For many Australian families—including grandparents who have stepped up as primary carers—the devastating effects of Dravet syndrome are all too familiar. But a new listing on the Pharmaceutical Benefits Scheme (PBS) is offering a lifeline.
As more grandparents take on the role of raising their grandchildren—often unexpectedly—navigating complex medical needs like Dravet syndrome can be overwhelming. The physical, emotional, and financial strain is magnified when you’re on a fixed income or managing your own health concerns.
Dravet syndrome is a rare and catastrophic form of epilepsy that affects approximately one in every 15,700 people. It typically begins in infancy—often between six and 12 months of age—and is marked by frequent, prolonged seizures that are difficult to control with standard medications.
But the condition doesn’t stop at seizures. Children and adults with Dravet syndrome often experience significant developmental delays, cognitive impairment, behavioural challenges, and motor difficulties.
Tragically, the syndrome also carries a high risk of premature death, with a mortality rate of 15 to 20 per cent, often due to SUDEP (sudden unexpected death in epilepsy), accidents, or infections.
And while the condition begins in childhood, it doesn’t go away with age. As Professor Piero Perucca, a leading neurologist, explains: ‘While onset begins in infancy, it remains a lifelong condition, with reduced survival. Adults continue to experience persistent seizures and disabling symptoms.’
For Ben and his son Raphael Lennard, the journey with Dravet syndrome has been harrowing. Raphael had his first seizure at just four months old—a long, uncontrolled episode that marked the beginning of a life filled with hospital visits, emergency interventions, and constant fear.
‘It was happening every week,’ Ben recalls. ‘Trying to make normal life work around that was just impossible. We were in a constant state of fight or flight.’ The seizures were often 10 to 20 minutes long and required multiple rounds of medication to stop.
On top of that, Raphael experienced developmental delays and side effects from other medications, including a suppressed appetite that made it difficult to motivate him with food, a common parenting tool.
The emotional and financial toll was immense. Both of Raphael’s parents had to reduce their work hours to part-time to care for him. Fortunately, Raphael was granted compassionate access to fenfluramine, and the results were remarkable.
Fenfluramine, a medication that was once financially out of reach for most, has now been added to the PBS, slashing its cost from a staggering $10,000 every two months to just $31.70 per prescription. That’s a saving of more than $59,000 a year—and for families already stretched thin by the emotional and financial toll of this condition, it’s a game changer.
‘It has been a game changer for us,’ Ben says. ‘The seizures are shorter and now only happen every four to six months. 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.’
With fenfluramine now listed on the PBS, families like the Lennards can finally access this life-changing medication without the crushing financial burden. The maximum cost for a prescription is now just $31.70. But the benefits go beyond the individual. As Ben points out, ‘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.’
This also means less strain on the healthcare system, fewer emergency visits, and better quality of life for families who have already endured so much. Dravet syndrome doesn’t just affect the child—it deeply affects the whole family, especially carers.
For grandparents taking on this role later in life, the emotional and physical demands can be exhausting. Sleepless nights, constant vigilance, and fear of the next seizure can lead to anxiety, burnout, and health issues of their own. Over half of carers have sought mental health or family support services—proof that support is essential, not optional.
That’s why the PBS listing of fenfluramine is such a critical step forward. It not only provides access to a more effective treatment but also eases the financial and emotional load on families.
Though fenfluramine isn’t a cure for Dravet syndrome, it represents hope—hope for fewer seizures, better quality of life, and a more stable future. It also highlights the importance of continued investment in rare disease treatments and support for families navigating these complex conditions.
For now, families like the Lennards—and the many grandparents quietly holding their families together—are breathing a little easier, knowing that help is finally within reach. ‘This could help so many families like ours find stability in the chaos,’ Ben says.
As a grandparent carer, how has this development impacted you? Do you think more support is needed for families raising children with complex medical needs? Share your thoughts in the comments below.
