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.......

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, Jekyll – have 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.

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.

wear it pink® - text PINK to 81400 and donate £2*

The last Friday in October is the day for our national fundraising campaign to raise money for breast cancer research. Thousands of people all across the UK will be wearing something pink and donating at least £2 to beat breast cancer.

Yes it does seem frivolous and it is a bit of fun but doesn’t take away from the seriousness of the disease or the urgency of the research it will fund. If it helps us raise close to a third of our income – that isn’t frivolous.

Many of our corporate supporters have told us how it helps team building and gives a purpose to a dress down day as well has being incredibly easy to do. We are no different. Everyone is wearing something pink today. In true British tradition, the men are as likely to go down the pink tutu and angel wings route and one brave soul is wearing a sleeveless pink shift to go with his pink wig and six inch pink platforms (all of which are alarmingly fetching) – but the beard grown in defence rather gives the game away. We will all be contributing our £2 of course.

October is our busiest month of the year and although today is no less busy this bit of light heartedness has relaxed everyone. Happily I wear a lot of pink anyway so a pink shirt and pink jacket were just waiting to be worn although my pink clogs are probably not normal business wear.

At 11 o’clock is the finale of the October bake-off where every Friday different teams are bringing in cakes they have made and this has revealed some very talented bakers. Then there is a raffle and also a jigsaw which you win if you pick out the numbered piece – fitting as of course our logo is a puzzle piece and our aim is to put in the missing pieces of the puzzle that is breast cancer.

Frivolous - yes; great atmosphere in the office – yes; forgetting the reason why we are doing this – no; doing something about it – of course!

*If you text PINK to 81400 you will be donating £2 to breast cancer research – and it will cost you £2 in addition to your normal network charge for a text message. Go on – you know you want to.
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A mega mega-raid – update

When all the cash was counted past midnight on Friday – we raised a record £50,617.82. Volunteers came and went from early in the morning to support the team until the last penny was counted – a mammoth effort. I guiltily admit that I wimped out just after 7.00 – so well done to everyone.

Mega-Raid and mini-rant

Today is one of my favourite days of the year when I down normal tools and become a volunteer. It is our annual mega-raid where Raggies (students!) descend on London and collect for us in a number of central stations to support Breast Cancer Awareness Month and next week’s wear it pink. They collect the money and we support them which means that almost every member of staff is involved because they want to know how much each team has collected at the end of the day.

Our Community team has the logistics of this down to a fine art. One staff team comes equipped with back packs and travels all over central London collecting cash and bringing it back to base. The other team takes over our main meeting room and counts and bags the money. That’s the best bit and I elbow my way in to make sure that I get to operate one of the cash counting machines. The money is then banked by the third team.

As I write this during the afternoon we have already passed the £25,000 total and we will work until all the money has been counted and taken away.

It is also an opportunity for me to talk to some of our volunteers and members of staff that I don’t normally spend much time with and also to forget about the nightmare that is the Royal Mail strike. We were savaged by this a couple of years ago and here we go again – just at the time when we need the mail the most. We have volunteers all over the country who are going to great lengths to raise money for us – we raise over a third of our income this month – and they can’t get the materials they need and are frustrated, as are we. We have had to resort to much more expensive ways of sending things which isn’t how we should be spending our money.

It isn’t just business that is affected by this – charities are as well. We have staff who work nights and weekends without overtime. We are incredibly grateful for all our supporters, volunteers and staff at this time of year. As much as strikes like this are complex issues, the inadvertent impact for organisations like ours is less funds, and in our case that’s less money for life saving research.

To our supporters, I say please bear with us through this period if your fundraising materials haven’t arrived and we all hope the strike is resolved as soon as possible.

Unknown unknowns...

They laughed at Donald Rumsfeld when he came out with his quote - “There are known knowns. There are things we know that we know. There are known unknowns. That is to say, there are things that we now know we don’t know. But there are also unknown unknowns. These are things we do not know we don’t know.”

I am not a fan of his for a number of reasons but this was wiser that we gave credit for at the time. I was reminded of it by the Annual Report of the Chief Scientist of the Food Standards Agency (FSA) who quotes it in relation to food safety. The FSA was set up in the wake of the BSE crisis to restore consumer trust in the safety of the UK food supply. BSE was an unknown unknown. Until the 1980s we didn’t know about it and also didn’t know that we needed to know about it.

Organisations like the FSA and charities like ours involved in medical research do what is called “horizon scanning”. Is there anything out there which could be a risk but which we haven’t thought of yet? In breast cancer we are identifying risk factors which no one knew were risk factors – what we do about them is another matter – but “knowing” takes us a step closer to beating breast cancer.

This also came to mind as a colleague is pregnant. When I had my children some time ago there was little advice on diet. What we “knew” then was based on very little evidence, my suspicion is that it may have swung too far over the other way – but that’s my personal opinion and not an informed one.

I was told that spina bifida was caused by potato blight (it isn’t, we now know that you can reduce the incidence by taking folic acid) so avoided potatoes for the pregnancy. I was also told to eat liver at least once a week (no – no – too much vitamin A) and didn’t drink because it made me feel nauseous (as did coffee and tea) rather than because it wasn’t good for the baby. Shellfish, soft cheese, uncooked eggs – none of these were considered a problem. On the other hand we accepted a higher rate of miscarriage and also, if you couldn’t become pregnant it was a misfortune but there was nothing that could be done.

I wonder what unknown unknowns are still out there lurking.......

Read Andrew Wadge, Chief Scientist FSA, blog