasn’t been a long enough period of time to jump to conclusions.

This kind of stupidity stifles the oncologists who are left with their hands tied and no treatment options.  The ability to mix treatments is taken away from them.  It’s a hard enough disease to contend without these barriers.

The toughest part of this is that we’re not dealing with thousands and thousands of patients, but just a small minority of people that could gain enormously.   Whilst extra time appears to be irrelevant to N.I.C.E. it’s huge to the individual and their families.

Where is the compassion? I wouldn’t wish this disease on anybody but there are times I wonder if things would change if just one of these people at N.I.C.E. were directly effected , their minds would soon change.

As a rejoinder don’t think for one second that you’re protected by private health, these drugs are only made available for the first year and then it stops and you’re back in the NHS system.

An additional frustration is that some of these drugs are developed in the UK and yet are made available in other countries and we are left behind.  Why is that?  Are we so poor?

As usual we’ve been left with but a few weeks to appeal against the decision an as usual they’ve kept that part quite.

Come on N.I.C.E. get your act together and start making decisions based on compassion and not cost.  If N.I.C.E. ‘s only purpose is to decide on a QALY factor then I fail to see why they are there in the first place.  Anybody can do maths.  We want more than that, we want an independent committee that makes its decisions based on clinical evidence and human factors.  If N.I.C.E. is not making these decisions weighted on the side of the patient then I fail to see its value other than a way of the government being able to pass the buck.

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Posted under Afinitor(aka Everolimus/RAD001), N.I.C.E.

This post was written by AndyThomas on February 9, 2010

And the next drug comes along -Afinitor(aka Everolimus/RAD001)

How many times have I said to people at the PCT’s and asorted Medicines Managers and Health Economics bods that one of the reasons why patients want every single extra day of life that is available to them by being able to get their hands on new drugs, is that you never know what is round the corner – how true that is with Kidney Cancer ….. we know all about Everolimus from it’s clinical trials which have had good results but now the F D A in the States are going to fast track the drug – it will be marketed as Afinitor. This article has just been released in the Pharma Times …………………..

The Swiss drugmaker notes that the drug, which is also known as RAD001 and will be marketed as Afinitor, has been granted priority review by the US Food and Drug Administration, based on the drug’s potential to become the first therapy to demonstrate significant benefit in patients with advanced kidney cancer after failure of standard treatment. Fast-track status is granted to therapies that could potentially fill a currently unmet medical need and accelerates the standard review timing from ten to six months.

Novartis has also filed marketing authorisation applications for RAD001 with the European Medicines Agency and the Swiss Agency for Therapeutic Products. The submissions are based on data from the RECORD-1 trial presented in May at the American Society of Clinical Oncology meeting which show that after failure of standard treatment in patients with advanced kidney cancer, RAD001 more than doubled time without tumour growth and reduced the risk of disease progression by 70%.

Alessandro Riva, global head of development at Novartis Oncology, said that “currently, patients with advanced kidney cancer who have experienced treatment failure with standard therapies have limited options.” He added that “the priority review designation for RAD001 brings us one step closer to offering these patients a promising new therapy”.

Everolimus is a once-daily, oral therapy that inhibits the mTOR protein, which plays a key role in regulating tumour cell division and the growth of blood vessels in cancer cells. Novartis believes that the compound also has the potential to benefit patients with a variety of cancers, including neuroendocrine, breast, gastric and lung.

So thats yet another reason why these newly emrging drugs MUST be funded by the NHS.

When will these poeple listen to the Researchers and the Clinicians and the Patients?

Posted under Afinitor(aka Everolimus/RAD001), Cancer Drugs, Rose Woodward

This post was written by Rose Woodward on September 9, 2008