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Breast Cancer Aotearoa Coalition Update: December/January 2007
Contents
Other News
Member News
Would you like to join the BCAC Steering Group or a Sub Committee?
We are looking for three more energetic and enthusiastic people to join the Steering Group. One meeting per month in Auckland for: plotting and scheming over wine and dinner plus enjoy daily email conversation of the most witty and exciting kind you’ll ever see in your Inbox.
We also need help with our five initiatives. Join a sub committee for the initiative that interests you: email conversations (no matter where you live in NZ, we would love to have you with us), the occasional phone call, perhaps a meeting with the Steering Group if you are based in Auckland – and your energies guided towards writing letters to MPs, researching information and networking contacts.
If you are interested, please contact us at BCAC@breastcancer.org.nz. We want to hear from you. Become involved with your Coalition on a new, exciting and vital level: help BCAC to help all New Zealand women and their families.
Letter from the Lazyboy Chair
Kia ora and happy new year to all our members and friends.
Our Steering Group is looking forward to a positive year in which we can score some significant wins for New Zealand women in the fight against breast cancer.
As you probably know, BCAC has been seeking the establishment of best practice guidelines for the early detection and management of breast cancer in NZ since our beginnings in 2004. We’re delighted to report that the development of these guidelines is now under way with the formation of a Guideline Development Team (GDT) including physicians, consumer representatives, Maori and Pacific health representatives and others. The GDT will meet for the first time in Wellington early in March and I will represent BCAC on this group. I’m hoping that Wellington-based Amanda Rudd will also be able to participate for BCAC, with back-up from Chris Walsh and Sue Ellis. If you have any thoughts on this important initiative, please feed them to BCAC via our email, bcac@breastcancer.org.nz and we will represent your views in this process.
I’d like to reiterate Jane’s call for additional volunteers for BCAC’s Steering Group and our smaller focus groups working on our key initiatives relating to breast screening, guidelines, pharmaceutical access, Maori and Pacific issues and psychosocial support. There’s plenty of work to do in each of these areas to bring NZ up to the standards achieved in Australia and other developed countries, and the more help, support and input our hard-working Steering Group has, the faster we will progress. Particular roles we’re looking to fill are those of fundraiser and treasurer. We would love to have more support for Carlene Wolfgram who leads us on key Maori and Pacific issues and we’re always keen to welcome those with knowledge of oncology and pharmaceuticals. If you think you might like to devote some time and energy to helping BCAC make a difference, we’d love to hear from you!
Finally, we haven’t heard from PHARMAC for some time on their deliberations over the provision of Herceptin funding. We can only hope that the rumour of a proposed 9-week regime or a clinical trial along these lines is just that – a worrying rumour. The rest of the world is funding a 12 month regime on the basis of sound, published data showing the strong survival benefits of this approach and New Zealand must urgently follow. Any attempt to go back to square one with an attempt to establish a cut-price unproven treatment strategy would be both dangerous and cynical. Our women need access to the proven, life-saving, internationally adopted 12 month Herceptin treatment regime now.
Kia pai te tau hou ta tātou! Let’s work together to make it a great year! Libby
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.
In late December, the New Zealand Guidelines Group (NZGG) sent letters to a number of organisations, including BCAC, calling for nominations to the Breast Cancer Guideline Advisory Team. Each group was asked to nominate a candidate to participate in the development of the guideline.
The Guideline Team will meet 3 to 4 times over the next 12-month period and will review draft documents to be researched and written by NZGG staff. The first meeting will be a two-day event, with the first day consisting of training on the guideline development process. Day 2 will review and confirm the scope for the guideline.
The BCAC Steering Group has nominated Libby Burgess and Amanda Rudd as representatives with Chris Walsh and Sue Ellis ready to stand in when needed.
2. To support the prompt and effective implementation of the extended age breast screening programme (45 to 69)
Report in February/March Update.
3. To inform and advocate for improved access to breast cancer treatment drugs
Herceptin
‘Herceptin 2007’ has begun with the publication of more information from the international HERA trial in the British medical journal The Lancet (January 5th). The journal states that women with early stage HER2 positive breast cancer who took Herceptin for 12 months following surgery and chemotherapy received a ‘significant overall survival benefit’ two years later. It also commented that ‘over 2 years, the risk of cardiac damage seems trivial compared with that of breast cancer recurrence’. BCAC believes Pharmac can no longer ignore such irrefutable data that has, to date, convinced 23 of 29 OECD countries to fund the drug for their women.
