Catch up on the latest NEWS - July 2023
We have shared quite a bit of information recently on our social media and website blog so I thought I would share some of it all in the one place in case you missed it. It includes the all the latest in AUSTRALIAN RESEARCH NEWS!
We are getting ready for the Worldwide Idiopathic Hypersomnia Awareness Week. 4-10 September 2023
Sharing your story is powerful. It can change perceptions, encourage understanding, and provide hope to others. Sharing your experiences not only helps to raise awareness and educate others about what living with narcolepsy is like, it can also be empowering and can help light the way for those who are walking a similar path.
We are interested in all forms of expression. If you would like to share your story or you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience living with Idiopathic Hypersomnia we would love to share it.
Send your stories or other perspectives to email@example.com by 18th August and we will include them in our Living with Idiopathic Hypersomnia series for this year's Idiopathic Hypersomnia Awareness Week - 4-10 Sept 2023.
How to access Xyrem (Sodium Oxybate) in Australia - and why is Xyrem not TGA registered (approved) or PBS listed? Learn more here We encourage people diagnosed with Idiopathic Hypersomnia to speak to their doctor about sodium oxybate formulas like Xyrem and the newer versions (Xywav and Lurmyz etc) and these factsheets will definitely help them with that conversation however, we do know that it is much more difficult to get a doctor to prescribe sodium oxybate to someone with IH compared to someone with Type 1 Narcolepsy (Narcolepsy and Cataplexy).
You will note in the summary of the Why is Xyrem not PBS listed or TGA approved? factsheet it states "While it isn’t entirely out of the question that a sponsor will ever attempt to register drugs for disorders of hypersomnolence with the TGA again, under the circumstances, it is highly likely that sponsors in future will apply for a very specific indication, ie: Narcolepsy with Cataplexy (Narcolepsy Type 1) only." This advice came from speaking to pharmaceutical companies and also the current President of the Australasian Sleep Association (ASA), Dr Sutapa Mukherjee and the ASA's Clinical Chair, Dr David Cunnington.
Resources on a range of topics relevant to Living with Idiopathic Hypersomnia and Narcolepsy. Check back here regularly as we add to our library. https://www.hypersomnolenceaustralia.org.au/resources
Ever considered writing to policymakers eg: your local member, the Federal and State Health Ministers?
Last year HA did an “Awareness Project”, you can read more about it here.
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. Learn more
Advocacy & Awareness Registry
We invite you to join our Central Disorders of Hypersomnolence (CDH) Advocacy and Awareness Registry. The registry is a unique resource for those in the Narcolepsy and Idiopathic Hypersomnia communities. Here, you can register for opportunities to participate in advocacy and awareness initiatives to support causes that matter to you. Whether you're interested in research, raising awareness, providing support, or taking action, this is the place to start.
World Narcolepsy Day (WND) is September 22. Our Central Disorders of Hypersomnolence Consumer Forum representative and Living with Narcolepsy Community Group facilitator, Di Spillane and I have been busy on an awareness project for WND. There will be information images and peoples experiences and stories to share. Check here over the next few weeks to see things taking shape. Also, keep an eye on our social media and news page for details of a unique awareness event to be held on the Gold Coast that Jana Chad is working on!
Living with Idiopathic Hypersomnia & Living with Narcolepsy Online Community Groups
AUSTRALIAN RESEARCH NEWS
There are a few research projects in various stages ie: design, recruitment or at later stages.
Physical Activity and Hypersomnolence - this study is being done by researchers at the Woolcock Institute of Medical Research and the University of Sydney. It has completed recruitment. Thank you to everyone that volunteered to take part! Jeff Doukakis is steadily getting though screening and the surveys. I am one of the authors of this study so I look forward to seeing the results and sharing them with you.
Insights from a A 10-Year Australasian Consumer Data Registry Study- this study is one that I am particularly proud of because it uses data that has been collected by HA over 10 years. I started the IH Patient Registry 10 years ago because there was no registry in Australia for IH. The aim of the registry was always to aid research and to assist us to identify key areas of concern that need addressing so I am glad to see this happening. I am also working with researchers at the Woolcock and the University of Sydney on this paper. We are working on the abstract now and I look forward to sharing it with you soon. If you have been diagnosed with IH and haven't joined the IH Patient Registry please consider doing so. Click here for more information.
Orexin agonists for Narcolepsy and Idiopathic Hypersomnia - this is a series of studies that are also being done by the Woolcock. They will be doing two trials. One with narcolepsy type 1 and then another one that will include people with narcolepsy type 1, type 2 and also idiopathic hypersomnia. They have started recruiting people for these trials. You can read more about it here.
Cognitive Behaviour Therapy for Disorders of Hypersomnolence - this study is currently in the design stage. It is being lead by Dr Sara Winter and also includes researchers from the Woolcock and myself. Sara was a presenter at our IH and Narcolepsy Education Day last year and she also gave a talk at our March Living with IH catch up. The aim of this study is to co-design, test, and disseminate a Cognitive and Behaviour Therapy intervention for Hypersomnolence conditions (CBT-H). Once approval and funding is achieved we will start engaging with the disorders of hypersomnolence (eg: IH and narcolepsy) communities. Ketogenic diet for Disorders of Hypersomnolence - this one is in the very early stages so I can't share too much about this one just yet - stay tuned!
I look forward to sharing with you more information about these studies as they come further along. Please note that any research interest in narcolepsy and particularly idiopathic hypersomnia is a huge step forward compared to our situation just a few short years ago when there was next to no interest (there certainly wasn't any in IH).
One of the reasons funding applications get knocked back is because the National Health and Medical Research Council (NHMRC) doesn't trust that we have IH/N experts in Australia to do the studies and this is because there are so few papers on IH/N published by Australian researchers, ie: its got to start somewhere and I'm glad to see it finally has! So please do your best to engage in what studies you can. Michelle Chadwick Founder/Director - Hypersomnolence Australia Chair - Sleep Disorders Australia Creator/Project Manager - Worldwide Idiopathic Hypersomnia Awareness Week