Breast Cancer Aotearoa Coalition Update: June/July 2007 

Contents

Member News

Updates on the Five Initiatives

Other News

Letter from the Lazyboy Chair

I begin this letter on a sad note, saying good bye to Marie Hastings who passed away on August 12th.   Marie was a wonderful worker for the Breast Cancer Network (BCN), contributing her time, energy and extensive talents to the Network’s worthy causes and projects. She had huge input into the organisation of the BCN Conference to be held in October and her absence there will be felt by all. Marie was gentle, kind, generous and hardworking. We will miss her. 

A big vote of thanks to BCN for all the work they are doing to organise the upcoming conference in October for those affected by breast cancer in NZ.  This gathering in Rotorua provides a wonderful opportunity to get together and to hear a range of excellent presenters including keynote speaker, Susan Love, renowned US breast cancer surgeon and researcher.  It’s also a time to catch up with each other, evaluate where we are at in the fight against breast cancer in New Zealand and how we want to move forward into the future.  I look forward to seeing you all there!  For more information on the conference visit the BCN website: www.breastcancernetwork.org.nz/

I’m delighted to welcome three new member groups to BCAC. The Pink Pilates Trust and re:ab in Auckland offer an exercise programme specifically designed to help women diagnosed with breast cancer regain their physical strength, rebuild self esteem, and improve their body confidence.

YWCA Encore – another wonderful programme of gentle exercise helping us to restore our physical well being and self esteem – is spreading around NZ with courses running, or soon to be available, in Whangarei, Auckland, the Bay of Plenty, Hawkes Bay, Wanganui, New Plymouth, Palmerston North, Christchurch and Dunedin. I have heard only positive comment from those who have participated in both the Pink Pilates and the Encore programmes and the popularity of Encore is evident in the nationwide expansion!

We also warmly welcome the Tauranga Boobops Dragon Boating team who, along with other teams around the country, provide a great way to regain strength and confidence in a supportive, empowering team environment.  The Boobops have joined with the Waikato Treasure Chests as “Pink Kiwis” to take on the world at a dragon boating festival on the Gold Coast next month. Go get ‘em grlz – show them Pink Kiwis can fly!

It is great to hear the eight brave Herceptin Heroines have attended the High Court in Wellington for the first session of their Judicial Review (JR), challenging PHARMAC’s decision not to fund the full 12 month course of Herceptin for women with early HER2 positive breast cancer. This session examined PHARMAC’s rejection of their application to be given Herceptin under the Exceptional Circumstances provisions. The judge is currently deliberating on this.  Later in the year, the second, more complex stage of the JR will unfold.  Here PHARMAC’s decision-making processes will be reviewed in detail in an attempt to establish the internationally adopted 12 months of Herceptin treatment as the standard of care for New Zealand women who would benefit.  This is a classic David and Goliath situation where eight individuals who have had to raise up to $100,000 each for Herceptin, are now paying substantial legal fees to challenge a decision that is likely to be detrimental to many NZ women. Their opponent is a government-funded organisation that allocates $5.06 million of taxpayers’ money for legal expenses each year. If you’d like to donate something to help these women, please visit the feature on our website.

Finally and very significantly, BCAC is honoured to welcome Rangimarie Naida Glavish as our kuia.  Naida has a fantastic track record as an advocate for Māori in many spheres including health.  Her guidance and advice will be invaluable in our pursuit of equal access to breast cancer detection, treatment and care for Māori and Pacific women. 

Nga mihi nui ki a koe Naida. He kuia mōhio, he kuia ngākau aroha koe. Nau mai, haere mai, piki mai, kake mai ki runga i te waka o BCAC. Mahia kotahi nga rerektēanga!

Libby

Member News

BCAC welcomes 20th member, Pink Pilates Trust …
The Pink Pilates programme has been specifically designed to help women diagnosed with breast cancer regain their physical strength, rebuild self esteem, and improve their body confidence. Pink Pilates is dedicated to helping women who are recovering from breast cancer surgery or treatment through the use of personalised health programs. These include a complementary blend of pilates, physiotherapy, massage, stretching and breathing techniques. This therapeutic combination aims to address both the physical and emotional side effects of breast cancer. The Pink Pilates programme is suitable for all women recovering from breast cancer and accommodates all levels of fitness. The programme consists of 10 sessions with a personal physiotherapist and each session is designed to suit the individual needs of each participant. Visit www.pinkpilates.co.nz for more information.

