Price relief as epilepsy drug PBS-listed

·3-min read

Australian epilepsy sufferers will now be reimbursed for a drug that reduces uncontrolled seizures, as a Melbourne mother opens up on her son's "scary" diagnosis.

Lacosamide, also sold under the brand name VIMPAT, was listed on the Pharmaceutical Benefits Scheme on Wednesday as an add-on treatment for primary generalised tonic-clonic seizures (PGTCS).

It will drop the price of the drug from $154.66 for a 56-tablet packet to $41.30 for general patients and $6.60 for concessional patients with idiopathic generalised epilepsy aged four or above.

Melbourne boy Edward, nine, is among the 250,000 people currently living in Australia with epilepsy.

Although he had his first seizure at age six in 2017, it wasn't until earlier this year that his architect mother Laura was finally able to get an explanation.

Edward collapsed at school, including a fall down the stairs, during two episodes on the same day, and eventually was diagnosed as having generalised epilepsy with tonic-clonic seizures.

"It was very scary," she told AAP.

"Until the moment we got in touch with Epilepsy Action Australia, discussed the medication, understood the implications and started the medication, I don't think we felt in control.

"In the first two or three weeks, we were in denial a bit as parents."

While he put on a brave face in the doctor's office, Edward was later discovered crying in his bedroom and asked his mother what epilepsy was.

"That moment broke me a bit and I feel like crying even now," Laura said.

She explained epilepsy, much like autism, exists on a spectrum and he was fortunate.

"I told him we're so lucky in this day and age ... because if you were born 200 years ago, we wouldn't know what to do," Laura added.

PGTCS are among the most serious seizure types, with sufferers facing increased risk of serious injury and sudden unexpected death.

About three in four idiopathic generalised epilepsy sufferers will experience generalised tonic-clonic seizures, and there are limited treatment options.

Paediatric neurologist and epileptologist Ingrid Scheffer, a clinical researcher at Austin Health, Royal Children's Hospital and the University of Melbourne, says the unpredictable nature of seizures makes life challenging.

"For children, uncontrolled seizures often impact on learning and behaviour. For those whose seizures are poorly controlled, we need new options in terms of anti-seizure medications," she said.

"The availability of VIMPAT on the PBS means we now have another treatment option for patients with uncontrolled seizures."

Most people with epilepsy establish good seizure control through medication, but often it is a process of trial and error for those with PGTCS.

The family of four from Melbourne's southeast is still waiting on the results of Edward's initially prescribed medication.

But Laura says she won't hesitate to move Edward on to VIMPAT if instructed by his doctor, following the glowing endorsement of a nurse at Epilepsy Action Australia.

"I am aware of it and have it on my list of trusted medications," she said.

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