‘Pharmac must now do the right thing by our women and their families,’ said Libby Burgess. ’Since June last year 200 New Zealand women have been denied access to funded Herceptin and any further delay is irresponsible and totally unacceptable. The Lancet publication leaves no plausible excuses to withhold funding and allow this aggressive cancer to go untreated in our women. A 34% survival benefit is massive and NZ women deserve this opportunity. It's time Helen Clark had a close look at New Zealand's drug funding processes that put us on a par with the very poorest OECD countries. The rest of the world has already moved ahead on this data and New Zealand must follow.’
A press release from National MP Jackie Blue (January 19th) has raised fears that Pharmac may be considering funding a 9-week course based upon the results of the small FinHer clinical trial (published early last year), sidelining the results of the large and internationally accepted HERA trial. FinHer trialled only 232 Finnish women on a 9 week Herceptin regime while HERA trialled more than 5,000 women on a 12 month course. In FinHer only 58 women received Herceptin with one chemo regime and another 58 received it with another combination. Other large US-based studies have also used 12 months of treatment, bringing the total number of women given such treatment to over 12,000, thus giving strength and certainty to the data. A 3 year follow-up report from one such study (BCIRG 006, involving 3,222 women) presented at the December 2006 San Antonio Breast Cancer Symposium confirmed the overall survival benefit of 12 months of Herceptin treatment previously reported from HERA. FinHer was ‘… poorly designed and not surprisingly, yielded a statistically insignificant result,’ said Ms Blue. ‘The Government's drug buying agency appears to be going for the cheap and nasty option. There's no scientific proof whatsoever that this will save the number of lives that a proper course could.’
BCAC will continue to campaign for the 12 month Herceptin treatment regime which has been unequivocally shown to save lives.
Tykerb® (lapatinib)
Update
This information about Tykerb access in Australia was forwarded to BCAC from member group Breast Cancer Network (source: The Cancer Council Australia):
Cancer in the News
Wednesday 13 December, 2006
Treatment: drug hope for cancer sufferers
‘Women whose breast cancer is not halted by the $50,000-a-year drug Herceptin will get free access to another high-cost medication that could improve their lifespan.
‘Drug firm Glaxo-Smith-Kline (GSK) is offering its new breast cancer treatment Tykerb free through 12 Australian cancer specialists for a short period. Tykerb has not yet been approved for sale but studies show it can delay the progression of end-stage HER2 breast cancer by about four months. The US Food and Drug Administration is expected to report back on the safety and efficacy of the drug within weeks. Australia's Therapeutic Goods Administration is also considering the safety of the medicine. About 70 Australian women are receiving the medicine as part of a clinical trial.’
Daily Telegraph, 13/12, p7
Tykerb (lapatinib) is used in combination with Xeloda (capecitabine) as a treatment for advanced HER2+ breast cancer in women who have failed to respond to or cannot tolerate Herceptin. Tykerb is currently not available in New Zealand as the manufacturer (GSK) has not yet applied for MedSafe registration. However, BCAC notes a comment in the summary of research findings from the Dec. 2006 San Antonio Breast Cancer Symposium (SABC) compiled by Research Review (www.researchreview.co.nz) that “New Zealand patients should soon have access to trials using this drug in the near future”. There are trials under way in many other countries testing Tykerb’s effectiveness against HER2 positive breast cancer in both an adjuvant setting, i.e. as an addition to chemotherapy and surgery in early breast cancer, and in advanced cancer. If you have HER2 positive breast cancer and would be interested in participating in a clinical trial with this drug, be sure to discuss this with your oncologist in case there is a chance you could be included in a future trial. Tykerb is said to be well-tolerated by patients.
A good website for learning about the clinical trials under way around the world is that of the US-based National Cancer Institute (http://www.cancer.gov/clinicaltrials). Some of the trials available closer to home can be found on the website of the Australian New Zealand Breast Cancer Trials Group, (http://www.anzbctg.org/).
Brief round-up of some results presented at the San Antonio Breast Cancer Symposium (December 2006) - summarised by Research Review:
Tamoxifen prevents breast cancer well beyond the 5yr period of use, suggesting cancer prevention rather than treatment of early microscopic disease. A trend was noted to a worse outcome if used with HRT (although the summary doesn't specify which variety of HRT and this is likely to make a difference).
LHRH agonists (e.g. Zoladex) reduce rate of relapse and death from breast cancer when used in combination with chemotherapy with or without tamoxifen
The risk of local recurrence of breast cancer after breast conserving surgery (BCS) is highest in younger women. Boost radiation to the tumour bed following BCS reduces the risk of local recurrence regardless of age, although survival was not shown to significantly improve in this trial.
