New research from Bangor University, shows that patients with rare diseases often experience a challenging journey that poses difficulties for the National Health Service. Researchers at the Centre of Health Economics and Medicines Evaluation 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.
PhD student Siobhan Bourke said:
“There has been a lot of media interest in high cost cancer drugs, but these aren’t 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.”
“At 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.”
Siobhan is now building on this study by assessing the general public’s views on NHS funding of medicines for rare diseases. The ultimate aim is for NHS funding decisions to reflect people’s wider views and preferences for treatment options.
“This is a very exciting study and an excellent opportunity for the people of Bangor to have their say in this research” she added.
Anyone wishing to be a part of this discussion may contact Siobhan Bourke by email: [email protected]