Now that the flurry of activity surrounding the publication in the British Medical Journal about breast cancer mortality statistics has calmed down, we need to look behind the headlines – “UK breast cancer rates fall faster,” “Breast cancer death rates dive,” and “Not so far behind Europe after all”.
It is all about the context. The research is good and the conclusions are thoughtful, but then the newspapers need a headline and a few punchy paragraphs and that is where the context disappears. In a nutshell, of course it is good news that mortality rates are continuing to fall and they have fallen the most in the UK. It isn’t such good news that our mortality wasn’t that great to start with.
The facts are that breast cancers in the UK are diagnosed earlier and treated more effectively than they were two decades ago and mortality has fallen.
What complicates things is that the quality of data relating to cause of death from the various countries in this study can be variable. As the study says data from, for example, Greece, Poland and Portugal should be considered with caution. Out of 28 countries (counting the devolved countries of the UK as one) there are the three already mentioned where the quality of data is “low” and 14 where it is “medium” (including France, Sweden and Germany) and only 11, including the UK and Ireland, where the quality is “high”.
The researchers have adjusted for all this so we can be confident that the trend is down but comparisons are not always reliable.
To go back to my starting point – we are better but what do we need to be best? Let’s be frank – best would be never to have to deal with breast cancer at all; next best would be cures for all the types of breast cancers – you are treated and then don’t have to think about it again. Is this realistic in the near future? Best for me would be early diagnosis and then effective treatments (without the worst side-effects) which can keep the disease at bay.
If that doesn’t sound very exciting – there are diseases we can’t cure but can treat effectively such as asthma as David Beckham, Ian Botham, Paula Radcliffe and Alice Cooper all know.
Monday, 16 August 2010
Thursday, 12 August 2010
An issue of fraud
A headline with the words “charities” and “fraud” in is always unnerving. Reports over the weekend on the conviction of a gang of fraudsters who planned to steal millions of pounds from a wide range of charities such as Children in Need, Comic Relief, Banardos and the Lottery were concerning.
There are various types of fraud – the sorts that beset any organisation. However this case highlights a particular issue. The further the donor is away from the beneficiary the more difficult it is to control. Perhaps if donors (and the media) focused less on “administrative expenses” and more on controls this might be less likely.
All the organisations involved were donating money to charities which purported to be supporting work mainly in developing countries but were fraudulent and had been set up for that purpose. The sums of money for each grant were (relatively) small and the work was being done in areas which it would be expensive or even dangerous to visit.
I know that eyes glaze over when we talk about our processes but this highlights how important they are. The financial controls we have regarding the processing of donations and management of our funds are very tight, as you would expect, but the controls we exercise on the spending of the money on research are equally as tight.
The hurdles our researchers have to jump are high and many: the research first has to pass through a review process with external reviewers; then through our Scientific Advisory Board; then through the Trustee Board at which point a lucky (or should I say a very bright) few are awarded a grant. The next set of controls is put into place with a contract. Scientists have to report to us regularly on progress. We bring all our new grantees to a meeting and brief them on what is expected and how hard it is to raise the money. They need to relate the grant that they have received to someone running a marathon or a school having a wear it pink day. Money is not anonymous.
There are various types of fraud – the sorts that beset any organisation. However this case highlights a particular issue. The further the donor is away from the beneficiary the more difficult it is to control. Perhaps if donors (and the media) focused less on “administrative expenses” and more on controls this might be less likely.
All the organisations involved were donating money to charities which purported to be supporting work mainly in developing countries but were fraudulent and had been set up for that purpose. The sums of money for each grant were (relatively) small and the work was being done in areas which it would be expensive or even dangerous to visit.
I know that eyes glaze over when we talk about our processes but this highlights how important they are. The financial controls we have regarding the processing of donations and management of our funds are very tight, as you would expect, but the controls we exercise on the spending of the money on research are equally as tight.
The hurdles our researchers have to jump are high and many: the research first has to pass through a review process with external reviewers; then through our Scientific Advisory Board; then through the Trustee Board at which point a lucky (or should I say a very bright) few are awarded a grant. The next set of controls is put into place with a contract. Scientists have to report to us regularly on progress. We bring all our new grantees to a meeting and brief them on what is expected and how hard it is to raise the money. They need to relate the grant that they have received to someone running a marathon or a school having a wear it pink day. Money is not anonymous.
