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Breast cancer in asia the challenge and responseA report from The Economist Intelligence Unit


Breast cancer in Asia The challenge and response

Preface

Finola chatamra founder and director, Queen Sirikit Centre Foundation’s Breast Cancer Awareness Campaign Dr Polly cheung founder, Hong Kong Breast Cancer Foundation Dr shu-ti chiou director-general, Health Promotion Administration, Ministry of Health and Welfare, Taiwan sally crossing founder, Breast Cancer Action Group Australia Dr rebecca Dent senior consultant, Breast Team, National Cancer Centre Singapore Dr Zhaoqing Fan associate professor, Breast Centre, Peking University Cancer Hospital Dr Ophira Ginsburg medical officer for cancer control, World Health Organisation Dr sehwan Han chair, Korean Breast Cancer Society Dr chiun-sheng Huang professor, National Taiwan University College of Medicine Dr Weerawut imsamran director, National Cancer Institute, Thailand

Over the last few decades, breast cancer has grown into a major health issue across much of the Pacific-Region. The regional rise in age-standardised incidence has been running at four to eight times the global average since the 1990s. Meanwhile, the disease is no longer a concern large of developed countries but has become an increasingly important one in many emerging market states, where it is frequently now the most common form of cancer among females.

This report, Breast Cancer: The challenge and response, written by The Economist Intelligence Unit (EIU) and commissioned by Pfizer, examines the growing health burden of the disease in 10 major Asia-Pacific countries and territories, as well as how health systems are addressing the challenge.

The report draws on in-depth desk research and interviews with the following healthcare officials and experts:

Dr Ben anderson chair, Breast Health Global Initiative

Dr sanchia aranda president, Union for International Cancer Control Dr Kris chatamra founder and chairman, Queen Sirikit Centre for Breast Cancer Foundation



Dr saunthari somasundaram president, National Cancer Society Malaysia Dr ted trimble director, US National Cancer Institute Centre for Global Health Dr shoichiro tsugane director, Research Centre for Cancer Prevention and Screening, National Cancer Centre of Japan Dr cheng Har Yip professor, University Tunku Abdul Rahman Dr Helen Zorbas CEO, Cancer Australia

Dr Motoki iwasaki director, EpidemiologyDivision, Centre for Public Health Sciences, National Cancer Centre of Japan Dr sameer Kaul consultant in Surgical Oncology, Apollo Cancer Institute, New Delhi and president, Breast Cancer Patients Benefit Foundation Dr Wing-man Ko Secretary for Food and Health, Hong Kong Dr Dukhyoung Lee director, National Cancer Control Institute, National Cancer Centre, Korea Dr eun sook Lee director, Research Institute of the National Cancer Centre, Korea Dr Mohandas Mallath senior consultant, Tata Medical Centre, Kolkata Dr Malcolm Moore editor-in-chief, Asian Pacific

Journal of Cancer Prevention

Dr seigo nakamura president, Japanese Breast Cancer Society Dr Boyoung Park professor, Cancer Control Policy, Graduate School of Cancer Science and Policy, National Cancer Centre, Korea. noor Quek president, Breast Cancer Foundation of Singapore

Dr Hiroshi saito chief, National Cancer Centre Screening Assessment and Management Division



contents

executive summary 1

sectiOn i: tHe cHaLLenGe

chapter 1: a rising threat across asia 11

chapter 2: the drivers of change 15

chapter 3: common challenges 24

sectiOn ii: HOW WeLL are cOuntries DOinG?

chapter 1: the eiu breast cancer control scorecard 35

chapter 2: country reports australia 38china 43Hong Kong 48 india 53 Japan 57 Malaysia 63 singapore 67 south Korea 72 taiwan 77 thailand 81

chapter 3: Outlook 85

aPPenDix: scOrecarD MetHODOLOGY 89

1 © The Economist Intelligence Unit Limited 2016


executive summary

burden in some, through those seeing rapid change, to one — Australia — where the breast cancer situation is similar to that in much of the Western world (not developed world, as Japan has more in common with its Asian neighbours than its fellow high-income states in this regard). The goal is to take stock, but also to begin a discussion on how to do better against a fast-growing menace. To aid with the latter, the EIU has also created a detailed policy scorecard allowing comparison between each country’s current efforts across the broad continuum of breast cancer control.

The report begins with an overview of the breast cancer challenge in the region as a whole, and then — after introducing the scorecard — provides in-depth examinations for each country covered. Its key findings are:

Breast cancer incidence rates in asia look set to converge with the much higher ones in the West, as younger cohorts of asian women age. For many years, breast cancer in Asia and Western countries had distinct characteristics. Not only was incidence far lower in the former, but so was the median age of diagnosis, meaning the relative proportion of pre- and post-menopausal breast cancer also differed. As overall breast cancer rates have risen in Asia, the latter trend seemed to hold true. However, cohort analysis — examination of the incidence of breast cancer on women born

Once largely confined to Western countries and Australasia, breast cancer is now a major healthcare issue across Asia-Pacific. Where data are available, increases in incidence since the 1990s, as measured by age-standardised rates (ASRs)1, commonly run at four to eight times that for the world as a whole.2 As a result, the most affected states have seen a tripling or quadrupling in their ASRs since the 1980s.3 Magnifying this underlying trend has been widespread population ageing, meaning that the absolute number of women affected has risen even faster.

This need not be a healthcare disaster. If caught in its early stages, breast cancer can be treated very effectively, with extremely high survival rates. If caught late, though, it is often fatal. Accordingly, it is a disease that policymakers and health systems must address to prevent needless loss of life.

