EPF’s key messages:
Transparency, Involvement of patients, Quality of Life Indicators
1. Patients want access to new medicines which have been authorised either by the central or mutual recognition procedure. True access also means reimbursement of these medicines. The onus for refusing reimbursement should lie with reimbursement authorities which should support their decision with clear evidence (which may include relative effectiveness or cost effectiveness studies).
2. Patient organisations should be fully involved in such relative effectiveness and cost effectiveness work.
3. Important issues such as quality of life indicators and impact on carers or relatives should be fully integrated in such cost effectiveness and relative effectiveness studies.
4. The process for such decisions should be completely transparent, if regulators want patients to have full confidence in the process.