Aimovig on the PBS and more support for migraine

The issue

TL:DR - We're asking both sides of politics to show some #migrainelove and commit to funding for migraine research and awareness, and to putting new medicines that prevent migraines on the PBS (the first one is called Aimovig). And we're asking for those commitments before the Australian Federal election on May 18, so those who want to vote on this issue know who to vote for. Please sign and share!

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Migraine affects an estimated 5 million Australians. That's double the number of people living with asthma, 5 times as many people with diabetes, 10 times as many people living with cancer or dementia. It costs the economy an estimated $35 billion a year

Migraine is an ignored, underfunded and misunderstood condition. It is not 'just a headache'. It is a debilitating and disabling condition which disproportionately affects working age women. We don't begrudge other unwell people the support they get, but yet another budget and (by the looks) another election campaign where we don't even rate a mention is not ok. Migraine is the least-respected, most-neglected and worst-managed medical disorder worldwide, and we're tired of being ignored. 

Far too many migraine sufferers in Australia are permanently disabled. Especially those with chronic migraine (more than 15 headache days per month), migraine with aura (seeing lights or blind spots, other sensory disturbances or speech issues), hemiplegic migraine (which causes weakness and numbness down one side), and brainstem migraine (which can involve everything from loss of balance, hearing and speech issues, to loss of consciousness). 

We can't drive, work, take care of our kids, or have anything that resembles a normal life. Reliant on a disability pension or family support, we are dumped on the garbage heap of the nation and forgotten. 

A new class of medications based on science around the role of calcitonin gene-related peptides (CGRP) has given us the very first ray of hope in getting our lives back. The first of four drugs in the new generation of migraine preventative treatments, Aimovig, is being trialed by many chronic and severe migraine sufferers with truly amazing results.

We can drive again. We can work again. We can take care of our kids again. 

But the cost is $800 per injection. We need Aimovig to be on the PBS now so we can get off our disability pensions, stop being a constant drain on the health system, and get our lives back. 

Far too many have trialed Aimovig for the 3 months that Novartis has offered it for free, had fantastic results, and then slid back into the darkness of relentless migraines because they can't afford the $800 per injection. We need this medicine. Now.

We also need funding for migraine research and awareness. We don't understand so much about our condition, because the research simply isn't done. There has not even been a decent study on how many Australians are affected by migraine or how much money it rips from the economy: statistics are based on overseas studies. And a campaign to raise awareness of the condition is desperately needed, so that everyone can understand how serious it can be (particularly the increased risk of stroke), that common treatments like codeine can make it worse, and that there are migraine specific treatments available, including Triptans and the new generation CGRP preventative treatments. 

To whomever the Prime Minister and Health Minister is after the election, we need:

- Aimovig on the PBS urgently
- Priority listing to the other CGRP treatments such as Emgality and Ajovy as they become available
- Funding for research and awareness of migraine

And we'd like you to commit to these three things as part of your election campaign so we know who to vote for. #NoAimovigNoVote

If you suffer from severe or chronic migraines we recommend the following Facebook groups:

Australia - Aimovig migraine treatment group
https://www.facebook.com/groups/483047905440716

Chronic migraine awareness Australia and NZ group https://www.facebook.com/groups/CMAAussieNZ

Australia Hemiplegic and Chronic Migraine Support Group
https://www.facebook.com/groups/australiahemiplegicmigraines/

 

Victory
This petition made change with 3,400 supporters!

The issue

TL:DR - We're asking both sides of politics to show some #migrainelove and commit to funding for migraine research and awareness, and to putting new medicines that prevent migraines on the PBS (the first one is called Aimovig). And we're asking for those commitments before the Australian Federal election on May 18, so those who want to vote on this issue know who to vote for. Please sign and share!

----------------------------------------

Migraine affects an estimated 5 million Australians. That's double the number of people living with asthma, 5 times as many people with diabetes, 10 times as many people living with cancer or dementia. It costs the economy an estimated $35 billion a year

Migraine is an ignored, underfunded and misunderstood condition. It is not 'just a headache'. It is a debilitating and disabling condition which disproportionately affects working age women. We don't begrudge other unwell people the support they get, but yet another budget and (by the looks) another election campaign where we don't even rate a mention is not ok. Migraine is the least-respected, most-neglected and worst-managed medical disorder worldwide, and we're tired of being ignored. 

Far too many migraine sufferers in Australia are permanently disabled. Especially those with chronic migraine (more than 15 headache days per month), migraine with aura (seeing lights or blind spots, other sensory disturbances or speech issues), hemiplegic migraine (which causes weakness and numbness down one side), and brainstem migraine (which can involve everything from loss of balance, hearing and speech issues, to loss of consciousness). 

We can't drive, work, take care of our kids, or have anything that resembles a normal life. Reliant on a disability pension or family support, we are dumped on the garbage heap of the nation and forgotten. 

A new class of medications based on science around the role of calcitonin gene-related peptides (CGRP) has given us the very first ray of hope in getting our lives back. The first of four drugs in the new generation of migraine preventative treatments, Aimovig, is being trialed by many chronic and severe migraine sufferers with truly amazing results.

