Why today’s prostate drug decision makes no sense

Isn’t it true that the older the man with terminal prostate cancer, the shorter the time benefit he gains from treatment, such as chemo and/or hormone treatments? Accordingly, why do not trial results show survival data as a
function of ages of patients. Admittedly, doing so might make it less likely that older men (like me) are able to obtain expensive drugs than their younger counterparts. Notwithstanding, is this reason enough not to collect and publish the data? I am 81 years old. Still, I”d like to know how little time I have left. If only a month, I’d rather avoid side effects and go on to hospice treatment

To D Manger, I couldn’t of put it better myself.

I was unfortunate to get advanced prostate cancer and what a lovely country we live in i have worked here all my life and well over my retirement age and like thousands more have paid into the national health from when it first started. What a generouse country we live in we can send millions of pounds to other countrys and we are classed as a rich country yet we canot give our own people a cancer drug to help them, and only the other day it was in the papers that any people comming from abroad to this country with hiv can have free treatment i am fuming thanks for nothing D manger

If cancer research helped play a key role in the research of this drug and gave funding what right do NICE have to overprice this drug so that the NHS cannot afford to use it for the very patients it was made to help! It should be made available at an affordable cost so that the very people that need it can be treated with it. This paragraph below is from the NICE website
The National Institute for Health and Clinical Excellence (NICE) was set up in 1999 to reduce variation in the availability and quality of NHS treatments and care – the so called ‘postcode lottery’.
Our evidence-based guidance and other products help resolve uncertainty about which medicines, treatments, procedures and devices represent the best quality care and which offer the best value for money for the NHS.

My Dad is due to start taking abiraterone in the very near future and I am quite frankly appalled and very angry at what I have just read. I have raised money for cancer research and think it is a disgusting that someone should be able to stop the NHS from using a drug which could help a lot of people for the sake of overpricing a drug when they are the very people that are mean’t to be helping and fighting for rights of these people. How do they benefit from overpriceing these drugs is for profit?

I’m torn on this – I think it’s disgusting that the drug companies can essentially hold the NHS to ransom, but equally I understand that when budgets are tight that end-of-life-prolonging drugs may be shelved in favour of treatments for those who have a good chance of making a recovery. I don’t have personal experience and there is no such thing as a more convenient time to die, but I can imagine how important and extra couple of months can be, to set your affairs in order, to see a child get married or to be around long enough to meet your newborn grandchild. Government budgets are set – it is not as if the NHS can go penny pinching from transport, education or defence (and neither can they go penny pinching from the NHS) in order to fund it’s bottomless pit of worthy causes.

If there is anything to be learnt from this, it is the importance of early diagnosis – life is too precious to put off going to the doctor – the longer it’s left, the greater the risk of terminal illness and being trapped on the receiving end of expensive drugs and tight budgets. My uncle is 58 and was diagnosed with prostate cancer last week – they have caught it early. I hope he does not find himself in this awful predicament in months/years to come.

i would like to say that i a absolutely discusted with this
goverment and te national health service that they are not paying for the new drug for prostate canser i have the desease and have payed in all my life since the nhs
started and now tha i need it they ae refusing to pay for the drus i need

I was horified to listen on the 6pm news tonight that NICE in their wisdon are saying that they are advising that the drug Abiraterone is not going to be prescribed for Prostate Cancern Patients. I think that this an outrage.

I hope i can get the drug

IMO some pharma companies inflate costs. Hlding a patent is not for holding lifes to ransom. I understand that its a business, but there has to be a line drawn somewhere. The NHS cant be expected to spend thousands for every patient. Hopeing for the best!

why should we bother toraise money to find new drugs.when we arenot allowed the use of them to prolong our loved ones lives.it takes the heart out of the fund raises . why bother,spend thousands to fill the pockets of the drug companys.i give up,

As Mr michael Andrews says the list is endless. This country could be rich again if it stopped handing out billions to freeloaders and foreigners who just love all the benefits that are handed out to them. Aberaterone not only prolongs the life of the sufferer but enhances it by decreasing the pain and suffering they are in, every type of pain killer that was tried on my husband barely relieved the pain, but since he started aberaterone he is virtuallt pain free and can walk unaided. He has paid hundreds of thousands of pounds in taxs and insurance and has never claimed one penny in benefits throughout his life. As the saying goes” charity begins at home”, doesn`t seem to apply to this country tho.

Is Abiraterone available through private clinics?

