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Submission on Petition To the Health Committee of the House of Representatives
- by Anne Hayden 5 April 2006
Recommendation – That the Health Committee ensure that the New Zealand Government fully fund the pharmaceutical drug Herceptin immediately, and further, that Parliament support the progress of such funding as a matter of urgency.
SUBMISSION
Thank you for the opportunity to make a submission to support the Anne Hayden Herceptin Petition, and for considering it with urgency. I wish to appear before the committee by videoconference to speak to my submission. It will comprise five parts:
Summary 1.0
The Anne Hayden Herceptin Petition 2.0
Breast cancer, Herceptin and early HER2 + Breast Cancer
3.0
My Experience, Costs and Requests on Behalf of Younger HER2 + Women 4.0
Recommendation 5.0
I refer the Health Committee to the following providers of evidence in support of this submission:
- The Breast Cancer Advocacy Coalition (BCAC) on behalf of their member groups, namely The New Zealand Breast Cancer Foundation, Breast Cancer Support Service, The Breast Cancer Research Trust, Busting with Life, The Breast Cancer Network, Look good Feel Better, The Mamazon Club, Lymphoedema Support Network, Breast Health New Zealand, Te Ha o te Oranga o Ngati Whatua, Age Concern, Breast Cancer Action Trust, and Herceptin Heroes.
- Oncologists, Dr Nicole McCarthy, former Senior Research Fellow of the Breast Cancer Research Trust at the Auckland Hospital, now Medical Oncologist, Royal Brisbane and Women’s Hospital (per teleconference from Brisbane), Dr Paul Thompson, Medical Oncologist, Auckland (written evidence), Dr Richard Isaacs (teleconference & written submission), and Dr Andrew Simpson, Wellington Cancer Centre, Capital and Coast District Health Board, on behalf of the New Zealand Association of Cancer Specialists (written evidence).
| 1.0. Summary |
| 1.1. |
I am seeking full and immediate funding of the drug Herceptin for the treatment
of women with early HER2-positive breast cancer. This is a particularly aggressive form of cancer resistant to many types of chemotherapy. It affects roughly a quarter of breast cancer sufferers. Herceptin is a biological therapy which attaches itself to, and immobilises cancer cells while at the same time assisting the body’s own immune system to fight the disease. |
| 1.2. |
I started the Anne Hayden Herceptin Petition because I was incensed women had
to beg for life-saving medication. It is wrong for women to have to bare their souls to the wider public to get appropriate treatment for a killer disease. It compromises their natural human rights of life, dignity and privacy. |
| 1.3. |
My Herceptin treatment costs my husband and I almost $7000 every three weeks
for a year. This is on borrowed money totalling over $127,000. It impacts hugely on our retirement plans and lifestyle. The diagnosis of breast cancer hit us hard. Fortunately our medical insurance allowed me to have prompt surgery (a full mastectomy with a tram flap reconstruction). I found out about my HER2+ status because I asked a question about HER2 on my histology form. I was advised it was only relevant to women with secondaries. Learning later I had been given chemotherapy that my cancer might have been resistant to was equally as difficult. Had I gone through hell for nothing? While Herceptin might offer me hope, I needed advice urgently. However I was forced to struggle with delays as I tried to contact my oncologist in the public health system. Unsuccessful, I sought a second opinion. |
| 1.4. |
Many HER2-positive women are young women, mothers with children and/or
career-focussed lives. They, their families, and ultimately the New Zealand economy should benefit from the drug being given to them free of charge. Already it prolongs and improves the quality of lives of terminally ill women. It makes good social and fiscal sense to save the lives of early HER2+ women. Thus saving the national economy the costs of hospice care (estimated at $500 per day) terminal, hospital, and pharmaceutical care (including Herceptin) not to mention keeping many New Zealand families intact. |
| 1.5. |
Women should be routinely tested for the HER2 protein, if they are not already.
