Stiripentol (Diacomit) is a novel antiepileptic drug known to improve seizure control in a significant percentage of patients diagnosed with Dravet syndrome when used in combination with valproate (Depakote, Epilim, Valcote) and/or clobazam (Frisium, Urbanyl). It is the only drug specifically indicated for use in Dravet syndrome and was approved by the European Union in 2006 with the following indication: “Diacomit® is indicated for use in conjunction with clobazam and valproate as adjunctive therapy of refractory generalized tonic-clonic seizures in patients with severe myoclonic epilepsy in infancy (SMEI, Dravet’s syndrome) whose seizures are not adequately controlled with clobazam and valproate.”

 

While stiripentol is generally available within Europe, residents of countries outside the EU must obtain stiripentol on a compassionate use basis and pay for it from private funds. The cost of obtaining stiripentol has risen dramatically, making it inaccessible for many families.

 

In 2008, thanks to the efforts of the manufacturer, Biocodex, and KM Pharmaceuticals, with support from the IDEA League, stiripentol was designated as an Orphan Drug by the USFDA. This has made this important treatment more obtainable within the US, yet getting and paying for stiripentol can still be a challenging undertaking. Biocodex and KM Pharmaceuticals are currently working toward full USFDA approval.

 

The IDEA League has worked tirelessly to assist families both in and outside the US in obtaining stiripentol and in getting the cost covered through medicaid or private insurance. Thanks to the efforts of many of our members, leaders, and others, stiripentol is now covered by medicaid in the following states:Iowa, Indiana, Illinois, Wisconsin, Pennsylvania, Ohio, Wyoming, Washington, New York, Colorado, Utah, Connecticut, Ontario government in Canada.  Private insurers are: Wellmark, Anthem, Premera, Medco, BCBS of Texas, United Healthcare and Tri Care. If you would like information on how to go about the process of obtaining stiripentol, please email us at info@IDEA-League.org.

 

In addition to helping families obtain stiripentol through insurance plans, the IDEA League has also established the Medication Assistance Fund. This fund is available to qualifying families to help them with the costs of stiripentol. 

 

Important: Stiripentol (Diacomit) should only be used under the approval and care of a qualified physician. When using stiripentol, decreases in other AEDs of up to 50% may be required to avoid adverse effects.