Tuesday, 10 August 2010
Pointless headline
In addition to the stream of consultations from Government trawling across the media – there has been no let up in stories on breast cancer – none of them particularly new or revealing. Yesterday morning was no exception. “UK women four times more likely to get breast cancer than Africans” said the Guardian – others narrowed this down to “East Africa”. I am sure that the statistics, such as they are, are probably OK but I refer you to a blog I wrote earlier about the issues facing “Africa” now.
All women in the UK have access to health care. The medical care is there providing they seek it. The earlier they seek it the better their chances for survival. This does not apply to “Africa”. Africa is a continent not a country; there are huge differences in the provision of healthcare in each of the countries and each of the regions in each country and many millions of women have little or no access to healthcare for diagnosis let alone treatment and live and die uncounted.
One of our researchers put this slide together a few years ago and it very neatly encapsulates the risk factors at play. You can work out which are the ones that you have control over and which are outside your control. It may seem irreverent about such a serious subject but a spoonful of sugar makes the medicine go down – but only one spoon please.
All women in the UK have access to health care. The medical care is there providing they seek it. The earlier they seek it the better their chances for survival. This does not apply to “Africa”. Africa is a continent not a country; there are huge differences in the provision of healthcare in each of the countries and each of the regions in each country and many millions of women have little or no access to healthcare for diagnosis let alone treatment and live and die uncounted.
One of our researchers put this slide together a few years ago and it very neatly encapsulates the risk factors at play. You can work out which are the ones that you have control over and which are outside your control. It may seem irreverent about such a serious subject but a spoonful of sugar makes the medicine go down – but only one spoon please.
Monday, 9 August 2010
Too much news, not enough information
I haven’t written for a while because there is too much news, too much happening albeit without much detail always being provided’. Charities in our sector are struggling to keep up with the avalanche of discussions and consultations around the “refresh” of the Cancer Reform Strategy and the Government White Paper ‘Equity and Excellence: Liberating the NHS’ published in July and then there are the implications of the Cancer Drugs Fund – the list seems endless.
One thing about having very limited resources, as we do, is that it really focuses the mind on where you put your energies for the greatest impact. Tempting as it may be to indulge in rafts of meetings and discussions and briefing documents each led by a different organisation – if you don’t have the people you can’t. Happily this has a very positive result that you focus on what is important to your stakeholders and feed in to whichever you think is the best group.
We took a view before the election that there were many other charities that would focus on health. Therefore we, as readers will know, took on the Charity Research Support Fund as our campaign. If this fund disappears, less research will be supported. This will lead to a reduction in research, a brain drain of our brightest and best scientists and an inexorable slow down in improving cancer treatment. Our arm is strengthened because we are working with the Association of Medical Research Charities.
On everything else we are working with the Cancer Campaigning Group – watch that space!
One thing about having very limited resources, as we do, is that it really focuses the mind on where you put your energies for the greatest impact. Tempting as it may be to indulge in rafts of meetings and discussions and briefing documents each led by a different organisation – if you don’t have the people you can’t. Happily this has a very positive result that you focus on what is important to your stakeholders and feed in to whichever you think is the best group.
We took a view before the election that there were many other charities that would focus on health. Therefore we, as readers will know, took on the Charity Research Support Fund as our campaign. If this fund disappears, less research will be supported. This will lead to a reduction in research, a brain drain of our brightest and best scientists and an inexorable slow down in improving cancer treatment. Our arm is strengthened because we are working with the Association of Medical Research Charities.
On everything else we are working with the Cancer Campaigning Group – watch that space!
Monday, 26 July 2010
Controversies in breast cancer
Just back from two days in Edinburgh at a conference titled “Controversies in breast cancer”. An unusual conference organized by scientists and clinicians and by invitation only. Papers are not reviewed and there is no press coverage: just a forum for experts in the field to discuss and debate a wide range of topics in breast cancer research. The proceedings will be published online before the end of the year.
The conference is now in its fifth year and draws from a diverse group both geographically (international) and in terms of discipline and it is a refreshing experience. I don’t claim to understand the more esoteric science but one is left in no doubt that scientists are continually challenging each other, and themselves, to decide which paths to follow to do the best for breast cancer patients.
One topic which was rather less controversial than it sounded was titled the “Emerging breast cancer epidemic”. We have seen breast cancer incidence rise steadily in the UK and in fact in the developed world and this is predicted to continue through the next decades. More and more are surviving so mortality (death) rates are going down but just because we can sometimes cure a disease does not make it less of an epidemic.
