Patients with epilepsy in Bulgaria are facing serious obstacles accessing medication. The crisis has them turning to European institutions for assistance.

The smaller size of the Bulgarian market means some medicines are not imported, and even if they are, the quantities are usually not sufficient. Patients with epilepsy are left with no choice but to look for them abroad. That doesn’t solve the problem most of the time as Bulgarian prescriptions are usually not accepted in other countries.

To address the prescription issue, patients with epilepsy have turned to the European Commission and the European Parliament for help, Veska Subeva, president of the Association of Parents of Children with Epilepsy, told Euractiv.

Commission nowhere to be found

Shortly before the end of Ursula von der Leyen’s Commission’s first mandate, the Bulgarian association contacted the health commissioner but received no response. It is now preparing a letter to the new health commissioner, Olivér Várhelyi.

“We will try to raise this issue again through MEP Tsvetelina Penkova, who is the ambassador for people with epilepsy in the European Parliament,” Subeva says.

According to Subeva, providing the necessary medicines for people with epilepsy should be the concern of the state, not the patient or the manufacturer of the medicine. She says the Bulgarian authorities are informed of the problem but pretend not to notice.

The Bulgarian Ministry of Health told Euractiv that Bulgarian pharmaceutical legislation is in line with European legislation, and the regulations allow prescriptions issued in Bulgaria to be fulfilled in another EU member state.

However, the government acknowledges that Bulgarian patients may face bureaucratic obstacles in purchasing their medications from abroad, as medicines containing narcotic substances are more strictly regulated.

Bulgarian patients left behind

Practically, the only option is for the medicine to be prescribed by a doctor from the country where it will be purchased. The problem is not limited to Bulgaria, but is exacerbated by severe shortages.

“There is a need for a pan-European solution, and quickly. The medicines available in Bulgaria cannot control the most severe forms of epilepsy. There are medicines that are used throughout Europe and the world, but they are not available in Bulgaria. Even if we could pay for them, Bulgarian prescriptions are not valid in Europe,” Veska Subeva said.

She added that she first encountered the problem in 2009, when she tried to buy her son’s medicine in Poland. She was unsuccessful with the Bulgarian prescription, and the child had to be examined by a Polish doctor.

For years, she bought medicines from France because the prescriptions were recognised, but that is no longer the case, Subeva said. In EU countries, increasingly serious restrictions are being imposed on such drugs.

No access to newer medicine

The National Health Insurance Fund pays for about 15 drugs for the treatment of epilepsy, most of which are generics. The new medications that are already used abroad are not available in Bulgaria, except for two drugs that are only available for children under 18.

For Subeva, patients should be able to receive drugs with a prescription issued in Bulgaria, just as they can receive assistance in an EU country with the European Health Insurance Card.

“If this is not possible, the government should find a mechanism for importing them, even though the Bulgarian market is small and unattractive,” she urges.

Rare epilepsy syndromes also come with intellectual deficits. When the state fails to provide medication for these patients, they are effectively doomed, especially if they do not have relatives to look after them.

Health ministry faces lawsuit

The Association of Parents of Children with Epilepsy is currently suing the Ministry of Health over the chronic shortage of domestically produced or imported medicines. The first hearing in the case is scheduled for the end of April.

There is no exact data on how many Bulgarians suffer from some form of epilepsy, but the state pays for medicines for about 29,000 patients each year. Many patients are not included in statistics because they obtain their medications by covering the cost themselves or purchasing them from abroad.

There are also forms of epilepsy that affect several hundred people in Bulgaria. Such as Lennox-Gastaut Syndrome (LGS). There are fewer than 500 patients with it. About 100 people have Dravet syndrome.

[Edited by Vasiliki Angouridi, Brian Maguire]