Living with PMF

[Gipsy123]

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An Australian friend sent me this link: its a spot on description of what daily life is like for people with primary myelofibrosis. . I hadn’t realised that my fragile skin was part of it. Momelotinib was invented by an Australian ,team it seems , and had only just been approved for use there , which inspired her to send it.

Its already helped some of my friends and family understand. Might help medical teams too.

[Spanelmad]

Thank you

[lizzziep]

I’m very lucky that I have very few symptoms of MF, however I do have the constant worry of progression, I find that the worst thing.

[BeOutside]

Thank you. I don’t always remember that my PMF might not be as bad as others. This was a good reminder!

[Phantasia]

Yes it was created here in Melbourne, Australia hence the "mel" incorporated into the name.A little frustrating that a drug created here wasn't approved here until after release in the US and Europe. A population issue I assume. Not enough patients in Australia for clinical trials.

Next step PBS approval. That will allow patients to access it at a subsidised cost.

Australia can certainly punch above it's weight in medical research.

Very happy for this lady and for all those whose lives have been improved by this med.

Thanks for posting the link.

[Gipsy123 in reply to Phantasia]

Hi Phantasia

I thought that clinical trials were international: why does it make a difference to momelotinib being approved for use in Aus whether Aus patients took part in the trials?

Agree abt Aus punching above its weight in all sorts of spheres- I have Aus citizenship as well as UK - tho not EU, alas

[Phantasia in reply to Gipsy123]

I was just surmising. Australia though wouldn't have many patients with MF to use for clinical trials. Probably more to do with our small population size of MPN patients not making it a viable market. It shouldn't come down to that but pharmaceuticals are still a "product." It was ages before Pegasys was approved here and that was down to the advocacy of a PV patient. Hydroxyurea was the only medication available on the PBS for MPNs.I think the TGA also takes a long time to approve new drugs. The US approved it in September '23, Europe a short time later. Very frustrating for Australians to have to wait so long when it was developed here.

I am interested in Bomedemstat as I have ET and can't tolerate Hydroxyurea. I think it's in Phase 3 trials.

[Gipsy123 in reply to Phantasia]

I hope that the potential skin cancer effects of Rux and ( likely) momelotinib get publicity in Australia-took a while to be recognised here in UK. But Aussies are educated abt sun burn and skin lesions in a way that Brits aren’t. Slogan used to be: slip, slap slop.