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Breast Cancer Aotearoa Coalition Update: February/March 2007 Contents Updates on the Five Initiatives Letter from the Lazyboy Chair
Would that I had time to sit in my LazyBoy these days – it has been a full on month for BCAC!! We have certainly been engaging where it counts in the struggle to bring world class detection and treatment of breast cancer to our country, so it’s all good! Our workload is growing and we encourage you to contact us (please email us at bcac@breastcancer.org.nz) to join our Steering Group or a sub-committee in an area that motivates you. Since our beginnings in 2004, BCAC has focused on the establishment of evidence-based best practice guidelines for breast cancer in NZ as one of our main objectives. Last week Herceptin Hero Amanda Rudd and I spent 2 days in Wellington with representatives of surgeons, oncologists, radiologists, pathologists, geneticists, epidemiologists, GPs, Maori and Pacific, breast care nurses, Cancer Society and others, drafting breast cancer guidelines. This group was convened by the NZ Guidelines Group (NZGG) under contract to the Ministry of Health, to develop guidelines for clinicians to ensure they are up to date with the best ways of dealing with breast cancer from diagnosis to follow-up. Our expert panel was chaired by renowned breast surgeon Ian Campbell from the Waikato. It’s a huge task, but I believe this group has the expertise, the passion and the commitment needed to develop effective guidelines. NZGG researchers will now gather the latest information on key topics, further meetings will be held, and completion is expected in February 2008. The previous week Nic Russell represented BCAC on another NZGG Advisory Team, developing guidelines for cancer referral processes. Both guidelines will help to deliver better journeys and outcomes for NZ breast cancer patients and their families. I was pleased to represent BCAC in bringing a consumer perspective to the interview panel for the Manager of the Northern Region Cancer Network (NRCN) this month. The NRCN will co-ordinate provision of cancer services within the Auckland, Counties Manukau, Waitemata and Northland District Health Board areas. This initiative fits within NZ’s Cancer Control Strategy and is built on the successful UK Cancer Network model, aiming to provide efficient, integrated and seamless services to cancer patients. PHARMAC has finally made a move on funding Herceptin, but the suggested treatment is woefully inadequate, involving only 9 weeks of treatment rather than the 12 months already funded in 23 other OECD countries. The 12 month course has been proven to be effective in improving survival and reducing the likelihood of the aggressive HER2 positive early breast cancer returning through rock solid data from several large international studies involving over 12,000 women. The 9 week course offered by PHARMAC was given to only 54 women in a tiny Finnish study and its effectiveness is unknown. As mentioned in our STOP PRESS, BCAC urges you to visit our website and send a message to PHARMAC letting them know you support the proven world class 12 month treatment for our women rather than a cut-price unproven half measure. Our lives are precious too! Check out the upcoming issue of Next magazine for Jenna Moore’s excellent article on the Herceptin issue. I’m delighted to welcome two new members to our Coalition. Our 16th member is Skip for Life. This is a wonderful initiative set up by Jacqueline Harrison and a group of Trustees to help NZ women fundraise for Herceptin treatment (see page 10 for more details). We look forward to the public launch of Skip for Life in Auckland, Wellington and Christchurch on 22nd April and hope to see you there! I would also like to extend a warm welcome to our 17th member, the Breast Cancer Support Service Tauranga Trust (page 11). This marvellous group has been helping women in the Bay of Plenty area since 1991, providing information, education and support. Such inspirational organisations add strength, expertise and solidarity to BCAC as we move forward together. Libby Updates on the Five BCAC Initiatives1.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. Steering Group member Nic Russell attended the first meeting of the Referral to Cancer Services Guidelines Advisory Team in Wellington March 27/28. The NZ Guidelines Group has chosen to develop the guidelines as a tool for GPs when faced with a potential patient diagnosis. To enable GPs to achieve best practice, the NZGG believes comprehensive yet accessible guidelines are the way forward. The focus of the first day was training, discussing best search strategies to be used in identifying signs and symptoms for each individual cancer site and the second determining the scope of the guidelines. The focus of this guideline is solely on GP access and referral. Libby Burgess and Wellington-based Amanda Rudd attended the first meeting of the broader Breast Cancer Guidelines Team on April 3 and 4 for training and to determine the scope of the guidelines (see Letter from the Lazyboy Chair). Northern Region Cancer Network Libby participated in the selection panel which has short-listed and interviewed candidates for the Network Manager for the Northern Regional Cancer Control Network. 