Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Cost of cancer drugs

JulieWW
Posted by

Dear David, I thought it might be better not to post again in Bessie's thread as it was originally about a quite different subject, and I don't want to look as if I'm muscling in on it! On reflection, quite apart from the precise medical conditions that apply to you, it just could be that your doctor is being affected by the parlous state of cancer drug prescriptions and the NHS. As I said, I know that Sutent is perilously expensive and is not, so far as I know, available yet on the NHS in this country (I think that is so but I'd be delighted for someone to say otherwise!), and there has been a fair amount in the national press about it recently. There was an article recently in the Sunday Times (June l5th) http://www.timesonline.co.uk/tol/life_and_style/health/article4138237.ece entitled: "Banned cancer drugs better than NHS ones" From the article: "One drug for kidney cancer, routinely available through public health systems in most European countries but not to British patients, can reduce the size of tumours in 31% of patients, compared with just 6% of those prescribed the standard NHS drug..... "Research presented at the American Society of Clinical Oncology found that kidney patients taking the new drug Sutent lived six months longer than those prescribed alpha interferon, the NHS treatment. "The failure of the NHS to make more effective drugs available to cancer patients has been condemned as “unethical” by leading doctors. "John Wagstaff, professor of oncology at Swansea University, said: “This has created a very difficult situation for us. Having seen the latest data, I believe it is now pretty unethical to give many patients alpha interferon [rather than Sutent]. We are often forced to prescribe interferon because we do not have access to Sutent [on the NHS], but I am always upfront with the patients. I tell them what I think the most effective treatment is.” "Eight times as many patients in Germany and France receive Sutent as in Britain, according to figures held by Pfizer, the manufacturer. Sutent, which costs about £2,200 a month compared with about £800 for the NHS drug, is one of a number of life-prolonging new drugs at the centre of the co-payments row. "In advanced kidney cancer, when the patient cannot be treated with any other drug, Nexavar, another medicine, can double the period when the disease is held under control. "A trial of Nexavar, comparing the effect of the drug with a placebo, showed it to be so effective that the trial had to be halted early as it was considered unethical not to give it to all the patients in the test. Tumours were prevented from growing for an average of 5.5 months in patients taking Nexavar, against 2.8 months in those taking the placebo. Despite the findings, Nexavar is not routinely funded by the NHS." **** What is even more scandalous is that the rule sent down from the Minister of Health is that if a patient dares to pay for a non-NHS drug themselves, out of their own savings, they will then forfeit ALL their NHS care - which is things like doctor appointments, blood tests, CT scans, any other approved NHS drugs, etc. ie, that 'co-payments' as they are called, where the patient themselves subsidises the NHS, are not allowed. So, on top of the dreadful burden to pay for your own life-extending drug, you have to pay for all the other health care as well ,as if you were a completely private patient! If you keep looking at the Sunday Times articles there is a great deal of coverage on this. There is now so much fuss about this - including by many doctors, who are furious that the government is effectively condemning people to death - that the government says it will 'review' the sitation, and some hospitals are now - at last! - quietly dropping the requiremetn for a patient buying top up drugs to keep going to be kicked off the NHS. What I think galls me most about this is that whilst I can understand the fear in principle that this is 'all very well' for those who CAN afford the private drugs, but that such a 'two-tier' NHS is unfair to those who cannot (though of course lots of people point out that all sorts of other 'private' treatments don't mean you forfeit the NHS cover!), this objection is being made by someone who simply won't personally be likely to be bothered by it! I will, at this point, put my 'crusading' helmet on again - and say that I have just checked the salary for the Minister of Health http://www.parliament.uk/about/how/members/pay_mps.cfm ....if he is a Minister of State, his salary is listed as £101,000 (and if he's a Cabinet Minister, it's £138k). Now, I think if you earn that kind of salary, being a private patient is not going to be much of a problem to you, is it? Unlike for the mass of the people who voted you into that lucrative job.... To me, for ANYONE earning that kind of money to presume to condemn their own voters to an earlier death than medical science can give them by denying them life-extending treatment on the NHS, is absolutely disgraceful. He's not likely to have to walk in our shoes, is he??! Surely, if the government really is concerned about a two-tier NHS penalising those who cannot afford private drugs at all, one 'half way compromise' would be to say that those who CAN afford to pay for their own non-NHS cancer drugs should do so, but for anyone falling beneath that threshold, they should be available free. No one should die of poverty in the UK, one of the richest countries in the world, with money to lavish on anythign from the Olympics to the EU gravy train....especially not when that death sentence is issued by a man earning £100,000. *** As I say, cost/NHS may not at all be the reason your oncologist is prescribing interferon, but I think he should tell you if it is. Julie.

