Venetoclax is being considered for approval in Australia - Aussies, please support this application! Closing date 8th Feb

[AussieNeil]

Venetoclax for relapsed/refractory CLL will be considered at the next Pharmaceutical Benefits Advisory Committee (PBAC) meeting in March, 2017 for consideration for inclusion on the Pharmaceutical Benefits Scheme. (PBS)

Patients, family members, health care organisations, clinicians, researchers and other stakeholders are welcome to provide feedback to PBAC via their online portal.

health.gov.au/internet/main...

Please don’t underestimate the value of your feedback.

NOTE: The CLOSING date is next Wednesday 8th of February, 2017

Thanks to Sharon Winton, CEO, Lymphoma Australia for bringing this to my attention.

Neil

[UK-Sparky]

Fingers crossed Neil!

[Debinoz]

Thanks Neil. It's such a great drug and I'm desperate to be able to stop flying to England from Australia to access it! Hope you're well. The question for me is when to stop taking it. I had confirmed MRD negativity in December's bone marrow biopsy - I had probably reached it a few months earlier. I'd like to stay on it for a bit longer to make sure it's cleaned out everything they can't detect but the travelling is getting tiresome (10 return flights in the past 14 months!). I'd be amazed if this gets listed by the PBS on its first outing but live in hope. Thanks for sharing the link.

Deb

[catnapcrew in reply to Debinoz]

Fingers xd. You sure have clocked up the miles for this drug and are living proof of its effectiveness. Thanks also to your earlier post on the combo trial, I'm on it. Cheers, never would have known about it if you hadn't shared.

[Debinoz in reply to catnapcrew]

Brilliant news - I think this is the best trial out there and dare I say it might even be curative. So happy for you.

Deb

[eggemma in reply to Debinoz]

Dear Deb, I am so pleased that you are feeling better. I have been on Idealisib for past 24 months. My results are improving, almost normal. I have been told that I have to take Idealisib for a long time. I am not happy about this. I would like to stop taking medication. did you have bone marrow biopsy under general anaesthetic? I hope Ventoclax will get listed by PBS.

good luck Emma

[Debinoz in reply to eggemma]

No only local anaesthetics and I've had 12 of them and counting! Will be having them every 3 months or so at personal request to track MRD - I want to see if I can come off the drug but for the time being it's all about making sure I can get back onto it if I do! I'm pleased you're doing so well Emma.

[eggemma in reply to Debinoz]

Dear Debinoz, thank you so much for your reply. I have the same problem as I do not want to take idealisib for the rest of my life. I want to come off but the big question: if I need the drug later on whether I can get it. i would be so grateful if you could let me know how you are getting on. I wish you good luck. Emma

[Hidden]

We have the Walter and Hall Institute based in Melbourne to thank for Venetoclax and their research on the BCL-2 protein.

[Debinoz in reply to Hidden]

Yes and I met Professor David Vaux who was responsible for that in 1988 at Abbvie's conference in Sydney last week and I am speaking at a donor event at the WEHI next month - they're working on what comes next for us there too. We have so much to thank them for.

[Hidden in reply to Debinoz]

We should start an email campaign to get Professor David Vaux awarded the Nobel Prize for medicine.

[catnapcrew]

Ta for bringing to our attention. Feedback submitted and got family on the job. Fingers and toes xd.

[AussieNeil Partner Administrator]

On behalf of my fellow Aussies, thanks to those that have submitted their support for a non-chemo CLL treatment option! Plenty of time yet to respond if you haven't yet done so!

[Debinoz]

Just a quick addendum Neil to encourage overseas submissions - you don't have to live in Australia and these do help make our case. Takes about 2 mins via the link and us Aussies will be very grateful!

[PaulaS Volunteer in reply to Debinoz]

Thanks for explaining that, Deb. I thought it was just for people living in Australia. Will do it...

Paula

[Debinoz in reply to PaulaS]

Thanks Paula x

[Natali]

Any updates on this and how it went in March?

[AussieNeil Partner Administrator in reply to Natali]

Only VEMURAFENIB (monotherapy) for Unresectable Stage III or Stage IV malignant

melanoma was recommended for listing on the PBS.

[Natali in reply to AussieNeil]

😕 thanks for the update AussieNeil. Does it now keep getting resubmitted for consideration or is there a waiting period before it can be reviewed again?

[AussieNeil Partner Administrator in reply to Natali]

Generally the process is the PBAC provides feedback on the proposal, explaining where it lacks sufficient evidence and the drug company may resubmit. Keep an eye on: pbs.gov.au/pbs/home