Media release: Migraine community furious at delay of PBS listings
Today marks one year since the new migraine drug Ajovy was recommended by the independent Pharmaceutical Benefits Advisory Committee (PBAC), but this life-changing medication has still not been listed on the PBS, and the migraine community is furious.
Another new migraine drug, Emgality, was recommended by PBAC in July 2019, and again in November last year, but it too has not yet been listed on the PBS. The first of these new migraine medications, Aimovig, withdrew from the PBS process in November 2019. It is nearly three years since these new medications became available, and patient body Migraine Australia says people living with debilitating migraine are sick of being told our medications will be listed ‘soon’.
Chair of Migraine Australia, Brenda Moore, says the ongoing delay is simply cruel.
“Some people are selling their belongings or borrowing heavily from family to keep paying for the medication, while others are forced to suffer.
“It is very cruel to know there is a medication that can help so dramatically but you can’t have it because of what we are told is an ongoing price negotiation,” Ms Moore said.
Aimovig (made by Novartis), Emgality (made by Lilly) and Ajovy (made by Teva) are the first of a large new group of medications which are the first preventative medications designed specifically for migraine. These new medications were developed as a result of the research of leading Australian neuroscientist Professor Peter Goadsby and his colleagues, who won the prestigious Brain Prize for this breakthrough work last week. Calcitonin Gene Related Peptide (CGRP) was found to surge in the blood of people having migraine attacks, causing inflammation and blood vessels in the brain to widen. These new medications are CGRP antagonists that block the CGRP and prevent migraine attack in most people.
Most migraine patients respond well to the CGRP medications with few side effects. Around a third of patients are ‘super responders’, achieving over 75% reduction in frequency and severity of migraine attack, meaning they can live their lives almost symptom free. The efficacy of the new CGRP medications has been confirmed in multiple studies including research conducted in Australia. The retail price for all of these medications is around $800 per month, with discount programs available to help patients while the companies pursue PBS listing. However, with the cheapest discount offer still being $263 per month, these life changing medications remain out of reach for most people.
Migraine Australia was founded in 2018 due to the challenges of trying to get Aimovig on the PBS. Founder Raphaella Crosby said fighting for the last two years has been exhausting and no one should ever have to fight this hard for basic medical care.
“The last two years have been a rollercoaster, and we’re really sick of the Government gaslighting us with their lies and empty promises.
“We were told over and over again that they would list our new medications if they were recommended by PBAC.
“Then we were told that would list if the medications were recommended by PBAC and the drug company agreed to the terms of listing.
“Then we all got letters from the Department, in response to our letters to MPs and the Minister, saying the delay was due to the drug company not submitting the required documentation, despite the Government’s own medicine status website saying Teva had submitted the required documentation in May 2020.
“It is simply not good enough; sick people should not have to fight this hard to access the medication they need.
“The Health Minister needs to do his job and list these new migraine medications on the PBS urgently,” Ms Crosby said.
Migraine is a complex genetic neurological disorder, and the biggest cause of disability in people under 50. Deloitte Access Economics calculated that migraine costs the Australian economy over $35 billion a year.
“It is particularly hard to understand why a conservative Government won’t list these medications which can help working age people get off welfare and go back to work,” Ms Moore said.
“Most of Migraine Australia’s members are highly intelligent, educated women in their thirties and forties who had to give up their careers because of increasingly debilitating migraine attacks.
“We just want our lives back and these medications can give us that, enabling us to go back to work, or look after our kids instead of having our kids look after us.
“Spending less than $100 million a year to get billions back into the economy looks like a no-brainer from our perspective,” Ms Moore said.
Migraine Australia is calling on the Government to urgently resolve their differences with the drug companies or any other obstacles to listing these medications on the PBS so that migraine patients can access the medication and get on with their lives.
“A year is far too long and the whole situation is simply infuriating. We need all the migraine medications on the PBS now,” Ms Crosby said.
Raphaella Crosby [email protected]
Please report on migraine using the right terminology!
Consult our language guide at www.migraine.org.au/language
More information about CGRP medications: www.migraine.org.au/cgrp
Deloitte Access Economics White Paper on Migraine in Australia: https://www2.deloitte.com/au/en/pages/economics/articles/migraine-australia-whitepaper.html