Breast Cancer Aotearoa Coalition Update: February/March 2008 

This Feb/March Update is also available as a pdf.

Contents

Member News

Other News

Updates on the Five Initiatives

Letter from the Lazyboy Chair

Kia ora koutou,

It’s March 2008 – our member groups are thriving, doing good things to support New Zealand women with breast cancer, and having a ball as they do so – you’ll read plenty of evidence of this in our Member Update.

But being March 2008, I must acknowledge that it’s two years since Anne Hayden took her 18,000 signature petition to parliament asking the government to fund 12 months Herceptin treatment, two years since Medsafe registered this 12 month treatment as safe and effective, and nearly two years since Australia, the UK, Canada and many other countries decided to fund 12 months’ treatment for their women.  Japan recently became the 25th OECD country to provide 12 months funding, based on the strong data from international clinical trials involving over 12,000 women. I find it almost unbelievable that New Zealand is the only country in the world to fund a cheap 9 week treatment option on the basis of a single Finnish clinical trial of 232 women, a mere 54 of whom received the shortened treatment funded here. 

It’s deeply disturbing that this can continue, particularly after Medsafe, our medicines regulatory body, rejected a secret PHARMAC application for approval of the 9 week regimen, ruling there was not enough evidence to support it.  It’s tragic that so many of our women are still being forced to fundraise and mortgage their homes to access the treatment their doctors recommend, and that so many more are forced to go without.

And there are further challenges.

We received a letter from the Medical Council of NZ this month, telling us that our breast physicians will be de-registered. From June 2 2008, breast medicine will no longer be recognised as a vocational scope in New Zealand, removing a strong incentive for our talented and dedicated doctors to specialise and develop expertise in this important area.  The MCNZ decision came despite submissions strongly supportive of the breast physicians from doctors and patients alike, and efforts by the physicians over the last two years to defend their status.  The MCNZ provided BCAC with no justification for this decision, which will deprive patients of a highly valued member of many breast care teams, and is surely contradictory to the MCNZ motto of “Protecting the public, promoting good medical practice.”

Our members tell us from their experiences - and surgeons confirm - that delayed breast reconstruction is not available to women through out New Zealand – only some centres offer it all the time; some do part of the time; and others not at all.

We know from our contacts working within Māori health that support is lacking for our Māori and Pacific women facing breast cancer.

Some days I feel daunted by how much work remains to be done to achieve world-class breast cancer treatment and care for our women. But looking at the wider picture, I realise just how far we have come.

Celebrations of our lives are all around us every day, and I need look no further than our members and their supporters to see evidence of that - vibrant groups of dragon boaters, strong support groups and wonderful exercise programmes for our women with breast cancer, provision of resources for those living with advanced breast cancer and of course those groups working tirelessly on environmental issues, or to find a cure for this terrible disease that affects so many New Zealanders. I must also acknowledge the hundreds of people who respond to our fund raising campaigns and calls to action with an outstanding spirit of generosity and caring

So although we still have mountains to climb, we are urged on by the spirit of the women who support us and work with us, as well as the ones who have gone before, leaving a legacy of strength, courage and determination that we must honour.

Member News
Report from Busting with Life Dragon Boat Team
From Trea Kenny, President
The 2008 dragon boating season has special significance for the Busting With Life team as we celebrate our 10th anniversary this year. When Trici Nelson gathered that first squad of breast cancers survivors together I am sure she never imagined that 10 years on there would be enough breast cancer dragon boat teams in NZ to have their own division at regattas.

Apart from business as usual in terms of regattas this season, we are currently trying to gather contact details of all the women who have been part of the team over the years. So far we have 98 on the list. Our goal is to contact them all and invite them to a reunion dinner on Saturday July 12, to be followed on Sunday morning by a time of remembrance.It is amazing that we still have 6 paddlers that were part of that inaugural, trailblazing team. They have that same enthusiasm and passion 10 years on and are at the heart of our current team.

In February we competed in the Auckland Tiger Beer Festival (pictured), held at the viaduct, in which we won our division. In March we will be travelling to Tauranga for the Super 12 regatta, and also to Wellington to compete in their festival. The NZ Nationals are being held in Auckland on Lake Pupuke on 29 March and for the first time an Australian breast cancer team has entered. There are 7 breast cancer teams registered currently, the most ever for a NZ event. On the water the teams are very competitive but off we enjoy a great camaraderie and take pleasure in getting together and celebrating life.

If you are interested in learning more about or wanting to become part of our team please contact Clare on (09) 424 2034. 10 years on and we are still ‘Busting With Life’.

The Breast Cancer Research Trust brings Dr Karin Michels to New Zealand

The Breast Cancer Research Trust was proud to bring to Auckland one of the world’s most prominent experts on the environmental relationship between diet and disease, particularly in relation to breast cancer. Dr Karin Michels, a clinical epidemiologist from Harvard University, presented a free public Liggins Institute Lecture on 28th February.

