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3rd Council of European Federations for Rare Diseases

Total results in % based on votes of 6 people

Policy

1

Since resources are limited, there should be a limit and only cost effective drugs that benefit the greater number of patients should be reimbursed. If a drug purchaser has to choose between treating 10 patients with drug A or 1 with drug B for a rare disease, then the choice should always be to treat 10 with drug A.

2

Only cost effective drugs should be reimbursed, but the approach for orphan drugs should be different than for common diseases. If there is any doubt about the cost effectiveness of an orphan drug, it should be exceptionally reimbursed in certain cases.

3

Like position 2, but if there is any doubt about the cost effectiveness of an orphan drug, the benefit of doubt should be given to the patient and the drug should be reimbursed systematically.

4

Health is a priority for European citizens. Just as efforts to rescue people after an accident are not restricted, efforts to rescue a patient with a rare disease should not be limited. Cost effectiveness should not be the parameter on which to base reimbursement decisions.

Overview of the new policies developed by players in this event.

Cross border health care is available for all patients with no authorisation needed. The state reimburses the costs of treatment, travel and accompanying persons directly and upfront. The state also makes e-health a major priority to minimise cross border health care. (Combination of Policy 1 and Policy 4)