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7th ESMO Patient Seminar during the 33rd ESMO Congress Saturday, 13 September 2008 Sunday, 14 September2008 the Stockholm International Fairs, Stockholm, Sweden Cancer treatment in the future: The political perspective We have gathered here in order to point out at the problem of cancer, one of the most frequent causes of death in Europe, which can be prevented. This problem concerns a triangle of people- patients, professionals and politicians. Individuals, who stand beyond this triangle, must remain outside. As a professional I know what patients' needs are, in particular because I pay attention to the newly discovered technologies and latest developments in the area of health. The results of the developments in the field of medical science are amazing and the progress is astonishing. However, the problem is insufficient application of these modern methods, as they are extremely expensive. As a politician I know that not everything that is needed can be delivered. Each government has, besides the Minister for Health also the Minister of Finance. And I must say, if there is something that a Minister for Health hates, it's the budget. 1 Lack of resources allocated to health is probably the main cause of the differences in the survival rates for various types of cancer in the EU. The studies presented on the European level, such as EUROCARE-3 and EHCI, reveal the differences, which, by some diagnosis, decrease the chance to survive remarkably, up to 27%. We all know that there is a big gap between the diagnostics, the treatment and the access to medicines between the old 15 Member States and the new 12 ones. In some countries cancer patients stand a lot better chance of survival than in the others. The situation is most alarming in the new Member States. Prevalence and survival rates for every type of cancer are lower in Western Europe compared to the East. If we take a look on the strategic approach of EU for the period 2008-2013 „The White Book – Together for Health", we take this fact as unacceptable. The reduction of inequality in Europe should be proclaimed as one of the main goals. This fact reflects EHCI but also the statistics of OECD, where it's obvious that the best results are reached in the states with better saturated health service, coming either from the state resources, insurance companies or private ones. Cancer is expected to increase to epidemic proportions all across Europe. But because of increased mobility of many young people from Eastern Europe to the West, situation in Eastern Europe, worsened by the process of ageing populations, will be even more complicated than elsewhere. 2 Why is there such a disparity between the Member States? Why, in the European Union are cancer patients still denied rights that most of us believe to be fundamental? It would be worth looking in detail at what accounts for survival differences. The reasons vary from cancer to cancer. In colorectal cancers, good quality surgery is known to be critical in avoiding recurrences. In breast cancer, expert surgery, radiotherapy, chemotherapy and appropriate drugs all play a role. Catching the cancer early and getting the diagnostic work-up right are enormously important. Evidence showing the relative contribution made by each factor on survival rates would be very helpful for policy makers deciding where to concentrate their resources. Moreover, the researchers found that generally in the more prosperous countries of Northern and Western Europe the trend was downwards for cancer incidence; the exceptions were for obesity-related cancers such as colorectal and postmenopausal breast cancer, and for tobacco-related cancers in women, such as lung cancer. Incidence and mortality from tobacco-related cancer decreased for men in Northern, Western and Southern Europe, they increased for both sexes in Central Europe and for women nearly everywhere in Europe. With the exception of smoking-related cancers, mortality trends generally in most cancers were moving downwards for most of Europe. 3 First we should identify countries, which are able to get drugs and which aren't, which countries are able to give adequate radiotherapy, chemotherapy and high-quality surgery and which countries aren't. I mentioned the access to drugs. Despite the proven benefits of new innovative treatments options, patients across Europe do not have equality of access to these cancer drugs and the speed at which patients can benefit from them depends to a great extent upon the country in which they live. Nineteen countries, representing almost 75% of Europe's population, were included in the report 'A pan-European comparison regarding patient access to cancer drugs'. Austria, Spain, and Switzerland are shown to be the leaders in terms of early adoption and availability of new cancer drugs whereas other countries, such as the UK, Czech Republic, Hungary, Norway, and Poland lag behind. Patients have to wait too long to obtain the benefits of newer therapies and the biggest hurdle to the uptake of new drugs is the proactive allocation of financial resources and budget in the health care systems by policy and decision makers. While new therapies generally increase health expenditure, the value they bring to patients in terms of survival and treating their cancer must be recognized. Research undertaken in the U.S. by Dr. Frank Lichtenberg of Columbia University suggests that access to more and newer cancer drugs improves survival rates. Over the past 20 years, studies have produced a lot of comparative data on cancer, but often it has been one-dimensional and fragmented. 