Dr Michels discussed the causes of breast cancer, known risk factors (including genetics) and ‘where to from here.’

Breast cancer is the most common female cancer worldwide. The lifetime risk in the US, NZ and Australia is now 1 in 7. The greatest risk factors are being female and getting older! 

Many factors associated with a high risk of developing breast cancer are related to growth and are often beyond our control: high weight at birth; the taller a woman is the greater her risk; early puberty growth spurt; early onset of menstruation; low body mass index (BMI) (being slim) at 18; late onset of menopause; and high BMI (excess weight) after menopause. Although we often hear that having children and breast feeding reduces risk, we need to have four children before we turn 30 and breast feed for at least two years to achieve any significant risk reduction. High breast density, another biological feature beyond our control, is thought to be predictive, not causative and previous benign breast disease is associated with a higher risk of later breast cancer.

A number of genes associated with higher rates of breast cancer have been identified.  Mutations of the BRCA1 and BRCA2 genes account for up to 10% of breast cancers. Interactions between genes and environment (cellular) can lead to mutations.

Some other points of note from the lecture: avoid post-menopausal weight gain; up to 5 years of HRT is fine but more than 5 years of oestrogen/progesterone HRT increases risk substantially; either reduce alcohol intake or increase folate intake; adult food intake has little or no effect on breast cancer risk; low levels of radiation (e.g. mammogram, x-ray or frequent flying) do not increase breast cancer risk; oral hormonal contraception does not increase risk; soy foods do not increase or reduce risk, and neither do induced abortion, miscarriage or dietary fat intake.

A high blood level of Vitamin D reduces risk – this can be achieved by 10 minutes in the sun without sun block, creating a conflict for public health messages!

For women who have already had breast cancer, no dietary factors of great relevance have been identified but survival is increased with weight loss and physical activity.

When food is micro waved in Tupperware and other plastic containers, endocrine disrupting chemicals leach out. In separate studies, oestrogen-mimicking chemicals have been shown to cause breast cancer in rats and mice, suggesting a link between heating plastics, especially near food, and exposure to chemicals that could potentially increase breast cancer risk, providing a lead for future research.

In general, future research on factors impacting on risk will focus on early life exposure, particularly adolescence as this seems to be a critical time.  More data is needed on how childhood diet and lifestyle affects breast cancer risk.

Breast Cancer Support Services Tauranga
Julie Blake organised a Young Women’s Support Group meeting for Monday March 10. Young women aged from 20s – 40s were invited to attend and discuss how a support group could be of benefit to them. On April 26th, the Tauranga group will host Jennifer Clark, CEO of Sweet Louise, Claire Ryan, Dep. Chair BCAC and author Jane Bissell at their support group meeting. Jennifer and Claire will speak about their organisations and Jane will talk about her writing and read from her books, ‘The Pink Party’ and ‘Welcome to the Amazon Club’. For further information, please contact Julie on (07) 571 3346.

Breast Cancer Network NZ
The hugely successful Breast Cancer Network first national conference for those affected by breast cancer was held in October 2007.  Copies of the Conference Proceedings (print) are now available for $15.00 each, and the Conference CD which includes the proceedings, many speaker presentations and additional material is available for $10.00.  Please contact the BCN office by phone, email or in writing if you would like to order a copy of either the Proceedings or CD. Breast Cancer Network: email brcanz@xtra.co.nz, (09) 526 8853, PO Box 62 666 Kalmia St, Greenlane, Auckland.

Public meeting - 7:30pm Tuesday March 18th, 2008.  Dr Meriel Watts, who will speak on "Addressing the high risk of breast cancer in New Zealand - tackling environment and lifestyle," followed by questions and discussion. BCN will update people with progress on its 2006 petition. Light refreshments will follow. Venue: Freemans Bay Community Hall, 52 Hepburn St, Freeman’s Bay, Auckland.

ORCA Women's Challenge - 13 April 2008. A day to join with 2000-3000 women in some enjoyable and healthy exercise. Walk or run, bring some friends for 8km of fun. Details from www.womenschallenge.co.nz This is an annual women's sporting event with prizes, and as the official charity for the event, Breast Cancer Network NZ receives a donation from the organisers.

Other News

(a) BCAC Website
Have you looked at the BCAC website lately – in particular the articles by freelance journalist Dara McNaught (pictured) on personal style? Dara is a qualified style and colour consultant and her suggestions may help some women cope with the impact surgery and treatment for breast cancer can have on self image.

We have some changes planned for the site over the coming months – more pages of interest and a general re-design which will make information easier to find.