Anthracycline adjuvant chemotherapy improves disease-free & overall survival in HER2 positive women.
36 month follow-up analysis of data from the BCIRG 006 study (which includes 3222 HER2 positive patients) confirms the HERA finding of overall survival benefits of Herceptin at a very early stage. States ‘Both Herceptin combinations used were more effective than chemotherapy alone further emphasising the need to have this drug funded in NZ.’
For further results from SABC, visit www.researchreview.co.nz or access the presentation abstracts online at http://www.sabcs.org/SymposiumOnline/index.asp or click the alternative link at the bottom of page 4 of the Research Review summary online.
4. To research and promote the provision of psychosocial services for breast cancer patients, their whanau, family, friends and supporters
Steering Group member Nic Russell has been examining a copy of the Australian Guidelines for this area of care and determining which aspects could be adopted here. She is particularly impressed by the role of a Coordinator of Care, a professional who will coordinate all the treatment areas for each woman, ensuring nothing is missed or left out due to a lack of communication between the specialist areas. This sounds like the perfect role for Breast Physicians! Nic is also reviewing the My Journey Kit produced in Australia by the Breast Cancer Network with a view to developing something similar here for women who have been recently diagnosed.
5. To identify and promote breast cancer issues for Māori and Pacifican women
Report in February/March Update.
Other News
Breast Physicians Update
On December 8th 2006, the Medical Council upheld its decision to revoke the specialist status of Breast Physicians, this in spite of the strongly stated views of a wide range of patients, survivors and their representatives. BCAC, the Breast Cancer Network, Breast Cancer Support, other breast cancer organisations and individuals made submissions to the Council in June seeking to reverse the decision and keep Breast Physicians working at the front line in multi-disciplinary clinics.
‘This is very disappointing,’ said Libby Burgess, ‘and yet another blow for women with breast cancer in our country. Many of us have received care from a Breast Physician and can attest to their professional competence and thoroughness. The Council’s decision is very short-sighted and means we have lost valuable resources. I’d like to thank all those people who wrote in to the Medical Council, standing up for our Breast Physicians.’
The Medical Council decided to revoke the specialist status, stating that the training and professional development of Breast Physicians was not up to standard. It is not known at this stage whether the Australasian Society of Breast Physicians will appeal the decision or review their processes to work towards compliance. BCAC will, of course, work to fully support the ASBP should they decide to undertake further action.
BCAC Now 'BCAC Inc'
BCAC achieved another milestone when it became an Incorporated Society on December 18th 2006. BCAC has also been granted charitable status, providing for tax exemptions and donor rebates.
BCAC Welcomes a New Member
BCAC welcomes the Treasure Chests Dragon Boating Team as the 15th member of our Coalition. The team from ‘The Mighty Waikato’ is now entering its third season and already has an impressive list of regattas and successes to its credit, including the joy of winning a gold medal in an open class race in Wellington last season.
The team was formed in 2004 and consisted almost entirely of women, most of whom were survivors of breast cancer and whose ages spanned 35 years. ‘There is always room for more women who have had breast cancer and would like to join us,’ says President Raewyn Calvert. ‘We are proud of our successes but our goal is more about providing breast cancer survivors with the opportunity to lead full and active lives regardless of their sporting ability, supported by a team of women who have travelled a similar journey. We want to give women the opportunity to enjoy the experience of being part of a great team and to enhance their health at the same time.’
This season promises to be another big one for the Treasure Chests as they plan to compete in regattas in Tauranga and Auckland.
The Treasure Chests would love to hear from women in the Waikato area who would be interested in joining or supporting the team. Contact Raewyn on (07) 823 3955 or rian.calvert@xtra.co.nz.
Alison Davies Reduces her Role with the BCAC Steering Group
Steering Group member Alison Davies has decided to step down from her active position on the committee and assume a more consultative role for 2007.
Alison has been a member of the Steering Group since BCAC’s beginnings when the team began working on the five initiatives determined by the members at the first Forum in November 2004. Alison has made an enormous contribution to BCAC and her depth of knowledge as a pharmacoeconomist has proved invaluable in the area of pharmaceuticals. The Steering Group, on behalf of all BCAC members, would like to thank Alison for her excellent work and dedication. Her efforts in the early stages of BCAC’s development helped to ensure that our organisation would grow from strength to strength, developing into the credible, well informed and powerful voice we provide today. BCAC will continue to benefit from Alison’s expertise through her ongoing involvement in particular projects.
