Friday 20 November 2009

Is my cancer better than your cancer?

Of course not – what rubbish but if you read Karol Sikora’s article in the Daily Mail this morning A Stalinist NHS quango and British cancer victims denied drugs available in Europe you would think that was the case.

I won’t reprise the facts which you can get from his article but in summary NICE has refused to authorise the use of a drug called sorafenib to treat a particular kind of liver cancer. They say that it is too expensive for the extra months of life it can produce. The article explains this but it is worth repeating that “average three months” means that some people will not respond at all and die quite quickly (that happens in all cancers) and some will live for months if not a couple of years. This is unpredictable so they look at the average which is not unreasonable. The point that is made is that only about 700 people a year might benefit from the drug so the overall cost is, in health economic terms, not that high.

So far Karol and I are as one: then he goes off into “my cancer is better than your cancer” world. Several years ago a new breast cancer drug was launched – Herceptin. The results of the trials were startling and there was pressure to persuade government and NICE to fast-track this through. The consequence of this was not only that Herceptin was approved but that NICE changed its processes so that there could be a fast-track for other drugs under certain circumstances. Yes there was a campaign, yes there was a huge amount of press activity and I am sure that influenced government. Isn’t that good? Doesn’t that open the doors and point the way for other diseases to follow?

If we hadn’t had the two week urgent referral target for breast cancer would we now have it for all cancers? Would we have had the amount of media coverage for sorafenib, including families of patients who had been denied it speaking out if breast cancer campaigners hadn’t already shown how successful this could be?

A reality check: breast cancer is the MOST COMMON FORM of cancer. There are 45,500 new cases of breast cancer in women each year (and about 300 men). That is more than the number of men affected by prostate cancer (35,000), the number of men and women affected by bowel cancer (37,000) and lung cancer (39,000). It isn’t more important or a better cause than these cancers – it is more common.

Research has been successful and survival rates are improving but still 12,000 women (and about 90 men) die each year so we have a way to go. Breast cancer isn’t one disease – there are many breast cancers and we are getting more and more targeted treatments. What we really want to be able to do (in all cancers) is accurately predict which patient will respond to which combination of drugs – we are getting better but it is still a blunt tool and many millions would be saved (and unnecessary pain and suffering) by only giving drugs to patients who will respond - Breast Cancer Campaign is supporting this type of research.

There is a serious problem with the rarer cancers and it isn’t the amount of media publicity they get or whether or not drugs go through NICE. It is the amount of research that is done. We only have advances in treatments and understanding of causes/risks because of research and I recognise that because of the large number of people affected by breast cancer it is a fruitful area for research. NICE decisions sometimes make a mockery of research – what is the point of doing the research, which very often is funded by charities, unless the success is shared with patients.

So Karol and I might be not be so far apart until “Championed by a hugely powerful feminist lobby its (breast cancer) high profile is reflected in the large sums given to screening programmes, clinics, drug treatments and publicity campaigns”.

Karol you know better than that, let’s rewrite that in a factual way.

Championed by a huge number of women who suffer from breast cancer and families who have lost mothers, wives, daughters and sisters, breast cancer has a high profile. It is a disease which can be and is screened for. It has been responsible for the development of the multi-disciplinary clinical team to treat the disease more effectively. Through the adoption of successful research there is now a wider range of treatments for the disease and publicity campaigns aim to use every means available to educate women about the risk factors so that they can change their lives to reduce their risk and also the symptoms so that they can be treated early in the disease which will improve their chances of survival.

That sounds a bit dull I suppose – give me facts and dull every time.

P.S. Daily Mail online used a photo of the then Mayor of London, Ken Livingstone (remember him?) publicising our major fundraising event wear it pink for us. Note to Karol Sikora: politicians like posing for pictures with glamorous models because newspapers print them.......

Tuesday 10 November 2009

From a red poppy to a pink ribbon

Sunday started on a sombre note – we always watch the Remembrance Day service from the Cenotaph (on television). In the years when South Africa was out in the cold politically, I used to be frustrated that they could not be included in the service when so many South Africans volunteered, fought and died alongside the British army in WWII. My father was a surgeon on a British hospital ship (the Amra) and was behind the navy for many of the invasions. Number One Husband had cousins in North Africa and in POW camps. It is a time for reflection, gratitude that we never had to do what they did – and of course now a very poignant time to remember the soldiers who are fighting and dying now.

However, the day ended on a truly joyous note, full of wonderful music, inspiring words and a great energy and enthusiasm about what Breast Cancer Campaign is doing and the people who are making it possible at the Pink Ribbon Gala Concert at the Cadogan Hall, with Debbie Wiseman and the Royal Philharmonic Orchestra.

The concert was Debbie’s inspiration and she undertook the huge task of organising the concert and persuading actors and actresses to become involved. She is an award-winning composer of over 200 film and television productions. You may not recognise her face but will remember the music from productions such as Judge John Deed, Tom and Viv, Wilde (with Stephen Fry), Before you go, Jekyllhave a look at Debbie Wiseman’s website.

She created the most amazing programme, interweaving her music with readings from T S Elliot (Tom and Viv) and Oscar Wilde (Wilde) and a reading from Hilaire Belloc against music by Benjamin Britten with other music by Borodin and Tchaikovsky. The readings were by Timothy West, Prunella Scales, Cherie Lunghi and George Layton. All was expertly sewn together by the ‘voice of Classic FM’ – Simon Bates.

There was also the world premiere of a beautiful song sung by Mary Carewe – “Nothing Grows on Gold” music by Debbie and lyrics by Don Black, which will be in their musical Feather Boy next year.

Perhaps the secret of her great success in writing scores for a visual medium is that she can bring together the words, the music and the visual. Images of our supporters and volunteers and of our fundraising floated across the screen behind the orchestra providing a wonderful backdrop for the music and words without intruding.

Number One Husband and I go to lots of classical concerts – probably our favourite hobby - and we have seen great musicians and heard great music. Debbie conducted the Royal Philharmonic Orchestra last night and brought a vigour and enthusiasm beyond the music and words which translated into an energy which was palpable in the audience.

Everyone was smiling as they left – a great tribute.

Thursday 5 November 2009

The banks that like to say no

Last week was wear it pink and this week our supporters are paying in the money they raised. Well – you might hope so. But we have heard from several supporters who have tried to pay in money on the paying-in slip provided to their own banks and have been refused or told to pay extra.

We provide specially coded paying-in slips to supporters so that they can pay the money into any branch of any bank – and we pay a small extra charge for them to do that. Otherwise they would have to find a branch of Barclays – our bank – to pay in the money.

It is tough enough raising the money without then having to struggle to pay it in. So far complaints have come in from supporters trying to pay into Lloyds TSB and Royal Bank of Scotland. Our guys at Barclays are on the case and have written to them but clearly the message isn’t getting across to everyone.

We really do try to make it as easy as possible for people to raise money for us – the effort is significant, the generosity is wonderful, the stories behind why people are doing this are heart-rending and the impact, when translated into research, is life-saving. And then someone at a bank gets in the way.

I really don’t want to turn this blog into a whinge-fest but we seem to be walking through treacle at the moment. First we are savaged by the postal strikes which have left unhappy supporters out there and may well damage our Christmas card sales, and now this.

Hey guys – give us a break. All we are trying to do is raise money to beat breast cancer – that’s challenging enough without having to fight you too.