28 May 2026

BIA response to NICE's consultation on adopting the EQ-5D-5L value set

Summary

BIA has responded to NICE’s consultation on adopting the EQ-5D-5L value set. Summary of BIA response:

  • BIA understands the rationale for moving to a new UK value set that reflects more up‑to‑date methods for capturing societal preferences.
  • However, we are concerned that adoption of the new value set may further exacerbate existing barriers to patient access to medicines targeting rare, disabling and life-long conditions, where treatment objectives often focus on symptom relief and functional improvement rather than extended survival.
  • We urge NICE to adopt a phased approach to implementing the EQ-5D-5L value set, enabling both EQ-5D-3L and EQ-5D-5L value sets to be permitted as reference case options to mitigate any unintended impacts on patient access to innovative medicines.
  • BIA also recommends NICE provide clearer guidance on the evidentiary requirements for demonstrating when EQ-5D-5L is unsuitable, including greater flexibility on the acceptability of alternative measures and international data to support the use of condition-specific or other quality of life tools.

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