Public Attitudes to Rare Diseases: The case for equal access

Public attitudes to Rare Diseases: The case for equal access presents the findings of a survey commissioned by the BIA on public attitudes towards rare diseases and access to medicine.

The survey, conducted by YouGov, revealed that the public strongly believe that patients living with a rare disease should be able to access medicines through the NHS on the same basis as people living with more common conditions. Further, the majority agreed that the NHS should ensure access on the basis of clinical need to these patients, even if it would be more costly to the NHS.

The findings follow recent assertions made by England’s HTA body, NICE, during a review of their methods and processes that there isn’t appetite or interest among the general public for specific measures to tackle rarity as an issue.  

The report recommends that NICE revise their position on this issue and considers the value of a rarity modifier as part of the HTA process to people with rare diseases and the general public.

Key findings:

• 79% of respondents agreed that patients living with a rare disease should be able to access medicines on the same basis as people living with more common conditions.
• 78% of respondents agreed that the NHS should ensure access on the basis of clinical need even if this would be more costly to the NHS.
• 46% agreed that the cost threshold for medicines for rare diseases should be raised to ensure equitable access to medicines for all.