Causes hard feeling!!

Causes hard feeling!!

Causes hard feeling!! I read recently on aol news site that because herceptin is being given to BC women many other cancer sufferers are being denied the best treatment for them as there is no money left.

Anyone read this?

To me its awful the media are inciting cancer patients to feel angry with each other.

the ‘real’ blame is with the NHS’s lack of funding for the best drugs to treat anyones cancer.

Ruthx

Ruth it all depends because NHS funding is not a botomless purse- the public pays for it.
Herceptin cost is well spent on younger ca pts as they have families to bring up and are themselves future taxpayers if the NHS can get them fit again.
I’m 74 and was shocked when told I’d be on Herceptin if I turned out to be HER+. As I’m already a drain on the state it’s wasteful.
Everyone tells me my view is ageist- but a girl in her thirties has only had half her life while old people like me have already lived a lifetime.
So it’s nice if there’s enough in the kitty for everyone but if there isn’t treat the young first. dilly

Heart issues as well I think that age does effect cost effectiveness because it is all a matter of the number of quality adjusted life years. Also, herceptin carries heart risks that increase with age. Where I had my herceptin I don’t think that anyone else getting it was over sixty. But where do you draw the line? In some eastern European countries they restrict it to women diagnosed under the age of 40.

On the other hand, one day when I was at the cancer hospital a 98 year old woman with secondaries came in to say that she would not be undergoing chemo. She didn’t have breast cancer, but I don’t know what it was. Anyway, the staff were all shocked, but in a way I thought that she was more realistic than her doctor or the staff, who seemed to be appalled with her decision.

Herceptin is costly and more efficient uses should be found, but I wonder who will bite the bullet and pay for trials of herceptin-based chemo without the long tail of herceptin, a treatment that has worked really well in small trials.

In the long term, some of the cost of herceptin may be money well spent, since care for secondary cancer patients is expensive, but that is in the long term.

I think the doctors should be speaking together for more money for the NHS rather than attacking patients who need one expensive drug.

What do you mean a drain on the state? Dilly,
I often read your messages of encouragement for other people
posting here and am really shocked to see you write that you are a drain of the state. I’m sure at the age of 74 you have seen and endured lots of hardships that younger people only read about, you went through the war years , put in valuable time in the work place and the home, You deserve the best treatment that your body can tolerate. Where do you draw the line, do we say ,well this one has no children so no loss,yes, she may be 50 but no dependents, lets not worry about her. I know it is not a bottomless purse, but we have to believe that we are worth it ,and we have put in time so now it’s payback time. If you don’t believe this then what hope that others will ? Do the drug companies need to make such huge profits?
Once drugs are approved by nice and are in widespread use surely the cost comes down with the demand just like other market forces.
Dr are not setting us against each other but just pointing out the
facts. It is the drug companies that need to be challenged ( I think )
Well I hope everyone gets the drugs they need young or old.
We all have friends and family who need us around.

see ya,
Kieran

Kieran it’s not what we deserve but what is affordable- and 74 years is a lifetime where 30+ is not. It is a foolish society which looks after its old before its young.
This is even more true in an ageing society where less young are supporting the ever increasing old.
As for the drug companies- the pressure on them is building up from the US insurance companies and organisations such as NICE which will dig their toes in as prices become ever more astronomical eg Avastin.
Mostly it is v expensive to make and launch a new drug. But Abraxane is an interesting example of creaming off eg Taxol. The original was inexpensive and effective, but hard on patients. The chap who dreamed up a coating for it - reducing the side effects considerably jacked the price up to the skies and has done unbelievably well out of it.
Market forces and not ethics determine cost. dilly

Cost is only half of cost effectiveness One thing that I think sometimes gets lost is that cost is only half of cost effectiveness, the other side is effectiveness and the pharmaceuticals industry hasn’t really been delivering that. The maddening thing about herceptin is that two small trials indicate that herceptin given only during chemo is at least as effective as herceptin during chemo followed by a year of herceptin and causes fewer heart problems. In the smaller of the two trials, stage III women had a disease free survival rate of 83% at three years follow up, far better than HERA. Unfortunately, the oncologists are waiting until the 2-year results of the HERA trial come out to set up the necessary trial to look into this, even though there is no way that the NHS can afford two years of herceptin. Meanwhile, the trials of lapatinib, which was seen as potential competition for herceptin, are following the same formula of using a year of lapatinib after chemo, even though it is possible that lapatinib-based chemo would be enough. Oh, and they are also looking into combining herceptin and lapatinib to treat primary cancer. The expense is mind boggling.

