Lobbying for more meds and online support to New Zealanders

Huntsco

Hello there

Did you know that in New Zealand we do not have access to any of the following funded meds:

Perjeta, Kadcyla, Afinitor, Halaven, Abraxane or for bones Zoledronic acid or denosomab for example!

We need to work with our consumer groups, our specialist oncology interest groups, our MBC folk and get more action!

Do any of you have any tried and true advice before we bark on this?? Any important strategies or arguements we can put across to our Government. 

I hope this is ok Moderators to post but we also have a Facebook page for MBC New Zealanders for online support  eg day to day support, questions etc so this is a call to anyone out there in these forums to check it out if you are interested. We will probably use this page to update any progress on hopefully getting more meds funded. A lot of us are running out of treatment options

The best thing to do is go to BCAC
– Breast Cancer Aotearoa Coalition for information and request to join up  http://www.breastcancer.org.nz/node/600

Otherwise I  have found these forums invaluable, learnt heaps and told a number of people about it here in NZ.

Thanks

leggo

I don't know if it'll make you feel any better, but it's the same in Canada.  We have access, but the stipulations for it's use are ridiculous. The list is like 20 bullet points long. The one that struck me as particularly insane for perjeta  is "had not received prior chemotherapy agent for metastatic or recurrent breast cancer". Is there really anybody out there that hasn't received prior treatment as of 2013, when it became available for use? Nuts. I suspect the 16k price tag has something to do with it. Cost vs. Benefit had to be taken into account. I suspect New Zealand is similar...you can get it, but you're going to have to pay for it.

leggo

Also, very few people in Canada with bone mets meet the criteria for Zometa.... They mostly get pamidronate. Again, cost vs. benefit.

leggo

Someone just informed me that the stipulations for perjeta for metastatic disease are the same in the US as in Canada. Good to know.