2. To support the prompt and effective implementation of the extended age breast screening programme (45 to 69) This item is taken from the National Breast Cancer Centre’s (Australia) regular publication, Clinical Update - Breast Cancer, Issue 27, April 2007, ISSN 1328-9454. ‘BreastScreen Australia screens using mammography alone every two years. Given such findings should the screening technique or the frequency of its use be modified? Digital mammography (both direct digital, DR, and computed mammography, CR) has been shown to significantly improve the rate of screen-detected cancer in women with dense breasts when compared with film-screen mammography. While digital technology will become more widespread, its current availability is limited in Australia due to its relative newness and expense. The addition of other techniques such as clinical examination, ultrasound and magnetic resonance imaging might potentially improve diagnosis in women with dense breasts, but are of unproven benefit. Shortening the screening interval from two yearly to annual is unlikely to be of major benefit, given that most interval cancers in this study were identified within 12 months of a negative screen.’ a. Herceptin (trastuzumab) Update 1. BCAC met with PHARMAC on 7 March – the PHARMAC proposal for 9 weeks funding for Herceptin was outlined as follows:
The proposal was officially announced on 20th March with consultation submissions accepted until April 13. PHARMAC also confirmed that the DHBs have provisionally approved funding of 9 weeks of Herceptin for women with early stage HER2+ breast cancer. BCAC issued a press release on 20th March titled ‘It’s all about the money with PHARMAC’ in which Libby stated that the Herceptin debacle offers a classic case of bureaucrats overriding medical experts to prescribe treatments for patients. ‘PHARMAC’s refusal to invest in the proven, evidence based, ‘gold standard’ Herceptin treatment regimen of 12 months sets a dangerous precedent for the future funding of other high priced Pharmaceutical treatments. This issue will arise over and over as new products come up for funding consideration and if a bad process is allowed to proceed now, the people of New Zealand will suffer.’ 2. BCAC has now written two letters to NZ oncologists, urging them to support 12 months of Herceptin as the funded regime and a meeting with the oncologists is imminent. The oncologists have responded and their main concern is that if the 9 week offer is turned down, PHARMAC may withdraw and offer nothing. In response to this, BCAC stated in its second letter: “If, once all possible efforts have been made to persuade PHARMAC and the Minister that 12 months of Herceptin treatment should be funded forNZ women and it appears this will not be successful, then there arebetter alternatives to introducing the 9 week FinHer regimen as the NZ "standard". If Herceptin rationing is inevitable, thenthis should be doneon the basis of evidenceand honesty. 12 months of treatment should be acknowledged as the standard of care, with PHARMAC prepared to fund a portion of this. Women wouldthen be appropriately informed of the recommended gold standard of treatment, and would not be misled into thinking that 9 weeks is best practice care. Those able to fund further treatment could do so.” Claire Ryan has also pointed out that: “A substandard or ill-tested treatment as an alternative to nothing is still a substandard or ill-tested treatment.The enforced alternative of "nothing" does not make it any better. In fact it may be worse, especiallyif it provides false hope andlittle improvement. Pharmac's decision, if unopposed, will lead to an era of experimentation to see if that is so. Oncologists will be exposed to the risk and consequences of having to adopt an off-label, unapproved and unproven treatment for their patients. My own experience of the medical practitioners who treated me was that they were people of integrity, compassion and skill. I do not want to see PHARMAC’s decision compromise their professionalism or ability to treat their patients.” 3. PHARMAC accepted submissions on their proposal until Thursday April 12th. BCAC offered an online submission form via the website and wishes to thank all those who used it to make their feelings known to PHARMAC. 