A new study from the University of Eastern Finland has showed that there are differences in the availability of orphan medicines between the various countries in Europe.
Orphan medicines are pharmaceutical products developed specifically for the treatment, prevention or diagnosis of rare diseases, which affect 30 million people in Europe.
People who suffer from a rare disease do not always have access to the medicines they need and the factor which limits this availability of orphan medicines includes them not entering the markets or the high financial burden on the patient.
What was the focus of the study?
For the study, there was a focus on the availability and distribution channels of ten orphan medicines used in outpatient care in 24 European countries.
All ten medicines were only available in three countries:
- The Netherlands;
- Poland; and
- Malta.
Five to nine medicines were available in ten countries:
- Austria;
- Finland;
- Germany;
- Italy;
- Iceland;
- Slovakia;
- Norway;
- Sweden;
- Spain; and
- United Kingdom.
However, four countries, namely Latvia, Lithuania, Turkey and Belarus, did not have any of the medicines available.
How were the orphan medicines dispensed?
Rare medicines were typically dispensed to patients at pharmacies, while other dispensaries, such as hospitals or health centres, were quite commonly used.
When orphan medicines were dispensed to patients at pharmacies, a part of the price was often paid by the patient. Hospitals and health centres, on the other hand, typically dispensed the medicine free of charge.
Implementing policies
Also, as part of the study, it was investigated whether the European countries had implemented policies to regulate decisions relating to the pricing and reimbursement of rare medicines specifically.
It was found that, typically, no polices applicable to rare medicines alone were in place; instead, decisions on rare medicines were made on the same grounds as decisions on other medicines.
However, 13 countries reported some type of special arrangement. In Latvia and Russia, for example, rare medicines come under a separate budget, and countries such as Spain, Lithuania and Hungary have set special conditions on the reimbursability of rare medicines.