We can drive again. We can work again. We can take care of our kids again. 

But the cost is $800 per injection. We need Aimovig to be on the PBS now so we can get off our disability pensions, stop being a constant drain on the health system, and get our lives back. 

Far too many have trialed Aimovig for the 3 months that Novartis has offered it for free, had fantastic results, and then slid back into the darkness of relentless migraines because they can't afford the $800 per injection. We need this medicine. Now.

We also need funding for migraine research and awareness. We don't understand so much about our condition, because the research simply isn't done. There has not even been a decent study on how many Australians are affected by migraine or how much money it rips from the economy: statistics are based on overseas studies. And a campaign to raise awareness of the condition is desperately needed, so that everyone can understand how serious it can be (particularly the increased risk of stroke), that common treatments like codeine can make it worse, and that there are migraine specific treatments available, including Triptans and the new generation CGRP preventative treatments. 

To whomever the Prime Minister and Health Minister is after the election, we need:

- Aimovig on the PBS urgently
- Priority listing to the other CGRP treatments such as Emgality and Ajovy as they become available
- Funding for research and awareness of migraine

And we'd like you to commit to these three things as part of your election campaign so we know who to vote for. #NoAimovigNoVote

If you suffer from severe or chronic migraines we recommend the following Facebook groups:

Australia - Aimovig migraine treatment group
https://www.facebook.com/groups/483047905440716

Chronic migraine awareness Australia and NZ group https://www.facebook.com/groups/CMAAussieNZ

Australia Hemiplegic and Chronic Migraine Support Group
https://www.facebook.com/groups/australiahemiplegicmigraines/

 

The Decision Makers

Catherine King
Shadow Minister for Infrastructure, Transport and Regional Development
Responded
Dear Raphaella (and petition signers), Thank you for your petition regarding the listing of medications, in particular Aimovig for the treatment of miagraines, on the Pharmaceutical Benefits Scheme (PBS). Labor created the PBS, and we want all Australians to have affordable access to recommended medicines. That’s why Bill Shorten recently announced Labor’s Affordable Medicines Guarantee – a commitment to list all drugs that are recommended by the independent experts on the PBS. A Shorten Labor Government will also deliver faster access to cheaper medicines by endorsing changes to the Pharmaceutical Benefits Scheme. As you may be aware, listing drugs on the PBS is a three-step process. First, medicines must be judged to be safe and effective by the Therapeutic Goods Administration (TGA). The TGA is tasked with safeguarding the health of Australians through effective and timely regulation of therapeutic goods. Every medicine that is registered for use in Australia by the TGA must be used in accordance with the conditions and criteria under which it is registered. For each medicine this information is outlined in a Product Information Statement, which can be accessed here: http://tga-search.clients.funnelback.com/s/search.html?query=&collection=tga-artg. Second, drugs must be considered by the independent Pharmaceutical Benefits Advisory Committee (PBAC). Drugs can only be considered by the PBAC following nomination by their sponsor, usually the drug manufacturer. The PBAC will consider the drug in terms of its effectiveness and cost, including in comparison to other available treatments. An application for the listing of ERENUMAB, Injection 70 mg in 1 mL single dose pre-filled pen, Aimovig for the treatment of migraine was considered by the PBAC at the July 2018 meeting. The review of the application and the PBAC’s decision not to recommend Aimovig can be seen on the PBS website here (scroll to section seven): http://www.pbs.gov.au/industry/listing/elements/pbac-meetings/psd/2018-07/files/erenumab-psd-july-2018.pdf For an application drug that has previously been considered and rejected by the PBAC, the sponsor is able to address the concerns raised in the PBAC’s report and resubmit for further consideration. Norvartis made a second application to the PBAC for the listing of Aimovig at the March 2019 meeting of the PBAC. The PBAC did not recommend this listing of Aimovig on the PBS at this meeting. Norvatis is able to make another application to the PBAC for the listing of Aimovig. Norvatis has indicated they are working towards this task but have not specified a timeframe. Contact details for Norvatis can be found here: https://www.novartis.com.au/about-us/contact-us Finally, if PBAC recommends a listing, the government of the day must negotiate with the sponsor to list the drug on the PBS. Unfortunately, the Liberals have admitted there are at least 18 drugs recommended by PBAC that they will never list. And at last count, there were dozens more drugs that had been recommended by the PBAC but not yet listed on the PBS. In contrast, a Shorten Labor Government will list all drugs recommended by the PBAC, ensuring that all Australians can access the medicines that they need. Please be assured, should the PBAC in the future recommend the listing of Aimovig, a Shorten Labor Government would act to make this happen as quickly as possible. I hope this information is of assistance to you. Yours sincerely, Catherine King Shadow Minister for Health and Medicare
Greg Hunt
Minister for Health
Scott Morrison
Federal Member for Cook
Bill Shorten
Shadow Minister for the NDIS and Government Services

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Petition created on 4 April 2019