4. National Party Associate Health Spokeswoman Dr Jackie Blue took Pete Hodgson to task on March 28th with a press release in which she stated the Minister was continuing to show his “complete lack of understanding of the benefits of Herceptin”. Dr Blue was commenting on remarks made by the Minister on the Agenda programme (24 March) that only 3 out of 100 lives would be saved with Herceptin. “Pete Hodgson's comments show he is either ignorant, doesn't understand the stats, has been given incorrect advice or is deliberately attempting to trivialise and misconstrue what is a very serious life and death issue for women,” says Dr Blue. The Minister also mixed up relapse with survival when he said that for 97 out of 100 women their prognosis does not change with or without Herceptin. “This is incorrect. We know that after two years 20-30% of women will suffer a relapse when the cancer returns in the bone, brain, liver or lung. When this happens women face a serious life threatening situation. Twelve months of Herceptin treatment reduces the likelihood of relapse by up to 50% - a major influence on prognosis. His statement on Agenda completely contradicted what women have heard from their oncologists, causing distress and confusion in this very vulnerable group. Surely a competent Minister would have a much better understanding of the facts facing New Zealand women with breast cancer?” b. Tykerb (lapatinib) Update (BCAC is currently compiling a fact sheet about Tykerb which will appear on our website in April) March 14, 2007: The Food and Drug Administration (FDA) in the USA approved Tykerb (lapatinib), a new targeted anti-cancer treatment, to be used in combination with capectabine (Xeloda), another cancer drug, for patients with advanced, metastatic breast cancer, i.e. in HER2 positive (tumors that exhibit HER2 protein) patients. The combination treatment is indicated for women who have received prior therapy with other cancer drugs, including an anthracycline, a taxane, and trastuzumab (Herceptin). According to the American Cancer Society, about 180,000 new cases of breast cancer are diagnosed each year. Approximately 8,000 to 10,000 women die from metastatic HER2 positive breast cancer every year. Tykerb, a new molecular entity (NME), is a kinase inhibitor working through multiple pathways (targets) to deprive tumor cells of signals needed to grow. Unlike, for example, trastuzumab – a monoclonal antibody which is a large protein molecule that targets the part of the HER2 protein on the outside of the cell – Tykerb is a small molecule that enters the cell and blocks the function of this and other proteins. Because of this difference in mechanism of action, Tykerb works in some HER2 positive breast cancers that have been treated with trastuzumab and are no longer benefiting. GlaxoSmithKline, of Research Triangle Park, North Carolina, will distribute Tykerb. © BioSpectrum Bureau (BCAC notes that the effectiveness of Tykerb in early breast cancer is as yet unknown, and will be subject to clinical trials beginning soon). c. Tamoxifen The Australian New Zealand Breast Cancer Trials Group (ANZBCTG) announced in a press release Feb 21st that results from the International Breast Cancer Intervention Study l (IBIS I) involving women from New Zealand and Australia show Tamoxifen reduces the risk of breast cancer in women at increased risk of the disease. The research published in the Journal of the National Cancer Institute (JNCI 2007 99:272-282) also shows that, after treatment has stopped, the protective effect of Tamoxifen continues for several years while the risks of side effects return to normal levels. The IBIS l study was coordinated in Australia and New Zealand by the ANZBCTG. All women on the trial had an increased risk of the disease determined by family history, previous benign breast disease or other risk factors. The ANZBCTG has commenced a new global prevention trial, IBIS II, which will investigate whether aromatase inhibitor anastrozole (Arimidex) is effective for prevention of breast cancer in post menopausal women at increased risk. It will also investigate whether anastrozole has fewer side effects than Tamoxifen. d. Arimidex Bisphosphonate Programme Announced by AstraZeneca Pharmaceutical company AstraZeneca (AZ) have announced a subsidy available for some women taking Arimidex who are experiencing loss of bone density, a side effect associated with the drug. Women should speak with their doctors first but can also call AZ to receive an information pack on the programme (call 0800 363 200) Here is an excerpt from AZ’s publicity material. “Arimidex is increasingly being used in the management of early breast cancer, and has been shown in a number of studies to significantly reduce recurrences and improve the disease free survival of patients compared to tamoxifen.1 One of the recognised side effects of Arimidex is a loss of bone density.2 While patients who have normal bone density on initiation of Arimidex are unlikely to develop osteoporosis, a small group of high-risk women may progress.2 These women may benefit from the inclusion of a bisphosphonate such as alendronate for management of osteoporosis.3 “Unfortunately, a patient with osteoporosis must have had a fracture to qualify for subsidised alendronate. Those women who have osteoporosis, but who have not had a fracture, face paying the full cost. AstraZeneca has undertaken to cover the cost (excluding standard prescription charges) of supplying once weekly alendronate 70mg to treat these patients’ osteoporosis for the duration of their Arimidex treatment.” References:
