Today in the House of Representatives, Health Minister Greg Hunt accused Eli Lilly of running an ‘AstroTurf’ campaign because they do not like the conditions given in the Pharmaceutical Benefits Advisory Committee’s positive recommendation for Emgality, with a reference to ‘patient groups’ and ‘migraine awareness week’.
Migraine Australia is the only patient group in the migraine space, and we categorically reject any assertion that we are a front for Eli Lilly, or any of the other companies that make medications for migraine. Further, Migraine Australia Ltd was only registered as a charity this week, and has not yet received deductible gift recipient status from the ATO. This company has never taken money from anyone.
Migraine Awareness Month was planned from last year to align with our international colleagues. This includes the ‘151 Faces of Migraine’ campaign which has been so effective in raising awareness of the burden migraine can have on a person’s life, and the phenomenal difference the new CGRP medications are making to people’s lives.
The month kicked off with the launch of a Change.org petition asking leaders of both major political parties to commit to making migraine a national priority. This petition mentions the CGRP medications not being listed on the PBS, but Migraine Australia has never, and would never, advocate for just one of them – we need all of them. Different people respond to different medications, and we need every tool in the toolbox to effectively manage migraine.
Migraine Australia founder and chair, Raphaella Kathryn Crosby, said Minister Hunt’s comments were simply insulting. “Everything we have done is by the hard work of many volunteers, all of whom are very ill people battling migraine.”
“Migraine is a serious, genetic, spectrum disorder, the biggest cause of disability in people under 50, and a massive burden on our economy and health system,” Ms Crosby explained.
“Listing the new CGRP medications on the PBS will save the budget money, get people off welfare and back to work, and let them look after their kids again.”
“Absolutely, the Government should negotiate with the companies for the best price.”
“But the PBAC was fundamentally wrong in rejecting the Aimovig application, and requiring that no new tax payer money be spent on Emgality and Ajovy in their positive recommendations. That’s a budget decision, not a health decision, and therefore not a decision PBAC should be making,” Ms Crosby said.
More information about Migraine Awareness Month is available from the Migraine Australia website at www.migraineaustralia.org/mam2020 or follow the #mam2020 hashtag on social media.
Migraine is not just a headache
Migraine is a complex, genetic, incurable neurological disorder. Migraine is typically characterised by any combination of:
- moderate to severe throbbing or pulsating headaches
- nausea and vomiting,
- sensitivity to light, sound, or smells.
After a period of warning symptoms known as prodrome, the severe acute (or headache) phase of a migraine attack lasts up to 72 hours, followed by potentially weeks of prodrome or ‘migraine hangover’ symptoms. About a third of patients also experience ‘migraine aura’ before the acute phase, which can include a range of unusual neurological symptoms such as pins and needles, seeing spots or lines, or having difficulty talking.
The economic cost of migraine in Australia has been estimated by Deloitte Access Economics at $35.7 billion annually. Per person, the cost of migraine is $21,706 per chronic migraine patient and $6,137 per episodic migraine patient.
CGRP migraine treatment is a new type of treatment used to prevent and treat migraine attacks. The medications block a protein called calcitonin gene-related peptide (CGRP). CGRP may cause inflammation and pain in the nervous system of people who have migraine attacks.
There are currently three medications available, and a number of others in development, to prevent migraine based on blocking CGRP. None are currently on the PBS.
Currently available in Australia:
- erenumab (Aimovig) made by Novartis has been withdrawn from the PBS process after being rejected by the PBAC twice.
- fremanezumab (Ajovy) made by Teva received a positive recommendation from the PBAC in March 2020.
- galcanezumab (Emgality) made by Lilly received a positive recommendation from the PBAC in July 2019.
Migraine Australia is a patient advocacy organisation founded in late 2019 to support and fight for all Australians living with migraine and their families.
A language guide on how to discuss migraine has been produced by the US based Coalition of Headache and Migraine Patients (CHAMP) and is available at https://headachemigraine.org/wp-content/uploads/CHAMP-Language-Guide-Web.pdf