February 2008
As the Herceptin Heroines continue their Judicial Review of PHARMAC, BCAC has received many letters, emails and phone calls of support and encouragement for these eight extraordinary women.The women are challenging PHARMAC's decision to fund only 9 weeks of Herceptin for NZ women. 24 other OECD countries fund the proven course of 52 weeks.

The eight women have completed their Herceptin treatment (entirely at their own expense) so they are in court not so much for themselves but for all New Zealanders who may, at some point in their lives, face a similar stressful situation. Herceptin Heroines spokesperson Chris Walsh said, “There are a large number of new, targeted therapies on the horizon and it is our belief that the issues, delays and inconsistencies seen with Herceptin simply can’t be allowed to happen again with a different treatment, or another group of patients.”

Ms Walsh said oncologists know the 12 month Herceptin regime provides the best chance for women to beat the more agressive HER2+ breast cancer. Sadly, they can only offer 9 weeks and advise women to take 12 months if they can afford it.

We have been honoured to share the stories of other New Zealand women who are, at this moment, struggling to raise money to pay for more Herceptin treatments than the nine week course that PHARMAC is offering. Sarvs Falefitu adds her story to that of Belinda Pilcher and we also feature a letter of heartfelt support received from Carolyn Skinner.

Please write to us about this issue. Share your own story, air your views about PHARMAC, Herceptin and how our country funds pharmaceutical treatments for cancer.

30th January 2008
To the ladies of the Herceptin Fighting Fund

I am a 49 year old woman with early stage HER2 positive breast cancer. Some very dear special friends are presently helping me raise money for my own Herceptin treatment.

However, we know that you are valiantly fighting for all the women of New Zealand who have HER2 positive breast cancer to have fully funded access to 12 months treatment with Herceptin which is the international standard of care in 24 other OECD countries.

Please accept a donation of $500.00 towards your court costs which must be considerable. We wish we could give you more but we know from our own continuing fund raising efforts that every bit helps.

Thank you for what you are unselfishly doing in taking PHARMAC to court to try to ensure that other women do not in the future have the terrible stress and added burden of trying to fund this very expensive drug for themselves.

We must urge our government to increase PHARMAC’s funding so Herceptin treatment for 12 months instead of the present 9 weeks becomes the standard of care in New Zealand.

Wishing you all well. We will be following your court case with great interest. Keep up the good work Herceptin Heroines.

Yours sincerely

Carolyn Skinner and fund raising friends
Jannie Penniall, Ursula Dawson, Val Roxburgh, Diane Holland, Vaipou Shadwell

11 February 2008
Sarvs Falefitu shares her story of her diagnosis of HER2 positive breast cancer

At 39 years of age, and no known family history of breast cancer, the thought of a mastectomy, reconstruction, removal of lymph nodes, chemotherapy, radiotherapy, the stress of fundraising for $80k-$100k for a drug called Herceptin as part of my cancer treatment while seeing four teenagers through school, working full time for Dept of Labour, supporting my husband of almost 20 years and running a fulfilling life had never ever entered my mind or was supposed to be part of my life.

Almost 3 months after the diagnoses of HER2 positive breast cancer I rarely sleep, have anxiety attacks and have occasionally struggled to get up in the mornings but the courageous and heroic women in this sisterhood who have walked before me and most I have not even met have played a monumental difference to my attitude in life.

Initially all I kept thinking about was ensuring that my teenagers were left equipped after I passed on and that my husband was emotionally strong to support himself and our teenagers after my death. The anger, guilt, shame, hurt and disbelief all pulled into one emotional question - why would I have HER2 positive breast cancer? I only drank like a fish, smoked like a chimney and partied like there was no tomorrow in between our hectic but fulfilling life!? WHY ME??
I have since been armed with so much knowledge of my diagnosis, my treatment, my healing and my recovery that those initial feelings are now a distant memory. I have been blessed with the support and love of my family, friends, medical professionals and even complete strangers so I know that I am winning this evil.

My name is Sarvs Falefitu and I have been diagnosed with HER2 positive breast cancer.

27 June 2007
New Zealand woman Belinda Pilcher tells of her diagnosis with HER2+ breast cancer

I was holidaying in Byron Bay with my partner in early April 07 and as I have done in the past, I was doing a routine 'breast check'. Another reason for checking my breasts was due to their fullness as I was 7 months pregnant with our boy. On discovering a foreign lump I immediately became concerned. However, being pregnant and with my hormones all over the place, the thought of this lump being cancer did of course not even enter my head.

So back in NZ I went to my GP. It was suggested that this lump was a cyst as a result of pregnancy but to be sure, a referral was put through to the breast clinic at Wellington Hospital. After a few visits, an FNA (unsuccessful due to stubborn lump not wanting to be pierced), then a core biopsy, all this whilst pregnant, I finally found out a week before my son was due that my lump was cancerous (grade 3), and HER2 positive. First thought, 'Oh my god I won't be able to breastfeed my son.’

That was the week of 7 May and now 27 June I had surgery last week to remove the tumor.

The road has been long and challenging to say the least, but thank God for my son Kye, who through pregnancy and birth up until now has been my complete focus. It is only now that I can focus on my treatment and recovery (whatever that entails). When this should be a year all about Kye it will be a year centered around my health.

I am 33 and have never had a 'serious illness', as they call it. No history of breast cancer in my family either.

Why me, what did I do to deserve this, especially to find out just before Kye was born? Thank God for my absolutely wonderful loving supportive partner who shares the load with all that has been bestowed upon us.

