 |
The Herceptin Fighting Fund Heroines
Eight women are undertaking the Judicial Review of PHARMAC's decision not to fund 12 months of Herceptin for New Zealand women.
They wish to share their stories with you.
Chris Walsh
I am 52 years old and was bought up in a small town in the Bay of Plenty. 
My mother, perhaps it was her Catholic background, told her children never to tell a lie. My father was big in the union movement and taught us to speak out if we thought something was not right and stand up to people who we thought were doing something wrong. This has got me in a lot of trouble over the years but with experience and more wisdom I have learnt to pick my battles. This campaign for Herceptin funding is one such battle.
Being diagnosed with HER 2 positive breast cancer in March 2006 is another battle. Unfortunately I had little choice in this one. I had no idea what being HER 2 positive meant even though I have a nursing background.
Since my diagnosis life has changed dramatically. I now have curly hair from chemotherapy but more seriously have learnt a lot about breast cancer.
I believe that the issues about funding for Herceptin have been clouded and largely driven by fiscal concerns rather than humanitarian ones, sound research and good health outcomes. I believe that all women with breast cancer in New Zealand should have the standard of care that 23 other OECD countries have.
What has helped me so far to continue with this battle has been the loving support of my partner, family and my friends. They continue to support me even though they worry about the stress all this causes. They also know that I will continue to speak out. I am so fortunate to have them behind me in this battle.
Chris Walsh
Judi Ridout
In May last year I went for my routine mammogram and paid for a holiday to the UK to visit my 94 year old mother. I had not felt any lumps so felt confident everything was OK until I got the recall and the diagnosis of HER 2 positive breast cancer. One week later I was se
eing a surgeon and a week later had my operation. After this chemotherapy, radiation and I have now received 3 Herceptin treatments. The visit to the UK did not go ahead (on medical advice) To say the last year has been shattering is an understatement…from a fit 56 year old who enjoyed tramping and outdoor activities I am now regaining my strength but life has taken a huge turn.
When I was diagnosed as HER 2 positive last year I believed that PHARMAC would have analysed all the information that the other 23 OECD countries had ( and who are now offering the 12 months treatment) and would be prepared to fund 12 months for HER 2 positive women. This is not the case…they are now considering the 9 week option which was trialled on only 54 women…this undervalues women’s health.
My family, friends and workmates have been very supportive during the last year…I couldn’t have done it without them. I would like to think that anyone being diagnosed with HER2 positive in the future would be able to receive the complete treatment for this condition and look forward to life.
Judi Ridout
Lois Blair
I am the 44 year old single parent of a 10 year old daughter. I have a mortgage and work part time. We have my elderly father living with us.
It was a great shock to be diagnosed with HER2 positive breast cancer in July last year. I have undergone surgery, chemotherapy and just completed radiation therapy. I am currently receiving Herceptin. My family and I made the decision to undertake public
fundraising to raise the approximate cost of $95,000 so that I would have the best possible chance of overcoming the cancer. Our local community has been wonderfully supportive as has my employer and we are thrilled to have raised over $90,000. Of course we don’t believe that this course of action should have been necessary and therefore I have joined Chris Walsh and the other women in the action against PHARMAC.
Battling this disease is hard, living with medical treatments day in day out takes courage and strength, physical and mental. It is most unfair to be treated as a worthless minority by government and PHARMAC whose only possible criteria for declining funding for this drug is money.
I, as with most of the other women, had no chance of paying the cost of this drug myself and if it weren’t for the support and generosityof the local community I would probably not have the full 12 month course.
It is very important that the general public realise that we are ordinary people who have done nothing to cause or aid this disease, this could happen to any one of them. We need their support to challenge PHARMAC’s decision and make them prove publicly that their decision was the correct one.
Lois Blair
Diane Edwards
I’m a 60 year old married mother of 5, grandmother of 14. I was brought up in Lower Hutt but now live in the Horowhenua. I work full time as a real estate agent and have work
ed all my life since leaving school. All my children are in full time employment.
