Excused 45 orphan drugs to 4,270 patients with rare diseases

BARCELONA, 29 ( EUROPA PRESS)

Catalunya currently delivers 45 types of drugs orphans to treat the 4,270 patients that suffer from rare diseases or high complexity in Catalonia, which means a cost of 78 million euros for the Generalitat, explained the Manager of care pharmaceutical of the Catalan health service (CatSalut), Antoni Gilabert.

The Advisory Council of pharmacologic treatments of high complexity of the Generalitat (Catfac), created in 2009, is responsible for centralizing renewal and authorization to the patients of these treatments, which cost an average of 18,000 euros per patient, reaching 300,000 euros in specific cases.

Speaking to Europa Press, Gilabert explained that this group has centralized the pharmacological management of patients of high complexity to ensure that treatments dispense according to unified criteria and whose decision not is borne by each hospital by the burden of accountability of the risk that entails.

As a novelty, the Generalitat studied applied to rare diseases the new system of payment of drugs based on their effectiveness, the wake of pilot experience started with the AstraZeneca Pharmaceutical with a new drug for lung cancer, that of not yielding positive results between the same pharmaceutical company – pioneering experience in Spain-.

The pharmacy manager of CatSalut has defended this strategy in cases of high cost treatments and illnesses that generate “considerable uncertainty” as in the case of rare diseases, which are those that suffer less than 5 patients per every 10,000 inhabitants.

One of the goals of the Catfac goes through more synergies with the rest of the autonomous communities to unify the rare diseases programme and grow in sharing records of these minority cases.

In this line, Catalonia works in the creation of a map of centres of expertise in rare diseases, which would be responsible for centralized clinical management of a patient of the above-mentioned characteristics depending on their experience and knowledge of the subject, and in collaboration with centers of primary care (CAP) and territorial hospitals close to the patient.

The case manager

Is a step forward in the guarantees of “clinical quality” in this field and improve networking and collaboration of centers in this area, which will also be humanized by the creation of a manager of the case which will follow the patient circuit tests and exempt treatment, has explained the technique of evaluation of services and quality of CatSalutPilar Magrinyà, at the celebration in the Parlament of a day in the framework of the world day of the minority diseases.

Catalunya has a plan of minority patients that want to precisely define units of high specialization, wants to address this problem with the well-deserved complexity and give visibility to these pathologies.