BCAC briefing for the Minister of Health, Tony Ryall, June 2009

Five members of the BCAC committee visited the Health Minister, Tony Ryall, in June 2009. The purpose of the visit was to thank the Minister for his positive and prompt initiatives to benefit those with breast cancer and secondly to identify eight key breast cancer issues with proposed solutions for the Minister’s consideration.

Major issues facing breast cancer patients in NZ

Breast cancer is the most common cancer to affect women, with around 2500 women being diagnosed and 650 dying of this disease each year.  According to the most recent information available, provided within the Northern Region Cancer Network,  New Zealand’s five year survival rates for breast cancer at around 84.4%, are lower than those in Australia (87.8%), the US (88.7%) and Canada (87%). 

New Zealand women diagnosed with breast cancer face several issues which impact negatively on their treatment options, survival rates and quality of life.  These include:

• Long waiting times for breast cancer treatment – surgery, chemotherapy and radiation
• Low and slow access to medicines
• Inconsistencies in provision of treatment and care around the country
• Lack of high quality, detailed cancer data collection
• Poor outcomes for Māori and Pacific women with breast cancer
• Opportunity for early detection lost through low uptake of breast screening
• Limited genuine consumer representation on various government cancer-related organisations
• Lack of psychosocial support for women with breast cancer 

Waiting times for cancer treatment

The problem:

• Our membership informs us that in many areas women are waiting too long for treatment – surgery, radiotherapy and chemotherapy.  For example, BCAC knows of many women waiting three months or more between surgery and chemotherapy.  Such delays not only cause distress to patients and their families but are also likely to impact negatively on outcome. 
• Our discussions with clinicians within DHBs indicate that there are severe shortages of frontline oncologists and medical staff able to provide the necessary services.
• Systems for collecting data on waiting times for cancer treatment are inconsistent and incomplete among the DHBs, preventing a full and clear understanding of the current situation.

A number of issues have been highlighted to BCAC through our participation in a range of regional and national initiatives to fight cancer. 
The Cancer Registry Act 1993 does not authorize/require sufficient collection of information to enable DHBs and regional cancer networks to forecast demand for future services or even to provide information to reveal the extent of demand for services at present.
Information relating to stage at diagnosis and treatment provided need to be collected.
Tumour stream analysis should be urgently implemented across the spectrum of cancers to enable critical and rate-limiting steps in treatment pathways to be identified allowing current resources to be used more efficiently.  An example is provided in the Northern region where tumour stream analysis is being implemented for lung and bowel cancers.
Significant numbers of patients are missing appointments, resulting in wasted resources and late treatments. Transport needs and booking systems require analysis, along with reasons for patient failure to attend appointments, so systems can be improved and resource use optimized.
On the positive side we note that the opening of the private Auckland Radiation Oncology clinic has had a dramatic and positive impact on waiting times for breast cancer radiotherapy in Auckland, despite much concern and protestation from the northern DHBs that this clinic would impact negatively on DHB workforce.

The Solution:

We welcome the Minister’s recent ultimatum to DHBs to decrease waiting times for provision of cancer treatments. 

• We note the Minister has highlighted the provision of radiation oncology and believe further encouragement is needed for speeding the provision of surgery and chemotherapy. 
• We suggest that DHBs be held accountable for ensuring adequate staffing in critical areas such as medical oncology, surgery and radiation oncology.
• Comprehensive, detailed data collection is needed to allow understanding of current performance and prediction of future needs.
• Tumour stream analysis should occur as a priority within the regional cancer networks to speed treatment pathways.  Knowledge and advancements gained through this process should be shared among regional networks to speed improvements across all the regions.

Low and Slow Access to Medicines

The problem:

• New Zealanders, including women with breast cancer, have low and slow access to innovative medicines
• The PHARMAC model for funding medicines is failing to deliver good health and wellbeing outcomes to New Zealanders. 