What’s more, protocols must be put in place to ensure breast cancer sufferers are advised of their HER2 status, and as applicable, the hope of Herceptin. It is my belief that the high profile of the Petition has educated more women of the existence of the HER2 gene and its implications for a breast cancer diagnosis. |
| 1.6. |
I strongly urge this committee to recommend the Government put the
necessary funding where it needs to be, in accordance with the wishes of the over eighteen thousand people who signed the Anne Hayden Herceptin Petition. |
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2.0 The Petition
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| Asks "that Parliament note that 18,166 people signed the Breast
Cancer Herceptin Appeal Petition, requesting that the New Zealand Government fully fund the pharmaceutical drug Herceptin immediately, and further, that Parliament support the progress of such funding as a matter of urgency" |
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| 3.0. Breast Cancer, Herceptin and Early HER2-Positive Breast Cancer |
| 3.1 |
I am seeking the Health Committee’s urgent action to ensure funding is set
in place to fund the drug Herceptin to HER2-positive women with early breast cancer. |
| 3.2. |
Advanced breast cancer occurs in around 40% of women with early breast
cancer. Once it is at this stage, life expectancy is between two to three years
from diagnosis . HER2 positive breast cancer has abnormally large quantities of
HER2 protein causing the cells to grow and spread as a particularly aggressive
form of breast cancer. Known for responding poorly to some chemotherapy,
women with HER2 positive disease have a poor prognosis. |
| 3.3. |
Between 20% and 30% of women with breast cancer are HER2 positive , which
in real figures is between 500 and 750 women diagnosed per year. |
| 3.4. |
Herceptin is a biological therapy obtained from the body’s natural immune
defences to target HER2 proteins on breast cancer cells. It acts by stopping the
growth and multiplication of breast cancer cells by attaching itself to HER2
proteins blocking signals telling the cells to grow. When this happens the body’s
immune system identifies the cell as a foreign object and attacks, resulting in a
dual attack against the HER2 breast cancer cells. |
| 3.5. |
Herceptin is given by intravenous infusion, three weekly for one year . |
| 3.6. |
This drug increases average survival of women with metastatic HER2+ disease to
31.2 months compared with 22.7 months with chemotherapy alone. Twice as
many women with advanced breast cancer can survive three years or more with
Herceptin . Government already funds Herceptin for women with advanced
HER2 breast cancer. |
| 3.7. |
Herceptin has been provisionally approved by Medsafe for the treatment of HER2
women once they have had surgery and completed their chemotherapy (23 March
2006). |
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| 4.0. My Experience, Costs, and Requests on Behalf of Younger HER2 + Women |
| 4.1. |
I initiated the Petition on 12 January 2005 because I was incensed seeing
women in the media begging for money so they could have life-saving
medication. |
| 4.2. |
This submission includes the cold hard facts of being a HER2-positive breast
cancer sufferer, the impact of paying for Herceptin myself, and the high cost to
the community of the Government’s lack of funding. |
| 4.3. |
Basically my health must now be seen in dollar terms. As I write this I have an
oncologist’s tax invoice in front of me dated 20 March 2006. This invoice is made up as follows.
Follow-up consultation $120
Chemotherapy Administration $525
Drugs – Herceptin $5571.74
GST $777.09
Total $6993.83. |
| 4.4. |
My husband and I will have to pay around the same amount three weeks later on
10 April, and again in another three weeks, and so on, for a whole year if I want the best prognosis. This totals over $127,000. The first dose, which was at 8mgms per kilo of body weight, cost over $9,000. The subsequent treatments are set at 6mgms per kg. |
| 4.5. |
Size does matter. As a woman of 75 kilos, my expenses are greater than for
someone who weighs 60 kilos. |
| 4.6. |
We have had to borrow the funds against our property, compromising our
retirement plans, and experiencing a reduction in lifestyle to afford the drug. |
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4.7. Looking back to the beginning of my cancer experience - I discovered I was
HER2-positive in a circuitous way. As a private patient I asked my surgeon for
my histology notes. Seeing I was HER2-positive, I asked what it meant. I was
told, “Oh, that’s only for secondaries.” Having been assured that I didn’t have
metastatic disease I concluded this was nothing to concern myself about. |
| 4.8. |
Fortunately I had a friend with a friend who was in one of the Herceptin trials.
She did not have metastatic disease. She reported her friend’s enthusiasm for the
drug, and its early positive predictions. Needless to say I became interested. |
| 4.9. |
When I started chemo I asked to be included on the Herceptin trial. However by
25 January, 2005 it was too late. The researchers apparently had a full quota. I
finished chemo on my birthday, 11 May 2005. Having chemo had been terrible.
