Making reasonable decisions about access to “orphan” medicines in the UK –
More deliberation and less maths
Cancer52 is publishing a briefing paper on access to “orphan” medicines in the UK.
Orphan medicines treat diseases that affect no more than 5 in 10,000  people in Europe. Rare cancers make up close to 40% of orphan medicines and more than 80 per cent of Cancer52’s member organisations  work with rare cancers.
Says Clara Mackay, interim chair of Cancer52, “The current process for making orphan medicines available to patients is overly complicated, too financially driven and has too many agencies involved. It is patients who are currently paying the price for this and we want to shift the emphasis from doing the sums to deliberating more on the patient focus. As an alliance of nearly 80 charities we are willing and well placed to work with all stakeholders to make this happen. There is clearly an unmet need for orphan medicines as more than 80,000 people died of a rare or less common cancer in the UK in 2011.”
To read the full press release which will be issued on Thursday 5 June, click here.
A rare disease is a life-threatening or chronically debilitating disease that affects 5 people or fewer in 10,000 and requires special, combined efforts to enable patients to be treated effectively.
 Source Cancer52 member survey February 2014
 More than 84,300 people died of a rare or less common cancer in the UK 2011, accounting for 54% all of cancer deaths. 46% of cancers diagnosed are rare and less common cancers.