Over recent years, New Zealand has fallen close to the bottom of the OECD rankings in provision of medicines to our population.  The 2007 Karolinska Report showed that of 25 countries surveyed only Poland spends less on cancer medicines.  We acknowledge some increases since this time but we are still low in the rankings. 
New Zealand cancer mortality rates are high compared to countries such as Australia and European countries. NZ’s five year survival rate for breast cancer at around 84.4% compares poorly with rates in Australia (87.8%), the US (88.7%) and Canada (87%). 
BCAC considers that one of the reasons for NZ’s poorer survival rates is a restricted approach to pharmaceutical spending which does not take into account the long-term benefits of investing in world-class, innovative medicines. Such thinking has contributed substantially to NZ’s low level of investment in pharmaceuticals and this impacts negatively on New Zealanders with a wide range of conditions.  For example, PHARMAC in its Annual Report regularly highlights the “flatlining” of spending on pharmaceuticals since 1993.  This short term cost-driven model fails to take into account the economic and social impacts of allowing disease to progress and allowing New Zealanders to suffer when significant improvements to health, well-being and survival could be achieved through investment in innovative medicines.
Women with breast cancer have suffered directly from delays in funding important treatment medicines.  For example, the taxanes have long been recognized as effective chemotherapy agents.  Australian women were given funded access to a taxane in 2001 but PHARMAC failed to provide access in this country until 2006.  Most New Zealand women still receive the more primitive form of this drug, taxol (Paclitaxel), an off-patent version that causes more severe side-effects and takes longer to infuse than the synthetic version taxotere (Docetaxel), now widely available in Australia and other similar countries.
Two other breast cancer medicines funded in Australia and not in New Zealand are the innovative and effective anti-emetic aprepitant (Emend) and the targeted anti-HER2 medicine lapatinib (Tykerb), used in advanced breast cancer.  Tykerb has a different mode of action from Herceptin and is currently being trialed in combination with and alongside Herceptin in early breast cancer.
The detailed medical and economic submissions of expert clinicians and patients alike appeared to be ignored by PHARMAC when provision of Herceptin, a targeted antibody that increases disease free survival and overall survival in early HER2 positive breast cancer, was sought. Strong government action was needed to overturn this position. 
PHARMAC’s Consumer Advisory Committee unfortunately does not adequately represent consumers of medicines in these and many other issues and nor does it seem able to consult with consumers.  This has led to the formation of the Access to Medicines Coalition, of which BCAC is a member, and has forced patient groups to seek access through other channels.  This lack of confidence in PHARMAC’s processes calls for reform.
PHARMAC currently has responsibility for determining the clinical efficacy of medicines, determining the cost efficacy of medicines and also purchasing medicines.  These functions should be separated so that they can each be performed independently and expertly without conflicting and compromising each other.  New Zealand should look to such other countries as Australia, where these roles are separated, for a model of reform of our mechanisms for providing medicines.  This will be all the more critical if New Zealand is to successfully meet the challenge of a future where more targeted, effective high cost medicines will become available.

The Solution

• Extensive review is required of the PHARMAC model for evaluating medicines. The functions of evaluating clinical efficacy, evaluating cost efficacy and purchasing medicines should be undertaken by independent expert bodies to ensure the integrity and quality of each of these processes and their outcomes.
• Further investment in pharmaceuticals is needed to bring New Zealanders’ access to medicines in line with other similar countries in the OECD.
• Any new system should establish a mechanism for genuine, effective consumer input into evaluation processes.
• Docetaxel should be funded as a standard chemotherapy option for use in both early and advanced breast cancer.
• Aprepitant should be available for patients suffering acute and delayed chemotherapy-induced nausea and vomiting.
• Lapatinib should be provided to appropriate patients with advanced HER2 positive breast cancer.

Herceptin clinical trials update

Updates were provided on two Herceptin clinical trials at the recent St Gallen expert consensus meeting in Switzerland as follows.