4. To research and promote the provision of psychosocial services for breast cancer patients, their whanau, family, friends and supporters The Steering Group received an excellent information pack from the Breast Cancer Support Service Tauranga Trust. The pack is designed for women who have been newly diagnosed and contains very useful information not only about local support services but also about the prosthesis allowance, lymphoedema and other general topics dealing with breast cancer. The pack includes a useful reference booklet. The Trust offers assistance for women in the Tauranga area and can be contacted on (07) 571 3346 or by email at bcsstga@clear.net.nz 5. To identify and promote breast cancer issues for Māori and Pacific women Maori Health Review Issue 2 2007 Page Two of this issue mentions the report from the MoH, ‘Unequal Impact: Māori and Non-Māori Cancer Statistics 1996 – 2001 (Robson, Purdie & Cormack, 2006. Unequal Impact: Māori and non-Māori Cancer Statistics 1996 – 2001). The report states that Māori are 18% more likely to be diagnosed with cancer than non-Māori, more likely to be diagnosed at a later stage of their disease and twice as likely to die from their illness. The article in the Review ends by saying, ‘Urgent and committed action is necessary to address the issues raised by the researchers.’ From the same report, note the following stats for breast cancer: Māori women are: 21% more likely to be diagnosed with breast cancer,30% less likely to be diagnosed early and 68% more likely to die from it. Steering group member Carlene Wolfgram is drafting a letter to selected MPs and contacts within Māori iwi, requesting information and assistance so BCAC can better identify and promote breast cancer issues for Māori women. Other News1. Funding of Cancer Research Uneven (Excerpt from Media Release, Cancer Control Council, 14 February 2007) The report, Developing a Strategic Plan for Cancer Control Research in New Zealand, is available from the Council's website. 2. Breast Physicians Update BCAC has received an update from Breast Physician Karen Parker. Dr Parker and Dr Beverly Sweeten-Smith met with two members of the administrative staff of the Medical Council to determine what assistance the Council could offer members of the Australasian Society of Breast Physicians (ASBP) to maintain their vocational registration in NZ. While both Council members were sympathetic they said the Council was constrained by the legislation relevant to vocational branches and the unfortunate reality was there is little they can do to help. The relevant legislation is to be reviewed later in the year so the ASBP hopes their situation and that of similar medical groups will be addressed. Ms Parker and the other Breast Physicians practicing in NZ remain committed to the speciality of breast medicine. The bar for vocational registration has been set very high – registrants must demonstrate that the medicine their speciality encompasses is not practised by any other group. BCAC continues to support our Breast Physicians and maintains regular contact with the ASBP. 3. BCAC’s New Shopping Page BCAC now has a Shopping Page where items can be purchased securely online. Visit the BCAC Home Page, click on to ‘Our Shop’, view our merchandise and make your purchase! Member News1. BCAC Welcomes 16th Member, Skip for Life (This item from Skip for Life publicist, Virginia McMillan) BCAC’s newest member group, Skip for Life, is stirring New Zealanders’ consciences and taking some of the load off HER2-positive women. It all starts with a mass “skip-in” at several locations on April 22. Skip for Life has been set up to raise funds to distribute to women who have been prescrib Founder and co-ordinator Jacqueline Harrison (pictured) says she wants the public to take over where the government will not fund the treatment for the early stages of the cancer. Jacqueline acknowledges it will take time to generate a pool of money but is making a start with several launch events on April 22. A waterfront location is planned for Auckland, while a Christchurch event will take place at the local girls’ high school and in Wellington, the skipping will be done in Frank Kitts Park. The idea is to link arms and skip en masse for 500 metres, forming as long a line as possible. Skippers