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Call to Action - Full Text

The “Call to Action Against Rare Cancers” has been developed as part of the Rare Cancers Europe initiative. The Call to Action is based on the Political Recommendations that were the result of the conference “Rare Tumours in Europe: Challenges and Solutions” which was held in November 2008 in Brussels and which brought together 150 European representatives from government bodies, research institutes, healthcare professionals, industry, patient groups and health advocacy organisations.

For more detailed information on the identified issues and their proposed solutions please see the Political Recommendations.

While recognising the value of past and on-going policy initiatives, and looking forward to their impact on the lives of patients, we call attention to the fact that numerous hurdles are to be overcome in order to support effective research into rare cancers and the best provision of care to patients.

We call on European governments, the European Union institutions and other international governmental organisations, the research community, the pharmaceutical industry, medical professionals and members of civic society to give a high priority to the issues linked to rare cancers. It is imperative that all stakeholders work together in order to achieve the political support and commitment of resources that is necessary to eliminate the barriers to effective research and high quality care in the field of rare cancers.

Hence, we call on all relevant stakeholders to work towards:

Substantially improved equity of care in rare cancers:

  • We strongly encourage the consideration of equity, social justice and the interests of patients when setting public health priorities. While recognising the economic burden associated with the provision of healthcare, we emphasise that geographic borders, and other barriers, should not prevent patients from accessing the best standards of care.

Development of new effective therapies for rare cancers:

  • While recognising the impact of the EU Orphan Drug Directive , we urge researchers, clinicians, the pharmaceutical industry and governments to further prioritise the development of new effective therapies for rare cancers.

Facilitating clinical studies in rare cancers:

  • We call for more clinical studies designed to establish the efficacy of new medical treatments in rare cancers. The testing of new cancer therapies in rare cancer patients should be made an essential part of the clinical development process. Due to the rarity of the diseases, the low numbers of patients available for study accrual is a barrier to collecting definitive data through standard clinical trials. In the field of rare cancers, researchers and regulators must recognize these difficulties and encourage alternative study designs and methodological approaches.

Balanced, timely and transparent assessment of new therapies:

  • We call upon all EU member states, the regulatory bodies, industry, patient representatives, and national health authorities to commit to meaningful and transparent dialogue with the rare disease-oriented research communities. It must be ensured that new effective therapies for rare cancers are appropriately developed and made available in a timely manner to all eligible patients with full reimbursement for as long as there is a need. Procedures for assessing the cost-effectiveness of therapies must show total transparency and effect their procedures over a reasonable time frame. They should include in the cost-effectiveness models the wider social costs and benefits of effective treatment. Issues such as the off- label use of treatments in rare cancers should also be addressed more effectively.

Building a knowledge-base:

  • We encourage the establishment and further development of networks of clinical databases, rare cancer registries and tissue banks, which would improve the collection, provision and comparison of data on rare cancers.

Increased knowledge-sharing:

  • We call for structured collaboration between rare cancer specialists and centres of expertise, through the creation of reference networks which will set a high standard for the provision of care to patients with rare cancers. Networking should not only take place within the individual Member States but also on a pan-European scale. Linking individual centres of expertise to European and global reference networks on rare cancers would provide the necessary structure for a more efficient exchange of experience, information, data and best practice. This would lead to an overall increase in knowledge as well as more efficient clinical research and improved care for patients with rare cancers.

Timely and accurate detection and provision of care:

  • We encourage the development of innovative approaches to raising general practitioners’ awareness about rare cancers in order to promote a timely and appropriate referral of patients to centres of expertise and reference networks. Referral to centres of expertise is crucial, especially with regard to timely diagnosis and correct clinical decision-making on an overall therapeutic strategy.

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