In terms of value (using their QALY), NICE calculated Abiraterone to cost GBP 63,200 per year. The QALY limit is typically GBP 30,000 per year, so I’m very suprised that CRUK is crying foul. Abiraterone is hugely expensive and remember is doesn’t save lives only extends them. It is very unlikely that NICE will reverse their decision at appeal.

Instead of complaining about NICE’s decision against parameters that have been laid down for many years, CRUK should do more to ensure that the fruits of their charity funded research are not wasted because the resultant drug is priced out of the market. For example they could stippulate that any treatment that exploits CRUK’s research cannot be priced above NICE’s QALY limits – easy.

I do sometimes wonder about CRUK’s motives and the conflict of interest that appears to exist between CRUK and the drug companies. How much of CRUK’s research is actually drug development R&D which could be done by the drug companies themselves (for which they can be handsomely rewarded)? How much the CRUK’s money is actually subsidising ‘big pharma’?

I dont think people really understand cancer. This is one disease where no amount of money is ever sufficient. I understand recession and the whole baggage its brought upon us but thats no excuse to decline human right to access treatment. Recession was brought on by poor banking/poor govt decisions/ lack of govt control over poor banking etc.. Cancer is not brought on us by our own initiative. Why to make people suffer more when they are already facing the worst in their lives.

My dad was diagnosed with prostrate cancer. He is not in UK but I know what we all as a family went through when he was diagnosed. It felt like a death sentence to all of us. All the laughter and fun suddenly seemed to have had dissappeared from our lives. The tests and the scanning and the whole tratetment that followed made us all feel every minute a lifetime tragedy. He is all clear now. But the underlying fear that it may come back never went away. We dont talk about it yet its all there at the back of our minds.
So please dont make cancer medicaion a business deal. Dont play with peoples’ lives.
I totally support Michael Andrews above. When so much is spent – “politically” without the consent of the public why to make a life saving drug such a big issue.

my mother and husband died from cancer as it was caught too late,but if a new drug had been developed to prolong their lives we would should have had the right to have it on the NHS.Drug manufacturers should be govened by basic buissnes practice as we are talking about peoples health,in short the price should be cost plus a reasonable profit. NO MORE

how much did we spend on Lybia,Iraq.how much do we pay the EU to tell us what we can and cannot do,free board and lodging to terrorists.How much do we send in overseas aid to some countries that are financially better off than we are.How much do they intend to spend on the new High speed railway link that is not wanted by a very large percentage of the population.How much could be saved if HMG got rid of the large number of Quangos (remember the election promise )?How much could be saved on MPs/Lords expenses,discounts & subsidies,particularly in food and alcohol,look at the figures, along with overseas “observation/investigation trips.The list is endless and,apart from this we lose all our countries defences.Timwe HMG started spending money AT HOME where it is needed

This drug should be widely available to all men with prostate cancer.
It saddens me so much, after all the hard work, etc that a price cannot be agreed for this.
This treatment is vital.
For some this may be their only hope.
When you look at all the waste where spending is concerned, it’s an outrage.

My father has been suffering from prostate cancer for 20 and a half years.Over the years his body responded well to a variety of drugs and thanks to research he has been able to fiight his desease. He is currently 85 and taking Arbiraterone in Greece through the Greek NHS system. It has cut his PSA count by half in 6 weeks! It has given him new hope and is able to enjoy life. He is currently not counting months.
I am surprised that in a country like the UK the NHS cannot find the money to help people when millions are squandered elsewhere.

Hi everyone, thanks for all your comments – great discussion and some really interesting points raised. We just want to clarify a couple of things:

Firstly, for rather complicated reasons, we have no control over the price Janssen charge for abiraterone. Here’s a very quick summary of the drug’s history, which hopefully will explain why:

After Cancer Research UK-funded researchers at the ICR discovered the compound and did the initial preclinical work, our technology transfer company Cancer Research Technology (CRT) looked for someone to take this forward. This is because conducting the large (phase III) trials needed to prove a drug’s effectiveness is extremely expensive, and beyond the means of institutions and charities like ourselves and the ICR.

CRT assigned the rights to abiraterone to a company called BTG International ltd, who funded further development, and then in turn licensed the drug to a pharma company called Cougar Biotech, which was later absorbed by Janssen Pharmaceuticals, part of Johnson & Johnson.

