10 December 2008: Rare cancers are common; optimal care is not

Rare cancers are common; optimal care is not: ESMO calls for equal access to optimal care in rare cancers

The European Society for Medical Oncology (ESMO) hosted today a press briefing in the European Parliament to launch political recommendations on how to overcome rare cancers’ challenges. These recommendations were developed by a large group of research community, healthcare professionals, EU policy-makers, patients and industry at the ESMO Rare Tumours Conference on 6 November in Brussels.

Rare cancers, including all cancers affecting children, are widely spread across Europe and represent 20% of all cancers. Each year, more than 440,000 Europeans develop a type of rare cancer. In addition to facing a devastating and life-threatening disease, these patients are challenged by a number of specific hurdles because their type of cancer is rare. In Europe, patient’s access to care for rare cancers is still inadequate and survival rates differ significantly across the EU.

“I was diagnosed with a rare cancer 10 years ago. When you are in this situation time is of the essence. The struggle to get a correct diagnosis, to find the right specialist and to have access to the best available treatment is a great challenge for a person who already feels that there is no time left”, said Sandy Craine, representative of The Chronic Myeloid Leukaemia Support Group.

In this context, ESMO is proposing a set of political recommendations which call for awareness and prioritization of rare cancers and tackle issues like the mandatory referral of all suspected cases to centres of expertise, recognition of alternative trial designs for rare cancers as well as granting access to best care for all European rare cancers patients.

The recommendations welcome the European Commission’s consideration on patients’ rights in cross-border healthcare and emphasise that geographic borders should not prevent patients accessing best standards of care.

Professor Paolo Casali, head of the Sarcoma Medical Unit of the Milan Istituto Nazionale Tumori and member of the ESMO Executive Committee, emphasized that “Patients with life-threatening disease are willing to accept some degree of uncertainty attached to their treatments. So, regulators must accept a higher degree of uncertainty in clinical studies for rare cancers. At the same time, clinical researchers must find new ways, new ’methodologies’, to reduce that uncertainty as much as possible”.

ESMO realizes that a lot still needs to be done in the area of rare cancers and hopes that these political recommendations will help the European Union and the Member States to take the appropriate next steps in this field.

Read the full Political Recommendations on Rare Cancers.

200. Call to Action