To examine how well governments are doing, and where further efforts would be useful, this Economist Intelligence Unit (EIU) study, sponsored by Pfizer, examines the state of breast cancer — and responses to it — in the Asia-Pacific region as a whole and in ten of its countries and territories: Australia, China, Hong Kong, India, Japan, Malaysia, Singapore, South Korea, Taiwan and Thailand. The specifics of the challenge in each differ widely, from a still small but growing

1 An age-standardised rate (ASR) calculates the rate in question — in this study incidence or mortality — as if the country in question had a population that matched the world’s standard age structure. This allows meaningful comparison between countries that have markedly different age distributions.

2 Michael Green and Vinod Raina, “Epidemiology, screening and diagnosis of breast cancer in the Asia—Pacific region: Current perspectives and important considerations”, Asia—Pacific Journal of Clinical Oncology, 2008; Danny R Youlden et al., “Incidence and mortality of female breast cancer in the Asia-Pacific region”, Cancer Biology & Medicine, 2014.

3 Unless otherwise indicated, data in the executive summary comes entirely from the contents of the main part of this report where appropriate references for the sources are provided where necessary.

2© The Economist Intelligence Unit Limited 2016


later age of giving birth to one’s first baby; and greatly reduced total time spent breastfeeding. All of these markedly increase breast cancer risk. These changes were extremely rapid and are consistent with the observed incidence rates in older and younger Asian women.

Breast cancer requires a multi-faceted, integrated response rather than a focus on one or a few specific interventions. Unlike some diseases, success against breast cancer requires health systems to engage in a wide range of activities simultaneously. These include data gathering; awareness-raising; establishing the facilities to encourage and engage in early diagnosis; providing multi-disciplinary treatment which provides a co-ordinated range of interventions depending on individual circumstances; ensuring long-term care and support for those who have been through primary treatment; and providing palliative care for women who are dying from the disease. To get a better view of how countries in the region are addressing this disease, The EIU has produced a detailed scorecard which considers policy around all these aspects of breast cancer control. Its main findings are as follows:

n Australia, with its strong reputation in cancer control, not surprisingly has the highest score. It is followed very closely by the other high-income countries in this study.

n Good policy, though, does not depend solely on national income. The next tier of finishers includes Malaysia and Thailand, which have similar scores even though the former has a markedly higher GDP per capita.

within several years of each other — has shown that the risk of developing the disease increases with age in Asia in a way very similar to the West. The recent rise in Asian breast cancer has seemed weighted toward the young only because they now have incidence rates similar to Western peers, while older generations still have a far lower propensity to develop the disease. As the current generation of younger Asian women age, international differences will disappear. The process is already beginning, with the median age of onset rising rapidly in several countries in this study.

rapid lifestyle changes — in particular fertility patterns — that carry higher associated breast cancer risks do much to explain the higher incidence of breast cancer in younger asian cohorts. Breast cancer is multi-factorial, with the full range of causes still not fully known. Several leading ones, though, are relevant in explaining the growth of the disease in Asia in recent decades. Lifestyle changes that occurred with economic development — often called “Westernisation” — are among the culprits most often cited. These have included greater calorie consumption, leading to higher levels of obesity, and increased drinking of alcohol. Such behaviour poses known breast cancer risks and has no doubt contributed to the more frequent appearance of the disease. However, in several of the countries in this study, they are at best only a partial explanation. In some, female obesity and overweight rates have not increased at all or only slightly; in most, a majority of women are still tee-total. More visible factors are inter-related ones concerning human reproduction: a rapid drop in fertility rates since the 1960s; a markedly



not surprising in lower income countries with less-developed educational systems. In these, misperceptions about the disease are often accompanied by fatalism and stigma. There is also a common willingness to rely exclusively on traditional medicine rather than allopathic health systems.

Awareness deficits do not fade quickly, however, or in some cases at all, with better general education or economic advancement. In countries such as Thailand and Malaysia, even the well off and well educated have many of the same concerns and beliefs about the disease as women of lower socio-economic status. In economically more advanced South Korea and Japan, stigma and an unwillingness to discuss breast cancer remain ongoing problems.

screening is a minefield. Screening is another potential down-staging tool, but it has become a highly contentious one. The only method of screening for which there is any evidence of improved outcomes is mammography, and then only for women aged 50 to 65. Even for women in this age band, however, there is heated debate between experts over the degree of benefit, with one recent literature review showing a decline of 17% in mortality arising from mammography, while other researchers argue that the real figure is close to 0%. Against any possible benefit have to be weighed the costs of screening. The obvious ones are financial: the necessary machines and training needed for population-wide screening are beyond the reach of low-resource countries. For wealthier states, however, other health costs — the impact of false positives and over-

n The weakest policy area in the region as a whole is survivor support, a problem discussed further below.

In putting in place integrated breast cancer control strategies, several issues are noteworthy for having an impact across most or all states in this study:

Prevention can have at most a limited effect. Healthy lifestyles and more extensive breast feeding would reduce breast cancer risks, besides bringing other health benefits. However, even if public health interventions could bring rapid behavioural change here, the likely reduction in incidence would represent just a minor part of the growing disease burden. Reversion to earlier reproductive patterns, on the other hand, would be impossible given the extent to which societies have changed. Nor, for other health reasons, would that even necessarily be desirable. Whatever might be done to moderate it, Asia’s sharp rise in breast cancer incidence will continue.

economic development and general education alone do not root out ignorance, fear and stigma. Given that more breast cancer is coming, and that those women diagnosed at an earlier stage have much better prognoses, ‘down-staging’ — ensuring cancer is detected in its earliest stages — is essential to keeping the impact of the disease in check. Improved health literacy, which will allow women to know when to seek medical advice for breast cancer symptoms, will therefore be key to better outcomes. This is easier said than done. Lack of awareness is



but the ASR, at 86.0 per 100,000 in 2012,4 is stable. Mortality, meanwhile, has been declining since 1993 and the five-year relative survival rate has risen to 89% — both signs of substantial progress against the disease. Breast cancer control in the country involves a wide range of government, health system, non-governmental organisation (NGO) and private actors. While their diversity can in some cases impede aspects of cancer control — such as interfering with registry data sharing and making integration of co-ordinated care provision more difficult — voluntary co-operation does much to harness the strengths of different actors around broadly agreed goals. Knowledge of the disease among the population is better than in many countries, making the biggest mystery around breast cancer care in Australia the relatively low proportion — by developed-world standards — of women who take advantage of free mammography screening (typically about 56% over the last two decades). The health system already provides high standards of primary breast cancer treatment, survivor care and palliative care, but is constantly seeking further improvement. For example, more survivor care is set to be transferred to general practitioners (GPs) in the hopes of providing greater treatment continuity.

