I’ve managed to record the salient bit of the program today for those of you who missed it, clearly you can still get it on BBC iPlayer over the next week however I thought I’d take a recording anyway.

Radio 4 Any Questions

Sorry for some of the background noise, but the quality should be good

The action we all took by demonstrating at NICE has clearly hit the sweet spot and at last it’s in the public domain. Do I agree with what the panelists were talking about? … Difficult to say really. I like the idea of co-payment, I like the idea that people (like myself) who can afford to pay for a visit to the GP should pay for example. I can however see the other side of the argument that Tony Ben was alluding to i.e. that this could be the thin end of the wedge and suddenly we’d be sliding down the slippery slope of means testing… where should we draw the lines?

For me it should be judged on a case by case basis, we’re not talking here of a bit of flu or an infection that requires a few antibiotics. I think that this is where the problem lies, all these conversations are trying to generalise it. How can you? It would make more sense to yes, make people pay for prescriptions and GP visits, it’s pretty easy to asses, we seem very able to do that for things such as income support …. wouldn’t that be the best and simplest dividing line? Why make it complicated?

Anyway, I’ve got no wish to upset anyone with my views as they’re not based on anything other than my thought process’ after listening to the debate today. I do however think, as I said in my last blog, that these are hard arguments to come back on… but I’m sure we can do it.

The debate has moved on, and yet again we see NICE using a new line of defence. They’ve clearly lost the clinical efficacy debate and that has been born out by ITV’s breakfast programme this morning and the numerous articles in the press this week (<a href=”http://www.kidneycancerresource.com/index.php/Main_Page” target=”_blank”>check out the rolling news in KCR</a>). So, now the argument is that the NHS simply does not have the money to pay for the new drugs as they come on-line. I think the figures they are quoting say it will cost about half the annual NHS budget to keep cancer patients alive, anyway something like that.

This is a tough one and I hope we can come up with a response. The hardest thing I’ve found when discussing this subject with anyone outside of the Kidney Cancer domain is that they have a view that was much the same as mine was prior to getting the disease. That view was that “there must be a finite amount of cash available and to that extent tough decisions have to be made”. What I’ve also found is that if you try to broaden the debate and suggest ways of saving money elsewhere then you’re accused of over simplifying it or “getting off message”, it’s a catch 22.

We all know that there is a £1.75bln surplus in the NHS, we know that agencies such as NICE spend £4.5ml a year on the media etc, and yet obvious saving like this are seen as a distraction and nothing to do with the topic in hand. One of the examples I have from an IT perspective is this….. as part of setting up KCR we went through every PCT and hospital in the country and listed them in the index, address’ and website address’. I can’t remember exactly how many there were but it soon struck me as I was doing it that each of them had their own individual web presence. Apart from the sheer frustration of having to manually enter individual Web-Site address’ it just struck me that what an incredible waste of money this was, each PCT paying for it’s own individual web development. Who let them do this? Who made the decision to allow them to decentralise this? Total madness. Madness not just because of the costs, but it’s made it more and more complicated to get information. One site with a list of all the PCTs with corresponding information, that’s all that was needed.

It’s these kind of chaotic decisions that’s making it tough for the NHS to afford real treatments. Only about a year ago a program on BBC2 exposed just how much has been wasted on a centralised patient record system that nobody at the grass roots of the NHS felt was necessary. Nobody even asked the users (i.e. people within the NHS) what problem they were trying to solve, they just made assumptions and went off and spent billions over many years on a system that nobody wants and has yet to even go on line from what I understand (could be wrong on that).

It’s bureaucracy gone mad as usual. Each of these items taken on face value would not pay for the Cancer drugs, however it would not be beyond the bounds of possibility to think that collectively they could.

The problem is we’re not allowed to talk about these things and we’re told we don’t understand the mechanics and we’re are making broad assertions …. “leave it to the experts”.

