Just because you are paranoid...

...doesn’t mean they aren’t out to get you. OK – they aren’t out to get me – but my feeling that the government’s commitment to medical research may not be as strong as we would like, or that the UK needs, is resonating elsewhere.

Rather than write about it myself – let me direct you to one of the best blogs in the charity medical research sector – Simon Denegri*. In his recent blog he says “I know that I can be prone to policy hypochondria but, in talking with our members, my instinctive sense that the current White Paper proposals do not account for nor incentivise strongly enough medical research, has hardened.” Read more Sunshine, stem cells and policy hypochondria over the NHS.

Simon mentions the following blog in his text from William Cullerne Brown** on what is being billed as Vince Cable’s first major speech on science on the 8 September. As How to read Vince Cable's big speech on science at Queen Mary's University of London. This goes beyond medical research and into science in general and sounds some warning signals. He states, “I think the central question is still what role spending by government on research and technology plays in the government's economic thinking...... Either the coalition believes the state has an important role in securing Britain's hi-tech future, in which case it should have no difficulty in committing to long-term support for science. Or it doesn't, in which case the only thing it can say is, as Margaret Thatcher did, that the government's job is to cut taxes so that firms can make up their own minds about where to spend their money.”

Certain industries may well do that – and do it elsewhere – the pharmaceutical industry certainly has that option. And without good basic research coming out of the universities – well there are plenty of other options for them and not in this country.

* CEO of the Association of Medical Research Charities
** William Cullerne Brown is Chairman and Founder of Research Fortnight and Research Europe

Self help or self harm – do we know?

Whether we live a “healthy” lifestyle or not many of us think about it even if we don’t always succeed. Herbal and other complementary therapies have always been around and while there may be a lack of evidence to how effective they are (no I am not going to enter into the evidence-based discussion here) most of them are not harmful.

I am for the healthy lifestyle and I believe that if you eat a balanced diet you shouldn’t need supplements but have to admit to swallowing vitamin C if I think I am getting a cold and sometimes the cold develops and sometimes it doesn’t...

Just as there are interactions between licensed medicines (and your doctor and/or pharmacist should always make a careful note of what you are already taking before prescribing/dispensing something new), there are interactions between the medicines and the complementary therapies or indeed some foods.

In 2004, a colleague and I went to the American Society of Clinical Oncology (ASCO) conference and there was a very scary presentation from a group including someone from the Memorial Sloan Kettering Cancer Centre – one of the top cancer hospitals in the USA. What was so alarming is that they said that over 70 per cent of cancer patients receiving medical treatment are also using complementary therapies and some of these were actually counteracting the effect of their cancer treatments. What is really worrying is that the vast majority of these patients did not tell their doctor because they thought they would be laughed at or stopped from taking something which they thought “was doing them good”.

Sloan-Kettering has a database About Herbs, Botanicals & Other Products where you can look up the various products and also see if there are known interactions.

This was brought to my attention this week by an article in the Irish Times by Muiris Houston The mixing of treatments can be lethal. This drew from an article in Cancer World by Anna Wagstaff, Grapefruit juice and St Johns Wort are just the tip of the iceberg (July-August 2010 No 37). We know that many cancer drugs are “toxic” which means that as well as killing the cancer cells they have unpleasant or even quite serious side-effects and the two have to be balanced. What happens if some other substance is either preventing the drug from working – or even causing the drug to stay in the body longer than it should, resulting in an overdose.

When treatments fail patients or when the side-effects are so bad the treatment is stopped – is the impact of possible other therapies that the patient is taking explored? As Anna Wagstaff says, “Drug interactions cannot always be avoided but so long as they are identified, they can at least be managed. The danger lies in interactions that are not being identified and by their very nature it is difficult to know how widely this is happening”.

I am neither for nor against complementary therapies – I am for the evidence - and article like this should provoke an acceptance the evidence is needed and a spirit of cooperation between clinician and patient is essential. Sloan Kettering has made a good start.

Good, even better but not best

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.

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.

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.

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!