That breast cancer is the most common cancer in women knows no geographic boundaries – it is a global burden that has doubled in the last 30 years. We are used to hearing stories about the disease burden in developing countries of, say, HIV/AIDS, malaria and TB but cancer is not a rare disease in Africa.
What was also interesting is if you take a country such as France the at risk population for breast cancer changed from 19.1 million in 1970 to 21 million in 2010. In Nigeria it went from 24.6 million to 42 million. As infectious diseases are being more successfully treated, the impact of AIDS is reducing and therefore women are living longer. This trend is going to continue and of course it is a good thing. However the single most significant risk factor for breast cancer is age and as these populations live longer the incidence of breast cancer will increase rapidly.
At present the number of young women developing breast cancer in Africa appears high – this is not due in the main to some genetic difference but more to do with the fact that the women who are diagnosed are educated, economically active and more likely to seek help. There are women in rural areas who die from advanced breast cancer without diagnosis or treatment.
The problems they are facing are so different from ours - adulterated drugs, very few trained oncologists. Screening programmes are not an option – lack of access to mammography let alone the resources to deal with any false positives and of course a lack of a consistent supply of electricity!
So as the control of infectious diseases improves and the scourge of AIDS is reduced; as life expectancy increases and with economic growth changing lifestyles – the breast cancer epidemic is a reality.
The conference is now in its fifth year and draws from a diverse group both geographically (international) and in terms of discipline and it is a refreshing experience. I don’t claim to understand the more esoteric science but one is left in no doubt that scientists are continually challenging each other, and themselves, to decide which paths to follow to do the best for breast cancer patients.
One topic which was rather less controversial than it sounded was titled the “Emerging breast cancer epidemic”. We have seen breast cancer incidence rise steadily in the UK and in fact in the developed world and this is predicted to continue through the next decades. More and more are surviving so mortality (death) rates are going down but just because we can sometimes cure a disease does not make it less of an epidemic.
That breast cancer is the most common cancer in women knows no geographic boundaries – it is a global burden that has doubled in the last 30 years. We are used to hearing stories about the disease burden in developing countries of, say, HIV/AIDS, malaria and TB but cancer is not a rare disease in Africa.
What was also interesting is if you take a country such as France the at risk population for breast cancer changed from 19.1 million in 1970 to 21 million in 2010. In Nigeria it went from 24.6 million to 42 million. As infectious diseases are being more successfully treated, the impact of AIDS is reducing and therefore women are living longer. This trend is going to continue and of course it is a good thing. However the single most significant risk factor for breast cancer is age and as these populations live longer the incidence of breast cancer will increase rapidly.
At present the number of young women developing breast cancer in Africa appears high – this is not due in the main to some genetic difference but more to do with the fact that the women who are diagnosed are educated, economically active and more likely to seek help. There are women in rural areas who die from advanced breast cancer without diagnosis or treatment.
The problems they are facing are so different from ours - adulterated drugs, very few trained oncologists. Screening programmes are not an option – lack of access to mammography let alone the resources to deal with any false positives and of course a lack of a consistent supply of electricity!
So as the control of infectious diseases improves and the scourge of AIDS is reduced; as life expectancy increases and with economic growth changing lifestyles – the breast cancer epidemic is a reality.
Wednesday, 7 July 2010
All Party Parliamentary Group on Cancer
On Tuesday I was at the House of Commons for a reception held by the All Party Parliamentary Group on Cancer. The All Party Groups I have been associated with are very effective. They bring together MPs and members of the Lords and the charities and others with an interest in the subject. In this case and the case of the group on breast cancer – this is very much the patients as well.
Paul Burstow MP, who is the Health Minister with responsibility for cancer, announced that the Government will update the Cancer Reform Strategy (CRS). The original strategy was a huge piece of work to which we all contributed and it is really encouraging that the new government is planning to build on that rather than start from scratch.
A White Paper on Health will be published shortly and we understand that the update to the Cancer Reform Strategy will focus on aligning cancer services with the reforms that will be announced in this White Paper. It is really good news for the sector and for patients that the update process will be led by Professor Sir Mike Richards, the National Cancer Director, as he has been a tremendous influence for good in forming policy.
There was talk of making cancer outcomes the best in Europe and dealing with inequalities in care – something which we have been campaigning about for some time. Access to treatments was also mentioned and there was a very moving presentation from an individual who had kidney cancer and had to fight twice for the drugs which have kept him alive – and having a good quality of life.
I won’t say “watch this space” but rather watch out for the White Paper and then for the revision to the Cancer Reform Strategy which will be out sometime in the winter.
