IPOPI attended the Eurordis Multi-Stakeholder Symposium on improving access to rare diseases therapies which was held in Brussels on 21-24 February 2016.
The meeting focused on Health Technology Assessment and featured plenary sessions as well as interactive workshops. The event was the first step of a two-stage process, with a second symposium planned for 2017 on a more consensual approach to the new solutions discussed throughout 2016.
The programme included many interesting sessions on topics such as what is value and how to determine value, the different ways of assessing values in the EU member states and immediate patient access and improving information for HTA decision. One of the points raised by Johan Prévot during the break out sessions was the need to identify mechanisms to ensure the right patient representatives are included in the HTA assessment of a specific therapy or treatment.
The meeting aimed to gain better understanding on the determinants of value and of the assessment and appraisal methods for orphan medicinal products, by:
- Bringing all participants to a common understanding of issues/challenges of access to rare disease therapies (webinar/pre-reads to be circulated before meeting);
- Sharing existing and new processes to recognise which ones work best;
- In view of the 2017 symposium, agreeing on a structured approach forward and a set of solutions to explore.
IPOPI looks forward to attending the 2017 follow up meeting.