Pennyx2
Posted by
I found your article here fascinating and insightful. Thanks for doing the research. Our very own Tomdog, and his wife ("terrier" as Tomdog says) have been involved in all of this, and you may like to seek out their postings and blogs. I happen to know that one MP's wife went to Harrods and bought a £10,000 dining table as the one provided wasn't to her liking. Wonder whose life was shortened to pay for that one? Not at all suprised to hear of many other Western European countries having significantly more drugs available and better survival rates: this does of course include Scotland and Wales!
Perhaps we could also start asking exactly why these cancer drugs are so expensive: ok, I know they have had years of research and investment BUT exactly how much profit are the drug companies making: respectable or obscene? I did a posting some weeks ago about a drug potentially effective in certain brain tumours, but which a professor said the drugs companies would not fund research because it was out of copyright, as it were, and would therefore not make them enough profit!

xxx Penny
JulieWW
Posted by
Penny - I'll go and search out Tomdog! All the very best to him in this battle no one should have to fight, and especially at such a grievous time.

Ten thousand for a table?! That's Sutent for a good few months of extra life...

Yes, time MPs joined the real world - the world their voters live in.

The drug companies are a tricky issue - I read only today that the average cost of researching, developing and bringing to market (trials and all that) of a drug is around a billion dollars. But yes, how much profit is 'fair' profit? And the NHS certainly shouldn't be a milch-cow for the pharmas, that I know. But to me, while the NHS senior management and ministry politicians continue to waste money on stuff like strategy consultation and now this wretched new 'constitution', it seems that there's a lot of money that could be bettr spent doing what the NHS is supposed to do - ie save lives and improve health (for which you just need docs/nurses, hospitals and kit!). All this wastage must be as frustrating to the docs/medics and the actual admin/support staff as it is to the patients.

Hey ho!

Julie

PS - can anyone tell me how to get into my 'Private Messages' section?! I don't seem to see anywhere how to do it! Many thanks.

Pennyx2
Posted by
If you go to "My profile" (ie yours) then click on "My Stuff", it will expand to give you a list of options. Click on "My Inbox". This will transfer you to the page with your old messages received (you can keep them or delete them, and they can be arranged in folders which I keep meaning to do and haven't got round to!). You can also click on "Compose" and send PMs that way. Hope that helps.

Yes, and I can add the "Choose and Book" intermediary call centre to the list of extraneous and no doubt expensive government introductions. I see no reason why a hospital or a GP cannot contact another hospital direct to request a referral for their patient. The website is impenetrable, and only seems accessible if you acquire a "key" for which you need to have taken 3 forms of ID four weeks in advance to...If you choose to telephone, you are not only inevitably held in a queue (racking up the cost to you), but the people at the cal centre seem unable to make contact with the hospital on your behalf through computer problems. How much is that all costing?
xxxx Penny
JulieWW
Posted by
Yup, IT seems to be another black hole in the NHS funding, doesn't it?

(Not that when it does work well, it does seem to make life easier and faster, and anything that actually saves doctor/nurses/admin staff's time must, I hope, be good, and help take pressure off them.)

I found Tomdog's blog - and recognised him at once from the news coverage.

There was another heartening report in this week's Sunday Times, with the Radcliffe saying it would have "no reason to withold treatment if a patient purchases other drugs from outside the NHS".

Let's hope other hospitals are as pro-patient as the Radcliffe!

Another point struck me - if the NHS will fund Interferon, which costs, according to the original article I quoted, I think £800 a month, but won't fund Sutent which the article again I think said was £2,500 a month, then why can't patients get some kind of 'credit' of £800 from the NHS to put towards the Sutent costs? After all, the NHS would have spent that £800 on you without question, but you're not 'spending it' with them, you're using it to pay for a better drug.

For lots of families, having that 'extra £800' must surely make a huge difference when it comes to paying for non-NHS drugs.

And someone on the NHS funding thread on this site suggested, very reasonably, that if you don't claim your 'fair share' from the NHS by way of treatment (ie, because you've been kicked out for daring to try and stay allive longer than Alan Johnson is prepared to let you), you should be able to get a refund on your 'NHS contribution'!!!!!

Oh, it's a wretched situation, but one thing is for sure - the more pressure, the more publicity, the more legal challenges, then the better the outlook for getting British taxpayers their best chance of life. We just can't let the government off the hook

All the best to all of us - Julie.