Cost Effective Venetoclax from India or elsewhere

[dj02]

Hi Everyone. Does anyone have experience successfully importing an effective Venetoclax from India? Here in NZ the drug would cost over $ 100, 000 which I dont have, Thanks

[nuttynannie1947]

I have been on venetoclax for over 2 years. It is subsidized for 2 years by pharmac. Get your specialist on the job.

[MrMidnight in reply to nuttynannie1947]

Gee, how have you managed to get more than two years from a two-year programme? Or are you on a trial? My haematologist told me my chances of getting an extension after two years from Pharmac were zero.I’m in Auckland. Maybe you have a better haem than me!😀

[LeoPa in reply to MrMidnight]

Isn't V a time limited therapy they stop after 2 years anyways?

[MrMidnight in reply to LeoPa]

I have wondered about that. I have assumed that only happens if you are MRD negative.

[MrMidnight]

I am in Auckland and my two years of govt-funded Venetoclax runs out in October. If it’s still working then I’ll have to see what I can do.Do you know whether the amount the drug company charged is capped at around $100k or they continue charging that each year?

(Some cancer drugs are capped after the patient has spent a certain amount.)

I have also been told the makers of Venetoclax go 50:50 with patients but that would still be around 80k for the patient.

[nuttynannie1947]

Because I have P17 I am eligible to stay on Venetoclax. This is a great drug. I just hope it keeps working

[MrMidnight in reply to nuttynannie1947]

Thanks very much for that info. I'm also 17p but none of my docs have suggested I can continue on it after October without paying for it.

What part of NZ are you in? What hospital is caring for you?

[dj02]

I am about to start O/V -O for 6 months, V for 44 weeks... I dont have P17 nor 53 therefore I must pay for the V. $ 400 a day here in NZ . $ 120,000 for 44 weeks. I must import the V-does anyone have any knowledge of advice about which V generic is effective from India-there are quite a few options on websites. I can actually get it tested here in a private lab so that's reassuring. I'm sure other members have been or will be in my situation

[Driverps1 in reply to dj02]

Hi Mate, if you find a cheaper source of V please let me know, i also have to pay full price because of my markers, its a tough life if you need treatment in NZ!

[morepork]

I'm not on Venetoclax (yet) , still on Ibrutinib, but I know two other Kiwis who have been able to continue beyond the original Venetoclax 2 year cut-off date - on "compassionate grounds';One on Venetoclax monotherapy, the other on the subsidised Venetoclax + Rituximab.

Maybe it depends on one's haematologist's willingness to go in to bat for you?

👀