4 We rarely see the changes in cancer incidence, survival and mortality discussed in a systematic way for different tumours and in different countries. For the sake of prevention and organisation of treatment, it is vital to correctly interpret trends in cancer rates. To identify how to move further, we have to emerge from the current data, the real statistics. Allowing national data to be compared with results elsewhere can be a very powerful driver for change – some countries have re-organised their entire cancer services prompted by European comparisons, for example. We all share common health objectives in Europe – these reflect common values shared throughout the Union. But everyone has difficulties in achieving those goals. Providing comparable data and analysis, sharing best practice, allowing practical cooperation to bring together expertise through networks of centres of reference, for example – all of these are actually very important and quite powerful tools. Furthermore, the number of people surviving longer after a diagnosis of cancer is increasing constantly in Europe. For people who survived cancer is from psychological and financial point of view important to return to their work. When they return, some of them have highly supportive employers, who help them ease the change from patient back to employee. Others get back to the routine without any help from their company or organization. At some workplaces, wrong ideas and false fears about cancer cause job-related problems that survivors must overcome. The discrimination is based on false knowledge about the illness and its treatment. There are various kinds of discrimination, 5 but the most used are cutting salaries and financial benefits or increasing number of refused job applications. Therefore, it is very important to protect the survivors against this kind of discriminations. We need to push the employers to accept the new status of employees and provide them reasonable accommodation such as flexible working hours, reassignment to the vacant positions or lighter duties. Also for those, who are unable to work after finishing their treatment we must provide the sustainable living conditions. These people suffered enough from atrocity of illness and they don't deserve to be pushed on the edge of the society. According to Commission's public health director Andrzej Ryś, the Commission has also promised to draft a cancer action plan for next year. There are many expectations for Community action in this area – we will need to consider how far we can respond within the current budget, and whether we need to look again at the overall allocation of funds. We can hope that also a new Directive on the application of patients' rights in cross-border healthcare, first presented on 2 July 2008, would help us to tackle with cancer, especially with the help to patients. The proposal, once adopted, would give EU citizens the right to seek non-hospital care, such as dental care, visits to the optician or medical consultations, in another member state without prior authorisation. The patient would need to pay for the care first and then seek reimbursement from his statutory national system. The reimbursement 6 will be made for costs of care which, had they been provided on national territory, would have been paid for by the social security system. As for hospital care, which according to the Commission is defined as requiring at least one night of hospitalization, member states may put in place a system of prior authorization for reimbursement in two cases. First, if the care could have been provided and reimbursed in the home country and second, if the outflow of patients is such that it puts in risk either the finances of the national social security systems or the planning of hospital capacity. In early drafts of the proposal, patients did not need prior authorization from their national systems either for hospital or nonhospital care. However, the Commission felt that such a proposal would not gather enough support from the European Parliament or the Council to be finally adopted. The draft directive asks member states to establish national contact points for cross-border healthcare and provide citizens with information on their right to seek care abroad. It also states that nonnationals enjoy the same rights regarding access to care as nationals and thus prohibits any discrimination based on nationality or indeed any other grounds. Regarding the enhancement of cooperation between EU-27 national health systems, the draft proposes mutual recognition of prescriptions issued in another member state and the establishment of European reference networks of care providers in order to allow access to 7 specialised care for all and develop economies of scale. Member states are also expected to enhance cooperation on eHealth by adopting measures to make healthcare ICT systems interoperable and share their efforts regarding the management of new health technologies, including health technology assessment (HTA). Overall, the directive is set to clarify the right of patients to seek health care in another EU country while being reimbursed by their national system. I would like to assure you - patients and its organizations, that the quality of the medical staff is indubitable. Even the current Congress reflects that doctors are interested in treatment of their patients according to the latest results of science and technology. That leads us to another problem of the EU, which is that Europe is investing by 40% less into research and development than the US. Many of the next generation scientists and doctors are leaving to the US and only a third out of 400 000 European sciences and technology graduates who now work in the US intend to return home. The implementation of demanding high-tech standards depends on the resources invested into health service and care. Europe must focus on primary prevention and health promotion, secondary prevention with proven screening programmes, more equitable access to optimal treatment and integration of all cancer care services, and sustained and consistent support for advanced independent research. 8 Agreeing on principles that should be the standard of care, like access to information, privacy, confidentiality and dignity, access to medical records, prevention, prior consent to treatment or innovative cancer care is one thing, but putting those standards into operation is something else. It is easy to say that everybody should have access to high-quality care and that treatment must go hand-in-hand with prevention, but if the infrastructure and resources don't exist, it's very hard to implement it. We all agree that prevention can save lives but it requires, besides an investment to technical equipment also an investment to human factor. Unless we all become political leaders in the fight against cancer and demand from our governments to allocate the necessary resources to it, government priorities will be in a different place. As politicians we have an important role to play in making Europe’s fight against cancer more visible, but politicians only put forward the ideas, which are communicated to them from patients and the public. Politicians, patient groups and physicians must speak with a united voice. Fragmented and split approach will not help to achieve sufficient resources in the fight against cancer. 9