MS-Perspektive - The Multiple Sclerosis Podcast8 Juli

#174: MS Treatment Access in Australia. Deanna and Rachel on Living with Multiple Sclerosis, Advocacy, and the Future of Ocrevus, Kesimpta & Briumvi

Deanna Renee and Rachel Kerr speak about living with multiple sclerosis in Australia, the importance of lived experience in policy, and the current uncertainty around PBS access to Ocrevus and Kesimpta. Both were diagnosed with MS at 17 and have tried several treatments before finding options that work for them. They explain why treatment decisions should remain between people with MS and their neurologists, and why cost-driven switching can create fear and instability. Deanna also shares how her Community Advocacy Kit helps people speak up, even with limited energy.

You can read the interview here: https://ms-perspektive.de/174-deanna/

Topics covered:

Being diagnosed with MS as a teenager
Why lived experience belongs in policy decisions
PBS access, Ocrevus, Kesimpta and Briumvi
Medication fear and treatment switching
Low-spoons advocacy and community action
Hope, realism and the future of MS research

Resources mentioned:

MS Australia: Your Voice Your Story
Deanna Renee @circularblooms on Instagram, TikTok and Facebook
Community Advocacy Kit via Deanna's bio and show notes

Rachel, if a listener takes only one action after hearing this episode — for themselves or someone they love — what would you hope it is?

Do one thing that helps your voice be heard. That could be writing to a minister, contacting your local representative, sharing an advocacy post, or encouraging someone else to speak up.

And if you are not living with MS yourself, your voice still matters. Family members, partners, friends and colleagues can also help show decision-makers that treatment access affects whole communities, not only individuals.

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This episode is a reminder that lived experience is expertise. And when people with MS speak together, their voices can become impossible to ignore.

See you soon and try to make the best out of your life,
Nele

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