The sad thing for me is that my observation says it has less to do with politics and more to do with the complete overload of institutes, organisations and committees etc, all playing and making decisions in similar spaces in the NHS creating blurred lines of responsibilities between each of them. These blurred lines now mean that nobody has real ownership of the problem because they can all point to each other and say “nothing to do with me …. it’s them”. I don’t know, maybe that’s the political aspect, maybe they were set up deliberately to confuse.

However I’m not that cynical, I have faith in human nature; I just think they were setup with all the best intentions, and when one aspect hasn’t worked, rather than try and fix the problem at the root they just setup another layer. So this is why we’re stuck with such a huge management layer within the NHS.

I don’t know how we tackle these issues, they’re big and far from focussed. Anyone got any ideas?

The demonstration at the NICE HQ was a fantastic success, nobody can deny that. The back-pedalling from NICE since then bears testament to that and a great debt of thanks goes to those who made it happen.

To make the announcement about the eye drug on the same day as the demonstration shows just how low these people are prepared to go, they knew we were coming, we made no secret of it. They were even sniffing around the KCR website the day before to gather information on it. (In case you’re wondering how I know that www.sitemeter.com lets me see what IP Address’ are visiting the site and what pages they are viewing, I clearly can’t see individaul names but I can see network providers and larger organisations, and on that day it said N.I.C.E. … they came on 3 times).

The Eye drug announcement was just another one of those heartless and insensitive actions we’ve come to expect from a bunch of people who announce they have a £1.75 billion surplus in the NHS and yet refuse to let patients have the drugs they need, be they cancer victims or otherwise. Maybe they get paid bonus’ based on how much they can come in under budget?……..no, that’s just too cynical …… isn’t it? Also if they’ve had plans to readjust the QALY calculations then why did they wait to make that announcement? and why do they still not publish the algorithm for everyone to see? Theyr’e not the only people to understand comlpex statistics.

It’s all gone very quite, and I reckon they’re very thankfull for it.

I suspect we still need to tread carefully and ensure that we keep the pressure on. NICE have made “strange” decisions before and there’s nothing to say that they wont still turn around and say no to the drugs. We need to be on our guard. I’d like to see them make statements around any new drugs that come on the market that have the blessing of the experts (i.e. the consultants), I want to see statements that mean this will never happen again, and that never again will cancer patients be put under such extreme stress.

I believe that the real test of their intentions will be shown with the results of the next few PCT appeals. If they all go through on the nod then great, but I would hazard a guess that wont be the case. If I was a betting man I would expect them to now think that they’ve lulled us into a false sense of security only to deal a bitter blow next year.

Let’s keep the pressure on and keep on writing to them and the media and let them know that we’ve not forgotten. We all know that if we’d all sat back and done nothing we wouldn’t be in a position now where they’re back-peddaling like this.

I’m going to try and insist on a direct reply from my local MP. I cc’d her (Claire Ward) on my letter to Andrew Dillon. Her original response to another letter I wrote was weak. Although Dillon replied I’ve heard nothing from her. I also wasn’t happy with his reply to me so I’ll also be asking for clearer responses to some of the questions I gave. I’ll publish these as and when I get round to it.

Dear Mr Thomas,

Thank you for your email. I understand the strength of feeling, amongst those who have renal cancer and those who care for them about the draft guidance we have issued for consultation. Many people are expressing similar views, individually and through patient support groups.

You refer to some things you say I have mentioned in relation to renal cancer drugs:

1. QALYs: The reason we use this measure as the basis for our judgements on cost effectiveness, applied across the board, is that it enables us to act fairly in recommending the use of all the new treatments we are asked to appraise. The QALY value itself is not, though, the deciding factor. Our independent advisory committees have discretion to recommend the use of a treatment with a high cost per QALY where they consider that other factors, including the absence of any other effective treatments, are relevant. Treatments of more than £40,000 per QALY have been approved using this discretion in the past. However, the cost per QALY of these renal cancer drugs ranges from around £71,000 upwards of a £100,000 and the advisory committee took the view that the factors which they felt it appropriate to take into account in making their preliminary recommendations, did not justify extending their discretion that far.