• For ethical reasons, the four year follow up data from the HERA trial of 12 months of Herceptin following chemotherapy can no longer show the full extent of the impact of Herceptin versus no Herceptin because once the positive impacts of Herceptin on disease-free survival were known around 66% of patients switched from the control arm of the trial to the Herceptin arm.  However, despite the fact that this crossover occurred on average 2 years after entry into the trial, these patients still benefited from the treatment.  We suggest on the basis of these results that clinicians in consultation with their patients should now be able to provide Herceptin after a longer delay than the current three months after the end of chemotherapy.

• After five years of follow-up on the 9 week FinHER trial the early disease-free survival benefits have been lost for patients on this short Herceptin regimen. Prior to the Minister’s intervention, the 9 week course of Herceptin was the only one which was government funded. BCAC is concerned that New Zealand patients may be exposed to a short treatment regimen that no longer has supportive data, either as an available (although unregistered) treatment regimen or in the SOLD clinical trial.  We suggest that the Minister consult the Chair of the Breast Cancer Special Interest Group of the New Zealand Association of Cancer Specialists on the advisability of allowing this treatment and associated SOLD clinical trial to continue.

Inconsistencies in provision of cancer services across the District Health Boards

The problem:

• Inconsistencies in access to a range of services across the 21 DHBs. 

In response to the differences in the availability, quality and timeliness of provision of breast cancer treatments and services around New Zealand, BCAC has worked on the development of a best practice Guideline for the Management of Early Breast Cancer as a priority objective since its formation in 2004. The committee is delighted that the Guideline is now close to publication and is hopeful that its implementation will occur soon and will set a high standard for clinicians and service providers around the country, with the result that New Zealand women will receive the best possible treatment and care regardless of where they live.  The Guideline has been produced through strong and successful collaboration between clinicians and consumers working with researchers in the NZ Guidelines Group (NZGG).  
The Guideline needs to be publicized and fully implemented. Uptake should be carefully monitored and reported on to ensure its effectiveness. Funding is needed to enable the NZGG to update the Guideline on a regular basis to ensure that all relevant medical personnel remain cognisant of best practice in their areas and of the expectation that they will deliver this to their patients.
Further development of frontline medical workforce will be needed to ensure DHBs have the capacity to deliver the treatments and care outlined in the Guideline. Monitoring of performance should ensure that DHBs understand their responsibility to prioritise provision of best practice care.

The solution:

• Implementation, monitoring and regular updating of the best practice clinical Guideline for the Management of Early Breast Cancer
• Increasing development of frontline medical workforce

Lack of a comprehensive Cancer Register

The problem:

• Lack of comprehensive cancer data

Currently New Zealand does not collect comprehensive data on cancer.  We gather basic information about occurrence of the various types of cancer across ages and ethnic groupings, and mortality.  We do not formally collect data on stage, precise diagnosis, the nature and timing of interventions and outcomes that would allow us to understand the full demographics of the disease, the impacts of treatments and the performance of service providers.  There is difficulty in gathering and collating data from both public and private providers.  This lack of data compromises our knowledge of the nature and extent of the problem, and our ability to identify effective interventions, to identify priorities and inequities and to effectively plan for the future.
A notable exception is the Auckland Breast Cancer Register, which we believe is soon to be rolled out in centres beyond Auckland.  Comprehensive data has now been collected in the Auckland Register for 10 years providing a powerful analytical tool that allows fuller understanding of the disease in this region and more precise planning for resource and service delivery.   However, a national cancer register including data on breast cancer is urgently needed to allow full understanding of the incidence, nature and control of cancer in New Zealand.

