This is the picture that should enrage Australia’s five million migraine sufferers – an empty lecture theatre at a migraine symposium that proves doctors are ignoring the crippling health condition.
Just five medical students and only 40 others attended the conference held in August at Melbourne University, even though it featured one of the world’s top migraine doctors Prof Peter Goadsby from Kings College London.
“I teach 200 students at Australia’s number one university and at the symposium we had five to six medical students and only 50 attendees,” said neurologist Professor Tissa Wijeratne, who works at Western Hospital Melbourne.
Professor Wijeratne also chairs the World Federation of Neurology Public Awareness and Advocacy Committee so he know a thing or to about the leading cause of disability in Australia – migraine.
He had hoped to inspire others to specialise in migraine and headache medicine.
Migraine and Headache Australia chief Trevor Thompson said doctors only received 10 to 15 hours training on migraine in their medical degree, and it was misdiagnosed and under treated.
Pain Australia CEO Carol Bennett said a recent survey found pain medicine had the lowest uptake among GPs, adding it was the area of medicine that least interested them because it was complex and the remuneration was low.
Currently, five million Australians suffer from migraines – more people than have asthma or diabetes combined.
A recent Deloitte report found it costs the health system $14.3 billion a year and the economy another $16 billion in lost working hours but it’s being ignored by doctors and medical researchers with just $1.4 million spent on research.
It is so poorly managed one in 10 patients go on to develop medication-overuse headaches.
Their condition becomes chronic and they suffer migraine more than 15 days per month.
Many patients are too embarrassed to speak about their pain because the severity of the condition is not understood and they fear being dismissed and told to take a paracetamol.
The World Health Organisation has ranked migraine as the second largest cause of disability in the world in 2016.
To make matters worse, migraine sufferers in Australia are being denied access to subsidies for breakthrough new CGRP (calcitonin gene-related peptide) drugs that can prevent migraines. These cost $800 a month and are unaffordable without a subsidy.
“These are really exciting new treatments which most studies accept can result in a 50 per cent reduction in headache days per month,” said neurologist Susan Tomlinson from St Vincent’s Clinic in Sydney.
Last month pharmaceutical company Novartis withdrew its bid for a subsidy for its breakthrough CGRP drug Aimovig because it would have had to share a funding cap with Botox which is already oversubscribed.
This does not augur well for Teva Pharma Australia which earlier this month registered its CGRP inhibitor drug Anjovy or for the medicine Emgality which has been approved for subsidy.
Migraine and Headache Australia spokesman Carl Cincinatto said the organisation was asking the federal government for money in next year’s budget to set up a national consumer focused website to provide trustworthy information on managing migraines.
Headache Australia also want funding for a headache centre of excellence, money to research the epidemiology of migraine and flexible work hours and other reforms for migraine sufferers so they don’t quit their jobs.
Migraine is more than just a headache. Patients may experience nausea, vomiting, light sensitivity, have speech problems and cognition issues for up to 72 hours, and afterwards can feel tired, weak and cognitively impaired for days.
Australian Medical Association president Dr Tony Bartone said in the past there were not a lot of management options for people with migraine and the perception that doctors ignored the condition may reflect that.
It was one of those health conditions where the financial resources did not match the frequency or the prevalence of the condition and management would be helped if the government funded GPs to spend more time with their patients who suffered this type of chronic disease, he said.
‘I COULDN’T EVEN BABYSIT MY NIECE’
Sophie Cher is in the prime of her working life but had to give up her job as a university administrator 18 months ago because she suffers devastating migraines six days per week.
The headaches make the 43-year-old sensitive to light and noise. She has difficulty speaking, suffers vertigo, nausea and sensory sensitivity.
“I started with three migraines a week and ended with six migraines a week because doctors didn’t warn me the drugs could end up causing the headaches,” she said.
Ms Cher has tried various pain medications, epilepsy medication, mouth splints, chiropractic treatment, ophthalmology treatment, physiotherapy, acupuncture, diet changes, pain clinics, a Cephaly stimulator, a TENS machine and even kinesiology and “nothing works”, she said.
“All of my spare money has gone on my health and you end up losing hope and it has a massive impact on your psychology and your emotions and you can’t plan anything with anybody, I couldn’t even babysit my niece.”
When she first looked for a headache specialist in Sydney there were only two and she is hopeful the new CGRP medications will be subsidised in case they reduce the number of headache days she has each week.
‘IT WAS LIKE BEING HIT WITH A FORCE FIELD’
Suzanne Vale had to quit her job as a senior associate in a law firm as the migraines she suffered for over 10 years got worse and worse.
“I would go down heavy and lose days at a time. I’d be too confused to read, had tinnitus, lethargy, nausea. It was like being hit with a force field,” she said.
Sometimes the headaches lasted three days, one lasted an entire week and she said she felt undermined in her workplace, which was not sympathetic and demanded she get medical certificates for each episode.
A strong person who always turned up to work and often pushed through to midnight to get the job done Ms Vale said she was made to feel “like a hypochondriac”.
Like many sufferers she stopped telling her friends and family when she had migraines because she was embarrassed by her condition.
She now runs her own business and can work flexibly around her migraine attacks.
The 49-year-old said she was “astounded” so few medical students or doctors attended the recent migraine symposium given the toll it had on sufferers.
“You get someone like me who is well educated, in the prime of their life wanting to work and who leaves the workplace because it’s not worth the pain and the pressure,” she said.
“This condition needs to be on the political agenda and matter in the same way as cancer and diabetes and there have to be workplace awareness campaigns and a lot more money for treatment.”
‘YOU THINK IF DEATH WAS AN OPTION I WOULD CHOOSE IT’
Georgia Spencer’s migraines started when she was just 13 years old, and they became a recurring issue from the age of 17.
“A couple of years ago, if I was not on daily medication, I would have a migraine every two to three days,” the 27-year-old hotel sales executive said.
“It gets to the point where you are lying in bed feeling as if your head is in a vice, and you can’t see, you’re throwing up for 12 hours and you think if death was an option I would choose it at this moment. That’s my experience of it.”
Anti-depressants and anti-epileptic drugs were prescribed to prevent the illness but they caused unbearable side effects then the government took her pain medication, codeine, off the shelves to manage opioid deaths.
Now she uses triptan drugs to manage attacks but they cause rebound headaches that in one instance lasted for three weeks.
“I’m trapped in a vicious cycle and there is no way out,” she said.
New CGR medications are a ray of hope but without a subsidy there is no way she can afford the $800 a month the treatments cost.
“I’ve tried chiropractic treatment, acupuncture, physiotherapy, the Cephaly device and nothing really works and you are resigned to the fact you are going to suffer every three to four days,” she said.
“It’s one of those illnesses where unless you’ve experienced it people just tell you to take a Panadol or have a drink of water and because you are not bleeding and have no outward symptoms. People are so uneducated about it.”