I always believed I was twenty foot high and bullet proof. However, in Feb 2006 I was diagnosed with HER 2 positive breast cancer. The news devastated my family, my partner, my children and extended family including my aging parents who are still alive.
As far as I was concerned breast cancer always happened to someone else. No one in my family has ever been affected by it.
Following a radical mastectomy, lymph node removal, and a full chemotherapy course I’ve had 9 Herceptin treatments at a cost of $60,000. I’ve stopped at the moment, mainly due to cost but want to go ahead and finish the course. My cancer is Grade 3 and my oncologist and I believe having Herceptin will benefit me greatly and help prevent a recurrence in the next 5 years.
I need assistance to complete the Herceptin 12 month course. PHARMAC won’t help.
I believe we will win this Judicial Review only if we are bringing this funding problem to the surface.
Diane Edwards
Amanda Rudd
My doctor is a firm believer in mammograms for your 40th birthday. Rather than arguing I duly complied and all was declared clear. Six months later my breast changed shape, no lump and a marginal call but something made me go back to the doctor. Five days later
instead of jumping on a flight to Greece for a catch-up with family I found myself in Hospital having a mastectomy. That was not a good week and the last year has not been much better for me or my partner Marc.
The diagnosis was a nightmare, the follow-up worse, as each piece of information overwhelmed me and made my long term prognosis worse. The last piece of information was that I was Her2+; I had done extensive research at that stage and knew that was not good. Eight months later I have completed chemotherapy, radiotherapy and started Herceptin.
Many people have asked me why I am doing this rather than concentrating on “fighting the cancer”: I believe that Pharmac’s decision is morally and ethically wrong – they hide behind the efficacy of the drug but I believe they predetermined their decision solely due to funding constraints foisted upon them by the Minister of Health. Having cancer is stressful enough, the “standard” treatment makes it even more stressful, but the last thing anyone needs is to read about a drug that could double your survival chances, only to find that the state will not fund it and that one is faced with raising at least $75,000 to get it privately (which in many cases means travelling long distances to one of the few centres that will administer the treatment).
I have now paid for nine treatments of Herceptin – I am one of the lucky ones, I have been able to find that money but there are many other women out there who can’t. Can I be accused of being emotive, maybe, but I think everyone deserves a fair chance at life.
Amanda Rudd
Diane McCormack
I am 50 years old and live in Manurewa, a born and bred Aucklander. I have been married to my wonderful, supportive husband, Grant, for the past 31 years. We have 2 adult children, Hayley, 28 and Kurt, 25 and are soon to become grandparents.
Being diagnosed with the aggressive Her2+ breast cancer in August 2005 was devastating. 
Believe me, that’s the kind of news no-one can prepare you for. There is no breast cancer on my side of the family. Grant however, has lost his mother and 2 of his 3 sisters to this terrible disease.
I had 4 treatments of chemotherapy immediately, before my surgery in November 2005. I had a full mastectomy on the left side and the removal of 3 infected lymph nodes. January 2006 saw me undergo another 4 treatments of chemotherapy, followed by 20 doses of radiotherapy in May 2006. On the advice of my Oncologist I started on Herceptin in June 2006, at a cost of $101,600.00.
I have a very supportive network of family and friends. The firm of Chartered Accountants where I have worked for the past 19 ½ years, set up a trust for me to help with the costs. Fundraising from a concert, donations from clients and the general public, together with 5 garage sales have contributed towards 9 treatments. Grant and I purchased a rental property a few years ago which was to be for our retirement. Sadly, we have sold this to help with the costs.
For all my working life I have paid taxes. Grant and I have medical insurance, you know, you take it out just in case somewhere down the track you may need it, like now. But on approaching my insurance company they say “we can’t help you, the drug is not on PHARMAC’s list”, what a kick in the guts!! As if it’s not bad enough having breast cancer, you have the extra stress of trying to find the $100,000 you need for what you are told is your best chance of being a breast cancer survivor - Herceptin. We all deserve a fair chance to survive, this is not a fair chance.
