Ever considered writing to policymakers eg: your local member, the Federal and State Health Ministers? But don’t know where to start or perhaps don’t think it will matter?
Last year HA did an “Awareness Project”, you can read more about it here
During the 2022 IH & Narcolepsy Education Day, we discussed what was needed for Idiopathic Hypersomnia (IH), not just in Australia, but around the world. Prof Ron Grunstein and Dr David Cunnington's presentations both centred around what the current IH challenges are and how we can address them. Prof Yves Dauvilliers (a leading researcher from Montpellier, France) was also one of our speakers. His 5 year goal is to get IH to the place Narcolepsy is now, ie: undertaking more meaningful research which leads to a better understanding of IH, its cause/s, and more appropriate treatments.
The message was clear - what is needed for IH is universal. IH needs awareness.
So I decided to create a project whereby I would help people write letters that were sent to their local member with copies going to their State and the Federal Health Ministers. I also got all of the addresses that were necessary and put people’s words into letter format that included information about IH – so all people had to do was provide me with their powerful words. Over 50 local members in various states and territories received letters and copies went to all State and the Federal Health Ministers.
The Federal Health Minister’s office replied to the first letter that they received but after getting so many more they must have decided they needed to address the source.
Dr Leanne Laajoki, Director – Chronic Conditions Policy Section Cancer, Hearing and Chronic Conditions Division | Primary and Community Care Group. Australian Government Department of Health and Aged Care, reached out to me and invited me to meet her and her ‘relevant executive’. I asked two other people living with IH, Amanda Vernon and Tiffany Townsend to come to the meeting with me because I thought it was important that they meet people living with IH, other than me.
We didn’t expect miracles from the meeting. We fully understand the challenges and the limitations particularly with regard to medication access and availability and we know why those challenges are not easily overcome. The goal of the project was “Awareness” and we definitely achieved that. Dr Laajoki and her executive and the politicians that received letters had never heard of IH before. They not only now know that IH exists they know how it impacts the lives of those trying to live with it, and that’s important.
But we must not let up.
If you would like to write to your local member but don’t know where to start or would like some advice, I would be more than happy to help you. Reach out to me at info@hypersomnolenceaustralia.org.au. Let me know who your local member is (I have templates for local members and the various State and Federal Health Ministers), if you don’t know that’s ok just let me know your postcode.
Confident about writing a letter yourself but just need some more technical information about IH to add to the letter? Its always a good idea to add supporting data to personal words. Click here to download supporting data about IH.
If you do write to policymakers please let me know, info@hypersomnolenceaustralia.org.au It's helpful for me when dealing with policymakers and stakeholders eg: doctors and pharmaceutical companies, to know which of them have received communication from people living with IH. Michelle Chadwick Founder Director - Hypersomnolence Australia Chairperson - Sleep Disorders Australia