Cuts in new drugs for rare diseases alarm patients

The Health Ministry’s plans for a stricter licensing framework regarding imports of innovative drugs into Greece has alarmed some 500,000 people with rare diseases, as well as their families.

The ministry recently announced that innovative drugs under approval may be axed due to overprescription. A case in point is Relyvrio, which during the phase III clinical study was judged ineffective and is to be withdrawn from the market.

“The treatment concerned people suffering from ALS (amyotrophic lateral sclerosis), who have a life expectancy of two years and for whom no other treatment is available,” said Association of Rare Patients of Greece President Dimitris Athanasiou. He said “early access” to new therapeutic protocols “is a critical tool which must be kept unobstructed, always weighing the potential benefit against the potential risk, which may entail the administration of a drug to people with limited life expectancy.”