Page last updated at 17:49 GMT, Thursday, 19 November 2009

NICE decision on liver cancer drug Nexavar condemned

Ron Illingworth and his daughter Daniela Hearn at her wedding
Ron Illingworth died of liver cancer on 18 June 2007

Thousands of people with liver cancer have been told a life-extending drug is too expensive to be provided on the NHS, provoking outrage among both patients and cancer charities.

The National Institute for Health and Clinical Excellence (NICE) has ruled the cost of Nexavar - at about £3,000 a month - is "simply too high" for use in England, Wales and Northern Ireland.

Andrew Dillon, chief executive of NICE, said: "The price being asked by [the manufacturer] Bayer is simply too high to justify using NHS money which could be spent on better value cancer treatments."

But Macmillan Cancer Support said the decision was "a scandal", while patients and their relatives have said it is impossible to put a price on the extra months of life given by the drug. Here are some reactions to the decision.

LISA ILLINGWORTH, FATHER DIED OF LIVER CANCER

"My amazing dad passed away two years ago at the age of 59 from secondary liver cancer after it spread from his bowel. He was also denied Nexavar through the NHS.

"It is soul-destroying after contributing to the NHS all your life that the one time you need it to give you more precious time with your family, the system fails you.

"Living each day in the knowledge that you only have a little time left is so so painful, but the feeling of hopelessness is devastating when you are told the price is 'simply too high'.

It gives you time to tie up loose ends and just time to be with each other - I can't emphasise how important that is, you can't put a price on that

"You get really angry because it's like someone saying your life isn't worth it, it's not worth you having a few more months with your family, it's ridiculous.

"You just sit there with your dad and days are going by and no-one helps. With cancer, every day, every second counts, and you feel really powerless.

"When you've got only a few months, it means the world to you. It's just being able to spend time with the people you love, it counts so much.

"There was never anything left unsaid with my dad, so it's not that. But it helps the person who's ill come to terms with what's happening. It gives you time to tie up loose ends and just time to be with each other. I can't emphasise how important that is, you can't put a price on that."

MICHAEL WEBBER, CANCER PATIENT DENIED NEXAVAR

"I have liver cancer. Having paid into the system all my life I find it is depressing that the government refuses to fund a drug that could eventually extend my life, and the lives others in a similar position to me.

"I just hope that the people making these decisions are never in the position I am in now. How can other countries in the world fund this drug and we can't? It appears to me that we can fund many useless projects but when it comes down to life or death, in this particular instance we fall short.

"I have to add I am receiving excellent medical treatment from a dedicated hospital staff who are doing everything they can to help me, so on that score I have no complaint whatsoever.

"I didn't actually know Nexavar was available until I heard the news reports this morning. It's very difficult as people in my situation want access to anything that may prolong life.

It might not sound much to some people but even prolonging life for six months means an awful lot to a family

"I was diagnosed with bowel cancer in October 2008 and it has now spread to my lungs and my liver. The hospital medical team have helped keep me alive for over a year and have been fantastic. I appreciate the cost of the new drug but I've contributed to the system all of my life, and where life and death is concerned cost shouldn't be a factor.

"I've been on chemo for about nine months of the last year. My condition is fairly stable, some scans are good and some not.

"This drug is used in the last stages of liver cancer so it might not be appropriate for me at the moment, but I will need it at some point so I would like to know I could use it if and when. It might not sound much to some people but even prolonging life for six months means an awful lot to a family.

"I understand there are other drugs that are just as expensive used for treating other types of cancer, so I can't understand why there is an exclusion on cost for liver cancer.

"I used to have a drug to help my blood recover from chemo and that's no longer available. It's hard to understand why when so much money is available for other things. The ability of oncologists to help people like me is hampered by the inability to prescribe drugs."

PATRICK DAVIES, DRUG PAID FOR BY HEALTH INSURANCE

"Because of Bupa, I am able to have it, but that runs out at the end of January. The medical insurance only lasts a year. I would hope to have destroyed the tumour by then.

"[But] If I hadn't have had the drug, I would still have fought it and I still would have won.

"There's lots of people with different situations, if the tumour is small, they won't put you on to a drug, because they'll look at a transplant.

Patrick Davies
They've got a pretty hard job to do. I've got a lot of sympathy for them, we've all got to make budgeting decisions

"Once a transplant can't happen, that's when they consider the drug - you're talking about people in a very serious condition. That's why they're talking about only extending the life for six months.

"I just think it's a case of really, we as human beings in a society, should re-evaluate our priorities.

"Other countries have access to drugs that could make a difference because they have a different set of priorities.

"They've [NICE] got a pretty hard job to do. I've got a lot of sympathy for them - we've all got to make budgeting decisions.

"The chemical companies themselves have just as much responsibility as NICE, if they want to sell their product at a price we can't afford. Why are they putting it out at that price? I'm pretty sure it's because they want to make profit for their shareholders."



Print Sponsor


SEE ALSO
Liver cancer drug 'too expensive'
19 Nov 09 |  Health
Kidney drugs no longer available
24 Sep 09 |  Wales
Cancer drug victory in the offing
14 Jan 09 |  Health
'It isn't easy to say no'
23 Nov 08 |  Health
Cancer drug access varies widely
24 Sep 08 |  Health
Cancer patient wins drug battle
10 Sep 08 |  Sussex
Fears over pricey NHS therapies
20 May 07 |  Health
How the NHS places a value on life
21 Aug 06 |  Health

RELATED INTERNET LINKS
The BBC is not responsible for the content of external internet sites


FEATURES, VIEWS, ANALYSIS
Has China's housing bubble burst?
How the world's oldest clove tree defied an empire
Why Royal Ballet principal Sergei Polunin quit

BBC iD

Sign in

BBC navigation

Copyright © 2017 BBC. The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.

Americas Africa Europe Middle East South Asia Asia Pacific