Discours de Lydia Mutsch à l'occasion du lancement de la EU Joint Action on Rare Cancers

Joint Action on Rare Cancers

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"Dear Commissioner,

Dear colleague,

Distinguished audience,

Ladies and Gentlemen,

Let me start by saying how pleased I am to welcome — together with my colleagues Commissioner Andriukaitis and Minister Lorenzin — the launch of the European Joint Action on Rare Cancers.

My motivation to welcome today’s event could not be higher, as a Joint Action on Rare Cancer fits perfectly well with Luxembourg health priorities and aims.

Let me briefly explain you how:

First, as many of you remember, back in 2015 during the Luxembourg Presidency, I already had the great pleasure to open the high level event celebrating '30 years of EU Action against Cancer', and to welcome the European Commission Expert Group on Cancer Control for its third meeting in Luxembourg.

During this conference, I underlined that, 'as a small member state, we specially acknowledge the great added value of EU level cooperation in the fight against cancer and we are very pleased that the Commission continues to support member states in their efforts to reduce cancer incidence and mortality and promote the quality of life of cancer patients'.

Second, most of you probably remember that the Luxembourgish Presidency made personalised medicine one of its health policy priorities.The high-level conference of 8 July 2015 'Making access to personalised medicine a reality for patients' addressed obstacles to the integration of personalised medicine into European Union healthcare systems, identified best practices and their added value, and outlined the potential benefits of personalised medicine for public health and its impact on policy-making in the European Union.

The conference fed the 'Council conclusions on personalised medicine for patients' adopted by the 28 Health Ministers during the Council on the 7th of December 2015.

Personalised medicine in the field of rare cancers is an area of intense research and is currently making its translation from research into the clinical domain for a growing number of cancers.

I plead that this experience will serve as proof of concept for personalised medicine in numerous health systems.

Third, Luxembourg strongly supported the EU effort to build European Reference Networks for rare and complex diseases.Rare and complex diseases are areas where EU joint action can bring considerable added value in tackling major health challenges more effectively, namely through information sharing and exchange of best practice and expertise and thus helping to reduce existing inequalities among and inside member states.

As a small member state, we are particularly keen to secure the access of our patients to such networks.

Our clinical and research community is also keen to exchange knowledge and best practice with other experts in the field.

Luxembourg will welcome the launch of European Reference Networks covering, among others, rare and complex paediatric tumours, rare cancers in adults, and genetic tumour risk syndromes.

Let me now briefly summarise the many reasons for Luxembourg to celebrate with you the launch of this Joint Action on Rare Cancer.

In the new draft Hospital Law that is currently in its legislative process, we incorporated the concept of 'Réseaux de competence' (Competence Networks).

Such nation-wide networks are meant to foster coordination and cooperation between providers, in and out of the hospitals.

The concept relies on patient pathways and integrated care.

Cancer patients are one of the patient categories that could benefit most from such competence networks and we expect our providers to submit an application early after the vote of our new hospital law.

It is clear that such national network will build close relationships with ERNs, once established.

The Luxembourg government adopted in July 2014 a very comprehensive National Cancer Control Plan 2014-2018.

This National Cancer Control Plan contains 73 different actions covering the areas of governance, health promotion, prevention and early detection, diagnostic, treatment, supportive care and rehabilitation, health resources, patient rights and research.

This Plan acknowledges that, due to its small size, our country cannot develop and maintain the capacity and competences required for the care of rare or complex cancers in adults and children. It plans to give equitable access to high quality cancer care for rare or complex cancers and for paediatric cancers.

The Plan was instrumental for the establishment of the National Institute for Cancer in June 2015, aiming at organising national multidisciplinary concertation for rare and complex cancer, developing patient pathways and implementing integrated care with international clinical partners.

Already today, I'm pleased to see concrete actions: for instance, our National Institute will host on the 2nd of December its first multidisciplinary concertation involving international experts for rare cancers.

Our national teams will be keen to learn from the deliverables of the Joint Action to improve their practice.

Our National Cancer Control Plan aims also at fostering research in cancerology, and at fostering regular exchanges between researchers and clinicians.

It defined a national research strategy, focusing on 3 major areas: cancer immunology, tumour resistance and neuro-oncology — all 3 areas being highly relevant for rare and complex cancers.

It is obvious that our scientific and medical community will welcome the added value of the Joint Action on Rare Cancer.

Talking research, Luxembourg recognised early that common or frequent cancers become more and more stratified, and embarked on the journey of identifying genetic variants and their characteristics.

Hence, the National Institute for Cancer devised a tumour sequencing programme that will be launched in early 2017 thanks to the financial support of the Integrated BioBank Luxembourg.

The information gathered thanks to the molecular sequencing will be available for the clinicians in order to identify rare forms of frequent cancers.Luxembourg also created the Personalised Medicine Consortium (PMC), an initiative with the aim to support research and the adoption of personalised medicine into the national healthcare system.

It brings together the Luxembourg Institute of Health (LIH), the LCSB (Luxembourg Centre for Systems Biomedicine) and IBBL (Integrated BioBank of Luxembourg).

The PMC initial areas of focus include cancer (lung, colon, and breast), diabetes, and Parkinson’s Disease.

The PMC is keen to build new collaborations between clinicians and researchers from Luxembourg and to foster new synergies.

To aid in this process, the PMC has developed since 2014 a PMC FUND to 'pump prime' new initiatives.

This programme was very successful in 2015 and 2016, leading to a new call for 2017.

These are all but a few examples that illustrate Luxembourg’s strong commitment to patients affected with cancer, and rare cancers in particular, by aligning various plans, initiatives and projects toward a common goal.

To conclude, I am truly happy to welcome today the European Joint Action on Rare Cancer: we heard earlier today that rare cancers affect more than 20% of newly diagnosed patients in the European Union.

Rare cancers are a scaring reality as the clinical outcomes for patients with such cancers are significantly worse than for patients with so-called common or frequent cancers.

I see today's launch of a joint action on rare cancer as a new opportunity for our patients, our clinicians and our researchers to benefit from enhanced EU-wide cooperation and knowledge, maximising synergies and results.

Dear Commissioner,

Distinguished audience,

Ladies and Gentlemen,

I thank you for your attention and I'm happy to let the floor now to my colleague Beatrice Lorenzin from Italy."