Bears4Rare campaign for fair and fast access to treatment for rare disease patients




Rare conditions affect approximately 1 in 17 people in the UK. Although they are living with lots of different conditions, and only 5% have approved treatments, too 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) highlights 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).

Bears4Rare is an awareness campaign, funded by Shire in collaboration with certain rare disease patient groups, including the TSA, 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 today (Wednesday, March 15) 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 provide fair and fast access for rare disease patients, where a treatment exists.

So if you’d like to join the Bears4Rare movement, please:

  • 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! 
You may also like to read this article 'England Says No to Drugs that Cost More Than Your Car (Or Home)' by Bloomberg journalist James Paton, published on March 14, which mentions the 'arduous process' to get Everolimus / Votubia for funded for inoperable SEGA.