Sunday, February 10, 2008

Ljubljana - 7th February. Slovenia is the first of the countries that joined the EU in 2004 to hold the rotating Presidency of the EU. Each country uses the Presidency to promote an issue that it sees as important, in the hope that it will be able to influence policy across the EU, either through the legislative process (a long term goal) or by recommendations from the Council of Ministers (easier). The Slovenian government chose cancer as its priority and, as with many of the previous Presidencies, we have been helping to bring together the relevant evidence.
Over the past year, with my colleagues Michel Coleman and Delia Alexe, at LSHTM, and Tit Albreht, from the
Institute of Public Health in Ljubljana, we have been editing a book on cancer in Europe. Of course there is an enormous number of books on various aspects of cancer already available but this differs in several ways. First, it covers the entire range of issues related to cancer, from research and drug discovery through screening and cancer plans, to psychological aspects of cancer and palliative care. We were extremely fortunate to get contributions from many of the leading authorities on these topics, including researchers, practitioners, and representatives of patients. Unbelievably, we pulled the whole thing off in just over a year!
The book provided the basis for a major conference on cancer in Europe. We had actually launched the book to the media two days earlier, getting some coverage on the
BBC and elsewhere, but what had been overlooked when putting the timetable together was that this coincided with Super Tuesday in the US presidential race. Clearly, we have some way to go to become experts in spin! (sorry, media relations).
The conference was held in the Brdo conference centre, newly built for Slovenia’s presidency. Slovenia is a stunning country and the conference centre is ain a great location, with a backdrop of snow-covered mountains.
It was my task to sum up the meeting. This is always difficult as much of what needs to be said already has been. I did, however, draw out some lessons. We first need to decide, in each country, whether we really do want to do something. You could argue that the existing systems sort of work. Most people get treated, and for some cancers outcomes are not too bad. However, the evidence we had heard over the past two days was that this was not good enough. There are still large variations in incidence and survival from cancer across Europe. In many countries, care is highly fragmented and patients face long delayed in accessing effective treatment. Only a few countries, such as the UK, have really embraced palliative care on any scale, and even there it could be strengthened. So something really must be done. But what?
Whatever is done, there is a need for co-ordination and, ideally, integration. Rifat Atun, from Imperial College, provided an overview of cancer plans in Europe, noting how many countries have yet to put anything in place while others are still quite limited. Inevitably, given that many of the authors of the plans were in the audience, his sparked considerable debate, as people claimed that there was more written between the lines! Yet that surely misses the point. There is little point in having a plan if you need inside information to understand it.
We talk of a war against cancer but we forget that, in any war, if the forces at your disposal are fragmented then at best you lose the war and at worst you shoot yourself. “Friendly fire” is a perennial risk when some of your allies have complex and potent equipment that they don’t fully understand how to use. Yet, in some countries, politicians seem determined to make things worse, fragmenting systems further in their continuing ideological pursuit of “patient choice”.
It is far too easy to overlook the role of the patient. We were extremely fortunate that Lynn Faulds Wood, president of the
European Cancer Patients Coalition, and herself a survivor of colo-rectal cancer, agreed both to contribute to our book and speak at the conference. She reminded us that a diagnosis of cancer is the beginning of a long and complex journey. Our role, as researchers and practitioners, is to ensure that the patient has a map, signposts, pathways along which to travel and places to rest.
There is still a great deal to be done in cancer prevention. The past few years have seen enormous progress against tobacco, with increasing numbers of countries banning smoking in public places. Yet many of these bans still have exceptions that will have to be tightened in the future and some countries have yet to do anything. Worryingly, the tobacco companies are working hard to subvert the bans. Their worry is that, given most smokers do want to quit, they will use the opportunities offered by the bans to wean themselves off their addiction to nicotine. The industry needs to find ways of ensuring that people remain addicted. It is doing this in several ways. First, it is campaigning to legalise sales of snus, a form of oral tobacco, across Europe. It is currently sold only in Sweden and Norway. As we show in a
recent paper, the industry’s claims for its effectiveness as an aid to quitting are without foundation. Second, it is producing mini-cigarettes, so that smokers can pop out for a few minutes and get a quick nicotine fix without having to smoke a whole cigarette. At the same time, other companies are producing electronic devices that extract the nicotine from tobacco without producing smoke (something the tobacco industry is less keen on because it clearly highlights the role of nicotine as an addictive drug). During the conference a Dutch court ruled that the last of these products, the electronic device, could lawfully be regulated as a drug. This is an extremely important decision as it now opens the way for regulating all nicotine products sold in Europe just like any other pharmaceutical product.
Screening is a key element in secondary prevention. Witold Zatonski, from Warsaw, compared the highly effective, population-based, and carefully managed Finnish cervical cancer screening programme with the much less effective, opportunistic, and essentially unmanaged German model. Finland has brought deaths from cervical cancer down to a very low level while in Germany the death rate remains about twice as high as in Finland. Yet while a typical Finnish woman will have 7 cervical smears in her lifetime, a typical German woman will have 50. Yes, five zero! The explanation? Hardly a surprise – German doctors are paid for each smear taken, while the insurance funds do almost nothing to promote evidence-based care. Clearly, many countries still have a long way to go.
Cancer control is critically dependent on information. Cancer registers have contributed enormously to our knowledge of what works and what doesn’t. Yet too many EU Member States have failed to put in place effective registration systems. What is worse, a few that once had excellent registers are damaging them irreparably> one of the worst examples is Estonia, where the Parliament enacted legislation based on an early version of the EU Directive on Data Protection, before it had incorporated protection for research and health monitoring. With my colleague Mati Rahu, we will be describing the worrying consequences of the Estonian legislation in a paper to be published soon in the International Journal of Epidemiology.
What is most remarkable is that governments that seem keen to use concerns about data protection to impede the war against cancer while they are equally prepared to abandon any pretence at safeguarding privacy in the “war against terror”. Every time we travel to the USA, our governments send over 50 items of information to the US authorities and while this doesn’t include religion it does include whether we have ordered a halal or a kosher meal! Our movements are tracked constantly from our mobile phone records and, in case this is not enough, the UK has more closed circuit televisions than the rest of the EU combined, with one for every 14 citizens at the last count. Many are now linked to facial recognition software. The UK also allows almost all public authorities to
bug phones and, as we have seen recently, the police seen to have no reservations about bugging the conversations of members of parliament. In these circumstances, it is difficult to avoid the conclusion that our political leaders might usefully consider their priorities.
The successes so far in the war against cancer have arisen primarily from research. Innovative treatments have made cancer at some sites, such as the testes, as well as some childhood leukaemias, curable in almost all cases. Yet there is still a great deal to be done, especially in areas such as health services research and the psychological aspects of cancer. Too many countries have failed to invest in the research that is needed to determine what models of care are most appropriate for their circumstances, or to put in place the infrastructure that allow as many of their citizens as possible to contribute to new forms of treatment by participating in clinical trials. As Richard Sullivan, from LSE, reminded us, “Research is a necessity, not a luxury”.

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