Bears4Rare: experts call on government to provide fair and fast access to treatments for rare disease patients
Rare conditions affect approximately 1 in 17 people in the UK.1 Although they are living with lots of different conditions, and only 5% have approved treatments,2 many face similar challenges with access to care and medicines. New data included within the Equity and Access report (initiated and funded by Shire Pharmaceuticals) highlight that rare disease patients in England can wait, on average, over two years for life-changing treatments. with only 48% of new treatments approved by regulatory authorities from the last 15 years routinely funded on the NHS (vs 93% in Germany).2
Bears4Rare is an awareness campaign, funded by Shire in collaboration with certain rare disease patient groups, that aims to tackle this issue and inspire action from policy makers to address the inequality of access to medicines for people with rare diseases. The launch pad for Bears4Rare will be a public installation on Wednesday 15 March at London Waterloo Station where 1,000 teddy bears will be installed, representing the estimated 1,000 people living with a rare disease passing through the station per hour.
Experts are calling for a collaboration with NHS England and the National Institute for Health and Care Excellence (NICE) to, where a treatment exists, provide fair and fast access for rare disease patients.
If you’d like to join the Bears4Rare movement, you can:
- Tweet or post on Facebook using #Bears4Rare and @Shireplc (the handle for Shire Pharmacuticals who funded the campaign) – you could even include a photo of you and your favourite teddy!
1.Rare Disease UK. What is a rare disease? Available here: http://www.raredisease.org.uk/what-is-a-rare-disease/ (accessed 3 March 2017).
2.org. RARE Diseases: Facts and Statistics. Available here: https://globalgenes.org/rare-diseases-facts-statistics/ (accessed 27 February 2017)
3.Equity and Access: Making the UK a Rare Disease Leader. (2017) Commissioned and funded by Shire Pharmaceuticals and developed in collaboration with an external steering group.
 Average Wednesday footfall in Waterloo ≈400,000, translating to ≈16,667 per hour. 1 in 17,1 ≈1,000, may be living with a rare disease