吾爱吃瓜

吾爱吃瓜 research into access to rare disease medicines

New research from 吾爱吃瓜, shows that patients with rare diseases often experience a challenging journey that poses difficulties for the National Health Service. Researchers at the University's  at the University's found that patients often face difficulties in diagnosing their condition, accessing specialist care, and having effective treatment available.

While there has been an increase in the number of medicines available for rare diseases in the last 10 years, access to treatment is problematic, largely because of their high costs.  

Siobhan Bourke, who is conducting the research.PhD student Siobhan Bourke said: 鈥淭here has been a lot of media interest in high cost cancer drugs, but these aren鈥檛 the only medicines that face difficulties in being funded by the NHS. Our research has found that rare disease patients can be waiting years for access to medicines.鈥� 

鈥淎t the moment, guidance on funding these medicines varies throughout the UK, and it is hoped by examining public preferences for funding we could help inform policy.鈥�

Siobhan is now building on this study by assessing the general public鈥檚 views on NHS funding of medicines for rare diseases.  The ultimate aim is for NHS funding decisions to reflect people鈥檚 wider views and preferences for treatment options.

鈥淭his is a very exciting study and an excellent opportunity for the people of Bangor to have their say in this research鈥� she added.  Anyone wishing to be a part of this discussion may contact Siobhan Bourke by email: rarediseases@bangor.ac.uk 

Publication date: 12 November 2015