As a result of these agreements, BTG International receive a small percentage from J&J in royalties from each sale of abiraterone, and in turn, they pass a percentage of this on to Cancer Research UK. While this has the potential to add up to a reasonable sum of money for us, it’s almost certainly not enough to affect either J&J’s calculations over profit, nor NICE’s preliminary decision.

Without partnering with industry in this way, we’d never be able to turn our laboratory discoveries into treatments for patients. And obviously, pharma companies need to recoup the huge sums of money they spend running expensive phase III trials.

As we said above, the original deal with BTG Ltd was signed in the late 80s – well before NICE was brought into being. Nowadays, we try as hard as we can to make sure deals signed over Cancer Research UK-funded research contain clauses that aim to ensure drugs are brought to market at a price NICE is likely to favour.

Secondly, Keith, the only abiraterone trials that have been completed to date have been for men at the end of their lives, for whom there’s no alternative treatment. This is often the case with new medicines – they’re initially tested in fairly extreme circumstances, and then gradually widened out to more people as evidence accumulates that they’re effective in more people. There are currently trials that are investigating abiraterone for men at an earlier stage of the disease, and we’re eagerly awaiting their results.

And a final point – while we disagree with this preliminary guidance from NICE, we completely recognise the difficult position NICE is put in by circumstances, and recognise the vital role they play in making sure the NHS drug budgets are kept to a manageable level.

Henry
Cancer Research UK

I started on the Phase II post-chemotherapy trial for Abiraterone in December 2006 at The Royal Marsden in Surrey and was still receiving benefit from the drug (as my only medication for prostate cancer) three and a half years later. I had very few side effects, none of them significant and little or no pain from the prostate cancer that had metastasised to my bones.
NICE is quoting four or five months as the time of average benefit. Be assured that I’m not the only man who counts the effectiveness received from the Abiraterone trial in terms of years rather than months – with a normal ‘quality of life’. Those beneficial years have now led me to another trial, based on genetics, which is also proving to be of significant benefit to my PC.
Others have raised the unassailable argument (see previous posts above) of how this government seems to have its priorities wrong when it comes to medical research and new drugs. I couldn’t agree more. Only 4 months ago NICE declined approval of Cabazitaxel. – Another drug researched and developed in the UK and shown to have proven benefit to certain types of prostate cancer.
Abiraterone (Zytiga) is now ‘standard treatment’ in many other countries so why should those in the UK, the country where these drugs have been researched and developed, be left out?
Such refusals by NICE must seem like hammer blows to the dispirited researchers and clinicians who have spent years of their lives working on the development of these new drugs. Who could blame them if they leave the UK to seek research posts in other countries where their work will be appreciated and put to the beneficial use of patients without quibble over cost.
Also, let’s not forget all those who have spent considerable efforts fund-raising so that these new drugs can be researched and developed in the first place. – It’s a kick in the face to them too.
We must maintain the pressure on NICE, MPs and Government ministers to ensure that this short-sighted decision is reversed so that the lives of many men, and the well-being of their families and loved ones, are saved.

Disapointing, but lets hope and appeal will bear fruit

The high cost of Abiraterone is due to the high dosage used of 1 gram (4 tablets) daily. This high dose was arrived at from the Phase 1 clinical trials and shown to be the maximum effective dose. However Abiraterone is very potent and had a minimum effective dose of 250 mg equivalent to 1 tablet daily. The high dose of Abiraterone is required for the first month to achieve total androgen deprivation neccessary for tumour shrinkage. After 1 month the LHRH signals have given up trying to make more CYP17 so subside to castrate levels. Once this has happened it makes no sense to be still giving a high dose from a mechanistic point of view. So perhaps a lower maintenance dose of 1 tablet daily could be used at a monthly cost of only £750.
There is also the question of dosing Abiraterone with meals since the uptake is greatly increased with food which would allow a lower dose to be taken. However Abiraterone is currently recommended to be taken without food and this topic is the focus of current clinical trials. Trials are also looking at improved formulations that allow a lower dose to be used.
I think the costings should also take into account the money saved by not keeping someone in hospital, since Abiraterone can be taken at home.
Abiraterone has overcome many regulatory hurdles over the last 20 years of development so I am sure that it will overcome this final hurdle to be available to everyone in the UK with prostate cancer.

