Advocacy

Advocacy is one of the most important responsibilities of Migraine & Headache Australia. Migraine and headache diseases are often misunderstood by the government, the general public, and even some health professionals. This is despite the fact that 4.9 million Australians experience migraine, including over 370,000 people with chronic migraine (Deloitte Access Economics 2018, Migraine in Australia Whitepaper).

Advocacy can help:

• Create awareness about the impact of migraine & headache on individuals, their families, and the economy
• Secure funding for research
• Improve access to medication

Below is Carl Cincinnato, Director of Migraine & Headache Australia, speaking on ABC Live News with reporter Ros Childs in March this year.

Many of the resources on our website can help people understand how to better manage their migraine or headache. Reliable and medically reviewed information is essential but it’s not enough to address the inequalities that many in our communities face. More research funding is required to move closer to a cure. Broader awareness and public understanding will also bring down the stigma and skepticism that many in our community face from a burden that often remains invisible. Public understanding can also make workplaces more accomodating and personal relationships more accepting. With your support, we can address these issues and improve the quality of life for those people living with migraine or other types of headache disease.

Securing research funding

Migraine & Headache Australia is a division of the Brain Foundation. The Brain Foundation is a nationally registered charity dedicated to funding world-class research into brain disorders, disease and injuries. We aim to fund one project each year into migraine or headache, so that doctors and patients have access to the latest research. Advocacy plays a important role in securing funding, with the scientific community as well as with potential donors. 

We are grateful for the generosity of individual and corporate donors, whose funding we rely on for our research grants. There are many factors that enable us to fund research each year. We have built relationships with industry stakeholders so that we can highlight the needs of the migraine and headache community. Some of these stakeholders include organisations such as the Australian and New Zealand Headache Society (ANZHS), representatives from a variety of government departments, other nonprofits, and some manufacturing companies.

By engaging with these different groups, we can advocate for research on a number of levels. For example:

• Neurologists and the scientific community: encouraging people to submit research proposals about migraine and headache 
• Government: requesting government-funded research studies (such as epidemiological studies about the impact of headache disorders)
• Manufacturing companies: research into new drug development and clinical trials 

You can find a list of grants we have funded in the past here: Where does your money go?.

Access to Treatment

Migraine and headache disorders can be unresponsive to some treatments. Some people respond to medications differently, and it can be hard to predict what will work for you. There is also no cure for migraine and most other headache disorders. Triggers can vary and ongoing management is often required if attacks reoccur.  Another obstacle is the cost or availability of certain medications – something that many people with migraine have faced with the calcitonin gene-related peptide antibodies (CGRPs). 

The CGRP antibodies are a new generation of migraine preventive and the first medication that has been designed specifically for migraine. Most other preventives were initially supposed to treat other conditions (i.e. epilepsy, hypertension or depression), which could sometimes cause side effects. Unfortunately, prior to subsidisation on the Pharmaceutical Benefits Scheme (PBS), CGRPs could cost people hundreds of dollars. As of June 2021, Emgality (galcanezumab) has been added to the PBS after years of work including community submissions, advocacy and negoigations. 

This is just one example of people with migraine having to fight for access to life-changing medications. It happened in the past with onabotulinum toxin A (Botox), and will likely happen again in the future with other new treatments. 

Our advocacy in the lead-up to CGRPs being approved has involved:

• Representing the patient community at a parliamentary hearing into the approval processes for new drugs 
• Calling for people to make personal submissions to the Pharmaceutical Benefits Advisory Committee (PBAC)
• Making our own formal submission to the PBAC as well as keeping a dialogue with the PBAC.
• Creating a Chronic Migraine Strategy which included allocating funding for CGRPs

We will continue to represent the patient community and hope to see other safe and effective treatment options added to the PBS in the future.

See the latest information on CGRP approvals on the New Treatments Update page.

Advocacy resources & achievements

Your story plays an important role in increasing awareness, improving access to treatments and fighting stigma. You can fill out this form or contact us if you would like to be contacted for advocacy opportunities in the future.

The October budget announced that $600,000 will be allocated towards migraine, part of which will go towards Migraine & Headache Australia. This will fund some of the education goals we included in the Chronic Migraine Strategy.

We are often approached by Australian Universities and research institutions to help them find volunteers for their research. Find current projects here, or subscribe to the Headache Register to receive email updates.

In January 2020 we prepared a strategic document to submit to the Australian Treasury Department for consideration in the next budget. It covered the cost of chronic migraine & presented possible solutions.

Migraine & Headache Australia represented the patient community at a Hearing for the Parliamentary Inquiry into the approval processes for new drugs, discussing how delays in drug listings on the PBS have affected our community.

Migraine costs Australia a staggering $35.7 billion dollars each year. This report provides a groundbreaking insight into the disease affecting 4.9 million people and their families, employers, the government and our health system.