By the time my hair had grown back, there was escalating media focus on this
wonder drug. It seemed to crescendo in December. Nic Russell’s plight was in the
North Shore Times’ headlines regularly, and she badly needed Herceptin. I
thought I probably did too. |
| 4.10. |
To have or not to have Herceptin was my dilemma for weeks. It was
difficult raising it with my husband because I felt guilty suggesting we spend so
much money on my health. Foolish though it sounds, it seemed the ultimate in
selfishness. Exacerbating the problem was the difficulty I had reaching my
oncologist in the public health system. I badly needed to talk to him. I tried for
two weeks to finally be told I could speak to him in a month’s time at my regular
check-up, which was already two months overdue. |
| 4.11. |
I felt as though I was standing on a landmine ticking away. I was hugely
frustrated that I couldn’t ask the questions, “Should I have Herceptin?” “What
are the implications of being eight months post chemo?” I was sure that if I was
to have the drug, I needed it urgently. I telephoned the Health and Disability
Commissioner. It was outside his jurisdiction. I rang my local MP, Wayne
Mapp, who was helpful. |
| 4.12. |
I saw more in the papers about how resistant HER2 breast cancer was
to chemotherapy, a fact I’d not been made aware of previously. When I’d
enquired about my prognosis I was informed “You’ve done the best you can.” I
knew the HERA trial involved women having Herceptin on average, six months
after completing chemo. For all I knew cancer cells could have returned. I
became more and more desperate. |
| 4.13. |
I sought a second opinion. As a result of this, my new oncologist
took great care not to promise us a miracle, yet despite this, his enthusiasm for
the drug was plain. We decided to go ahead. |
| 4.14. |
After two treatments I have had no side-effects whatsoever from the drug. This
is in stark contrast with the effects of the chemo regime I had had. |
| 4.15. |
At my last appointment my oncologist presented me with another decision or
gamble to make on my life, this time by having a shorter sequence of four
treatments, saving us almost $100,000. This is based on a very small Finnish
study with a sample size of 232 HER 2 + women, compared with 13,000 in the
HERA study. The results showed the patients who received Herceptin had a
better three-year recurrence-free survival rate than those who did not (89% vs
78%). |
| 4.16. |
Quite frankly I don’t know what to do. If I have four treatments it takes me to 1
May. Then there is a large gap until September/October when funded treatment
might become available. Whether it is clinically appropriate to have a gap
between treatments of around five months is another question. If I continue to
have Herceptin right through to September/October it will cost us over $79,000. |
| 4.17. |
Although I have tried to be concise, the complexity of the situation is
extraordinary, where the lottery prize is my life. But the winning ticket costs so
much! |
| 4.18. |
However I am only one of many. Recent figures cite 50% of HER2 positive
women are under fifty , mothers and/or career women. They must be given the
opportunity to realise their potential. Or to look at it fiscally, they should be
given time to make their invaluable contribution to the New Zealand economy. |
| 4.19. |
Researchers, Ted Miller et al (1996) calculated the value of one life at
$US2,000,000. This is a lot of money. We’re asking for around $70,000,
exclusive of GST, per woman for Herceptin (based on current costs) . This
would provide people in this situation much needed hope that they will be able
to lead long and healthy lives and be able to make their contributions to New
Zealand society. I ask you to consider the costs of those younger women dying,
leaving children deprived of their mothers. I ask you to also think about what it
costs for hospice care. I understand it is around $500 per day . One year’s care
for one patient would therefore cost $182,500. We HER2 women need the funds
to be put in place now. This will avoid costs for hospice and other terminal care
(of hospital and pharmaceutical care, including Herceptin), and will save New
Zealand families. The estimated $20 to $30,000,000 per year is such a small
amount by comparison. |
| 4.20. |
I believe Herceptin is a life-saving drug. People with advanced or terminal
HER2 breast cancer have benefited from funded administration. The New
Zealand Government has a duty to its people to also fund Herceptin to women
with early HER2 breast cancer. My experience tells me women should be
routinely tested for the HER2 protein, if they are not already. What’s more,
protocols must be put in place to ensure breast cancer sufferers are advised of
their HER2 status as well as about the hope of Herceptin. |
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| 5.0 Recommendation |
| Finally I strongly urge this committee to ensure that the New Zealand
Government fully fund the pharmaceutical drug Herceptin immediately,
and further, that Parliament support the progress of such funding as a matter of
urgency. Women of New Zealand are a great investment. We deserve it, and
eighteen thousand New Zealanders think so too! |
Cameron, D. Herceptin: foundation of care for HER2-positive breast cancer. American Society for Clinical Oncology (ASCO), 41st Annual Meeting. 16 May 2005, Orlando, Florida, USA
Marty, M. et al. Efficacy and safety of trastuzumab combined with doxetaxel in patients with human epidermal growth factor receptor 2-positive metastatic breast cancer administered as a first-line treatment: results of randomised phase II trial by the M77001 Study Group. J. Clin. Oncol 2005;23:4265-4274
Harries, M., Smith, I., The development and clinical use of trastuzumab (Herceptin). Endocr. Relat. Cancer 2002; 9:75-85
Herceptin (traztuzumab) Data Sheet, 4 October 2005
Herceptin (traztuzumab) Data Sheet, 4 October 2005
Roche, 31 March 2006 “Briefing Document: Breast Cancer & Herceptin
Miller, Ted R., Mark, A Cohen, and Brian Wiersema. Victim Costs and Consequences: A New Look. Rockville: National Institute of Justice, US Department of Justice, 1996.
Julia Furness, Accountant, North Shore Hospice Trust, 30 March 2006.
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