Diane McCormack
Annette Wikeepa
I am 49 years old. My Medical Oncologist’s voice was full of enthusiasm as he fingered through my paper notes in the Consultation Room at Wellington Hospital’s Cancer Centre and said he had one more result to look up on me that should now be in the file in front of him. 
This appointment was in March 06. From what he told me next, I felt hope for the first time since I sat in the same Consultation Room 2 months earlier, with my Radiation Oncologist. Yes, great excitement on this March morning as the Medical Oncologist then told my Mother and I that the breast cancer tumour taken from my body (at the time of my skin-sparing mastectomy and free TRAM flap breast reconstruction (Dec 05)) had marker cells showing positive for Her2 breast cancer for which there is a new cancer drug called Herceptin, scientifically proven through a trial of over 10,000 women from many countries. He said this drug was hailed as the best cancer drug to come out in the last 20 years. I sensed significant optimism from him – quite a contrast from my first appointment with him.
He confidently predicted the following 2 things would happen re: this drug for NZ women: Pharmac in May 06 would almost without doubt “Medsafe” approve this drug for use in NZ medicine - which they subsequently did.
Pharmac in July 06, in consultation with all NZ District Health Boards would consider fully funding this 17-dose treatment given at 3-weekly intervals, spanning almost 12 months of treatment.
He gave me more information about the drug saying it is dripped into the body through a vein in the arm. He said the findings of this large scale trial are so compelling that he would indeed be very surprised if Pharmac did not fully fund this drug. He did not say anything at all about an alternative 9-week treatment regime. I then asked him what it would mean for me financially if by some remote chance the Government would not pay for this. He said he didn’t think I’d need to think about this but informed me the worst scenario was $80,000 to $100,000 cost to me. I nearly fell off my seat literally and I’m not kidding, as did my Mum. I skipped out of the Wellington Hospital (even though I’d just had another dose of chemotherapy that day) and felt hope for a normal life span just like my friends. This was a wonderful feeling!
However, one dark July evening when I called in to see a friend who said to me “you’re going to have to get a big mortgage” had just heard the announcement on TV. I really thought he was joking but it then struck me that he wouldn’t joke about such a thing. He also cried. To be honest the shock of that news was almost as big as the shock when I got diagnosed with breast cancer. However I was resolute from that night on that I would carry on in a positive manner as I had done through my treatment and would go to the bank the next day to sort things out. My cell phone starting going berserk with my daughters, mother and sisters and friends phoning and texting in disbelief of Pharmac’s unpredicted decision. One of my sisters and my brother-in-law kindly offered to lend the required money at a much lower interest rate than the banks. I declined this as I am a proud person and was convinced that if anyone was going to assist me it was the Government.
I drive to Palmerston North from the Hutt Valley to get this drug at the Aorangi Health Centre (private) from another Medical Oncologist. I had treatment No.1 at the beginning of Oct 06 and am due to have No.17 treatment near the end of Aug 07. My Medical Oncologist at the Private Centre also confirmed that the only side effect found from the large trial was that 1 person out of 100 or 200 (sorry not sure) developed heart failure. I questioned him about this asking would this symptom be easily seen. He said yes. I asked what could be done about it if this was the case. He said “we can administer drugs to reverse the effect of such”. I said “great”.
If this 1 in 100 or 1 in 200 side effect is the only negative feature of the drug I can’t see this being used as justification not to fund it. Also a heart-pumping function radiological scan is carried out on all patients on this17-dose regime at 2 to 3-monthly intervals as a precaution.
I fail to understand how Helen Clark has stood by and watched this decision as it contradicts her media statement early in 2006 when she said “the Labour Government wants to see Herceptin fully funded for NZ women”.