 … and 21st member, the Tauranga Boobops Dragon Boating Team. This information is provided for the Update by Secretary Pam Dazeley.
Boobops Dragon Boat Team started in 2003 and now in our 4th year we look back and realise how far we have come.  We began with a combined team of survivors and supporters.  Our first Regatta saw us achieve a memorable last placing! Since then we have gone from strength to strength and in Auckland last March (much to our delight) we won both Breast Cancer races and brought home the Trophy.

In February, Boobops hosted a most successful Super 12 Regatta which was a wonderful introduction to Dragon Boating in our area.  Plans are well under way for another regatta next February. The club is about to expand and this coming season will see two more teams participating. We are also hoping to achieve the status as a 100%   survivors’ team which is now the criteria for festival racing.  Boobops and Waikato Treasure Chests have joined forces and are planning to compete in a Dragon Boat Festival in Coloundra (Sunshine Coast) in September.  The combined team “Pink Kiwis” is now training together regularly, rain, hail or anything but warmth. Winter training is a new experience for us all. 20 women clad in layers of thermal gear, beanies and gloves in a dragon boat may never be photographed, but is a sight to see.

Dragon boating is so much more than just a sport to us.  We appreciate and value the camaraderie of an incredible group of women.  Our aim always is to support and empower women after breast cancer while increasing fitness and good health. 

For further information about joining our teams as a survivor or supporter please contact Pam Dazeley (secretary) (07) 5744196 or Liz Sinclair (president) (07) 5756350

… and 22nd member, YWCA Encore.
Encore is a gentle exercise programme conducted by women for women to inspire and assist those who have had breast cancer. The Encore programme provides a supportive environment where women can share their emotional experiences and participate in physical activities specifically designed for women who have undergone mastectomy, lumpectomy and/or breast reconstruction. The exercises are specially designed to target areas that have been affected by breast cancer surgery. The hydrotherapy exercises are considered particularly helpful. The classes are also an opportunity for women to share their experiences in a safe and understanding environment. The YWCA Encore programme assists women who have had breast cancer surgery regain their mobility, flexibility and confidence though gentle exercise and support. Participation in Encore is free. Please call 0800 ENCORE (0800 362 673) for more information

BCRT farewells Andréa Lamb
This item from Alison Taylor, Chair BCRT 
‘It is with sadness I write to you on behalf of the trustees of The Breast Cancer Research Trust to advise that Andréa Lamb has decided to step down from her role as Events Trustee.  After more than 4 years with us Andréa is taking a well earned break and is going to focus on the business she runs with her husband Bert. I would like to take this opportunity to thank Andréa in particular for her substantial work for the Trust.  Having sole responsibility for the Events portfolio of The Breast Cancer Research Trust is a huge and time consuming task - one that Andréa has excelled in. With her dedication on a day to day basis Andréa has greatly assisted us all in our mission, ‘to find a cure for breast cancer in our lifetime’.  She will be sorely missed. We look forward now to inviting Andréa and Bert to our future events, so that they can continue to be involved in the platform Andréa has created through her phenomenal event organising skills.’

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 the second meeting of the Early Breast Cancer Guideline Advisory Team meeting on 10th August.  Aims of this meeting:

• Reconsider, refine, reorder priority research questions and identify missing elements that need to be covered
• Make decisions on overall structure and focus of guideline to provide cohesive framework within which to incorporate the research questions and ultimately the GAT’s recommendations
• Discuss results of search strategies in relation to each of the questions

The team of clinicians, NGO and consumer representatives involved in this project are all absolutely committed to ensuring our NZ early breast cancer guidelines are comprehensive and effective.  There is some concern that the NZ Guidelines Group now realises it has taken on a very big project here but the GAT team and the NZGG will meet again in October and December to keep the process moving towards a successful outcome.

