Kidney Cancer Bloggers Have your Say

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

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

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.

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.

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 !!

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

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.

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?

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