chinaChina has a relatively light breast cancer burden by world standards, with 2012 ASRs for incidence and mortality at 22.1 and 5.4 per 100,000 respectively. Such low incidence looks unlikely to last. Although highly patchy data from before 2008 make historical trends difficult to ascertain exactly, such data as exist

diagnosis — come into play. The degree to which mammography creates these, however, is another debate as heated as that over its effect on outcomes. Deciding on a policy toward screening therefore requires a careful balancing of considerations around contested evidence, available resources and likely utility.

Long-term care for survivors requires attention. Primary treatment has been the main focus of medical care for those with breast cancer. Women who have successfully come through this process, however, will have ongoing physical and emotional needs arising from, among other things, the effects of the treatment itself and the stress of having a serious disease which can possibly recur. For many countries in this study, however, such care, where it exists at all, is characterised by substantial gaps. Even for the few who have managed to provide better care for long-term survivors, this area requires attention because it is a young field with much research needed to determine what care is optimal.

country summaries The different breast cancer burdens and cancer control efforts in each of the countries in this study all have distinct features. The findings from the national reports are summarised below.

australiaThe breast cancer picture in Australia is similar to that in much of the Western world. It has the highest incidence of any country in this study,

4 Unless otherwise noted, the 2012 ASR figures for incidence and mortality in these summaries of the country reports all refer to data from the IARC’s Globocan Cancer Atlas.



will soon be open in every part of the territory. Treatment is of high quality, and its provision is now better integrated with long-term survivor care and palliative care. Although weaknesses remain in the last two areas, both have also seen improvement. The central debate over breast cancer control is around population-based mammography. Breast cancer activists have been pushing for such a programme, especially in light of the economic class differences between those who already have access to screening and those who do not. The government has resisted, citing poor evidence for a reduction in mortality from such programmes elsewhere. Now, however, it is looking at ways to roll out mammography for women at moderate to high risk of the disease.

indiaIndia has a small breast cancer incidence by global standards: its 2012 ASR was 25.8 per 100,000. The extent of the disease, though, has been rising steadily and far more quickly than estimates made as late as 2009 had predicted it would. More alarmingly, the country is already struggling to cope with its current breast cancer load. Despite incidence being roughly 60% of the global average, mortality (an ASR of 12.7) is almost the same as the worldwide mean. This reflects substantial weaknesses across the entire field of breast cancer control. Awareness of the disease is poor and stigma widespread. As a result, over half of women are first diagnosed at Stage III or IV. Population-wide screening is beyond the resources of the health system, but even opportunistic screening of those at high risk is rare, and in general no strategy exists to

point to a growing, perhaps even accelerating, problem. There is also a strong apparent link between economic development and breast cancer within the country. Urban areas have a much higher incidence than rural ones. The age pattern of those affected in the former also suggests the beginning of the same trend toward higher incidence and later median age occurring in much of Asia. China, however, remains ill-equipped to deal with any substantial rise in breast cancer. Popular understanding of the condition is low. Population-wide screening programmes exist in some rural areas, but have been very slow to expand, and although treatment at the small number of available cancer centres can be of good quality, these are entirely insufficient. Current funding arrangements still result in out-of-pocket costs for cancer care that are frequently catastrophic for patients and their families. Finally, long-term survivor and palliative care are largely lacking.

Hong KongWhile not growing as quickly as in some emerging Asian economies, breast cancer incidence in the territory has increased steadily in recent decades, and in 2012 the ASR stood at 61.2 per 100,000. The age profile of the newly diagnosed has also become increasingly like that in Western countries, and academic trend analysis indicates incidence will rise further. Mortality, in contrast, has remained stable since the mid-1980s, with the ASR in 2012 at 9.5 per 100,000. The question is how to start lowering that figure. Over the past decade and a half the government has greatly improved integration of previously fragmented cancer care. Comprehensive cancer centres



is over. The government, in its Basic Plans for Cancer Control Promotion of 2007 and 2012, has recognised these issues and is working to address them. Palliative care, in particular, has improved markedly.

MalaysiaCancer data from Malaysia are poor, so most analyses rely on Globocan estimates. These put ASR incidence at 38.7, which is below the global mean, but mortality at 18.9, 47% higher than the world figure. The reliable historical information that does exist also indicates that incidence is increasing; with a five-year survival rate of only 49%, so will mortality. The two problems that impede efforts to address this disease are poor popular understanding of the disease as well as generally weak access to timely, adequate treatment. These create a vicious circle where poor medical outcomes re-enforce cancer fatalism, leading to late disease presentation, leading to further poor outcomes. Accordingly, numerous efforts at awareness-raising have had little impact, and even free screening programmes have had little uptake. Although Malaysia has universal healthcare, a lack of facilities and oncologists in practice makes access difficult. Similarly, survivor support is largely the province of NGOs. One of Malaysia’s strengths is palliative care, with the country often used as an international case study in this field. The barriers to better breast cancer control are such that, rather than individual interventions to correct specific issues, Malaysia needs a comprehensive strategy. The lack of a public National Cancer Control Plan, however, makes that more difficult.

increase down-staging. Apart from a few islands of excellence, access and treatment quality are poor, with major cancer centres frequently needing to fix mistakes in diagnosis or treatment made by other clinicians. Cost, meanwhile, even in public hospitals, is high and a common reason for abandoning treatment. Long-term survivor and palliative care are also, with a few exceptions, difficult to find.