Also of note is that 2 weeks after the decision not to fund, the Chief of Pharmac proudly announced that Pharmac was running $25,000,000 under budget. Considering that the reason given for declining funding was that NZ doesn’t have a big drug fund like other large countries, I found this to be a stark contradiction. It seems that other Government Boards approve funding and pay retrospectively for houses damaged with water that weren’t inspected properly by their governing bodies but decline to pay for human beings.
I am humbled by the professionalism demonstrated in the public health service for the treatment and care I have had by my Surgeons, Theatre Nurses, Anaesthetists, Oncologists,
Chemotherapy & Radiation Oncology Nurses at Hutt and Wellington
Hospitals as well as the Chemotherapy Nurse at Aorangi Private Medical
Centre/Hospital in Palmerston North, Physiotherapists at Hutt
Hospital, great nursing staff in the Ward and Outpatient Departments,
Radiation Technicians, District Nurses and Receptionists. Also of note I have worked for the Wellington Regional Plastic, Maxillofacial & Burns Unit for almost 10 years as Personal Assistant to the Director and Secretary to one of the Plastic and Reconstructive Surgeons (both prominent NZ Plastic & Reconstructive Surgeons). I had my 6-hour surgerycarried out at the Unit which is based at Hutt Hospital being one of the four regional units in NZ.
I have paid taxes in NZ for 34 years.
Libby Burgess, Chair of BCAC, has stated: "The 9 week Herceptin regimen PHARMAC will fund is not approved in New Zealand by drug regulatory body Medsafe. Women wishing to access the funded treatment will be asked to sign a consent form to indicate their understanding that they will be receiving an unapproved treatment."
I think the NZ Medical Oncologists should unite and refuse to administer this medication on the basis of their Hypocratic Oath. The above is totally contradictory to the 17-treatment dose which is Medsafe approved by Pharmac and not funded. The cheaper 9-treatment unproven is not Medsafe approved by Pharmac and funded.
Annette Wikeepa
Mangalika Mendis
I am a 46 year old doctor who immigrated to NZ 11 years ago with my daughter and husband. After spending our lives in many different countries and with many travelling experiences, we chose to settle in New Zealand as our final destiny.
I started my career in NZ as a doctor in Taranaki Base hospital in 1997. Later we moved back to Auckland and settled. Since then I have worked in many hospitals. It has been a great pleasure to help many New Zealanders in their time of need. During this time I started my post graduate training as I wanted to become a specialist.
In November 2001 I detected a tiny lump and went to a surgeon. I was diagnosed with early breast cancer. Following this I was promptly operated on. Due to the long waiting list in Auckland, my family and I left to Melbourne for two months of radiotherapy.
Later I was on Tamoxifen and had regular mammograms. I was so happy to complete 4 years after my first surgery and continued my studies.
In August 2005, I felt a lump in my armpit and later it was diagnosed as a loco-regional recurrence of the previous cancer. The bad news -it was HER 2+. This time I wanted to have every possible treatment available to prolong my life for my young family. After my surgery I had 4 cycles of two chemotherapy drugs in the public sector and I had to pay approx. NZ$ 25,000 for 4 cycles of Taxotere, another chemo drug which Pharmac approved in 2004 to treat early breast cancer but was not available during my treatment.
After chemotherapy, I was treated with radiotherapy followed by Herceptin. I’ve already had 14 doses of Herceptin.
During this difficult time, I did not give up my studies and finally completed my fellowship in anaesthesia.
We have no extended family in NZ. During my difficult time my husband, lovely daughter and all my friends, were incredibly helpful. I am thankful to all the doctors who treated me , my colleagues, my church congregation and all those who supported me in various ways. I wouldn’t have come so far without their support.
This is the era of practicing evidence based medicine. Pharmac’s decision to provide a 9 week (instead of the proven 1 year) course of Herceptin based on a trial of 54 women is totally unacceptable. I am fighting this battle not only for myself but for those women who can not finance the complete course of Herceptin.
Mangalika Mendis
