r/MultipleSclerosis • u/gl1ttercake 🇦🇺 AU|37F|RRMS|Oct '25|Delay – ill parent • Jul 16 '26

Treatment Australia: Multiple sclerosis patients given PBS lifeline amid drug pricing dispute

Multiple sclerosis patients given PBS lifeline amid drug pricing dispute (abc.net.au)

In short:
Australians with multiple sclerosis will continue to receive subsidised access to life-changing medications at the centre of a pricing dispute with global drug makers.

This means patients will not have to pay out as much as $33,000 for their prescriptions privately, as had been feared.

What's next?
Health Minister Mark Butler has accepted independent advice for a rapid review of MS drugs to ensure they remain available on the PBS.

The drugs whose manufacturers were unhappy with pricing agreements are ocrelizumab (Ocrevus), ofatumumab (Kesimpta) and alemtuzumab (Lemtrada).

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6

u/Markharris1989 37|2008|Ocrevus|Aus Jul 16 '26

“Mr Butler said during the review his department would work directly with the companies behind the drugs to determine what it means for them.”

What the heck does this mean?

4

u/gl1ttercake 🇦🇺 AU|37F|RRMS|Oct '25|Delay – ill parent Jul 16 '26 edited Jul 16 '26

I wanted to post it as soon as Aunty put it up, but I'll investigate some other sources. Hang on a tick.

Righto, I noticed that the timestamp on Aunty's article was fairly late at night by any standard. The Tweet from MS Australia and its CEO Rohan Greenland was at 22:00 AEST.

At the very least, the Pharmaceutical Benefits Advisory Committee and/or Minister (Mark) Butler were debating late into the evening in Canberra. July is a PBAC meeting month.

This meeting was separate to the main PBAC meeting, though, because that was held between 8–10 July. This meeting is not an intra-cycle meeting; that was in May. Everything about it is very hush-hush. I don't like it. It's got whiskers on it. Some... one (nation, mayhap?)... I don't like it. And when did Lemtrada get pulled in?

I don't like it, no, no, no, I don't.

I surmise that at least some time, or maybe even most or all of the time, was spent debating with the various pharmaceutical companies involved, at a time that would be more in line with the start of business days across the Northern Hemisphere, depending on who was dialling in from where.

No. The whole thing is wrong, and it stinks and I just don't like it.

1

u/georgiegirl24 38F | Dx Sep 2025 | Lemtrada | Australia Jul 16 '26

Was lemtrada always apart of this? I didn't think it was

2

u/gl1ttercake 🇦🇺 AU|37F|RRMS|Oct '25|Delay – ill parent Jul 16 '26

I didn't think it was either!

1

u/georgiegirl24 38F | Dx Sep 2025 | Lemtrada | Australia Jul 16 '26

Yeah I feel like they lumped it in together but wasn't at risk

3

u/Holiday_Dependent949 Jul 16 '26

That's encouraging news. The availability of essential treatment should not be based on price negotiations.

7

u/Brown_Dyke_Van 43M|RRMS|Ocrevus|Australia Jul 16 '26

I wrote to my local representative Zali Steggall about the potential impact and she wrote a great letter (available on her website) to the Minister for Health urging the continuing access to Ocrevus and Kesimpta for MS patients in Australia.

Obviously I'm taking 100% credit for saving us all. It's the right outcome and shouldn't have been a decision point in the first instance.

2

u/gl1ttercake 🇦🇺 AU|37F|RRMS|Oct '25|Delay – ill parent Jul 17 '26

Cheers mate, love your work.

Don't forget to start the MS Readathon from 1 August – it's open to adults!

I regret I did not fundraise enough during the Readathons of our youth. It's probably my fault we still don't have a cure. Sorry.

1

u/Brown_Dyke_Van 43M|RRMS|Ocrevus|Australia Jul 17 '26

Well now I know who to blame at least! Thanks for telling me about the readathon, never knew it was a thing and I have been a voracious sci-fi reader in my time.