Access Denied

In this episode of ALS to the Moon and Back, Portia and I get stuck into something pretty raw and, honestly, a bit outrageous — what actually happened when I was prescribed Edaravone and then couldn’t get it, even though it was on the PBS and everyone was telling me how “great” it was going to be.

We talk about the quiet side of ALS/MND that doesn’t get spoken about much: the people who haven’t even told their families yet, the pressure to stay small and “not make a fuss”, and why I eventually decided I was not going to just quietly disappear while my treatment fell over around me.

I walk through how I went from hopeful and optimistic with a new prescription… to being told I didn’t “fit the financial model”, to Mark spending weeks on the phone trying to find anyone who could actually deliver a federally funded drug to someone who lives two hours from Sydney. Spoiler: it took writing to the NSW Health Minister and ABC Illawarra before anything really shifted.

We also rewind a bit:

• the early twitching and weakness,
• being treated like a hysterical woman while I knew something was really wrong,
• and then being told I had 24–36 months… just three weeks after my friend Mick died of the same disease.

From there, we touch on what I’m doing to support myself now — things like the Wahls Protocol, supplements, integrative care, and working through long-held trauma in the body. None of it is presented as a cure or advice; it’s simply my way of trying to live well with this diagnosis and give my brain and body the best shot I can.

We finish on something important: fasciculations (all that twitching) don’t neatly map to progression, timelines aren’t guarantees, and there is still room for quiet, stubborn optimism — even with a diagnosis like ALS.

If you’re in Australia and having trouble accessing Edaravone or getting care close to home, ABC Illawarra want to hear from you. Their details are below.

Jen Courtney - ABC Illawarra

E: Courtney.Jennifer@abc.net.au

Ph: 02-4224-5011 or 0407-593967

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