JapanAccording to Globocan figures, Japan had a markedly lower ASR for breast cancer in 2012 (51.5 per 100,000) than the other high-income Asian states in this study. Data from the national cancer registry — much improved in recent years due to legislative action — instead indicates the best estimate is closer to 63.6. The rate also appears to have been rising steadily. Mortality, on the other hand, has been largely stable since 2006: 9.8 per 100,000. This reflects a generally effective breast cancer control system, which achieves a very good five-year survival rate of 89%. One reason for this success is that surprisingly low levels of breast awareness, along with ongoing stigma toward the disease, do not appear to have a negative effect on when women present with the disease. High-quality surgery is one of Japan’s great strengths; but at the same time, there is too much emphasis on the role of the surgeon. The results are low numbers of non-surgical oncologists, making it hard to run truly multi-disciplinary teams, and paternalistic attitudes toward patients, making it difficult for them to be partners in care. There are also ongoing weaknesses in the provision of survivor or palliative care once primary treatment



the upward trend shows no sign of abating. This makes the very slow growth in mortality figures all the more impressive: Globocan puts this ASR at 6.1 per 100,000 (although other sources give a slightly higher figure). Moreover, South Korea has a five-year relative survival rate for breast cancer of 91.5%, the best in this study. This success comes from efforts embedded in a long-term, co-ordinated general anti-cancer policy introduced over a decade ago. This includes extensive awareness-raising activity; the most widespread mammography screening of any country in this study; and extremely high-quality, multi-disciplinary treatment that is largely affordable. Some weaknesses persist: stigma remains an issue; although the screening rate is between 60% and 70% of the target population, participation has shown no sign of increasing lately; and the country’s National Health Insurance system has been particularly slow in agreeing to pay for new, innovative therapies. The more notable issues with breast cancer control in South Korea, though, are after primary treatment. The facilities for care of long-term survivors tend to be insufficient, as do those for palliative care. Officials expect the first of these, at least, to be made a priority in the next National Cancer Control Plan.

taiwanAge-standardised incidence of breast cancer in Taiwan has almost quadrupled since the late 1980s and in 2012 sat at 65.9 per 100,000, the third highest in this study. The mortality ASR, on the other hand, has been much more stable, varying between 10 and 12 per 100,000 since 1996. Five-year relative survival has also risen

singaporeSingapore’s breast cancer situation has become in many ways similar to those in Western countries. Its incidence ASR — 65.7 per 100,000 in 2012 — is the second highest in this study. It is continuing to rise but the health system appears to be holding its own: mortality, with an ASR of 15.5, has stayed largely flat since the 1990s. Five-year relative survival, though, is behind that of other developed states, reaching only 79.5%. Any deficiencies in outcomes do not come from a lack of effort. The country has: extensive awareness-raising activities; population-wide mammography; excellent, multi-disciplinary primary treatment and long-term survivor care; and improving palliative care. Indeed, the difference between Singapore’s five-year survival and that of the US comes down to later average presentation in the former. Its stage-specific survival figures are actually comparable. Two factors appear to be holding back the country: unclear knowledge among the population about important aspects of the disease — such as symptoms, treatment and the potential of mammography — and the unintended effects of the country’s Medisave funding system on some breast cancer care choices. In particular, it is presumed that the cost of screening and follow-up biopsies account for the low take-up of these detection services and hence contribute to the later average presentation.

south KoreaSouth Korea has seen one of the world’s fastest increases in breast cancer incidence, with the ASR roughly tripling over the last two decades. By 2012 this figure was 52.1 per 100,000, and



needs one to help overcome a number of ongoing challenges in dealing with breast cancer. Fear of the disease, misperceptions and stigma remain common, leading to frequent late diagnosis. To help address the last of these, under the latest National Cancer Control Plan (NCCP) health authorities have been rolling out a nationwide clinical breast examination (CBE) programme. (Mammography is beyond its means.) The treatment picture is mixed. In and around Bangkok, good care is available in some, mostly private, hospitals, but it is rare outside cities. As a result, a prominent local breast cancer group estimates that over half of those with the disease receive inadequate care. Again, the NCCP calls for opening a breast cancer clinic in all provincial hospitals. Post-treatment, survivor care and palliative care are also weak, although the NCCP does have specific goals for the improvement of the latter. n

quickly and is now 87% — similar to that in other developed states. Taiwan has achieved these results with a comprehensive, evidence-based approach to breast cancer control. The big difficulty, however, has been that popular perceptions have been much slower to adapt to the challenge of breast cancer than has the health system. This is clearest in the results of Taiwan’s breast cancer screening programme, where low participation rates — under 40% of the target population — reflect a lack of urgency in the population regarding the disease. Once diagnosed, Taiwan’s universal healthcare system provides treatment of a very high standard, and the country’s benchmarking and quality standards system for cancer care has driven consistent improvement. The only issue with treatment seems to be slow adoption of newly released drugs for full reimbursement by the country’s health insurance scheme. Long-term survivor care is widespread, although not yet subject to measurement for quality — a deficiency the government plans to address in the near future. Finally, palliative care is also very good in Taiwan, despite some difficulties with access.

thailandBreast cancer incidence remains low by global standards in Thailand, at 29.3 per 100,000 in 2012, but has more than doubled since 1990 and appears to be headed higher. Similarly, mortality, with an ASR of 11 per 100,000 in 2012, has grown at an average of 9% annually since 1985, albeit from a very low base. For a country of its resources, Thailand has an effective, comprehensive, evidence-based cancer control programme with reasonable registry data. It



a checklist for policymakers A common list of specific recommendations would be impossible for ten countries as diverse as those in this study. Instead, the following are key points arising from this research for policymakers to consider when assessing the current state of breast cancer control and how it might be improved:

n The need for a comprehensive plan: Weakness in one part of breast cancer control can undermine efforts elsewhere. This disease, like cancer as a whole, requires a coherent continuum of interventions. A realistic, well-thought out National Cancer Control Plan is an essential beginning.