2. ‘Pharmaceutical companies are to blame’: I have not said that the drug manufacturers are to blame. I have, however, pointed out that these drugs are extremely expensive and just as NICE is, quite rightly, asked to justify the its recommendations, so the drug manufacturers should be able to demonstrate that the price they are charging is reasonable. I accept that companies need to make a profit and I agree that drug pricing in general is a matter for the companies and the Government. However, it is important that when a decision of this kind becomes a matter of public debate, all the factors, including the price of the drug, should be considered. Any discount scheme a company offers needs to be discussed first with the Department of Health. The companies know this. I am not aware that they have done so. If the Department of Health asks us to, we will formally consider the cost effectiveness of their proposal. However, given that it was aware of two proposals, the Appraisal Committee gave some preliminary consideration to them. These schemes did not have sufficient effect to cause it to change its recommendations.

3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients?: Our job is to advise the NHS on the best use of the resources it has available. And when we advise the service to spend on one group, those funds are not available spend an any other. I can’t comment on your other points.

4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery: The point I made, on the recent Panorama programme, was simply that people who use the NHS for their care can reasonably expect good quality local decision-making where such decisions need to be made, and that a common set of criteria would help.

5. Patients are using the media in an unfair way to put pressure on NICE: I haven’t said this. In general, through, it is the case that engagement with NICE is most effective when it’s done through our normal consultation processes.

Yours sincerely,

Andrew Dillon
Chief Executive
National Institute for Health and Clinical Excellence
71 High Holborn | London WC1V 6NA | United Kingdom

Andrew Dillon
Chief Executive
National Institute for health and Clinical Excellence
MidCity Place
71 High Holborn
London
WC1V 6NA

Dear Mr Dillon,

RE:Bevacizumab, sorafenib, sunitinib and temsirolimus for renal cell carcinoma

As a Kidney Cancer patient I write to you in reference to your draft report on 7th August that outlines your recommendation to not approve the drugs for Advanced Kidney Cancer i.e. Sutent, Nexavar, Avastin and Torisel.

Over the past weeks I have heard a number of arguments that you’ve used to back your recommendation.

1. QALY, i.e. that these drugs do not extend a person’s life for long enough given the cost of the drugs

My response:

• These drugs are used successfully across Europe and the US and have been proven to offer significant improvements to quality of life as well as extending the life of a terminally ill kidney cancer patient for up to 26 months (latest clinical trails data) or longer as witnessed by many Kidney Cancer patients around the world.
• It seems to me to be a carpet bomb approach to say no to all 4 on this basis, this says to me that the decision was purely cost based and not on efficacy and clinical trial evidence, it was just NICE saying no to Kidney Cancer Patients no matter what the drug.
• Although I realise that the QALY calculation is complex, (although we don’t know as NICE wont release their methodology), I believe that your calculations have not taken into account the clinical trial evidence from other countries. I believe you now have this and will be using it.
• There are no other effective treatments for Advanced Kidney Cancer patients. As you know the current treatments have a very small percentage chance of working. You have also now heard from 25 UK experts in this matter backing this fact. To not give these drugs to patients is effectively condemning them to an early death.

2. The Pharmaceutical companies are to blame, their profits are too high and they charge too much for these drugs putting them out of reach for the NHS

My Response

• They do pump billions into research and as businesses are driven by their shareholders to make profits. Admittedly there maybe an argument to say their profits are too high and should be looked at. This however to me is a separate battle that the government/NICE should fight. It is not fair to use patients as negotiation tools to try and bring the costs down, if the treatments work they should be given as part of the NHS. NICE would earn more public respect and you will find much stronger public support for you battle with the pharmaceutical companies if you weren’t using patients in this way and I suspect you would win.
• The Pharmaceutical companies do offer schemes (e.g. Sutent) whereby they will pay for the first round of treatment. Why is this overlooked? It seems common sense to me to allow this because if the drug doesn’t work for that patient then the treatment is stopped.
• The figures you quote do not seem to take into account central procurement deals you would be able to negotiate, bringing the costs of drugs down.
• These drugs are offered at a lower cost to the UK than many other countries.
• Why do you ignore part funding/risk sharing schemes?