The solution:

• Establishment and rapid roll-out of a comprehensive national Cancer Register

Poor outcomes for Māori and Pacific women

The problem:

• Poor breast cancer outcomes for Māori and Pacific women

Māori and Pacific women tend to have breast cancer at a younger age, a higher proportion of HER2 positive breast cancer and a higher mortality rate than European women. Specifically, Māori women have an 8% higher incidence of breast cancer than non- Māori women but their mortality rate is 66% higher than in non-Māori women. Pacific women’s rate of breast cancer is comparable to other women but their mortality rate is 54% higher.
Māori and Pacific women are less likely to attend breast screening and tend to present with the disease at later stage, so targeted recruitment for screening is especially important for this group.  Once diagnosed, Māori women are less likely to attend medical appointments during the treatment pathway.
A number of Māori and Pacific women have spoken to us about whakamā (shame), wehi (dread) and mokemoketanga (being alone/unsupported) as barriers to their being screened and treated.
Our Māori advisors tell us and studies demonstrate that local community and iwi-based programmes are more effective in involving Māori in health programmes.  Such programmes are needed to recruit Māori women for screening and to support those diagnosed and their families through their cancer pathway, ensuring effective treatment is provided. A holistic whanau ora (healthy family) approach is needed, with input from Māori communities and health providers.  
A good example was provided recently in a focused community programme that raised breast screening rates from 45% in 2003 to 98% in 2005 and 2007 in a rural community with a high Māori population. Such programmes give effect to the key principles of therapeutic intervention for Māori; whakapiri (engagement), whakamarama (enlightenment) and whakamana (empowerment.) 

The solution:

• Provision of resources allowing establishment of community and iwi-based programmes for detection of breast cancer
• Resourcing of community and iwi-based programmes to support those diagnosed through their breast cancer pathway.

Opportunity for early detection lost through low uptake of breast screening

The problem:

• Breast screening rates of less than 70% of eligible women, especially Maori and Pacific women.

The national breast screening programme, BreastScreen Aotearoa (BSA), is now 10 years old, having commenced in 1998. In July 2004 the breast screening programme was extended from women aged between 50 and 65 years to those aged between 45 and 69 years. The target is to screen 70% of eligible women.
Coverage for the general population is increasing and for women aged between 50 and 69 years, was in May 2008 about 64%. However, the percentage of eligible Māori women in that age range who had been screened as at May 2008 was about 47% and of Pacific women 49.5%.
Less than 50% of eligible women between 45 and 49 have been screened. 
Some of the problems which contribute to the less than 70% uptake are:

• Identifying and inviting eligible women to be screened when there is no data base or population register which BSA can access. The current situation is that eligible women usually have to request enrolment.
• The issue of equity. The disparity between Māori/ Pacific women and others has already been raised in paragraph 5 above. The significantly lower rates of eligible. Māori and Pacific women who have been screened are an obvious manifestation of the problem.
• Limited work force. There continues to be a national shortage of radiologists and Medical Radiation Technologists (MRTs). Involvement in breast screening is often seen as a temporary stop in a career pathway and not a long-term and vital career in itself.
• Disparity in process for obtaining government funded mammograms. Asymptomatic women between 45 and 69 years old contact BSA. Symptomatic women are referred to District Health Board outpatient services. High risk women and some symptomatic women are dealt with by community referred services. Confusion exists not only among women but also by advocates, administrators and medical practitioners as to which of the three processes or pathways is appropriate for a particular woman. There is a lack of co-ordination between the three. This can result in delayed diagnosis of breast cancer because women have not been referred to the correct pathway and in particular, symptomatic women being incorrectly referred to BSA with ensuing distress and delay.

The solution:

BSA has identified these problems and has developed a strategic plan for 2008 to 2013 which in BCAC’s view attempts to comprehensively and carefully address and manage the issues. Just as some examples, BSA:

• Identifies the need for a population register and notes data indicating that the most effective proven means of improving coverage is to identify and invite unscreened women rather than waiting for them to take the initiative;
• Recognises that more than identification and invitation is necessary to reach out to Māori and Pacific women. BCAC encourages and endorses such programmes as BSA’s Communications Campaign in 2008 but would also ask that more high profile Māori and Pacific women, including MPs, be seen to be taking part in and supporting screening and that continued efforts be made to include local community and iwi-based programmes
• Supports more accessible screening sites, prompt and flexible screening services, a greater collaboration with local health promoters and working with PHOs to target inequalities.
• Is considering employing non-radiologists to perform some assessment procedures and is encouraging the development of proficiency certificates at NZQA level 8 as the first step in the development of a comprehensive MRT pathway.
• Wishes to work with the different teams responsible for the different screening pathways to ensure a co-ordinated pathway to publicly funded mammograms and national guidelines.  BCAC’s experience of women confused and distressed by the current system indicates that a co-ordinated and prompt solution is crucial and we would hope that it could be implemented well within 5 years.