n Data: Evidence-based public health requires evidence. Some countries with the resources to do better simply have poor collection of basic incidence or mortality data. Even among high-resource states, surprising gaps or lack of co-ordination at the national level can exist. Looking ahead, efforts to shape more effective public policy against breast cancer would benefit from collecting a wider array of data related to treatment of breast cancer and the socio-economic status of those affected.

n Awareness: Knowledge among the general public has not risen as fast as incidence in the region, with stigma and misperceptions still in evidence even in some wealthy

countries. Such views do not simply disappear, but awareness-raising needs to be culturally appropriate. It will not do much good if women with improved awareness are unable to access health systems: knowing a lump is a dangerous symptom is of little use where getting a diagnosis, let alone treatment, is a struggle.

n Prevention: Prevention measures alone will not eliminate more than a small amount of breast cancer, but the benefits in terms of reducing breast cancer risk should be added to the reasons given to the public for pursuing a healthy lifestyle. If nothing else, it may improve awareness.

n Screening: There is no single, right answer to what sort of population screening for breast cancer, if any, a country should have. Policymakers should consider the World Health Organization (WHO) recommendations, which are calibrated to the level of economic development and health-system capacity of a country. For those with the resources to offer mammography-based screening on a large scale, most have yet to find the way to achieve high participation rates. As South Korea shows, in addition to removing barriers to participation, incentives for providers are worth considering.



n Treatment: Multi-disciplinary care is the ideal, but the transition to it is not complete. In lower resource countries, lack of money makes creativity essential in finding ways to provide more integrated care. Meanwhile, higher resource states need to work out any organisational or cultural issues that impede co-ordination.

n Access: Universal access systems are often better suited to providing care for acute episodes than for long-term, high-cost conditions such as cancer. Finding funding methods for basic treatment and adjuvant therapies that allow optimal care choices based on individual needs rather than the ability to pay remains an issue in many Asia-Pacific countries.

n Survivor care: Women are not “cured” after successful primary treatment, even with full remission. Ongoing physical and psychological needs remain. As a relatively new field in breast cancer, long-term survivor care tends to be weaker than primary treatment in higher resource countries and can be missing entirely in low resource ones. Given the need for ongoing provision, in leading countries this type of care is being shifted to trained general practitioners supported by oncologists rather than by the latter alone.

n Palliative care: This has too often been an after-thought of cancer care. Things are improving but experts in every country acknowledge that more work should be done here.

n Most important, work with patients at all levels: Breast cancer survivor groups are common throughout the region and frequently active in awareness-raising and survivor psychological support. Engaging with them across the entire field of breast cancer control can bring coherence and progress not possible in any other way. Without activist engagement, for example, stigma is likely to remain, and it will be difficult for health systems to understand fully the deficiencies in care.



which the International Agency for Research on Cancer (IARC) provides comparative estimates. This represented 18% of all cancer incidence among women in the region that year.6 For nine of the 10 Asia-Pacific jurisdictions covered in this study, breast cancer is also the most common form of the disease for females.7 The only exception is South Korea, where it trails behind thyroid cancer. Over-diagnosis of the latter, though, is a notorious problem in South Korea,8 so breast cancer is likely the most common neoplasm in that country as well.

Ko Wing-man, the Secretary for Food and Health in the government of the Hong Kong Special Administrative Region, is in no doubt: “Breast cancer must be a top priority for the government and it should not be shy about taking a lead.” The data indicate that his words could apply equally to many Asia-Pacific countries.

Breast cancer is already the leading form of the disease among women5 in the region. Just over 400,000 cases were diagnosed there, out of a total of 1.7m globally, in 2012 — the last year for

sectiOn i - cHaPter 1: a rising threat across asia

section i: the challenge

5 Although male breast cancer does occur, its incidence is so rare — approximately 8,000 new cases worldwide per year — that this study deals exclusively with female breast cancer.6 Danny Youlden et al., “Incidence and mortality of female breast cancer in the Asia-Pacific region”, Cancer Biology & Medicine, 2014.7 Country figures in: J Ferlay et al., Globocan 2012 v1.0: Cancer Incidence and Mortality Worldwide, 2013 < http://globocan.iarc.fr>.8 Hyeong Sik Ahn “Korea’s Thyroid-Cancer “Epidemic” — Screening and Overdiagnosis,” NEJM, 2014.

incidence Mortality Mortality-to-incidence ratio (Mr:ir)

Australia 86.0 14.0 0.16China 22.1 5.4 0.24Hong Kong 61.2 9.5 0.16India 25.8 12.7 0.49Japan 51.5 9.8 0.19Malaysia 38.7 18.9 0.49Singapore 65.7 15.5 0.24South Korea 52.1 6.1 0.12Taiwan 65.9 11.6 0.18Thailand 29.3 11.0 0.38World 43.3 12.9 0.30

age-standardised breast cancer incidence, mortality per 100,000 in 2012

Source: Ferlay et al. Globocan, 2013, Taiwanese Health Promotion Administration, Annual Report 2014, Annual Report 2015, EIU calculations



figures make them inappropriate for comparison between years.