3. Who else would have to suffer if these drugs were funded? Which critically ill patients should be condemned instead of Advanced Kidney Cancer patients?

My Response

• This to me is an unfair argument. Yes, costs have to be factored into the equation, but with all the waste going on in the NHS and in the country as a whole this is just sheer bad management at the most senior levels. We seem as a country able spend billions bailing out our banking system (e.g. Northern Rock) and yet we can’t spare the cash to provide patients with much needed drugs. Not that I condemn the decision to bail out the banks because of the human impact, however it does seem odd that we’re able to do that and yet not provide for the NHS and patients who have no where else to turn.

4. The PCTs are adding to the confusion by not having a collective response to Exceptional Treatment policies and hence are fuelling the Post Code lottery.

My Response

• Patients are meant to be judged on their individual and specific exceptional needs. Wasn’t that their purpose to provide local accountability and community based support? If the PCTs and NICE are not communicating then what hope is there? It means 2 layers of management in-between the doctors and their patients. I’m so heartened to see that finally consultants and specialists are highlighting the clinical case for innovative cancer drugs and are fighting back.

5. Patients are using the media in an unfair way to put pressure on NICE.

My Response

• What did you expect? Central government does nothing, our local MPs do nothing, NICE denies the drug, the PCTs turn down the exceptional cases. What course of action are patients left with?
• Try and put yourself in the feet of a patient, of course you would do anything you can to get drugs that you know will help. If you personally were told by a specialist that there is a drug that can help but it wont be approved for you even though it has been proven to work in other countries. How would you feel? It is nothing short of cruelty.

Now that you can see the weight of public opinion I implore you to change your recommendation and approve these drugs now, not next year. Give patients and families their lives back. Please back the clinical case and restore the faith of the public in our NHS doing the ethical thing and giving these vulnerable patients the treatment they desperately need.

Yours sincerely

Andy Thomas

What a great day it was, I woke up expecting it to be a wash out, but by about 12 noon the skies had cleared and I set-off for Aylesbury for the annual Hobble on the Cobbles. I spent a bit of time listening to a few acts before meeting up with Francis and the band. One band in particular caught my eye and that was Loz Jones, cracking set. They were the opening act and set the tone for the rest of the day. The sound engineers had done a great job, possibly a bit too loud generally but very clear, and everything was well placed, and when I listen back to my recordings you can really pick out the bass and drums which makes all the difference as far as I’m concerned.

So after a chat over a drink it was soon Francis and the gang’s turn up on stage, they were the penultimate act. I was impressed, it was the first time I’d seen them live, I suppose I shouldn’t have been surprised given I auditioned for them, they were tight then. I guess it was also the first time that 99% of the audience had ever heard their music, and that’s what made it great, Francis can hold an audience and get them on-side; a true sign of any real artist. I was conscious of thinking that so was looking around for reactions, what I did notice was people generally moving to the music and a lot of foot tapping… always a good thing. I know Francis and the crew struggled with the monitoring on stage, but to the audience it was well balanced.

It’s a shame the album wont be out until Autumn time, however I suspect it’s going to be well worth the wait. You can tell that Steve Bush has helped mould the style by the subtle changes in the music. “Burn” is almost a different track to my ears. You can hear the new version of “Burn” if you goto his website. Check out the old version against this new one and hopefully you’ll hear what I mean. One day we may manage to convince Francis to put “Sad Man Blues” on an album, but then again maybe I’m just a “Sad Old Git” and that’s not the direction for the band.

Anyway I’m looking forward to their next appearance wherever that maybe, I think they’re a crowd pleaser with tracks that somehow stick with you.

