to think 90000 is a small price to pay to increase people with cancer lifes

[suziepra]

I can't believe the NHS know a drug is effective but refuse to pay it! I don't care how much it costs, print the money and let people live for as long as possible!

Good background info here.

It must be a horrible job having to make these decisions.

There are good, but expensive (c.£15k a year for the rest of your life really), drugs available for my condition. However, my current symptoms and the radiographic evidence available mean I don't (yet) meet the NICE guidelines for them. Instead I get pain killers and physio. They have to make a judgement call somewhere (and it is very much an evidence-based judgement call). They have to do it for everything.

If I were American, I'd get the expensive drugs. But then I'd have much, much higher insurance payments to make (and co-pays) than I do with NI/the NHS largely because most companies would refuse to insure me. And then I'd be moaning about the, not minor, side effects of the treatment.

£90k each for the 50 000 sufferers of breast cancer would cost about £4.5bn. The NHS spends £4.3bn on obesity related disorders, £5bn on diseases directly caused by smoking. Of course not all patients diagnosed with breast cancer would need the drug, but this is the magnitude of the issue.

I am not sure which drug is being referred to here but I am aware of one drug which is difficult to obtain on the NHS but is standard treatment privately. When they say that it extends life by 6 months it is often more and for many people in the drug they are not ill on it. It allows them to live and to have more time with their families. For many it allows them to work, to be around for a child's GCSE results, to have precious holidays and to live life. Unless you are in that position you can't possibly imagine the small sense of hope that these drugs give and the extra life, often time where their disease stays stable and they can live a normal life. I do absolutely believe it should be available. One of the many reasons we have private health care is so that if anyone in our family gets really ill we have a wider choice of treatments

YANBU.
So how do we pay for these new treatments, and the cost of conditions like dementia, which is a ticking time bomb for our generation?
Here's my thoughts.

1. Charge all in patients for bed and food. All ops, therapies, drugs free of charge. Would have added effect that food and cleanliness might improve too.
2. Charge for GP appointments. But abolish prescription charge. Would have added effect of ensuring people who really need an appointment get one. There are a lot of "do not attends" and people who don't need a doctor but are just going for a chat...
3. Tie medical students to having to work in UK and NHS only for 10 years. We're paying for students who decide to drop it after a few years.
4. Put NHS on 24/7 footing. At first it will be expensive, but once the system is up and running it'll be a more cost effective than the current system.
5. Ban ALL NHS elective plastic surgery.
6. Ban ALL NHS funded fertility treatment.

Put the funds from 1,2,5, and 6 into paying for new drugs.

Forgot this...

1. Charge all patients who come into A&E for treatment needed as a result of drugs and alcohol abuse.

Hotel costs- all patients to contribute towards food and linen costs. They would be paying for this at home even if on pension/benefits. This should also improve the food (or at least put the lie to the constant cry of "there is no money for X". Nominal cost for elderly, benefits recipients, etc.

There is actually plenty of elective surgery which is already virtually impossible to get on the NHS. Try getting a vasectomy reversal, tattoo removal or nose/boob job and you will wait forever (despite what the DM says). I would prefer an open and honest system that says "We will never fund x, y and z" and to include all of the above plus IVF. The NHS should also make more effort to collect money from health tourists (and my OH has treated plenty with expensive chemo). Some treatments could be means tested e.g. Piles, ingrown toenails, cataracts. Demand for private provision for these should also drive price competition.

Don't want to derail the thread with side issues but there are actually plenty of areas where the health service could save money and even more examples of eye-watering waste. Personally, I am not comfortable with the idea that the state gets to decide what drugs I may access when I am sick, which is why (like a PP) we maintain private healthcare policies.

This is a hard one. NICE are having to try their best to balance the books. As an breast cancer sufferer I sometimes feel that this condition gets great press and is always considered to be high up the media priorities. We have to balance it out with the quote that it extends life by six months and sadly isn't a cure.

However having listened to the medical rep on breakfast TV, I can't help agreeing with the 'cat n mouse' comment. NICE want a reduction of 60% on the price?! As a businesswoman, can you imagine what would happen if all my other customers found out one had got that kind of reduction! Thee must be a compromise somewhere to be made but I'm quite sure Sweden didn't just say "yeah we'll pay whatever you ask without negotiation".

Did the manufacturer inflate the price or is NICE being unreasonable? Who knows!

"I sometimes feel that this condition gets great press and is always considered to be high up the media priorities."

It does get a lot of media attention. There is a very aggressive childhood cancer called Neuroblastoma and until recently, parents fundraised to the tune of a half a million pounds to ensure their child got a treatment that raised the survival rate by approx 20%. Many of these stories got media attention but not on this level.

The scale of this problem is enormous; I'm not sure your average Joe realises this.

The price that was being discussed between Roche and NICE will be considerably discounted from the 90k list price. Most expensive treatments like this one are discounted in deals between the manufacturer and the DoH that are undisclosed. The issue here is that the 2 parties can't agree on a price, so NICE have said no. In future we can expect to see more and more new medicines that are available elsewhere in the world not funded by the NHS. There simply isn't the money to pay for them

often die sick, bald, septic, swollen and weak this is how my mother died but during her 5 year treatment she had 2.5 very stable years on a drug available in Belgium where my parents lived. This enabled her to travel, meet her 3 grandchildren, and just enjoy her life for longer. She loved life and died at 63 .