A more robust indication of the level of change comes from a look at the data from specific registries of sufficient quality to be included in the IARC’s regular Cancer in Five Continents publications. In these, the upward trend is visible. In the decade from 1998 to 2007 in particular, as the chart shows, the most affected country in this study, Australia, appears to see incidence levelling off. Those with lower figures, though, are experiencing a marked increase — more than 70% in South Korea and between 20% and 30% in the other countries. Even the apparent pause in Singapore’s growth is temporary according to later, national data. Although time-series data for Taiwan are not available, it fits the Asian pattern, with ASR incidence going from 33.3 around 1997 to 44.5 just six years later and to 64.3 in 2011. Similarly, at Malaysia’s Penang registry, this statistic rose

The regional figures mask substantial variation between countries. The age-standardised rate (ASR) of incidence for breast cancer in China, for example, is about one-quarter that in Australia. Based on the recent past, however, the burden of breast cancer looks set to grow and incidence figures to converge around those in the most affected countries.

Although historically the Asian breast cancer incidence rate has been lower than those in Europe and North America, for several decades Asian ones have been catching up. These countries have seen the biggest increases in incidence globally; in some this has been six to eight times the worldwide average rise.9 The exact extent of this increase is difficult to quantify. Although the IARC publishes periodic estimates of national ASR incidence and mortality from different types of cancer, the organisation warns that ongoing changes in how it derives these

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1998 1999 2000 2001 2002 2003 2004 2005 2006 2007

Singapore Japan (3 registries) India (3 registries)Hong Kong China ThailandAustralia (6 registries) South Korea

9 Stanley Leong et al., “Is Breast Cancer the Same Disease in Asian and Western Countries?” World Journal of Surgery, 2010; Youlden et al., 2014.

Breast cancer incidence as tracked by registries 1997-2007



of mortality from breast cancer over the last two decades. In Hong Kong and Singapore, meanwhile, this figure has remained largely static between 1980 and 2011, even as incidence roughly doubled over the same period.11

The other countries in this study, though, have seen increasing mortality rates. The biggest rises have been in the less developed countries, China, Malaysia and Thailand — the latter saw ASR mortality from breast cancer rise by 6.8% per year in the first half of last decade. Wealthier states, such as Taiwan and South Korea, have seen higher ASRs, although growth has diminished over time. The most recent figures are around 1% to 2% per annum, and in recent years rates in both appear to have largely plateaued.12 In other words, despite the ability of healthcare systems to address breast cancer, even in some well-off Asian countries more people than ever are dying from it. Understanding what is behind this rise in breast cancer cases, whether it is likely to continue and the options for a response are therefore essential to save lives. n

from an average of 43.9 between 1998 and 2002 to 49.8 between 2004 and 2007.10

Even a steady ASR incidence, however, does not mean an unchanging number of new cases. As Helen Zorbas, CEO of Cancer Australia, notes of her country, “Breast cancer incidence is high and rising. The age-standardised rate has stabilised, but the number of women diagnosed will continue to increase” primarily due to population ageing — a phenomenon affecting every country in this study to some degree.

Although undoubtedly a challenge, climbing breast cancer incidence need not be a public health disaster. The disease is, especially if caught early, largely treatable. In well-off countries — including, as discussed in the country reports below for Australia, Singapore, South Korea, Taiwan and Hong Kong — the five-year survival rate is typically between around 80% and 92% and has been rising steadily. For those whose cancer is caught at Stage I — when still small and localised to the breast — five-year survival in a number of developed countries is very close to 100%.

Unfortunately, notes Dr Ophira Ginsburg, a Medical Officer for Cancer Control at the World Health Organization (WHO) with particular responsibility for breast cancer, “Even in some higher resource countries, many health systems are not prepared for the rising burden.” Long-term mortality data from the region and the 10 countries in question certainly indicate that progress against the disease is highly uneven. Australia has seen a steady decline in the ASR

10 Chart Data from CI5Plus: Cancer Incidence in Five Continents Time Trends database http://ci5.iarc.fr/CI5plus/Pages/online.aspx; Korean figures from Kyu-Won Jung et al., “Cancer Statistics in Korea: Incidence, Mortality, Survival, and Prevalence in 2012”, Cancer Research and Treatment, 2015; Taiwanese figures from Chun-Ju Chiang et al., “Cancer Trends in Taiwan”, Japan Journal of Clinical Oncology, 2010. Malaysia information

11 Mortality figures from Youlden et al., 2014; Hai-Rim Shin et al., “Secular trends in breast cancer mortality in five East Asian populations: Hong Kong, Japan, Korea, Singapore and Taiwan”, Cancer Science, 2010.

12 Figures from Youlden et al., 2014.



The picture this study sketches of rising breast cancer incidence and mortality across much of the Asia-Pacific region is accurate in its broad brush strokes. It does, however, require an important caveat: the data on which it is based is problematic in various ways.

As already noted, internationally comparable, country-wide time-series data for breast cancer incidence and mortality simply do not exist. Moreover, reliable information derived from sources within countries, such as registries, tends to be dated. The latest Cancer in Five Continents results – the gold standard for registries – extends only to 2007. Similarly, a detailed 2014 study of breast cancer incidence – which looked at national and regional registries in eight of the countries in this study – found no data more recent than 2009 anywhere except Hong Kong. Mortality figures present a similar, if less pronounced, problem. The same study, for example, found them available up to 2011 in most countries, but for Malaysia only up to 2008 and China just to 2000.13 As the country sections in this study show, slightly later figures are now available, but almost invariably they are at least a few years old.

In developing countries especially, where data notionally do exist, quality issues can undermine their utility. Malaysia actually cut funding from its national cancer registry after 2007, replacing it with less reliable state-based ones. India lacks a national cancer registry and, although its roughly one-dozen regional population-based registries conduct work of good quality, only two cover rural areas. “But,” says Dr Mohandas Mallath, senior consultant at the Tata Medical Centre in Kolkata, “70% of India is rural. You need to keep that limitation in mind.”