As a slight aside Matt George (the drummer) is currently in the middle of walking from John o’Groats to Land’s End for Cancer Research but managed to play both the Paradiso in Amsterdam and Aylesbury … he just had to be plonked back at his last known position, he should be on his way from the Telford area now. For those wishing to donate click here to goto his justgiving site.

Folks,

I know this is a bit of a cheek, however nothing ventured nothing gained as they say.

As you’re probably aware in the UK we are struggling to get the 4 main RCC drugs (SUTENT, AVASTIN, TORISEL and NEXAVAR) made available on our supposed free National Health Service (NHS). The Government committee N.I.C.E (National Institute for Clinical Excellence) who decide on what drugs get passed into general use have decided that Kidney Cancer patients will be denied the right to these drugs and effectively be left out in the cold.

This is a disgrace and urgently needs to be stopped and over turned. As part of this cruel ruling they have also only given us 20 days (now 11) to respond to this before the right to reply is closed. Demonstrations and events are being organised by a number of groups in the UK over the next few weeks to help get the message across.

Now, here’s the cheeky bit. I realise this is a big ask, but any international direct responses we can get to N.I.C.E would be greatly appreciated, especially from those who have direct experience of these drugs or from those who have expert knowledge in any capacity..

You can see some of the recent news articles on the subject on our front-page:

http://www.kidneycancerresource.com/

You’ll also see on the right hand side of the page (just below the Red banner) a link that says:

“Click here to get your personal response on their Web-site by 29th Aug 2008”

If you click though it will take you through to the N.I.C.E site where you can put your comments. As with most government things they’ve made it as complex as possible to put us off, however at least it’s open to international responses.

I realise that this is a big ask and I fully respect your wishes if you would rather not do it, however any suggestions on general campaigning you may have would also be gratefully received.

Sincerely

Andy

I thought it maybe worth publishing my response to Paul Flynn’s blog on the subject of N.I.C.E. although I admit I don’t agree with his views on the pharmaceutical companies I do at least appreciate that he is willing to engage in the subject, something my local MP (Claire Ward) was not prepared to do.

Hi Paul,

Thanks for raising awareness around this subject; it’s good to see that someone is willing to debate the subject.

The issue I’d like to raise is that the Kidney Cancer drugs that NICE have chosen to deny are available in most other countries, so why not ours? Are we so much poorer?

I realise that cost always has to be taken into account, however NICE seem to shift their argument from cost to the drugs not offering enough benefit (which is not true), and now they are shifting the blame onto the PCTs for not being consistent and creating the whole postcode lottery.

I admit I’m confused. There appears to be no consistency around who does what and how. The PCTs claim they were setup to specifically work in the interest of their local communities which naturally creates a postcode lottery, and yet NICE say all the PCTs should be working together.

When I wrote to my local MP (Claire Ward) I was told that this was not a government issue and was the sole responsibility of NICE and the PCT. To say I was disappointed with that response would be an understatement, pointing a cancer patient at Cancer Research was little more than patronisation, I have no problem with Cancer Research but I think I could have worked that out for myself. If our elected members are unwilling to take responsibility then what hope is there?

To see her response feel free to open the links on my Blog

Surprised by my Local MP………

I tend to agree that the big pharmas are making huge profits, but then again that’s business isn’t it? If we didn’t have them pumping huge amounts of money into research we wouldn’t have the drugs in the first place, so to me it’s a catch 22 situation.

Given we all tend to agree that the pharmas could maybe bring their costs down a little, then what cost should we put on a cancer patient’s life? £2,000/Month? £2,500/Month? £1000/month? At what level will NICE agree to keep tax payers alive?

I think if NICE (or indeed the government) want to use cost as a reason for not delivering these much needed drugs to patients then I think we need to have more transparency around the whole process so we can all be made aware of how the money is used.

What will now happen to the people who have been granted these drugs already? Will they be denied now and condemned? Here’s an example of a patient in such a situation:

Threat to cancer patients’ lifeline drug supply…..

