Maltese Mother Of 9-Year-Old Epilepsy Sufferer Pleads For Medical Cannabis Oil To Be Free Of Charge
A mother whose young daughter suffers from a rare form of epilepsy is pleading with the health authorities to include a type of medical cannabis in its list of free medicines.
Joanna* told Lovin Malta that her daughter has been suffering from Lennox-Gastaut Syndrome, a rare and serious form of epilepsy, since she was two years old.
In recent years, a cannabidiol drug called Epidiolex (or Epidyolex) emerged on the market to treat seizures associated with two rare types of epilepsy – Lennox-Gastaut Syndrome and Dravet Syndrome.
It has been authorised for use in the EU by the European Medicines Agency, which ruled that its benefits are greater than its risks.
The EMA has said that cannabidiol, the active substance in Epidiolex, is thought to act on targets that play a role in the movement of calcium in the cells.
“As this is important for the transmission for the transmission of electrical signals in some nerve cells, and seizures are caused by excessive electrical activity in the brain, altering the movement of calcium is expected to reduce or prevent the seizures,” the EMA website reads.
Epidiolex's website
However, Joanna warned that the drug is too expensive, around €3,000 per 100ml, and has urged the health authorities to include it in the Schedule V scheme which allows patients to receive certain medications free of charge.
“Not many people suffer from this condition so I don’t see how the government can’t provide an exception and lend us a helping hand. I can’t understand how we’re pushing for recreational cannabis but sweeping the necessity of medical cannabis under the carpet.”
After trying out a range of medications to no avail, the young girl is currently being treated with a type of CBD oil.
Joanna said that while her daughter still suffers from seizures on a daily basis, the oil has visibly improved her alertness, mood and cognitive ability, with even her school noticing a clear difference in behaviour.
“We can already see a difference, let alone with the right product, Epidiolex,” she said. “It’s the last option for my daughter to have a better quality of life.”
Questions sent to the health ministry remain unanswered as of the time of writing.
However, the government has previously added medicines to treat rare conditions to its formulary list. Last March, Prime Minister Robert Abela informed a young cystic fibrosis sufferer on a recorded video call that Kaftrio, a crucial medicine to treat her condition will soon be made available.
Meanwhile, the government is treating medical cannabis as a new economic niche and is awarding licenses to companies to process and export the medicine across Europe.
*Her real name is known to Lovin Malta but is being kept anonymous at her request to safeguard her daughter’s identity
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