BCAC commends BSA’s strategic plan to the Minister and asks that the Government give the plan its support.

Limited genuine consumer representation on various government cancer-related organisations

The problem:

• Key cancer control organizations have failed to establish consumer representation as an integral element of their structures
• Some organizations have established ineffective systems for representing consumers

BCAC is concerned that cancer consumer representatives are not included as an integral part of New Zealand’s cancer control systems and structures, and that opportunities for improving decision-making and speeding progress in delivering effective patient-centred services are consequently being lost.  
It is most unfortunate that the Cancer Control Council does not include consumer representatives.  The Ministry of Health produced a draft Guidance for the treatment of persons with cancer based on a similar UK document but appears to have omitted all references to consumers from the original document. Network Executive Groups (NEGs) of the regional Cancer Networks do not include consumers and, in the case of the northern region, our continuing efforts to establish consumer representation on the NEG have been repeatedly rejected.
PHARMAC has a “Consumer Advisory Committee” that seeks its advice on consumer-related issues from PHARMAC itself but not from the wider community and certainly not from BCAC.  This committee has failed to consult or represent the populations for whom it should provide a voice.
The inclusion of genuine consumer representation in cancer control and other health areas is recognized internationally as best practice, providing valuable insights and wisdom across the cancer continuum and ensuring the delivery of effective patient-centred services.  New Zealand is lagging behind in this area.  There appears to be an element of bureaucratic inertia and “patch protection” standing in the way of innovation and the fresh perspective that consumer representatives can bring to cancer control.  Consumer representatives should be recognized as having a valuable experience-based contribution to make to the design and implementation of cancer control programmes.  It is important that those appointed to roles representing consumers have a demonstrated ability to understand and represent elements of the community affected by cancer.  Such people are available in our community and they should be recruited to make a valuable contribution to cancer control.

The solution:

• Genuine consumer representation should be established at all levels of cancer control as a matter of priority
• Effective training should be provided to support the development and maintenance of skills in consumer representatives

Lack of psychosocial support for women with breast cancer

The problem:

• Little or no psychosocial support is provided to cancer patients in the public health system

At present there is little psychosocial support provided within the New Zealand public health system to cancer patients.  Instead, most psychosocial care and support is provided by Non Government Organisations.  Such organizations rely on public donations and funds provided by community grants boards such as the Lotteries Commission, where they must compete with all other community organizations, sports clubs etc.  The Cancer Control Council recognizes that this puts the public at risk in the event that organisations supporting cancer patients are unable to continue providing their services.
BCAC has published the ‘Step By Step’ support pack, a resource broadly based on the My Journey Kit distributed in Australia by the Breast Cancer Network Australia and funded to the extent of $150,000.00 per annum by the Australian Federal Government. BCAC obtained support from Arnotts last year to produce 750 copies as a first edition. Feedback received from patients and breast cancer nurses has been very positive and has contributed to improvements that will be made to the second edition. We have also revised the format to maximise cost-effectiveness. We aim to ensure that we can offer a copy to every woman diagnosed with breast cancer in New Zealand over the next 12 months.
We seek the Minister’s advice on whether funding for this resource could potentially be provided by the Ministry to ensure its ongoing viability.

The solution:

• Counselling and support services should be established within the public health system.
• Targeted government support should be provided for community-based initiatives aimed specifically at providing support and care for citizens affected by cancer.