Access to Medicines and Medical Devices All-Party Parliamentary Group (APPG) report on NICE methods

The UK Access to Medicines and Medical Devices All-Party Parliamentary Group (APPG) has published a report on NICE’s medicines cost effectiveness assessment methods. The report gathers evidence from over 50 individuals and organisations across the healthcare system including industry, patient organisations, clinicians, economists and NICE, and identifies several areas for improvement in how NICE assesses medicines, especially in the rare disease space. Among the report’s key recommendations are that there should be a fairer representation of patient groups on NICE appraisal committees to ensure that National Health Service (NHS) patients gain access to the best possible and most innovative medicines and devices available, and that QALY modifiers for severity and unmet need should be introduced. Related to the latter, it was noted that, in situations where a QALY may not be adequate to capture all disease benefits, there may be additional elements that can be brought in for a multi-criteria decision-making process.

The IPPN highly welcomes the APPG report, which accurately reflects the challenges experienced during the NICE proceedings on afamelanotide and validates the conclusions of our successful appeal that NICE failed to properly include the IPPN in one of their meetings, discriminated against EPP patients and unreasonably concluded that the treatment showed small benefit. We now strongly hope that NICE will take the report’s evidence and recommendations in serious consideration to improve their assessment methods and so ensure a more equitable medicines access for rare disease patients in the UK. In addition, given the impact that NICE approvals have for access in other countries, an improvement of their methods and processes is of utmost urgency not only for UK patients but for patients all over the world!

Read the report here: APPG – NICE Methods Review Report