Nic Russell attended the Cancer Referral GAT meeting. The focus of the referral guidelines is more a diagnostic tool for GPs and consumer input has been minimal. Dr Richard Sullivan has stipulated that a recommendation be put forward that psychosocial guidelines be developed separately and consumer input would be essential here. The referral guidelines will include information about how to communicate with patients as laid out in the NICE guidelines.

2. To support the prompt and effective implementation of the extended age breast screening programme (45 to 69)

Expanding BCAC website information on Breast Screening programme
BCAC seeks to provide more information about the extended age BSA programme (45 – 69) on our website to encourage eligible women to enrol for mammograms. To this end, we communicated with Dr Madeleine Wall, Director of BreastScreen Aotearoa in late July, suggesting a link from the BCAC site be created, promotional information be placed on the site and an interview with Dr Wall be placed there too. We are awaiting her response.

BCAC will meet with Nelda Taurua, the Health Promotion / Recruitment coordinator for BreastScreen Aotearoa Waitemata, in the near future to further develop our co-operative relationship with BSA.

In response to a written Parliamentary question, MP Jackie Blue received (August 6th) the following information on breast screening rates:

‘In the following information, each coverage rate shown is the percentage of women in the eligible age group who attended BreastScreen Aotearoa (BSA) screening over the 24-month screening period from 31 December 2004 to 31 December 2006.  The eligible population is the projected female population from the 2001 Census as at December 2006, the midpoint for the 2006/07 financial year. The age-specific coverage rates of eligible women for the 24 months to December 2006 were:
50–64 year age group   –   62.0 percent
65–69 year age group   –   60.3 percent
45–49 year age group   –   35.8 percent.’
BreastScreen Aotearoa’s target is to screen 70% of women eligible for the programme.  Discussions with Dr Wall suggest BSA has built up its screening resources and now aims to actively recruit women into the programme.

3. To inform and advocate for improved access to breast cancer treatment drugs
a. Herceptin (trastuzumab) Update
1. From July 1st 2007, PHARMAC offered funded Herceptin, concurrently with adjuvant taxane chemotherapy, to women with early stage HER2 positive breast cancer for a 9 week treatment period. The internationally accepted ‘gold standard’ of treatment, now funded by 24 OECD countries (including Australia, the UK and Canada) is 52 weeks. PHARMAC is being assailed on a number of fronts about this decision.

2. BCAC issued a press release describing the funding as a ‘partial subsidy’. Data presented at the recent meeting of the American Society of Clinical Oncology (Chicago, June 1-5) showed that after 4 years of follow-up, women who had been treated with Herceptin for 12 months were 52% less likely to have had a return of their cancer and 35% less likely to have died from it. ‘These figures speak for themselves,’ said Ms Burgess. ‘New Zealand women will continue to wonder why their lives are valued less than those of women in the 24 OECD countries now funding 12 months.’

 3. PHARMAC published 20 pages of justification for their funding of only 9 weeks in the NZ Medical Journal (NZMJ) and immediately set up a link from their website to this.  Two patient information booklets written by PHARMAC can be viewed at http://www.pharmac.govt.nz/herceptin.asp. The NZMJ “publication” has been strongly criticized in an excellent response from oncologists Richard Isaacs and Marion Kuper-Hommel and statistician Chris Frampton, three experts who care enough to challenge on behalf of NZ HER2 positive breast cancer patients. 

4. A Herceptin Petition initiated by Mandy Carter of Nelson closed on August 10th. The Petition requested that the government fund 12 months of Herceptin and will be presented to Parliament on August 14th. In late July the Petition had recorded over 10,000 signatures. (The Anne Easter Hayden Herceptin Petition, presented to Parliament in 2006, contained over 18,000).

5. Radio NZ journalist Karen Brown interviewed BCAC for a special Herceptin Insight programme which aired on Sunday August 12th. BCAC’s Libby was interviewed along with Chris Walsh (spokesperson for the eight women responsible for the Judicial Review), oncologists Richard Isaacs, Mike Findlay and Vernon Harvey, statistician Chris Frampton, regulatory body Medsafe’s Stuart Jessamine, PHARMAC’s Matthew Brougham and Women’s Health Action.

