A Cross-Border Perspective On Pathologic Diagnosis of Rare Cancers

On 11th February 2014, MEP Zofija Mazej Kukovič (EPP/SDS) hosted and moderated a panel on “A Cross-Border Perspective On Pathologic Diagnosis of Rare Cancers”.

Of the trillion euros in the new Multiannual Financial Framework, €80 billion has been earmarked for research and development. As the political debate on cancer on the EU level was about to begin, MEP Zofija Mazej Kukovič gathered in Brussels the representatives of health organizations, patients, cancer victims and the pharmaceutical industry.

According to Mazej Kukovič, the fact that we have the appropriate knowledge, awareness and financial resources puts us on a path to success when it comes to cancer treatment. “We need more cooperation between member states in the field of rare cancer. This way we can make treatment more readily accessible to those with such rare conditions. In the USA, they have already learnt how important it is to build networks. Wow we must do the same in the EU, both as concerns the European reference network between centres of excellence and the reference centres themselves.” The MEP warned that we also have to take into consideration the current financial situation. “Health insurance systems in all Members States are faced with difficulties, which of course means less money for the effective treatment of patients.”

dr. Pablo Casali, head of the European Society for Medical Oncology, also pointed out the difficulties of getting funding for research and treatment of rare cancers: “The expert network should be better financed and supported by the EU.”

The representative of patients, Ms. Jayne Bressington, presented the case of her daughter, who suffers from a rare type of cancer called GIST: “I never thought that something like this could happen to our family. As a mother, you can never accept the fact that you cannot help your child because no-one else knows how to. The most important thing in my opinion is for rare cancer patients to have access to quality treatment anywhere in the EU. We should get rid of all barriers and increase the availability of rare disease experts.”

Annika Nowak, Team Leader in the Health Systems Unit at the European Commission Directorate General for Health and Consumers, reminded the participants of the importance of informing patients of the rights they have under the Cross-border Health Directive. “Patients must be given the possibility to get treatment in another Member State, as long as such treatment is not available to them in their home country. With this, we wish to achieve improved diagnoses and patient treatment across the EU. That is why it is extremely important for citizens to be informed of what this Directive brings.”

The latter should have been transposed into the Member State legal systems by the 25th October 2013. Slovenia missed the deadline, however, and because of it received an official warning from the European Commission. To comply with the Directive, Slovenia must still change the rules governing its obligatory health insurance.

Expressing her willingness to cooperate with other stakeholders in this field, the Novartis representative, Anne Mathieu-Boué, said that “The current market offers poor motivation for pharmaceutical companies to invest into rare cancer treatments. Of course we are open to all suggestions and to cooperation with the EU.”

MEP Mazej Kukovič, who at the time of the Slovenian presidency of the European Council in 2008 was Slovenia’s Minister of Health, took stock of the situation back home and the fact that a major breakthrough in the field of cancer was achieved during the Slovenian presidency. The Council, on the basis of the Slovenian proposal, adopted a resolution and committed itself to additional investment into research and development in the hopes of better controlling cancer. “After six years, we have managed to arrive at the point where we are looking for solutions to rare cancers. Today, 4 million EU citizens suffer from one form of rare cancer. They face many obstacles on the road to more effective diagnosis and afterwards, treatment. E-medicine, telemedicine and other technology allows for a more effective support environment. The European Reference Networks, which were established by the new Directive, are of paramount importance when it comes to combatting rare diseases. In addition, smaller Member States, such as Slovenia, cannot achieve the critical mass of experts for rare cancers to treat their citizens. Consequently, networking is crucial.”

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For more information, please contact:

Maja Mikanec, assistant to Zofija Mazej Kukovič: +386 41884641, maja.mikanec@ep.europa.eu

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