It is a fact of life that the government would not be able to afford every drug that could make a difference to a cancer sufferers life, even if they used their budgets more effectively. What scares me is the power the drug companies have to dictate such huge prices. While i understand that the partnership with Janssen was set up 20 years ago, and that any royalties would be pumped back into research, it is clearly complicating an already crucially difficult situation. However, there has to be no doubt about abiraterone’s importance. Those who have perhaps not had family members with cancer cannot understand the importance of an extra few months for a patient, but palliative care is still essential – we all have the right to the most dignified and pain free death that the NHS can provide, and they clearly have a budget for it.
The most frustrating part of this issue by far is that with a little leeway given by the drug company, and a little by the government (after all, it really is just a disagreement about projected figures) this drug could be available to so many.

Thank you for your follow on supportive messages, maybe a pettition should be set up to make the drug company lower their price and shame this awful goverment into funding this much needed drug. Not only does this drug prolong the life of the sufferer but decreases the pain they are on and so gives them a better quality of life. My husband was in so much pain prior to being prescribed the drug it was heartbreaking to see him crawling on hands and feet up the stairs. He is now virtually pain free and living a realatively normal life. We are under no illusion that it is a cure, but every day he is with us and pain free is a blessing. Good luck to all of you out there with this terrible illness and I hope that you will all be able to have access to this much needed drug.

I was widowed because my husband lost his life to cancer aged 59. My brother lost his life to cancer aged 46, leaving behind 4 children. I work with a wonderful man who has been diagnosed with prostate cancer aged 59. His is terminal. I look at his wife who will be widowed like me….robbed of her old age companion.
When will our government put British people first, and give them the treatment they need? All these men listed above paid in to our Nation Health ALL their lives, worked and paid taxes, and were honest and hardworking family men. Two served in our Armed Forces.
We need to seriously think about this issue…….cancer has no favourites……..who will be next to give up their life because the Government has put money before mercy?

I cannot believe the priorities of this goverment, they can find billions for foreign aid, millions to send to Poland for child benefit, millions in housing and social security and NHS care for people coming into this country who have never paid a penny into the pot yet they cant pay for a life saving drug for the people of their own country who have paid all their life such as my husband who at 52 has advanced prostate cancer. Luckily for us we have private medical insurance with BUPA who are funding it for him. We have people coming into the country with pre existing diseases and illnesses who are being treated for free, housed for free and educated again for free, it doesnt make sense. Get your act together Mr Cameron and start treating your own people with these terrible illnesses with dignity and the respect they deserve, these are the people who by working all their lifes are helping to fund your foreign aid and treat the foreigners who arrive here, I am disgusted.

I’m lucky- I was diagnosed with bowel cancer and received the best treatment possible at the William Harvey Hospital in Ashford, Kent. This was 4 years ago, and I feel great. My sympathies go out to those who have been diagnosed with prostate cancer (and their families, too). I couldn’t agree more with the comments made about other government expenditure, and as for the banker’s bonuses…..- words fail me!
Come on, you decision makers, THINK!!

Shame on NICE! They should be officially renamed the National Institute for Cost Effectiveness! Once again they get it wrong. How can any price be put on life?! Too many patients are being denied effective drugs in this country which can extend and give better quality to life and also give others much needed hope. I do so hope NICE and Janssen can work together on a solution so that all patients who need this drug may access and benefit from it as part of their deserved treatment.

My dad died two years ago, he was diagnosed with prostate cancer at 74 and was told he was too old to operate on. Later we found out that the cancer had spread to his bones. He had radiotherapy and drugs. I sat with my dad at his last hospital appointment and my dad begged the doctor to give him something, anything so he could see his grandchildren just a little bit longer. It brings tears to my eyes just thinking about how desperate he was that day. I now worry for my husband, son and son-in-law. Money shouldn’t come into it.

I lost my day to prostate cancer 2 years ago and I can’t emphasize enough how important even the hope for this drug was to our family…What I wouldn’t have given to have even one more day with my Dad – it would be so much more that the montly cost and I agree with Bryan -you can’t put a price on the extension of life to those for whom it matters.. who knows, if he’d had the opportunity to have this drug he might even have been walking me down the aisle this May? I will definitely sign the petition on behalf of all those families like mine

As someone who lost my Dad to prostate cancer 2 years ago, I can’t emphasize enough how much it would have meant to extend his like…even by ‘as little’ as 4 months – right now I would give twice the monthly cost to have one more day with him… I agree with Bryan..any life extension is priceless to those affected.. and who knows, maybe he could have even walked me down the aisle this May? I will certainly sign the petition on behalf of all families like mine.

