Families calling for greater access to a medication that helps manage a severe form of epilepsy have been left “desperate” and disappointed after being told it has not been recommended for addition to the Pharmaceutical Benefits Scheme (PBS).

West Gippsland mother-of-three Brooke Wrigley said her youngest daughter, Everly, was four months old when she had her first seizure.

Now she’s two, and Ms Wrigley estimates Everly has likely had thousands of seizures.

The bright and bubbly toddler has Dravet syndrome — a rare and severe form of epilepsy that begins in childhood and has no known cure.

Everly’s seizures can be so severe that she stops breathing and turns blue. Her longest seizure lasted two and a half hours.

Ms Wrigley said despite Everly having six different anti-epileptic medications every 12 hours, there was “little to no” control over her seizure episodes. 

But when Everly was prescribed the medication fenfluramine, as part of a free clinical trial through Melbourne’s Austin Health hospital, it was like a miracle.

Ms Wrigley said Everly went 90 days without a seizure.

But fenfluramine is prohibitively expensive and costs $10,000 every 60 days, putting it out of reach of most patients.

Which is why many families are hoping it would be added to the PBS. 

Families priced out of medication

Paediatric neurologist Ingrid Scheffer has been leading fenfluramine trials at Melbourne’s Austin hospital and said it would be a big step forward for Australian patients with Dravet syndrome if the drug was added to the PBS.

“It might go from having two or three convulsive seizures a week to one in six months, or maybe even none, which is what we’re all aiming for.”

She said the medication was cost-prohibitive for most patients, which was harrowing for families.

“I’ve had one family who’ve mortgaged their house to try to get access to the medication,” Professor Scheffer said.