6. BCAC continues to support the Judicial Review of PHARMAC’s decision to fund only 9 weeks. The Review in the High Court has been launched by eight women, the Herceptin Heroines. Information about the women and progress updates can be found on our website. The women are actively fund raising to cover legal fees. Donations are most welcome and can be made via the website – follow the JR links from the homepage. The following abridged update comes from spokesperson Chris Walsh:

“The Upper Hutt Cosmopolitan Club was the place to be on Sunday July 8th as the Herceptin Heroines held another successful event to raise funds for their Judicial Review. Well known performer Pinky Agnew entertained a crowd of 150 with her unique blend of stories and poetry. Ms Agnew donated her time and talent to the fund raising event and orchestrated the auction with pomp and ceremony.

“The interim application filed at the High court in Wellington on Monday August 6th signals the beginning of the Judicial Review against PHARMAC. The proceedings were focused on the plaintiffs’ application to PHARMAC under the Cancer Exceptional Circumstances criteria where all eight plaintiffs were declined funding for the life saving drug Herceptin. The criteria that PHARMAC has set for access to this funding were put under the spotlight in the hearing and Walsh believes that all plaintiffs have been disadvantaged in the way the criteria have been interpreted and applied.

“A week after the interim hearing, a timetable will be set for the hearing of the substantive Judicial Review. This review will deal with the wider implications of PHARMAC’s decision not to fund the 12 months of Herceptin treatment. This review will have implications for all NZ women who are diagnosed with HER2 positive breast cancer. At the moment women are being offered a sub- standard treatment regimen of 3 treatments as opposed to the international standard of 17 treatments. We don't want the sub standard treatment to become the 'norm' and believe that NZ women deserve better.

“Thank you to all our supporters out there who have donated funds to help with our legal fees (we’re still trying to reach our target) and to all women who are affected with breast cancer and their families and friends. We have a very dedicated and hard-working legal team fighting for us and we feel blessed and very fortunate to have such support. In the words of Simon and Garfunkle ‘silence like a cancer spreads’. If we say and do nothing they think it’s ok. We can't remain silent. We can't let the cancer spread.”

STOP PRESS: UPDATE 9 August 2007
Decision pending. The high Court in Wellington was the scene for the interim relief application put in by the 8 plaintiffs, the HER2 positive breast cancer women. The hearing lasted one and a half days and at the end, the Judge reserved his decision. Spokesperson Chris Walsh said that they expect the decision will be fairly soon and added that the group were keen to move things on and get to the substantive hearing where the 12 months of funding for all NZ women would be challenged.

b. Aromasin (exemestane) funded
The aromatase inhibitor exemestane (Aromasin) will be funded by PHARMAC from August 1st. However, exemestaneis the first and only of the aromatase inhibitors that PHARMAC has fully funded without the need for a Special Authority approval. The other twoare provided free of charge to patients thanks to partial subsidies from Novartis (Femara) & AstraZeneca (Arimidex).

‘It is good that women and their oncologists will have this additional choice,’ said Libby. ‘Access has been made easier now that no Special Authority is required and PHARMAC is funding Aromasin fully.’

Aromasin, Arimidex and Femara are used as treatments for hormone receptor positive breast cancer in post-menopausal women. Aromasin, like the other two aromatase inhibitors, is taken daily in pill form for up to five years.

4. To research and promote the provision of psychosocial services for breast cancer patients, their whanau, family, friends and supporters
a. ‘My Journey Kits’.
Work on the development of a New Zealand version of the Breast Cancer Network Australia’s ‘My Journey Kit’ is continuing as medical oncologists review and offer input.

b. Articles about sex after breast cancer.
Steering Group member Jane Bissell has written two articles dealing with ‘Sex after Breast Cancer’, with input from New Plymouth sex therapist Jane McPherson. These have been published in BCN’s Upfront Newsletter (Issues 72 and 74) and will be reproduced on the BCAC website in August.

