Athens launches first Greek language rare diseases list
Athens has launched its own Rare Disease list in Greek. Until now, no detailed classification existed for new rare diseases in the Greek language. The list is an analytical archive of every rare disease and its sub-categories, including genetic mutations.
Considered a stepping stone for forming a precise epidemiological view of rare diseases in Greece, the Rare Diseases List, published by the Greek Health Ministry in January, aims to eventually enhance diagnosis and facilitate patients’ access to treatments, the President of the Hellenic Federation of Associations of Rare Diseases, Efstratios Chatzicharalambous, told EURACTIV.
However, up until now, there was no translated, detailed classification of existent or new rare diseases in a Greek registry, unlike most other EU Member States which hold a native language database.
The newly published list is “the most specific registration of rare diseases” available in Greece, as it includes “much more accurate data on them since a variety of orphacodes are now recorded according to the genetic mutations each disease has undergone over the years,” the President of Rare Diseases Federation explains to EURACTIV.
“It is the foundation for significant future steps regarding rare diseases,” Chatzicharalambous highlighted.
Easier access to treatments lowers the cost
There are several unofficial lists of rare diseases available online, which are neither legally valid nor accurately updated. In addition, rare diseases are difficult to diagnose, and sometimes, a patient may live without an exact diagnosis until the end of their life, as reported by EURACTIV.
“The diagnosis can now be valid and more accurate,” doctors will have access to the exact Greek name of a patient’s rare disease (orphacode) based on its specific characteristics presented by the patient, Chatzicharalambous explains.
Since doctors will be able to register more accurate information for their patients on prescription systems, EOPPY will be able to have more data available on rare diseases and therefore eventually better monitoring for the epidemiological situation in Greece is possible, said Efstratios Chatzicharalambous.
The National Health Service Agency (EOPPY) is the main agency for public social and health insurance in Greece, which means it is the one responsible for covering the medical health costs for treatments, medicines or vaccinations.
As EOPYY could have specific data for existent rare diseases in Greece, everything regarding treatments should be regulated more quickly and efficiently.
With the list, “patients’ access to treatments and orphan drugs will be improved in the country,” explained Chatzicharalambous. Hopefully, this could also eliminate the costly need for patients to seek treatment in other countries.
“Even for difficult rare diseases,” the cost of treatments could be significantly lowered by being available in the Greek market.
“The National Health Service Agency could have a more holistic approach and could easily assess treatment costs,” he added.
“This means that EOPYY could formulate a special budget for rare diseases”, he said, adding that it “will make bringing medicines and treatments to Greece easier even if there are only 12 patients [with a specific rare disease],” he added.
Next step: the Registry
In terms of the next steps, “Creating a National Registry of Rare Diseases is a principal priority [for Greece]”, the ministerial decision enacting the list explains.
Because of the size of the project, it was decided that a pilot phase is suitable for building up expertise. Four rare diseases were selected for this phase: cystic fibrosis (initially focusing on children), spinal muscular atrophy (SMA), Gaucher disease and Pompe disease.
The designated codes for each rare disease “will be included in the national registry of rare diseases that is being developed, with the benefit of the final recipient, who is no other than the patient”, the preface of the decision stated.
[By Marianthi Pelekanaki, edited by Vasiliki Angouridi, Brian Maguire | Euractiv’s Advocacy Lab]
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