Recognising Rare Cancers on World Cancer Day



Today is World Cancer Day.

Any cancer is devastating. Everyone has and will be affected in some way by the disease. Official statistics released today by Cancer Research UK suggest that 1 in 2 people in the UK alone are expected to be diagnosed with some form of cancer. And with over 200 identified types of cancer, 186 are thought to be rare.

Although new and innovative treatments are coming to the fore there are concerns over how current systems are equipped to deal with these increases in numbers, especially for less common forms. The oncology landscape never stops evolving and with an array of issues facing the actual drug getting from concept to the patient, the journey is still prolonged and difficult to navigate. Couple that with the fact that well over half are rare cancers, the process can be all the more complicated.

Some rare cancers are not easy to identify. Some cancers affect a small population and may be misleading in terms of symptoms for an accurate and time efficient diagnosis. Some cancers are so rare in fact, the patient population can equate to just 6 in 100,000.

So what does this mean?

This means that “twenty per cent of all cancer cases diagnosed in Europe annually are rare, so taken together, they are not so rare. Every year, over four million Europeans are diagnosed with a rare cancer.” (Rare Cancers Europe.)

In the UK alone recent statistics show an increase to 54% of UK cancer deaths are resulting from the less common cancers.

According to Rare Cancers Europe, the rare forms pose particular challenges due to their low frequency, including:

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

A new system of European reference networks would improve cancer patient treatment, suggests Paolo G. Casali, chairperson of Rare Cancers Europe. This would help professionals and centres of expertise to share knowledge and close the gap on rare cancers and more effective treatments. Through these international networks and methods such as collaborative clinical trials targeting smaller patient populations, hope of access to treatment is still available despite the rare nature of the illness.

However, with the recent NHS developments in the UK and cuts of 25 cancer drugs from the cancer drugs fund (including those for rare cancers) there is increasing pressure to define a sustainable model that takes into account all stakeholders involved in the pricing and reimbursement debate.

Join the conversation and meet crucial stakeholders from MedImmune, Horizon Discovery and Johnson and Johnson Innovation (plus many more) at the global Cancer Innovation Congress 2015.

For more information on how you can be involved please contact me:

#notbeyondus #raredisease #worldcancerday #wearenotourdiagnosis

For more information on the European reference networks:

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