The 2.5 stable years were due to a drug in pill form that had much less of the standard chemotherapy side effects which really are horrible. Hopefully there will soon come a time when the standard intravenous chemotherapy is completely replaced by gentler, more targeted and effective treatment.

The money needed to fund better treatment of all illnesses (not just cancer, my sister for example, is waiting for a particular treatment for her hepatitis C to become free on the NHS if it ever does) is probably a drop in the ocean compared to the figures involved in the buying and selling of weapons.

There are lots of things the NHS waste money on that could fund this drug, likewise there are many unnecessary benefits that could be cut by the government to pay for new drugs too. DC needs to get a tighter grip and start making some unpopular decisions to put an end to the wasted money once and for all.

its not a small price.

And the suggestion of cutting IVF funding to pay for it is laughable and selfish. fund 6 months of one life and ruin other peoples lives? No.

What do the NHS waste money on Daisy?

I think we need to encourage a more open and honest debate about the meaning of life and death. We are all going to die. We need to focus more on what a 'good death' means.

When I got cancer I was advised by someone senior at work not to tell people because 'they will think you are going to die' - as if they were dodging a bullet that had struck me? We are all going to die. some of us will have longer, happier lives than others but death will come to us all.

One of the saddest things about my mum's death was seeing my dad getting panicked and angry about why not more was being done to 'help' her or 'save' her and to a large extent the doctors seemed to be going along with this by proposing a very invasive biopsy that could have left her vulnerable to infection and for what? We already knew the cancer was in her liver and lungs; this was not operable, it was not curable. The best she could have got was a few months extension via chemo.

I think my mum and dad would have had a happier few months if they had been able to consider all the options without this apparent presumption that it is 'life' that is so important and which must be pursued at all cost.

dozie - my local health centre is running an awareness campaign into amount of money wasted on prescriptions that aren't used - think the cost is 90 million? It is encouraging us all only to get prescriptions we need. I think there is a problem when you are spending someone else's money; you can be less careful.

But a very irritating side effect of this worthwhile campaign is that I am only 'allowed' a month's worth of tamoxifen in one go, even though the protocol says I will take it for five years...

Notally - so if I decide that my life is "ruined" because I don't have a Mercedes 280 SL then the NHS should buy me one? Great!

Infertility is not a disease. Cancer is.

Ironically, cancer left me needing IVF to conceive. Do I think the NHS should pay for that? Hell no!

Dozie, too many managers rather than nurses and doctors. Some doctors don't crack down on issuing prescriptions that can be bought over the counter. Giving people breast implants (not following cancer removal), IVF, self inflicted injuries/diseases. There are a lot of things that are non essential that could be privatised and some where a contribution should be made due to the lack of care by the person themselves.

Good grief.

I understand why this suggestion isn't possible or practical.

But a bit of respect might be in order, just the same?

7. Charge all patients who come into A&E for treatment needed as a result of drugs and alcohol abuse

Some of your ideas are good, but this is absolutely stupid. People with serious drug and alcohol problems are the least able to pay in general, being from the poorest/most marginalized groups in society. If they are not treated or offered anything (which most are not, just patched up), they go back out onto the streets where they cost a lot of money, police-time, ambulances out for people lying in the road, additional hospital visits, social services time for families, hostel/homeless shelters.

How are you going to charge a homeless person who is a drug abuser for their treatment? Take them through the courts?

They won't all just conveniently die quickly you know with the first trip to A and E.

There are many things you could do to improve outcomes for drug and alcohol abusers, and many which are pretty tough (e.g. no addiction treatment which is expensive unless they engage with services) but charging them for A and E visits has to rank as pretty ill-thought through.

This is what happens..... I spend a lot if time fundraising for 'cancer research'.... Race for life etc, I'm sure most of us donate

Then the research provides cures/drugs and it's unaffordable anyway!

"Infertility is not a disease. Cancer is."

It is often a result of a disease though.

In my experience many drug/alcohol addicts rely on state benefits. Making them pay for treatment is likely to fail and even if it worked, there'd be a huge administrative cost of shifting public money around. I'd also venture to suggest that the "self inflicted - you pay for it" approach is pretty naive. It would likely penalise people with mental health problems. You should also include pregnancy and child birth if you apply the same logic.

I'm very glad this is not my problem to fix. There will never be enough resources to meet demand so difficult budget decisions have to be made. I don't want to pay more tax.

I agree with the poster who said it's not a small price, it's a big price. And that's just for one drug.

That doesn't mean we shouldn't pay it of course, but let's at least have a honest discussion about priorities. We can't/don't have anything like an adequate service for people suffering from mental illness, our care of the elderly is shocking (and at times one short step away from euthanasia), lots of people die due to inadequate care for diabetes, from lack of organs to transplant etc etc

Of course, if I had cancer I'd want these drugs to be available. But if I had a breakdown, or heart disease, or early stage dementia I'd want something different.

We have a limited sum of money.

It is best spent, imo, by trying to cure or improve quality of life. After my friend, my aunt, both of my SILs and my FIL died of cancer (different types) they suffered at the end. It wasn't the dying dignity in films or on TV. It was horrible. Prolonging life means nothing if the people themselves are in so much pain they want to die...and I could see my friend and FIL at the very least wanted to, when they could still talk.

There is so much which can endanger life...mental illness (suicide, self harm, risks for drug and alcohol abuse later in life, risks for other addictions which can lead to earlier death- I say this with a brother who has schizophrenia), heck, diabetes, a lot of rare diseases which are terminal, the different types of dementia, strokes.... The NHS can't afford to do everything and it is sad and horrible, but it's true.