(b)Thank you to our funders and sponsors
BCAC would like to thank Arnotts, the JR McKenzie Trust, Hachette Livre, the Oxford Sports Trust and David Parker for their generous donations and funding towards our operational costs in 2008.

(c) San Antonio Breast Cancer Symposium
Libby attended this important annual symposium in December 2007 and found the experience extremely worthwhile and fascinating. The conference was attended by around 9,000 oncologists, researchers and advocates from around the world. “I was impressed by the huge amount of knowledge being generated by researchers intent on understanding and curing the various sub-types of breast cancer.  This is leading to the development of treatments that are more specifically targeted to each patient’s needs, more effective and generally less toxic than the older “one size fits all” approach.  SABCS offered a great learning opportunity for advocates,” said Libby. Advocates attended nightly mentor sessions at which prominent cancer specialists summarised the day’s presentations of new data.  Libby was assigned a Hot Topic report, ‘The use of genomics in breast cancer sub-type identification, prognostic prediction and treatment optimisation’, required as a condition of her Alamo Breast Cancer Foundation scholarship. She has also summarised some of the key results announced at the conference in a more general report.  Libby’s report can be read as a pdf on the website.

(d) Update on Northern Regional Cancer Network (NRCN)
Libby and Sue Guthrie met recently with Maree Pearce, Director of NRCN and Sue attended the first meeting of the NGO forum in January. The focus of the NRCN is in three areas: palliative care, patient navigation, inequities of care. For further information on the work of the NRCN, please view the Cancer Control Council website at:

http://www.cancercontrolcouncil.govt.nz/ccc.nsf/pagesccc/23

(e) Reconstruction Update
Raewyn Calvert, BCAC Committee member and Chair of the Reconstructables (the group behind the 2007 Black Pearls calendar – copies of this beautiful keepsake calendar are available through BCAC), has spoken to Middlemore- based breast surgeon Stephen Mills who reiterated what he had said at the Rotorua Breast Cancer Conference (October 2007) i.e. delayed reconstruction is not available in all parts of NZ. Auckland and Waikato are offering delayed reconstruction but Hutt Valley Health is not and Christchurch are doing few delayed (the majority are immediate).

Raewyn feels there needs to be a drive from within hospitals to push for delayed reconstruction and to this end she plans to meet with specialists at Hutt Valley and Christchurch to ask why they cannot match Auckland and Waikato. “Breast reconstruction is placed within a ‘Stage’ system,” said Raewyn, “to be done within 6 months – but the process is being lost in confusion and inconsistency within the system.” Raewyn is collecting anecdotal evidence from around NZ so if you have a story to tell about an experience with delayed reconstruction within the public system, please contact Raewyn on rian.calvert@xtra.co.nz 

Updates on the Five BCAC Initiatives
1. To ensure consistent, high quality detection and treatment of breast cancer throughout New Zealand by promoting the development and implementation of evidence-based best practice guidelines.
Libby attended a December meeting of the Guideline Advisory Team developing clinical guidelines for early breast cancer and reported good collaboration amongst participants. However more funding is needed to complete the project and this has slowed progress. The date of next meeting is yet to be confirmed as this is now dependent upon additional funding from the Ministry of Health.

2. To support the prompt and effective implementation of the extended age breast screening programme (45 to 69)
The special Breast Screen Aotearoa (BSA) page is now live on the BCAC site. This is a result of collaboration between BCAC, Dr Madeleine Wall, Clinical Director of BSA, and Jude Cooney, Communications and Marketing Advisor for the National Screening Unit. The page can be viewed at http://www.breastcancer.org.nz/screen.htm

3. To inform and advocate for improved access to breast cancer treatment drugs
(a) PHARMAC Stakeholder Forum
BCAC members Chris Walsh, Libby and Alison Davies spoke their minds at this Dec. 3rd 2007 meeting along with a range of consumers representing New Zealanders facing a range of health issues. A survey showed that most stakeholders find PHARMAC hostile and difficult to engage with from a consumer and an industry perspective. Decision-making processes were criticised as slow, non-transparent and driven overwhelmingly by the aim of spending an absolute minimum on pharmaceuticals rather than the desire to deliver good health outcomes for New Zealanders.  PHARMAC was challenged through a Stakeholder Survey and at the Forum to deliver less “spin” and more honesty; to advocate to increase the pharmaceuticals budget in line with OECD countries such as Australia; to deliver better access to medicines for all New Zealanders; to engage in genuine consumer consultation; to separate its three currently blurred and cross-contaminated functions of evaluation of clinical drug efficacy, cost effectiveness and drug purchase; to develop a more co-operative relationship with the pharmaceutical industry and encourage NZ’s involvement in clinical trials to support this valuable research and provide early patient access to breakthrough medicines.  PHARMAC senior management attending the meeting, however, defended the status quo, suggesting to our delegates that the realistic outcome of this Stakeholder consultation is likely to be, ‘little or no change’.

