In a historic move, from today CBD oil Epidyolex will be listed on the Pharmaceutical Benefits Scheme (PBS) for patients with Dravet Syndrome, a rare form of epilepsy.
Health Minister Greg Hunt said around 116 patients each year would benefit from the PBS listing, which reduces the price to $41.30 per script, down from an estimated $24,000 per year for those wanting to access treatment.
Manufactured by GW Pharmaceuticals, Epidyolex is only the second medicinal cannabis drug after nabiximols (trade name Sativex, for treating spasticity in Multiple Sclerosis) to be registered for supply in Australia, and the first one to be subsidised via the PBS.
Dravet Syndrome is a rare, genetic epileptic encephalopathy causing seizures which don’t respond well to standard medications. The disorder begins in the first year of life in otherwise healthy infants. Around 80% of sufferers have a gene mutation that causes problems in the way ion channels in the brain work.
According to Hunt’s website: “The Therapeutic Goods Administration says that, while there have been very few well-designed clinical trials using medicinal cannabis, the evidence to support its use in the treatment of certain childhood epilepsies is the strongest.”
Welcoming the move, Epilepsy Action Australia CEO Carol Ireland said cost is one of the main barriers for patients in accessing cannabinoid medicines.
“It is good news indeed, for a small proportion of epilepsy patients. Epilepsy is somewhat of a ‘spectrum disorder’ with seizure activity varying in frequency and severity, and Dravet syndrome is one of those rare but devastating, drug-resistant forms of epilepsy that begins in the very first year of life.
“It is lifelong, and most children will develop varying degrees of developmental disability and some, very sadly, will not live to see adulthood.
“Treatment is challenging, with doctors searching for the best combination of medicines (as well as dietary therapy and vagus nerve stimulation) to treat seizures and prevent seizure emergencies.
Ireland added: “It has been exciting to see the research confirm that cannabidiol can provide an effective treatment option and now to see the medicine becoming within the reach of families through the PBS.”