5. To identify and promote breast cancer issues for Māori and Pacific women
a. BCAC welcomes Naida Glavish as kuia
BCAC is honoured to announce that Rangimarie Naida Glavish has agreed to be our kuia. ‘I have spent my whole adult life as an advocate for the Maori people,’ says Naida. ‘In May 1984 as a humble toll operator I challenged the might of the then Post Office and won for us the right to use our kupu ‘Kia Ora’ across Aotearoa me te Waipounamu. I am most certainly a lot less naïve now. I am always reminded of the profound wisdom of our kaumatua Sir James Henare when he said, ‘We have done too much to not do more, we have come too far to not go further.’

Naida is the Chief Advisor Tikanga at the ADHB, and amongst many past accomplishments, a former Fisheries Commissioner, Maori Health Manager for the Auckland CHE, a founding member of Te Oritenga Restorative Justice Team and a teacher. Naida currently serves on several Advisory Boards.

Other News

Month of Exercise
A year 13 student at Wellington Girls’ College is raising awareness and funds for breast cancer by organising a ‘Month of Exercise’ campaign for students in August. Katy Atkinson (pictured) believes that young people need to know more about a disease that claims the lives of over 600 New Zealand women every year. Funds raised from the project will be donated to BCAC.

‘These women are our mums, grandmothers, aunties, sisters, cousins and friends,’ said Katy. ‘We’re encouraging students at Wellington Girls’ College and the boys at Wellington College to participate in a fun project of sponsored exercise and we’ve chosen the Breast Cancer Aotearoa Coalition (BCAC) as our charity. I wanted the boys to take part because men get breast cancer too.’

The students are seeking sponsors for their exercise fund raiser – if you would like to help them, please phone Katy on 0274903855 or email BCAC. Further information can be found on our website.

Pilates Classes in West Auckland
Breast Cancer Support’s Sheryl Krissansen and Waitakere Hospital breast nurse Marilyn Bellingham have been working together to develop a programme of Pilates and other simple exercises for women. Sheryl has the use of the Marae within the grounds of Waitakere Hospital to conduct the classes and also has her own dance studio in New Lynn which could also be used as a venue. Please forward this information to women you feel may be interested in forming a class. Contact Sheryl at danztx@xtra.co.nz  or on 027 2800 294.

Dr. Marion Kuper-Hommel joins BCAC
Waikato Medical Oncologist Dr. Marion Kuper-Hommel has joined BCAC as Medical Advisor. ‘We are delighted to have Marion on board,’ said Libby. ‘It is essential for BCAC to remain in touch with the latest evidence and developments in the international and NZ breast cancer scenes and Marion can help us immensely with this.’ 

Dr Kuper-Hommel trained in the Netherlands and has developed a special interest in breast cancer. She has initiated the Breast Special Interest Group, a group of breast cancer specialists who are working together to improve day to day breast cancer care in New Zealand. Dr Kuper-Hommel is also actively involved in many clinical breast cancer trials in New Zealand. She will be the Principal Investigator for the ALTTO clinical trial, soon to begin in this country.  ALTTO will recruit 8,000 patients with early HER2-positive breast cancer worldwide and will compare the effects of Herceptin and new targeted therapy lapatinib (Tykerb) separately and in combination.  All patients in the trial will receive 12 months of therapy.

BCAC farewells Nic Russell from the Steering Group
BCAC Steering Group member Nic Russell (pictured with Anne Hayden on left) has stepped down due to professional and personal commitments. Nic has made a great contribution to the BCAC Herceptin campaign and to BCAC’s psychosocial initiatives, more recently doing the groundwork for the NZ version of the BCNA’s My Journey Kits. ‘We are grateful to you, Nic, for providing a media face for Herceptin Heroes, for your passionate, articulate advocacy and for your ongoing commitment to establishing broad support services for cancer patients,’ said Libby. Nic will be busy with her charity Kenzie’s Gift, finishing her university studies and writing a book about her experiences.

New information on lymphoedema and exercise
The Australian National Breast Cancer Centre’s website (www.nbcc.org.au) is a wonderful resource. They have included some recent information about lymphoedema after treatment for breast cancer which can be found at:

http://www.nbcc.org.au/resources/resource.php?code=LFTC

There are also results of an interesting study re: effects of programmed exercise for women with early breast cancer:

http://www.nbcc.org.au/resources/clinicalupdate/cubc-iss28.html

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