(b) Judicial Review Progress
The eight Herceptin Heroines were back in the High Court the week beginning Feb. 11th to continue their case against PHARMAC’s decision not to fund the proven 12 months of Herceptin for women with early HER2 positive breast cancer. The Judge has reserved his decision. The Heroines hope to hear the outcome in March. 

 (c) JR Fundraiser
The eight Herceptin Heroines hosted a dinner and auction event in Auckland on February 23. MC Jools Topp and entertainers The Beat Girls headlined the evening, raising over $30,000 for legal costs. Dunedin-based doll designer Jan McLean (pictured) flew to Auckland with two beautifully crafted dolls made especially for the event, raising $15,000 at auction. Chris Walsh was thrilled with the amount raised.  ‘A donated bottle of Deutz, retailing at about $27, was auctioned off for $1,000, only to be handed in and re-auctioned for another $1,000. The bidder then gave the bottle to me saying he thought it had a symbolic meaning for us and the evening and we should keep it until we needed it again. This wonderful gesture epitomized the spirit of all those who have given so generously to our campaign.’

(d) Herceptin Riders
Max Cook (pictured with her bike) and her Herceptin Riders fundraiser kicked off on March 6 in Wellington. They roared into Auckland on Friday March 7 where they were met at the Sky Tower by BCAC, Jackie Blue and other supporters. The riders were in Tauranga on Saturday 8th where they met up with Julie Blake and others from Tauranga BCSS. The motorcycle riders completed their tour of the North Island on March 12 with a triumphant entry into the grounds of Parliament where the riders present a petition of 1500 signatures they collected along the way. Several MPs were in attendance and Herceptin Heroine Chris Walsh, BCAC’s Nic Russell and Anne Hayden gave speeches.

(e) Avastin
The US Food and Drug Administration approved the targeted therapy Avastin for use in advanced breast cancer in late February. A clinical trial showed Avastin, when used in tandem with taxane chemotherapy, slowed the spread of advanced breast cancer by an additional 5.5 months. Avastin was already approved for use in colorectal and lung cancers and works by cutting off the blood supply to cancer tumours.

Libby said, “Avastin is a new, targeted therapy that works in a different way from other chemotherapy drugs currently available. Its novel approach inhibits the development of blood supply to the cancer. Avastin is a promising new medicine in our arsenal of cancer fighting agents.”

It is unlikely that Avastin will be funded in NZ any time soon due to New Zealand’s capped pharmaceuticals budget which restricts spending by PHARMAC. NZ is the only country in the world with a capped budget, and lies at the bottom of the OECD in terms of access to modern oncology drugs.

To read more about the drug Avastin, visit http://www.drugs.com/avastin.html

(f) Herceptin update
Roche Holding AG announced in late February that Herceptin has been approved in Japan for early treatment in patients with HER2-positive breast cancer. Roche reported that its majority-owned subsidiary Chugai Pharmaceutical Co. Ltd received approval from the Japanese Health Authority for the use of Herceptin in the early treatment for women with HER2-positive breast cancer.  The approval is based on the 12 month regimen used in the international HERA trial.

4. To research and promote the provision of psychosocial services for breast cancer patients, their whanau, family, friends and supporters
(a) My Journey Kit Project
BCAC is moving ahead with plans to develop a New Zealand version of the Breast Cancer Network Australia’s (BCNA) wonderful ‘My Journey Kit’ resource pack for women newly diagnosed with breast cancer. BCAC representatives (Jane Rutledge, administrator Jane Bissell, Raewyn Calvert and Sue Guthrie pictured between Julie Hassard Dep. CEO BCNA at left and Lyn Swinburne CEO BCNA at right), visited Melbourne in early February to meet with BCNA to discuss the preliminary plans and to gather information. The group spent the day at BCNA offices and the information gained will prove invaluable as the project moves ahead. A special page on the BCAC site will be developed so our members can track the progress of the NZ version. 

“This is an exciting project for 2008,” said Libby. “The funds raised from the sale of the Tim Tam pink biscuits last October will contribute to the development of our Kits and we are looking forward to working with both BCNA and our member groups on this initiative.” BCAC will work on the project in consultation with Member Groups and other interested parties. More details about this soon!

5. To identify and promote breast cancer issues for Māori and Pacific women
(a) Sarvs Falefitu
BCAC was contacted by Sarvs Falefitu, a Pacific woman diagnosed with HER2 positive breast cancer. Her story features on our website at http://www.breastcancer.org.nz/stories.htm . Sadly, Sarvs’ story is all too familiar - the struggle our women must face when diagnosed with this particular type of cancer, fundraising for money to pay for more Herceptin than our government is currently offering. Sarvs writes,

“Almost 3 months after the diagnosis 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.”

Back to top