Mortality data weaknesses can also beset those with reasonable incidence figures. Although Thailand has

developed a very good registry system for its economic status and China has been investing substantially in this area, both are judged by the IARC to have low-quality death records. Among the countries in this study, however, India has the worst information on deaths, with the IARC’s figures having to rely on sources other than vital statistics registries. The net result is a wide variation in estimates even among experts: the IARC put India’s breast cancer ASR of mortality per hundred thousand at 12.7 in 2012, but the Global Burden of Disease best estimate for 2013 was 10.6.14 Both efforts are associated with the WHO. They may not even disagree despite the roughly 20% difference: the IARC figure falls well within the Global Burden of Disease’s uncertainty range, which is about half the size of its overall estimate. With such information, all but the most extreme trends are likely to remain opaque.

Although they have much more robust basic data on the extent of the problem, wealthier countries still often lack certain information which could lead to greater success against breast cancer. Dr Sanchia Aranda, president of the Union for International Cancer Control, notes of Australia, for example, that “Only the New South Wales registry collects stage data at the moment, but without knowing the clinical stage you can’t understand the value of efforts to increase early diagnosis. We also need to have better systems that capture treatment and access, without which you can’t begin to explain differences in outcomes” based on variations in care.

A lack of basic data on the extent of any problem undermines effective strategy in response. So too does poor information on what works and what does not. If national efforts against breast cancer are to be as successful as possible, improved data collection will need to be an integral part.

the data deficit

13 Youlden et al., 2014.14Ferlay et al. Globocan, 2013; Institute for Health Metrics and Evaluation. GBD Compare, 2015. http://vizhub.healthdata.org/gbd-compare



problematic mutations make them less effective, are associated with breast cancer. Depending on the mutation, a majority of women so affected are likely to develop the disease at some point during their lives. Cancers associated with these genes are also more likely to affect younger women, be more aggressive and be more difficult to treat because they are less responsive to interventions that target hormones or proteins.BRCA1 and BRCA2 mutations are the most common genetic causes of breast cancer but they are far from alone, accounting for only a minority of hereditary-related instances of the disease. A recent Nature Genetics article noted that, while 27 locations in the human genome were already known to be associated with higher levels of breast cancer, it had found 41 more and analysis of its data indicated that the total of locations which might have an impact on the disease exceeded 1,000.15 Understanding hereditary breast cancer is an ongoing task.

Moreover, the common estimate is that genetic inheritance accounts for just 5% to 10% of all breast cancers. Instead, environmental and lifestyle factors appear to play a dominant role in inducing the disease.

The best established — and the strongest — factors revolve around lifetime exposure to estrogen, an important hormone in regulating the menstrual

Understanding the reasons for the rapid growth of breast cancer incidence in the Asia-Pacific region outside of Australia requires consideration of two questions: What are the causes of breast cancer? And why are those factors affecting women in Asia now more than earlier? For both of these issues, substantial knowledge exists but, often, so do some frustrating uncertainties.

causes of breast cancer As Dr Saunthari Somasundaram, president of Malaysia’s National Cancer Society, notes, although certain things are very clear, “There is still a lot we don’t know in terms of causes of breast cancer.” Indeed, rather than a detailed understanding of causation, current knowledge is largely at the level of having identified important risks. As breast cancer is increasingly understood to be more than a single condition (see box), it is not surprising that a variety of factors are implicated. The following discussion, though by no means exhaustive, touches on the main ones — especially those likely to be relevant to developments in Asia-Pacific.

Heredity is one factor. Two of the world’s best known genes are BRCA1 and BRCA2, discovered in the mid-1990s. Both produce proteins which suppress tumour development and, where

sectiOn i - cHaPter 2: the drivers of change

15 Kyriaki Michailidou et al., “Large-scale genotyping identifies 41 new loci associated with breast cancer risk”, Nature Genetics, 2013.



relationship between body fat and the disease.

n Breast density — the ratio of connective and glandular tissue to fat — is linked to higher rates of breast cancer but no increase in mortality. Although genetics play a large role in density, it seems counterintuitive that certain generally protective activities — such as breastfeeding — increase density, while being overweight decreases it as does ageing. The link may have something to do with density impeding the effectiveness of mammograms to find cancer. A 2015 study found that density on its own was not enough to justify further screening of individuals.17

n Other links are better established — such as height correlating with increased risk of breast cancer among post-menopausal women — but simply defy causal explanation.

As noted earlier, this discussion is far from exhaustive; such a list of breast carcinogens would be well beyond the scope of this study. Moreover, it would likely soon be dated. New suspects continue to appear. Recently, for example, some studies have indicated a possible link between light pollution and breast cancer.18 Nevertheless, the above do much to explain what is happening in the Asia-Pacific region.

cycle and reproduction. Put simply, the higher this exposure, the greater an individual’s chance of breast cancer. Thus, anything which increases the number of menstrual cycles, during which the body produces estrogen, raises the risks. Accordingly, the chances of developing breast cancer correlate strongly with age itself, as do reaching puberty early and experiencing menopause late. On the other hand, the number of pregnancies a woman has and total time spent breastfeeding — both of which interrupt normal menstruation — reduce the risk, as does lower age of first birth — that event causes key cells in the breast to reach full maturity, after which they are less responsive to estrogen.

Certain lifestyle choices have also been strongly linked with breast cancer risk. Various studies have shown that lifetime alcohol consumption, even at moderate levels, raises risk, although binge drinking increases it further.16 Estrogen again seems involved, as those who consume alcohol seem to have higher levels in the blood than teetotallers. Similarly, lack of regular exercise correlates with increased risk, and those who do exercise regularly also appear to metabolise estrogen differently.

