Second year Journalism and International Studies student with interest in local journalism.
Chronic migraine sufferers will pay almost $10,000 a year for a new drug that promises relief from debilitating pain.
The independent Pharmaceutical Benefits Advisory Committee (PBAC) has refused to recommend that the Federal Government list migraine preventative Erenumab - commonly referred to by brand name Aimovig - on the subsidised Pharmaceutical Benefits Scheme.
Patients who have taken part in three-month and 12-month trials of Aimovig, which is produced by multinational pharmaceutical company Novartis, have described it as “life changing”. But they face paying about $800 a month for the treatment, once the free trial ends.
Mount Colah grandmother Clara Melia has endured chronic migraines for 45 years. They pushed her out of the workforce prematurely and forced her into emergency rooms on multiple occasions.
“I was scared to go anywhere if there wasn’t a doctor’s surgery I could go to," she explained.
I said to my doctor, ‘I really can’t go on like this, I’ll try anything’.
She says it took just weeks for Aimovig to change her life.
“The last three months have been wonderful, absolutely wonderful. I don’t wake up with a headache anymore. This month I’ve only had one migraine."
Migraines are moderate to severe headaches often aggravated by movement, with associated symptoms including nausea; visual disturbances and blind spots; limb numbness; and difficulty concentrating.
The pain can persist for up to 72 hours, and impacts over three million Australians, according to Headache Australia, a division of the Brain Foundation charity.
Migraines are the theme of this year's World Brain Day (July 22).
The World Federation of Neurology describes them as "under-recognised, under-diagnosed and under-treated". While a 2018 Deloitte report into the impact of the chronic condition, found 86 per cent of sufferers were of working age - costing Australia an estimated $16.3 billion a year in lost productivity.
Before Aimovig, Clara Melia had tried an array of prescribed medications and painkillers for both migraine prevention and acute pain management. Her treatment history includes trips to hospital for Morphine and Stemetil injections, for severe nausea.
The former bank worker says Aimovig is the only medication she trusts, after previous preventatives contributed to a heart attack in early 2019.
Erenumab is an antibody that binds to and inhibits the activity of the calcitonin gene-related peptide receptor that has been linked to migraines.
Patients can receive a 70mg or 140mg dose, given as a subcutaneous injection in the arm, abdomen or thigh.
The decision not to recommend Aimovig for the PBS was made public in late April.
It if remains off the list, Ms Melia will only be able to afford the injections for another six months.
They’ve given a lolly to a child and now they’re saying 'you can’t have it anymore'.
In a provided statement, a PBAC spokesperson said: “PBAC is required… to give consideration to the effectiveness and cost of the medicine, including by comparing the effectiveness and cost with that of alternative treatments. A new medicine cannot be listed by the Australian Government on the PBS unless the PBAC makes a recommendation in favour of listing.”
The PBAC’s published reasons for not recommending the drug for listing include its "very high" cost and its comparable efficacy to Botox, which has been subsidised for migraine treatment since 2014.
The PBAC also said more data from trials of the 70mg dose was needed, as most patients trialled 140mg.
Neurologist Dr Swapna Sebastian says there is no lack of evidence supporting the drug’s effectiveness, and that cost was the predominant factor.
According to Sr Sebastian, Aimovig and Botox had similar success levels and similarly low side effect profiles, with 60 per cent to 70 per cent of her patients responding well to either of the two receptor-inhibiting options.
Temporary neck pain and eye droop are the most common side effects of Botox, while constipation and injection site irritation are the most frequently reported side effects of Aimovig.
“It’s about what works," she said. "Some people have tried Botox and it didn’t work."
Teacher Fiona Kennedy-Gilmore says that Aimovig was the only option for her. Her migraine frequency “actually increased, to 25 days a month”, after a round of Botox in 2018.
I had constant head pressure all around my head for the entire three months.
Like Ms Melia, Ms Kennedy-Gilmore describes Aimovig as life changing because it has given her back the ability to participate in the workforce and everyday activities.
“I can eat regularly instead of skipping meals because I’m in bed; exercise; attend functions; get through a work day; concentrate better… this all flows on to improved physical and mental health."
In a provided statement, a Novartis spokesperson said the company was considering the feedback from the PBAC. Some participants in the Aimovig trial however, sought immediate change.
Migraine sufferer Raphaella Crosby, created a Change.org petition saying successive governments had neglected research into migraine treatment and that the condition's seriousness was under-estimated. While the government cannot overturn the decisions of the PBAC, petitioners implored politicians to help fight the issue.
Dr Sebastian believes patients are entitled to ask for government support and that migraine treatment research has been left to the wayside.
“It gets pushed to the bottom of the rank…I’d like to see migraines being considered more seriously when it comes to research funding,” she said.
A similar drug called Galcanezumab, marketed under the trade name Emgality, is also administered through monthly injections and has been submitted for PBAC consideration this month, giving patients renewed hope in their search for an effective remedy.
The Minister for Health Greg Hunt did not respond to requests for comment.
- Meg Kanofski