The Burden and the Challenges of Rare Cancers

According to the RARECARE project, around 4.3 million people in the European Union (EU) are affected by rare cancers and there are more than 500,000 new cases diagnosed every year ( Eur J Cancer. 2011 Oct 25). Individually, each of the 198 identified rare cancers is considered "rare", but collectively they represent about 22% of all cancer cases diagnosed in the EU28 each year, including rare adult solid tumours (13%) and rare haematological cancers (8%) as well as all childhood cancers (1%).

Specific challenges posed by rare cancers:

  • Late or incorrect diagnosis
  • Lack of access to appropriate therapies and clinical expertise
  • Very limited number of clinical studies due to the small number of patients
  • Lack of interest in developing new therapies due to limitations in the market
  • Few available registries and tissue banks

Inequalities Across Europe

According to a population-based study on survival from rare cancer in adults ( Lancet Oncol. 2006 Feb;7(2):132-40.), there is evidence that five-year relative survival rates are worse for rare cancers (47%) than for common cancers (65%). It has also been documented that survival rates differ significantly across Europe. However, further research is needed to ascertain why cancer survival is lower in some European countries than in others.

Findings from a pan-European comparison regarding patient access to cancer drugs from the year 2005 suggest that cancer patients across Europe do not have equitable access to new innovative cancer drugs. These inequalities were confirmed in 2009 in the Comparator Report on Patient Access to Cancer Drugs in Europe, which also highlighted "the gap in cancer survival between Northern and Western Europe compared with Eastern Europe".