One has to remain positive and in my case, step one was the safe arrival of Kye, step two surgery, step three treatment.

As for the decision to supply Herceptin for only 9 weeks, how could our government and PHARMAC play Russian roulette with the lives of so many NZ women? Do they have a conscience?

Breast cancer treatment in New Zealand and Australia were compared in a TV3 60 Minutes documentary, ‘Staying Alive’ that aired on October 16, 2006. The programme contrasted the experiences of Christchurch patient Mhairi Flett with those of Sydney patient Corinne Bowden.  This moving programme powerfully highlighted the state of breast cancer care in New Zealand today and generated many messages of support from the public.
Here are just a few.

A Letter to Health Minister Pete Hodgson
Mhairi Flett was diagnosed with HER2 positive breast cancer at age 40. Mhairi and her husband Jonathon have two children (aged 7 months and 3 years). A course of Herceptin is expected to cost over $100,000 and the Fletts will have to re-mortgage their family home to help cover the cost. The Full Colour Trust (www.fullcolour.org.nz) organised a fund raising ball for Mhairi on November 3rd and raised over $70,000 for her treatment.

Kirsten Hewitt, Mhairi’s sister wrote this letter to Minister of Health Pete Hodgson:
Dear Mr. Hodgson
I wrote to you earlier this year expressing my concern at this government's shameful decision to deny Herceptin to young women in NZ. My sister is one of these women and I have just read this heart-breaking story ( www.stuff.co.nz/stuff/0,2106,3883951a7144,00.html about New Plymouth woman Catherine Jones who also needs Herceptin).
Here is yet another woman in the same situation as my sister: both have a young family, struggling to cope with cancer, chemotherapy, radiation and its side effects, yet also having to do everything possible to raise enough money to pay for a medicine that could potentially save their lives.
How can you and this government continue to get away with this shameful behaviour? Respected oncologists in NZ and around the world have stated that the research data clearly demonstrates the significant benefits of Herceptin for women with Her2 positive breast cancer.
Please open you eyes, show some compassion and look after the citizens of NZ and their families.
Regards
Kirsten Hewitt

… and Mhairi herself had this to say:
"I'm calling on all women with breast cancer to send their prosthesis or their wig or some of their hair from chemotherapy to Parliament as well. It's gut-wrenching … You lose your hair, your breasts, you go through menopause. Maybe sending these things (to Hodgson) will make it a bit more personal for him."
(Acknowledgement: Mother fights government over drug - 03 Aug 2006 by Joanna Davis, The Press and Fairfax New Zealand Ltd, 2006. All rights reserved)

'I too have early stage Her2 breast cancer. I feel so frustrated and desperate that my own country doesn't seem to care what happens to me.'
From a woman with early stage Her2 positive breast cancer

‘To get the Herceptin I need we will be re-mortgaging our home, borrowing from family members, and fundraising to meet the horrendous cost of this drug. I have not chosen this and would not wish it on anyone. The news today (October 16), that Pharmac has again refused funding for Herceptin for early stage breast cancer, is like a kick in the teeth.’
Katie Sellars

‘We have just watched your 60 Minutes story on breast cancer. I am appalled at the heartless decision not to give Mhairi and other sufferers of this terrible disease every chance to beat it and to think I helped put this government in power. We will get a second chance to change that..Mhairi may not. Hang your head in shame Helen. The buck stops with you.’
Lynne & Layton Bryce.

‘I know I'm just one person, one voice, one opinion but ask yourself one question: if it was your mother, sister, daughter, wife or yourself, would you put a price on their life? Look at these children and ask them what they'd do to spend another day, week, month, year with their mummy and then tell them bad luck its not in the budget. If you can sleep with that image in your head, good luck to you.’
Amanda Christidis

‘What value does the government put on the lives of its people? Where are their priorities? New Zealanders that contribute to our society through working and raising a family are again penalised. Is there any wonder so many … New Zealanders are packing their bags and moving across the ditch?’
Fiona Koenigsberger

‘I'm appalled and ashamed at our government for not providing the best possible medicine available for these women and using the excuse that the drug Herceptin has not been proven to be effective. I think it boils down to dollars and the New Zealand government not wanting to spend the money. It's no wonder we have an 11 billion dollar surplus! How can the government sit and watch these women and their families lives be destroyed because they're too stingy to help them until it’s quite possibly too late?’
Kath Dorsey

‘I have only just watched your report on the 'Cancer drug blow' and I feel sick to my stomach to see women’s health being treated as insignificant and unworthy of money. I can’t imagine what these women must be going through without the extra stress of having to raise so much money just to stay alive. I also feel betrayed by the government … we elected to power and who get paid so much to run the country (and) who are letting its women die when it could do more!’
Hayley Tennant

‘I don't think I have ever been as touched or as angry all at one time. The story of Mhairi Flett is an emotional yet horrific situation in which she is indeed being 'ripped off'. One has to wonder just how quickly Herceptin would be funded if say 'Mr Pharmacs' wife, sister, mother or significant other was diagnosed with this cruel and brutal disease. As the mother of two children I was moved to tears by this story.’
Beth Rushton

‘The contrast to the woman in Australia in the same situation was just so dramatic. It’s an absolute travesty that our government holds women's lives in such low esteem that they have to wait till they're near death to get a drug that will help them well before. A woman-led government at that. Disgusting is another word that describes the situation.’
Jessie Christieson

‘Shame on the NZ government for not funding Herceptin. A cynic would say that it is a great way to ensure the survival of NZ's wealthy citizens.’
Rosemary Stone