I was diagnosed with Prostate Cancer 10 years ago and there was little in the way of drugs to help. I was 52 years old. As a result I had a radical prostatectomy and later several weeks of radiotherapy. I know it worked and that is wonderful, but a drug trial would also have been a lot less gruelling to start with, it is such a pity that everything to do with living a better life carries such a financial burden. the people that make the decisions really need to look at those that suffer most, these drugs are developed over years and years of work and research, why cant we just be allowed to take them without begging.
strange but they may be NICE by name, but they are not always NICE by nature.

For £3,000 a month – I think I will see my days out with cocaine.

If CRUK are talking about a compromise situation between Janssen and NICE, would it not seem to be that a compromise between CRUK and Janssen on the matter of royalty payments could be a step in the right direction and perhaps lead to a more sensible price structure for this drug,

Right from the days of Avastin, i have been aware of the shenanigins of N.I.C.E. I am sure i am not the only one who wonders what is the point of all these developments when the man or woman in the street cant make use of them. It is like someone putting your favorite meal on the table in front of you and then someone rushing into the room and handcuffing your arms behind the chair. My heart bleeds for all the sufferers out there and who knows it could be my turn next…. or yours ! Still happy days, we will have lots of money to spend on some more wars soon.

Once again the Drug Company ‘Giants’ are peddling their wares at obscene costs.
I am fully aware of research and development costs, but to try it on with the NHS is really despicable. Are those Companys really serious in thinking that the NHS will fund £3,000 per month? per patient?
Let those Companies tout their products elsewhere and find out that their market at this price, even worldwide, will be minimal!!

Once again the drug companies are trying to milk the british publc. I appreciate the cost of drug development but surely the cost is way over the top. This will in all probability soar the profits and pockets of the shareholders. While the big companies and millionaires avoid paying or do not pay tax the British public are being denied an important drug, having services cut and seeing privitisation of the NHS by the back door, never mind we are all in this together. Well the working class are paying for it, first things first.

When they decided to name the quango as the ‘National Institute for Health and Clinical Excellence’ – which abbrieviates to NICE, they should have been more truthful and named it ‘National Institute for Controlling Expenditure’ which also abbreviates to NICE.

Strange how billions can be found to build high speed train links that nobody wants, wars, benefits, olympics, etc,etc, but not on really important things like this. Trouble is, I think, not enough polititians have this problem. If they did it might focus their minds a bit more.

As much money as possible should be spent to help those who need this drug. however, as someone else has commented research to spot it at an earlier stage.Joe public should be able to reap the benefits of his donation and have some say in the rationing of this drug and the distribution of the profits gained.

It seems cruelly ironic that the biggest contributor to CR UK`s funds,ie.the little man in the street,will once again be theleast able to take advantage of a capable new drug.

I was diagnosed with stage 4 kidney cancer in 2006. After an appeal I was allowed a drug called sorafinib (Nexavar ) I was told I may get up to 18 months life extention. I am still going 5 1/2 years later. These drugs are expensive but who can put a price on a life. I have been gifted with 3 Grandchildren which I would never had seen had I not have had the drug.Any life extention is priceless as it gives the patient time to say and do the things they probably would not have had.

My husband has been on aberaterone for nearly four weeks and has an appointment next week for a check-up and hopefully will receive a further month’s supply of the tablets if all is well. The difference the drug has made to his symptoms and morale is amazing, even after this short time. We read yesterday’s NICE decision with sinking hearts and wonder whether his treatment will continue. If there is going to be a petition we will certainly sign it. For hope to be snatched away is cruel, for us and for many many others.

“as a tax payer I would be appalled if my taxes were being used to pay for 1 month end of life when there are so many demands on limited health service budget”

I am quite surprised that in a forum like this, you can say something so insensitive – and simplistic. Clearly, some of the health budget must go towards end of life care – after all, we all die. Perhaps when you die, you would like to be alone, with no pain relief or assistance?

How exactly that end of life care is implemented is another matter. Obviously, hard though it is, economical issues have to be balanced with clinical ones in order to best care for the greatest number of people. I am very conflicted on this particular issue: while I understand that the health service is stretched, I know how much an extra couple of months can mean to a family – it is not something you can put a price on. I can only hope that after recalculating, the money can be found somewhere.

As a retired Macmillan Urology Nurse I am very saddened that this drug is not approved for the men who can benefit from it. It is a sad world where we can spend millions on missiles to destroy life, but a few thousand to improve someone’s quality of life is seemingly out of the question.