Dilly, you mentioned Abraxane, which in the US, where is has been approved, costs 25 times more than taxol, which was expensive to start with. I think that abraxane is a real solution to problems patients have with taxanes, but only a partial one. One problem with taxanes is that patients may suffer from a potentially life-threatening severe allergic reaction to the solvent used in taxol/taxotere, so they have to take loads of steroids to prevent this from happening, which causes all sorts of problems. Abraxane solves the steroid problem by getting rid of the solvent. The second problem with taxanes is that they cause long-lasting neuropathy (achey toes and fingers). Abraxane doesn’t help with this problem at all. In fact, because the amount of taxane delivered is higher, the problem seems actually to be worse. I have noticed that when abraxane came out the patients with her2-positive secondaries on her2support were all eager to try it, but that seems to have subsided now that the neuropathy problem has become widely known.

Sorry for the rambling nature of this, but I have loads of work:

You mention that NICE and the NHS might challenge the drug cos, but this seems unlucky. An acquaintance in the NHS says that the NHS already sets an allowed profit on patent medicines and play hard ball with the generic drug companies. The reason they are unwilling to drive patent medicine prices to the floor is that they want the UK to remain competitive in pharmaceuticals.

And, of course, there is patient pressure, a very controversial matter. Patients are understandably inflexible when it comes to wanting drugs and drugs companies can exploit this. The columnist Lisa Jardine even claimed that a company offered to provide her herceptin if she publicised the cause, but her oncologist felt that the drug was not suitable for her. The sad thing is that if you look at what most of these drugs do for secondary cancer patients, the answer is all too often not much. Avastin is not only dear, but it buys patients on average only a few months extra and one trial in primary bowel cancer patients needed to be stopped because of a high rate of death.

There are real limits to how high drugs can go. One of the factors that has made high drugs prices possible is that patients have generally been pretty insensitive to the cost. Avastin, however, is showing the limits to pricing, and not just in Britain. The main market for pharmaceuticals is the US (high demand, unrestricted prices) and secondary cancer patients there are looking at the size of their copayment (the small percentage of the drug price they pay) and deciding that avastin doesn’t provide enough bang for the buck.

hello all

i hope you dont mind my tuppence worth as this is an interesting thread,

I dont believe that the fault lies entirely on postcodes or ages that go against cancer patients receiving any form of treatment. it is purely down to bad management of funds all around - up and down the country.

the NHS wastes a lot of money on managment wages, consultants are sometimes paid more than they deserve - even so far as still paying out wages to staff who are ‘suspended’. there are more management positions within the NHS than any other corporate company i know of. the costs are not spread out evenly or properly in order for the patient to benefit from treatment of any kind.

Sadly, cancer costs the government money, not all of us are entitled to ‘free prescriptions’ or vital treatment that is currently on the market.

I firmly believe - and i am going out on a limb here, tho do not intend to upset anyone - that if there was a cure for cancer, many drug companies would go out of business. it is a lucrative industry.

However, the press do make a meal out of it, ‘cancer patient refused herceptin’ etc, the general public don’t have a real clue as to facts surrounding such stories. Many patients wont benefit from herceptin – we know this but they don’t! Dilly is right “Market forces and not ethics determine cost “

The government wont stop it because they benefit too, just like with tobacco, alcohol, petrol etc.

I shall not say much more on the subject as it infuriates me so much, and the fact that it is a lottery running to see which patient will benefit from any form of expensive medicine saddens me.

With deep thoughts on this ¦¦¦…

Loadsa luv to all adele xxx

Hello A friend of mine is in her late 70’s, about 5 years ago she discovered a lump in her neck, it was non-hodgkinsons cancer and I have to say she is now fit and well and no one would have known she had had treatment. She has had the best of treatment and the very best drugs- she was a private patient. Would she have got the same treatment at her age under the NHS- I don’t think so.

Age should not come into, neither should the fact whether there are dependents or not. In this country everybody should be treated the same and get the right treatment. We waste so much money in this country on the most stupid of things yet we cannot provide our own people with the care they need, when they need it.

Hazel

hazelmary I’m 74 and at begining of year developed hyperactive skin mets. Plastic surgery removed and grafted about 8"x8" skin- 10 days in hospital with SPLENDID nursing in AWFUL old prefab burns unit. PLUS they had to rent a highly techno pump [attached to graft site] because I’d had RT to site- cost estimated at £1000 [hospital has one which must be kept ready for emergency burns].
I’m always grumping [with good reason] about oncologists but the breast surgeon, plastic surgery dept, ENT dept and breast care nurses are always wonderful to me.
When I said to therm that I’d been afraid that due to my age and incurability I’d be left to stink and rot they were genuinely surprised that I could have thought such a thing.
So at similar age to your friend I had best and expensive treatment.
HOWEVE Avastin, for example, is unbelievably expensive and x2 for br ca as it needs double the dose for colon cancer. These astronomically priced drugs [which may or may not turn out to be be the best as they become more used] are way beyond the public purse for all, but could be afforded for the young who still have a family job to complete.
We should remember the dying Sir Phillip Sydney saying don’t give it to me but give it to him because his need is greater. We old have already had a life- the young have only lived a fraction of theirs.dilly