Why would we want to put these people through so much stress? I hope I’m lucky and now free of cancer, however I can tell you from personal experience that the stress and turmoil this puts you through is unimaginable unless you’ve been there. To expect a patient to have to beg for a drug they know will help is unforgivable. Look at Jean Murphy who even got a human rights ruling against her local PCT and yet still they refused.

Anyway I could talk about this at length, however I hope you’ll take the time to dig into more detail and help the Kidney Cancer patients that have been given less than 20 days to get their responses into NICE on the dreadful decision. Maybe you’d have access to the people who gave us such short notice to co-ordinate our responses?

Andy

N.I.C.E must be getting desperate now. The latest article (that’s 7 today) is trying to shift the blame onto the PCTs. Andrew Dillon (head of N.I.C.E) is saying that the PCTs need to be more consistent with their approach and take a common view as this has caused the confusion. I suspect that view from where he sees it is to say no across the nation. Well we all agree that the post-code lottery is a farce and needs to change.

So they’re taking a 2 pronged blame shifting approach a) Lets blame the pharmaceutical companies and b) Lets blame the PCTs. In fact lets blame everyone except ourselves. The true teflon coated team from N.I.C.E.

Neither of these excuses answers the fundamental question which is why are other countries able to offer these drugs as a matter of course and yet this developed country cannot?

They have shifted from their original excuse of the drugs not offering enough benefit. This is a good sign i.e. they are for sure on the back foot and are struggling to find credible reasons. If they are now shifting blame from one layer of government bureaucracy to another then they must be feeling the pinch, he says he wants the PCTs to act as one, it sounds like they all need to………good.

It’s hard to feel sorry for them, let’s face it they’ll probably all have private health cover and will never be left in a position where they have to go down on bended knee to beg for drugs to keep them alive, do I feel sorry for them, do I feel we’re being “mean”….. no. Finally they’re getting shown up.

There’s been a huge amount of news coverage over the last week or so about the dreadful decision by N.I.C.E who have said no to SUTENT, NEXAVAR, AVASTIN and TORISEL being freely available on the NHS. It’s been hard for KCR to keep up with them all, which is great, finally some real traction.

This has been a devastating blow to mRCC patients across the UK. People who have already won their PCT appeals are now left wondering if their treatment will continue. For those who are waiting to go to appeal it means an almost definite no as the PCTs collectively stand behind the N.I.C.E decision. Before this announcement you could expect a chance of receiving the drug, in North West for example the PCTs were allowing the drug, now the answer is a resounding no. It’s a disgrace.

So what’s happened in the media then? 5 articles today spread across the national media all telling us how angry the drug chief is at the high prices the pharmaceutical companies put on these drugs which is making them too costly for the NHS. He even said that people were being “mean” to N.I.C.E. Is this the media trying to bring a balance to the argument or is it because government agencies have better access to the media than the general public. I fear it maybe the latter. This needs a proper balanced debate with both sides of the party given an equal chance.

The Oxford Kidney Cancer Support Group was supposed to be getting an article in the Sunday Times today. This article would have told everyone about the demonstration against N.I.C.E on the 27th August at 12 noon at High Holborn in London. Kidney Cancer patients across the country will be diverging on the N.I.C.E headquarters’ to personally hand in their responses on the N.I.C.E decision. Good luck to them, I’ll certainly be there to offer my support.

These drugs offer an increased quality of life for patients, perhaps when the people at N.I.C.E actually see some of these patients face to face they may have a change of heart.

I find it irksome that N.I.C.E are blaming the pharmaceutical companies. Forgive me if I’m wrong but the costs are the same in any country, and still doesn’t excuse why a so called developed nation such as ours that is supposedly proud of its NHS system effectively condemns patients to death. It’s a feable argument and makes me think that they are clutching at straws and know that their decision is flawed.

I hope they’re on the run and will soon do a much needed u-turn on this cruel and heartless decision.