Paul Burstow MP, who is the Health Minister with responsibility for cancer, announced that the Government will update the Cancer Reform Strategy (CRS). The original strategy was a huge piece of work to which we all contributed and it is really encouraging that the new government is planning to build on that rather than start from scratch.
A White Paper on Health will be published shortly and we understand that the update to the Cancer Reform Strategy will focus on aligning cancer services with the reforms that will be announced in this White Paper. It is really good news for the sector and for patients that the update process will be led by Professor Sir Mike Richards, the National Cancer Director, as he has been a tremendous influence for good in forming policy.
There was talk of making cancer outcomes the best in Europe and dealing with inequalities in care – something which we have been campaigning about for some time. Access to treatments was also mentioned and there was a very moving presentation from an individual who had kidney cancer and had to fight twice for the drugs which have kept him alive – and having a good quality of life.
I won’t say “watch this space” but rather watch out for the White Paper and then for the revision to the Cancer Reform Strategy which will be out sometime in the winter.
Monday, 5 July 2010
Too old to treat?
I remember my late mother-in-law had a routine check-up when she was in her late eighties and they found a shadow on the lung. No one was very sure what it was and the doctor said that they would watch it as they did not want to operate on her because of her age. Before any discussion could be had my mother-in-law said that she wouldn’t contemplate any treatment anyway as she had lived long enough! There was no question of her being manoeuvred into this position – no one manoeuvred her into doing anything! As she then survived until just a few months short of her century this was probably a wise decision.
But when is old? I am sure that you are as shocked as we are to learn about the discrimination faced by older women with breast cancer. NHS doctors believe women are being denied treatments due to age rather than ability to benefit and this was widely reported in the press last week. A national consultation which was published last week revealed that women over the age of 65 are at risk from exclusion from chemotherapy for example. Only 16 per cent of women over 65 received chemotherapy compared with 77 per cent under 50. We also know that older postmenopausal women are less likely to receive surgery than younger ones. The only acceptable criteria for older people not receiving treatment are personal choice and poor health.
There is a deep irony here as the greatest risk factor for breast cancer is age – the risk increases the older you get. As older postmenopausal women (aged 70 or over), make up roughly a third of the 45,700 women diagnosed with breast cancer each year, it is imperative find out the reasons why they may not be receiving potentially beneficial treatments.
This is why Breast Cancer Campaign is currently supporting research in Manchester which aims to find out whether some older women with operable breast cancer are not being given surgical treatment because of their age rather than choice, health or ability to benefit.
The researcher will interview 550 patients aged 70 and over with operable breast cancer about their general health and choice of treatment. She will use the information collected to establish whether decisions about providing surgical treatment are being based on age even when the patient choice and health would make appropriate to operate.
Knowing the extent to which older women are not given surgery as a result of age, patient choice and poor health will help researchers establish whether these women are being discriminated against. This will provide researchers with evidence to encourage a change in practice and ensure all women receive the best treatment possible regardless of their age.
But when is old? I am sure that you are as shocked as we are to learn about the discrimination faced by older women with breast cancer. NHS doctors believe women are being denied treatments due to age rather than ability to benefit and this was widely reported in the press last week. A national consultation which was published last week revealed that women over the age of 65 are at risk from exclusion from chemotherapy for example. Only 16 per cent of women over 65 received chemotherapy compared with 77 per cent under 50. We also know that older postmenopausal women are less likely to receive surgery than younger ones. The only acceptable criteria for older people not receiving treatment are personal choice and poor health.
There is a deep irony here as the greatest risk factor for breast cancer is age – the risk increases the older you get. As older postmenopausal women (aged 70 or over), make up roughly a third of the 45,700 women diagnosed with breast cancer each year, it is imperative find out the reasons why they may not be receiving potentially beneficial treatments.
This is why Breast Cancer Campaign is currently supporting research in Manchester which aims to find out whether some older women with operable breast cancer are not being given surgical treatment because of their age rather than choice, health or ability to benefit.
The researcher will interview 550 patients aged 70 and over with operable breast cancer about their general health and choice of treatment. She will use the information collected to establish whether decisions about providing surgical treatment are being based on age even when the patient choice and health would make appropriate to operate.
Knowing the extent to which older women are not given surgery as a result of age, patient choice and poor health will help researchers establish whether these women are being discriminated against. This will provide researchers with evidence to encourage a change in practice and ensure all women receive the best treatment possible regardless of their age.
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