Other factors are implicated as well, but even where the correlation is clear-cut they can be difficult to assess or fully understand:

n Being overweight definitely correlates with higher levels of breast cancer in post-menopausal women but seems to have a protective effect against pre-menopausal breast cancer, suggesting a complex

16 For a huge study on the link, see Wendy Chen et al., “Moderate Alcohol Consumption During Adult Life, Drinking Patterns, and Breast Cancer Risk”, Journal of the American Medical Association.17 Karla Kerlikowske et al., Identifying Women With Dense Breasts at High Risk for Interval Cancer: A Cohort Study”, Annals of Internal Medicine, 2015.18 YJ Kim et al., “High prevalence of breast cancer in light polluted areas in urban and rural regions of South Korea: An ecologic study on the treatment prevalence of female cancers based on National Health Insurance data”,

Chronobiology International, 2015.



relevance to the asia-Pacific region

For many years, two key differences have existed between breast cancer incidence in Asian countries and that in Western countries, including Australia: the number who develop the disease in Asia has been markedly lower and, on average, it is diagnosed at a significantly younger age. This remains the case today: the median age of diagnosis in most Asian countries is the 40s or low 50s while it is 61 in Australia and the US. Moreover, even in many well-off Asian jurisdictions, the age-specific incidence rate tends to flatten out, or even decline, much earlier than in Western countries.20

One posited reason is potentially lower susceptibility to breast cancer among those with Asian genotypes. Genetic differences certainly can affect incidence patterns: Ashkenazi Jews, for example, have a higher rate of deleterious mutations of BRCA1 and BRCA2 genes than do most population groups.21 As a general explanation of divergent patterns of breast cancer in Asia and the West, though, Ben Anderson, chair of the Breast Health Global Initiative, suggests that factors other than genetic diversity contribute to different breast cancer patterns around the globe. He points out that “the disease has similar age distribution and clinical presentation in low income countries around the world regardless of genetic background. For example, breast cancer commonly presents as more aggressive cancer occurring in younger women in sub-Saharan

a heterogeneous disease Breast cancer is not a single disease but a group of conditions that all manifest themselves with tumours in the same organ. Some — labelled ductal carcinoma in situ — are simply abnormal cells in the milk ducts which may not even spread any further, although they hold the potential to become cancerous over time. Most, however, are invasive, although these can exhibit any number of different characteristics in terms of hardness and shape which can give some indication of their likely progression. At the genetic level, differences also abound. A landmark 2012 study compared the genetic makeup of tumour samples with their other characteristics for nearly 2,000 women. It identified at least 10 distinct sub-types of breast cancer, each with its own unique characteristics, including potential weak spots.19

Although this study has the potential to advance greatly how breast cancer is diagnosed, classified and treated, in practice certain characteristics of these tumours are already tested for in order to decide on optimal treatment, most notably cellular receptors for estrogen, progesterone and human epidermal growth factor. Their presence or absence normally indicates the potential utility of additional medication to accompany the normal treatment of some type of surgery to excise cancerous materials, along with radiotherapy and chemotherapy.

19 Christina Curtis, et al., “The genomic and transcriptomic architecture of 2,000 breast20 Stanley Leong et al., “Is Breast Cancer the Same Disease in Asian and Western Countries?” World Journal of Surgery, 2010; Michael Green and Vinod Raina, “Epidemiology, screening and

diagnosis of breast cancer in the Asia—Pacific region: Current perspectives and important considerations,” Asia—Pacific Journal of Clinical Oncology, 2008; Youlden et al., 2014, data from country sections of this report.

21 “More Ashkenazi Jews Have Gene Defect that Raises Inherited Breast Cancer Risk,” The Oncologist, 1996.



As these new cohorts age, population statistics are likely to converge on those found in higher incidence countries. The ongoing rise in ASR incidence in Asia is one sign. Another is the rising median age at diagnosis: in South Korea, it went from 47 in 2004 to 51 in 2012; in Hong Kong from 52 to 54 between 2007 and 2011; and in Taiwan from 45 to 52 between 2005 and 2010.25 Professor Chiun-Sheng Huang of the National Taiwan University College of Medicine explains that “We are getting to see more breast cancer in women of older age; the peak is shifting [away from younger women].”

The other implication is that as older, less affected cohorts die and newer ones age, total and ASR incidence will continue to rise rapidly. The most obvious explanation for differences in incidence between younger and older women is the rapid lifestyle shifts in the region brought on by economic development. As Rebecca Dent, senior consultant on the Breast Team at the National Cancer Centre Singapore, notes of that country, its higher incidence rate is a symptom of economic success. “Rapid economic transformation has been accompanied by similarly fast drops in the incidence of cancers common in poorer countries and increases in those more frequently found in the West. The change has been quite dramatic.” Even within countries, economics drive growth: in both Australia and Thailand, for example, wealthier parts of the country have higher breast cancer incidence than those that are less well off. As Dr Helen Zorbas, CEO of Cancer Australia, puts it, on breast cancer “we know that affluence is a factor.”

Africa, Central America, and India, even though people from these different world regions are genetically quite different.”

The great weight of recent research supports this view. Over two decades ago, American studies began to show that breast cancer rates among Asian immigrants moved away from those in their home communities toward those of US-born whites. Moreover, first-generation Asian-Americans had rates very similar to their white countrywomen.22 More recently, on the purely genetic side, the proportion of women with negative BRCA1 and BRCA2 mutations has been found to be roughly the same among women of different Asian ethnic groups and those of ethnicities from other parts of the world.23

A more fruitful explanation for the differences in incidence between Asian and Western populations has come from cohort analysis. The lifetime age distribution of breast cancer incidence for groups of women born within a few years of each other shows very similar patterns for populations in Asia and the West. In fact, if anything, age of onset seems to be later among Asians, not earlier as the median figures cited above would indicate. What seems to be skewing age observations in Asia is that younger cohorts have a much higher incidence than their older peers — similar to or even greater than those in North America, Europe and Australia.24 As Dr Aranda puts it, although detailed epidemiological data are sometimes lacking, “We obviously have an issue with younger cohorts.”

22 RG Ziegler et al., “Migration patterns and breast cancer risk in Asian-American women,” