Epilepsy drug crisis deepens: Patients and families in difficult situation

Access to the drug "Frisium," which contains the active ingredient Clobazam and is used by epilepsy patients in Turkey, is becoming increasingly difficult. 

According to a report by Cumhuriyet, families who have been unable to obtain this medication for months are going through difficult times as their children's treatments are being disrupted. Families, who emphasize that not every epilepsy drug is suitable for every patient and that changing the current medication carries significant risks, say they do not know what to do now that their remaining supplies have run out.

'OUR MEDICATIONS HAVE RUN OUT'

Didem Çetin, a mother who stated that her son with epilepsy has been using this drug for 14 years, described the hardship she is facing. Stating that she has been unable to obtain the medication she paid for on July 11, Çetin said, “We have not been able to access this drug, which is on a green prescription, for a month. The Ministry says the drug stock will arrive in anywhere from 2 weeks to 6 months, but they cannot give a clear date. It is also impossible for us to procure this drug from abroad. We use 3 of these pills a day, and one box lasts 10 days, and the box we had has run out. We don't know what to do; we are desperate.”

BORROWING MEDICATION AS A SOLUTION 

One of the methods families who cannot find the drug resort to is borrowing medication from another family. Mother Çetin stated that when they experienced drug shortages in the past, they were in solidarity with the relatives of other epilepsy patients and borrowed medication. However, she noted that this time, no one is sharing medication due to the uncertainty.

STATEMENT FROM THE MINISTRY

The Ministry of Health confirmed the supply problem in accessing the drug in a statement to Cumhuriyet. The Ministry stated, “Two different drugs containing the active ingredient Clobazam (Apo-Clobazam and Frisium) used in epilepsy treatment are supplied from abroad. Efforts to resolve the supply problem, which arose due to the transfer of the global license for the drug with the trade name Frisium to another company, are being carried out with our Institution and the Turkish Pharmacists Association (TEB). In this context, TEB has placed an order for the drug Frisium from abroad, and the drug is expected to arrive in Turkey within 1 week. In addition, orders have been placed for Apo-Clobazam, another alternative drug, and it will be procured and delivered to our patients as soon as possible.”

TEB: THE PROBLEM DOES NOT STEM FROM US 

The Turkish Pharmacists Association (TEB) also stated in its announcement that the drug shortage occurred outside of the Association's operational processes. TEB stated, “Approximately 42 thousand boxes of medication in our Association's stocks were used for prescriptions coming from the Social Security Institution (SGK), but this was insufficient to meet the current demand. According to the information we received from the company for Frisium, 7 thousand boxes of medication could be on their way to be sent to Turkey within 10-15 days. Our Association is showing the necessary sensitivity to ensure patients' access to the medication, but the difficulties experienced stem from reasons beyond our control.”