My views reflect a lot of what has been said above. If publicly funded CR UK has been a key developer of the drug abiraterone, how does Jannsen justify a cost of 3000 pounds a month. Looks more like making money then saving lives. Though I will continue to contribute, I wish CR would nail down what the eventual outcome and cost of a treatment will be before entering into a deal with drug manufacturer.

Why are we still giving millions of pounds in aid to other countries such as India who have a space programme and are considering buying fighter jets from overseas, surely we should look after our own first.

I am angered by NICE’s decision. Having lost my step-dad to Prostate cancer 2 years ago and now have a close friend with the decease; it is infuriating that the length and value of someone’s life can be determined by a govt department who are effectively held to ransom by the pharmaceutical company. There are no winners here. Dreadful and upsetting.

yes its expensive , & i hope the price can & will be brought down, though i think that if itwa sone of theirloved ones or themselves who neede treatingit would be a different matter , its amazing waht we canfind moneyfor though

Royalties ploughed back into research is for commercial CRO’s and its how they operate. Charities should research for the benefit of the drug regrdless of any royalties recieved afterall its not CR UK “plc”. There are plenty of drugs that have dual use but are not researched by drug companies because the drug is off-patent and not profitable, this is were the not for profit organisations come in. Adding a commerical interest by way of patent royalties in a charitable organisation is a bad move and that avenue is for the commercial companies to persue. To charge a patient a royalty (in effect as they charge the manufacturer) for a drug that has been developed from donations just doesnt sit well.

As a contibutor to CR UK funds I am so disappointed that this manufacturer is being so greedy. I trust you will not collaborate with them of future developments. As a tax payer I would be appalled if my taxes were being used to pay for 1 month end of life when there are so many demands on limited health service budget. A correct decision by NICE

Stop battering CR. They’re investing in order to build a stable financial future so they can do more good work for sufferers of this illness. This seems like a smart move to me. Unfortunately as happens some partnerships don’t always work out as planned. I am sure that many business leaders go in with a shared objective but don’t always agree on the way to get there. Hind site is a great thing but we don’t have that. The bottom line is the NHS can’t afford these drugs because their budget has to cover everyone. Many of whom have never contributed through tax in their life. It would be interesting to see NICE’s production cost breakdown that results in the price of 3k.

Would someone kindly explain why this is called “an end of life” drug. Why can’t it be used in early detection of prostate cancer? Do you mean that all the charitable money has gone on a drug that only prolongs life for two or three months? I am amazed if this is true. Please someone explain !

I have two comments, the first being a question about availability, Is the drug available to the highest bidder? then shame on the drug company for proffiteering from essentially charitable ventures. The second is that perhaps CR UK should get directly involved in the drug manufacture in a truly not-for-profit operation.

I disagree with Dave. I don’t think it’s a dangerous path to take if the royalties received are ploughed back in to research.

We need CR UK to come clean and say how much of the £3000 per month they will get back as royalties. This is a dangerous path for a charity to take as it conflicts their interests. This may be a significant reason for the high cost or support for the drug. Nice play a vital role, and rejecting drugs is part of this. Its the only way to get more effective cheaper drugs being developed if the more expensive less effective ones are rejected.

£3000 per month seems an enormous amount for tablets.

I accept the CR UK needs to have some return for their, and our, involvement but is this on every sale or was a lump sum paid that has to be recouped by the drug company?

Hopefully all concerned will be able to compromise to licence this drug to help the men with this dreadful disease.

For me the issue here is the fact that a considerable amount of hard charitable fundraising was done, in great hope and faith, to assist in the development of this drug by CR UK only for it to be blocked by both corporate fiancial pressures and one presumes the needs by CR UK to raise more funding. Could someone from CR UK not have twigged that in these difficult fiancial times,that Governements would not be likely to pay such a large amount for what is an effective but ostensibly still and end of life drug? Why the need to set the price so high, after all some of the research costs were born by us, the giving public so there isnt the need to recoup the years of reseach and development costs by the manufacturer? What else do you have in the pipeline CR UK which is potentially going to be hijacked by your collaberative ventures with the corporate drugs companies and priced out of the market? Do we fund raisers need to be wary? We have loved ones we care for, we enturst you to help to end their suffering and are desparate to do something positive. Need not greed is our passion!

Am I in the minority when I see that people can’t have access to life enhancing drugs yet bankers employed by the British public can get away with obscene bonuses for doing nothing and I mean nothing. It really isn’t rocket science to find ways of relieving the public of money (and that’s all they do). The world really has gone mad.