As seen in a press release by Bioindustry; the UK BioIndustry Association (BIA) has published findings from a survey on the public’s interest in supporting rare access to affordable medicine and healthcare through the NHS, Britain’s public health system.
Rare medicines have significant road blocks — due to the small patient sizes, lack of data, higher costs, and sparse similar medicines. This means despite affecting more than 3.5 million British residents, only 5% even have an available treatment. The British National Institute for Health and Care Excellence (NICE), which provides guidance for the Department of Health, recently asserted that the public isn’t interested in supporting rare issues through specific public measures.
However, the report “Public attitudes to Rare Diseases: The case for equal access” by the UK BioIndustry Association (BIA) has found evidence of the contrary. Their survey found strong public support for helping rare patients be given equal access to medication by the NHS.
Survey Findings
This included findings that 79% of those surveyed thought patients with rare diseases should have the same access to medicine as those with more common conditions. 78% thought the NHS should provide access based on clinical need despite higher costs.
They also found almost half of respondents (46%) believe that in order to provide equitable access to rare patients, the NHS should raise the cost threshold for their medications.
BIA concluded NICE should have several takeaways, including reviewing their position on the public’s interest in rare treatment access, and to explore other options for providing extra funding for rare medicines to ensure equal access.
THE CEO of BIA, Steve Bates said in a press release that it’s important for patients to actually receive and benefit from scientific innovations and new treatments. Bates went on to acknowledge the many obstacles that patients face, such as the lack of a standard of care and small patient populations. He asserted that the survey proves that the public supports measures to help rare disease patients access therapies, even if that means the cost will rise. He concluded with,
“We would therefore encourage NICE and the Department of Health and Social Care to revisit their assumptions on public appetite for rarity-specific measures.”