will be sponsored by friends, neighbours and colleagues for their efforts, and Skip for Life is encouraging everybody to get involved in some way. BCAC supporters can help by being an organiser or a skipper, by encouraging other people to take part, sponsoring someone, turning up on the day and making a donation, by buying a Liz Mitchell-designed T-shirt or buy making donations through Westpac bank. Jacqueline is a former nurse and mother of two who lives in Milford on Auckland’s North Shore. She says it was BCAC committee member Anne Hayden who inspired her to get cracking with Skip for Life. ‘Anne wrote a moving and well-researched account of Herceptin in New Zealand and the associated difficulties and unfairness for many women, in the background to her 18,000-signature petition to Parliament last year,’ says Jacqueline. ‘I felt there had to be a way to help women stressed out enough by coping with their illness, let alone having to find large sums on money for treatment.’ Jacqueline warmly welcomes all calls and emails of support and suggestions. For further information about Skip for Life, visit the website at www.skipforlife.org.nz or email enquiries to info@skipforlife.org.nz 2. … and Welcome to Our 17th Member, Breast Cancer Support Service (BCSS) Tauranga Trust BCAC is delighted to welcome BCSS Tauranga Trust to the Coalition. Established in 1991, BCSS Tauranga offers support, education and information to women diagnosed with breast cancer in the Bay of Plenty area. The group offers free services including home or hospital visits, telephone contact, group support meetings and support for partners. They also offer a newsletter, a comprehensive library and have a very useful information pack for women newly diagnosed. To contact BCSS Tauranga, call their helpline on 07 571 3346, email them at bcsstga@clear.net.nz or visit from 9 – 1230 weekdays at 56 Christopher St, Tauranga. 3. Breast Cancer Network’s Breast Cancer Conference for NZ Women Ahu Whakamua Tatou: Moving Forward Together (Excerpt from BCN Media Release 2 April 2007) New Zealand’s first national conference for women with breast cancer will be hosted by the Breast Cancer Network (NZ) in Rotorua 26 – 28 October this year. The three day conference will open with internationally acclaimed breast surgeon, breast cancer researcher and women’s health advocate, Dr Susan Love, as its keynote speaker. “Breast Cancer Network is thrilled to announce that, with the support of The New Zealand Breast Cancer Foundation, Dr Love will speak at the conference in October,” said BCN Chairwoman, Barbara Mason. Dr Love is one of the pioneers of the breast cancer advocacy movement and has spent her entire adult life working in the field of breast cancer. Perhaps best known in New Zealand as the author of Dr Susan Love’s Breast Book, now in its fourth edition, she also founded the Susan Love Research Foundation, the main aim of which is to eradicate breast cancer in our lifetime. “Ahu Whakamua Tatou: Moving Forward Together is the conference theme and it couldn’t be more appropriate,” said Dell Gee, one of the conference organisers. “This conference is convened and organised for those who have experienced, or who have been affected by breast cancer.” In preparation for the conference, Breast Cancer Network held discussion groups throughout the country to find out what New Zealand women wanted from their first conference. While the outcome of these discussion groups guided the development of the conference programme, they also revealed numerous inspirational women who have had breast cancer. Together with breast cancer experts from many disciplines, some of these women will share their journeys, and their strength, to help empower other women and their supporters to fight this disease for themselves and for their daughters and granddaughters. The conference sessions will combine presentations by speakers across the breast cancer spectrum – from detection and diagnosis, to treatment and adjusting to life after breast cancer and looking at whether there is an environmental link to breast cancer – with workshops and a creative expo by breast cancer survivors. The creative expo will bring together the talents of the many women who have survived breast in a way that shares their unique journey. More information for prospective registrants is available on the BCN website www.breastcancernetwork.org.nz/ and from Breast Cancer Network (NZ): P.O. Box 62 666 Phone 09 526 8853 Fax 09 526 8860 Email: brcanz@xtra.co.nz, www.breastcancernetwork.org.nz 4. Busting With Life Dragon Boat Team Update (From Marcia Fraser, President)
We are still looking for more people to join our team, so if you think this could be you, please phone me at home 833-9353 or mob. 021-1152-165 Marcia Fraser, President Busting With Life Dragon Boat Team Inc.
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