A life-changing medication for those battling a rare form of epilepsy has been added to the Pharmaceutical Benefits Scheme (PBS).

Fenfluramine, an additional treatment option for those with Dravet syndrome, is a ray of hope for families dealing with an already non-responsive epilepsy.

By the time this drug is recommended to people with the syndrome, they are normally on at least two other medications.

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‘A lifelong condition’: What is Dravet syndrome?

Affecting one in 15,700 people, the Dravet syndrome is characterised by seizures that are hard to treat and significant developmental delays.

The syndrome typically begins when children are 6 months to 12 months old, and the mortality rate is 15 per cent to 20 per cent due to SUDEP (sudden unexpected death in epilepsy) and related accidents such as drowning and infections.

And it doesn’t go away when they become adults.

According to Professor Piero Perucca, “while onset begins in infancy, it remains a lifelong condition, with reduced survival”.

Adults look at “persistent seizures, disabling cognitive, behavioural, and motor symptoms”, with little effect from medication.

Medication can help reduce symptoms, but it is not something that can be cured.

‘Constant state of fight or flight’

At just four months old, Raphael Lennard had his first seizure, which proved to be long and uncontrolled.

“The early days were really quite shocking and scary,” said Raphael’s father, Ben Lennard.

What followed were weekly hospital visits and a constant state of fear and uncertainty, only increasing during COVID-19, when restrictions at hospital meant only one parent could be with him at a time.

Seizures were 10 minutes to 20 minutes long, with multiple rounds of drugs needed to stop them.

“It was happening every week — trying to make normal life work around that was just impossible, we were just in a constant state of fight or flight,” said Lennard.

There were also developmental delays and reactions to other medications that suppressed appetite.

“There’s still motor delays, he doesn’t want to eat so he’s not food driven like other kids, we can’t reward him with chocolate because he just doesn’t care,” Lennard said.

‘Ungodly amounts’: $10k every 60 days

And the medication price before the PBS? $10,000 every 60 days.

This is often after trying multiple other medications, and those with Dravet syndrome can look at being on at least three anti-epileptic drugs at a time.

This doesn’t even take into account the cost for specialists and hospital visits.

Due to the frequency of seizures and time spent in hospital, Raphael was given compassionate access to fenfluramine, without the heavy price tag.

“It has been a game changer for us, the seizures are shorter, happening only four to six months,” said Lennard.

“For other families, just having this option at the start without having to go through all the different concoctions, without having to pay ungodly amounts — it’s another weapon in the arsenal against epilepsy”.

Impact on carers

Because Dravet syndrome is diagnosed in infancy, the burden of care and advocacy often fall on parents and guardians.

Not knowing when the next seizure will come can be terrifying for child and parent and the helplessness felt watching a loved one going through one.

Both of Raphael’s parents have had to cut their hours to part-time work as a result.

Research shows that the burden of care can lead to persistent anxiety, poor mental health and sleep quality, loss of work and financial burdens.

The care burden has also resulted in 55 per cent of carers accessing a mental health or family support service for the parents or siblings of the person living with the condition. It is a condition that affects the whole family.

‘Stability in the chaos’

With fenfluramine on the PBS, prescriptions will now cost a maximum of $31.70, which is huge drop from the previous price of $10,000.

“It could help so many families like ours find stability in the chaos,” Lennard said.

Lennard said there were also benefits for the wider community as “we’re not accessing hospitals so much, we’re not going to the GP every week to get new scripts”.

“It makes life a little bit easier.”