New government, new hope??

[Kiwidi]

We have a new coalition government in Aotearoa NZ ( whoops I shouldn’t say that!) which generally seems to be very right wing and seems to be looking after the ‘haves’ rather than the ‘have nots’ However one of the things that seems to have come from this is that these conservatives are aware that we are so far behind the rest of the world in funding modern meds. I didn’t vote for them but if that’s all that comes out of this coalition fiasco I’ll take it. Kiwis on here will understand what I mean!

[Vindicatrix]

That was interesting, Kiwidi, one might ask why your country is so far behind the world in medical funding.

Did your previous government take their eye of the ball. It sounds like you think that the new, Conservatives. may improve things.😀

All the best from 'Sconny Botland'.

[Kiwidi in reply to Vindicatrix]

Thank you. We have an agency called Pharmac that is unwieldy and very inefficient. It is responsible for approving all meds. On average it takes them 7.5 years to go through the process despite the fact that most are used as regular treatment in other countries ( Australia is miles ahead) Successive governments have not acknowledged the impact this is having on patients and our Heath System. It’s a bit of a mess that hopefully the new coalition can sort out. Pharmac needs a complete overhaul and much more money needs to be made available so we can catch up with the rest of the world.

[Anotherpuffin]

Hi Kiwidi, I'm curious on what you're missing out on in New Zealand. Can you please elaborate on what medications/treatments NZ does not offer for CLL that are generally available elsewhere? I'm newly diagnosed and thinking about moving back to NZ in the next couple of years so need to get up to speed on what the medical support will be like. I did see that there is a trial for CAR T-cell therapy underway. Thanks.

[Kiwidi in reply to Anotherpuffin]

The first line of treatment in NZ is chemo. If that fails within 3 years the next line is venetoclax (funded for 2 years) if you relapse within 3 years you then get funded ibrutinib. The only exception is if you are TP53 or have 17p deletion in which case you miss out on the chemo.

Many people who self fund import their meds directly from India or Bangladesh using a prescription from their specialist. This is legal at the moment but the new government plans to repeal the Therapeutic Products Bill (2023) which may make it illegal.

I suggest you take a look at out CLL Advocates NZ webpage or join our FB group. It will give you a good indication as where we are at compared with many countries in the world. Depending on where you live now and what treatment is available there I’d think pretty carefully before returning. I am seriously considering moving to Australia if/when I need treatment. Good luck!

[Anotherpuffin]

Thank you for your very helpful reply. I live in the US currently so I'm definitely weighing things up. I love living where I do but there is a lot of pollution. My Hematologist Oncologist is extremely positive and telling me I may never need treatment (13q14) but I'm 48 yrs old so I think that raises the possibility I'll need treatment at some point. There's a steep learning curve with this diagnosis isn't there. I've had a look at the CLL Advocates web page you suggested and this is exactly what I am looking for! Thanks again and all the best!