Help needed with NZ petition for funding of Avastin and Lynparza for Ovarian cancer

[TarbonNZ]

Hi everyone, Ovarian cancer sufferers in NZ would really like your support with signing a NZ parliamentary petition seeking funding for two key drugs. Currently we have none of the key drugs funded here, and the only way to get access is to pay for them. They are extremely expensive. I know personally that Avastin costs circa $5k per month, and that is just for the drug itself. Not sure about Lynparza, but if Olaparib is anything to go by ($10k per month), then it will be very expensive.

We are joining forces with 11 other groups with petitions seeking drug funding, e.g. breast, lung cancer etc, and are having a march to parliament on Tuesday the 7th May to present the petitions. You don’t have to be a NZ citizen to sign, and I have included the link. It will only make a few seconds of your time.

Petition request

That the House of Representatives urge Pharmac to fund Lynparza and Avastin for Ovarian Cancer, and also urge the Minister of Health to provide additional funding to Pharmac to enable the drugs to be subsidised.

Petition reason

Each year 350 women are diagnosed and 220 die from ovarian cancer. It’s the second biggest contributor to women's cancer deaths from female specific cancers. In women with ovarian cancer linked to the BRCA gene, Lynparza can extend progression free survival by about one year and is reimbursed by Governments in Australia, UK, and most OECD countries. In women with advanced disease Avastin extends PFS by 6 months.

I’m sorry I was trying to put the link in so that you could just click on it, but could not get it to work. So unfortunately You will need to copy and paste. I have tested it and it works.

parliament.nz/en/pb/petitio...

Thanks everyone, your teal sisters in NZ will be forever grateful.

We’ll knock me down with a feather, when I posted the link works!! Won’t tell you how long I have been trying, my life will be short enough already without wasting precious time trying to fix something that did not need fixing in the first place.

[BeeWild]

All signed and very easy with the link! I have friends and relatives in NZ so will send the link to them too xx fingers crossed you get some funding x

Bev

[TarbonNZ in reply to BeeWild]

Thanks, I have let the Ovarian Support group know that we have overseas support, and they are so excited. Every signature helps, Love Therese

[Cropcrop]

Petition signed and submitted. I have friends in NZ also one of my chemo treatment room nurses was from NZ so I have a slight connection. Good luck with this lovely ❤️Xx Jane 🇬🇧

[TarbonNZ in reply to Cropcrop]

Thanks Jane

[Marycha]

All done and very easy with the link. I hope it helps. Good luck.

[TarbonNZ in reply to Marycha]

Thank you

[Lindaura]

The link you posted brings us right to the petition, which is easy to sign.

Thank you for your action on this important addition to New Zealand women’s cancer treatment.

Best wishes,

Laura

[TarbonNZ in reply to Lindaura]

Thanks Laura.

[Katmal-UK]

Hi Tarbon Lynparza and Olaparib are one and the same. Can you not access either?

[TarbonNZ]

Thanks for that info, as I do not have the BRCA gene I have not looked into it too much, and my Oncologist always talks about Olaparib. I have now googled and see the other name. Because of the cost, circa $10k NZ for the drug alone per month, (this is through a private cancer treatment centre), it is out of reach of the majority of women. All of the drugs are available if you have the means to pay for them.

We do not even have funding for Avastin in NZ, which is one of the few options for people like myself. In the end I may have to look at self funding this, however because of the side effects it has real risks for me which I have to take into account. A bit like being between the devil and the deep blue sea.!

My support of this petition is really for all of the women that both of these drugs will help, there are some heart rending stories here at the moment of younger women with young families who desperately need help. Thanks for signing. Much love Therese

[Hidden]

I wasn't able to have Avastin due to health concerns, but am so pleased to be able to support women who want it. Signed the petition. xx

[TarbonNZ in reply to Hidden]

Thanks Lyn, I am in the same boat due to a genetic blood condition. My Oncologist says I would be a very brave woman to try it!!

[charlie12]

This is a tough situation for women in Z with ovarian CA. However , the drug companies set the prices and make humongous profits. It might be better to lobby them to charge more affordable prices and not base the prices on what the super expensive US market is willing to pay.

I work in this area and feel very strongly about this , but having had OVCA feel for the patients involved.

[TarbonNZ in reply to charlie12]

Thanks, and appreciate it. If you read my response below to Litchick, it will give you a better understanding of the current situation in NZ.

[Litchick]

Hiya - it’s so wrong that patients who are ill and vulnerable can be exploited by super- rich drug companies . Petition signed - we teal girls stick together!

Xx

[charlie12 in reply to Litchick]

The petition is to ask the NZ government i.e. the NZ taxpayer to provide funding , not to the drug company to lower their astronomical prices xxx

[Litchick in reply to charlie12]

I understand that and so signed the petition. However I also feel that drug companies should take some responsibility . Good luck with the petition.

[TarbonNZ]

Thanks for signing. Yes, this petition is directed at the Government and the drug buying Company in NZ (Pharmac). Yes the drug companies need to reduce their pricing, however in NZ we have a system where the drug buying company is declining to even negotiate to buy some of the drugs. Even with evidence from overseas that these drugs are working, they are taking anywhere from 2-4 years to make a decision, and the majority of times they are declining. It is Pharmac's job to build a relationship with the drug companies and to negotiate the pricing.

Our priority is Pharmac and the Government in the first instance. There are 11 groups petitioning the Government for access to drugs, with one of these the biggest, breast cancer. This should give everyone a good idea about how widespread the issue is.

Thanks once again for signing, every signature helps, and we really appreciate the support. As you all know, Ovarian cancer numbers are small in relation to other cancer groups, however the mortality is among the highest. We all realise these drugs will not cure, however they will help extend life, and where there is life there is hope. Regards Therese

[charlie12 in reply to TarbonNZ]

What’s I meant was that the manufacturers of the drugs should also be lobbied and should be lobbied first.

[27-359]

Have done. Also sent link to my family in NZ.

Jenny

[LittleSan]

Done. Good luck. The NHS comes in for a lot of stick but I for one am grateful for what's available. X

[ArctoLindy]

Signed, hope it helps xx

[Birdsong222]

This is when you realise our NHS is fab and we never want to loose it, however much successive governments want to hive off bits that will make other companies money. Drug companies are only wanting to make money- point easily made by them not researching any new antibiotics in the past 30 years, just leaving it to the scientist with special interest.

Who by the way are making terrific inroads.

As others have said link easy to use. Hope this leads to a successful outcome for you all in NZ.

Sylvia x

[ellseybellsey]

Petition signed for all our teal sisters.

Ellsey xx

[Hidden]

All signed. Had plans to stay in New Zealand years ago so could easily have needed this myself.

Good luck with everything

Janet

[Chick44nzrn]

Wishing you great success in the petitions . As a NZ er myself living currently in the UK I will contact my family and friends to see if they are aware and to get their support for such a worthwhile request .

I’ll be at home in October/November (Auckland) , and will keep my eyes and ears open . We are so lucky here to have most of the drugs readily available .

Please add my support if you need individuals too.( D Thompson)

Best wishes

Denise x

[thomas62]

Done. Easy peasy, Gwen x

[ZenaJ]

I've signed the petition. There's only 2 days left. Good luck with it. Zena x