Out of the Dark

We think it’s time migraine came out of the dark. 

Migraine has always been ignored, dismissed as ‘just a headache’, excluded from any list of conditions that governments or health professionals cared about. 

As we now know migraine is a complex genetic neurological disorder and not a headache, it’s high time we started to talk about this very big elephant hiding in the dark. 

Because while we hide behind sunglasses and under doonas, we aren’t able to live our lives. And we aren’t able to fully participate in society. 

Like any other disability, most of us only need a little help to make a big difference and enable us to live our best lives. However, the people who make decisions - politicians, public servants, health professionals and other leaders - can’t help us if we don’t tell them what we need. And a federal election is always a good time to ask!

So we’ve compiled a list. It’s not comprehensive, but we think it’s a pretty good start. 

1. Research First – Understand the obstacles to getting migraine out of the dark

Very little research is conducted on migraine. This is not due to a lack of willing researchers; Australia is home to some of the world’s leading researchers like Professor Peter Goadsby and Distinguished Professor Lyn Griffiths. It is due to a severe lack of funding. Over the last decade, the federal government has only given $8.9m to migraine research. That’s not per year, that’s total. That equates to less than $2 for every Australian living with migraine, or 20 cents per Australian with migraine per year. 

2. A National Strategy – smart, coordinated, national planning to manage migraine out of the dark

In the history of chronic disease management in Australia, the only disease areas that are successfully managed are those with a national strategy. More than just funding, a national strategy is about getting all stakeholders on the same page, developing a roadmap, and focusing the attention of all stakeholders on the goal: getting migraine out of the dark. In the case of migraine, a national strategy will also be the strongest thing we can do to really combat migraine stigma. If the government takes it seriously enough to back a national strategy, everyone else will too.

3. Raising Awareness – Using light to bring migraine out of the dark

There is an enormous amount of work to do in raising migraine awareness. Most people who live with migraine don’t understand what it is, let alone those who don’t live with it. Even some doctors think migraine is a headache! A major coordinated awareness campaign over a number of years will be required to change public perception of migraine. The dividends of doing so will be significant, but this will not be a small undertaking. 

4. Managing migraine at Work – working with employers and others to bring migraine in the workplace out of the dark

All stakeholders in the migraine space acknowledge that we need to work together to address the stigmatisation of migraine at work. People with migraine getting managed out of their careers is very common, and when that happens they often can’t afford the specialist care and medications they need, resulting in a rapid worsening of their condition. And we need to stop our coworkers using ‘migraine’ as their sickie excuse.

5. Access to Care – getting people the medications, doctors, and support they need to manage their migraine and get themselves out of the dark

Most people know Migraine Australia through our advocacy to get new migraine medications on the PBS. We have a lot more to do on this front, but we also need better access to doctors, specialists, more appropriate migraine crisis care, and disability supports. 

6. Community Support – supporting the migraine community to stay out of the dark

Living with migraine can be tough, and most of us need help and support. The best way to support such a large number of people with differing needs in a sustainable way is, however, extremely challenging. It is simply not viable to assign social workers to manage a caseload of five million people – there aren’t that many social workers. Peer support and other smart and strategic services are needed to support our huge community out of the dark. 

These are all big asks, but nothing about migraine is small.

Migraine is a large complicated disorder and it affects literally millions of Australians. So nothing about dealing with migraine is small or simple. However, getting migraine out of the dark will deliver big rewards in the form of:

  • Reducing the financial burden of migraine on both people and government 
  • Improve the health and wellbeing of millions of Australians
  • Help many thousands of people off welfare and back to work, or go back to more meaningful work
  • Reduce absenteeism and presenteeism, helping millions of businesses boost productivity
  • Help to close the gender pay gap
  • Reduce waiting times and demand on everything from specialist neurologists to the emergency department, and
  • Putting billions of dollars back into the economy.

We have launched the Out of the Dark campaign in time for the next federal election, but it will take many years to really bring migraine out of the dark.

Want to help bring migraine out of the dark?

Here's some things you can do!

Want to learn more or get updates?

Want to know where your local candidates for the next federal election stand on migraine?

We'll be launching a candidates survey soon - please check back later

Are you a candidate who lives with migraine? 

We'd love to tell your story! Please nominate yourself for a Thriving with Migraine interview.

 

Showing 1 reaction

  • Raphaella Kathryn Crosby
    published this page 2021-11-02 12:45:04 +1000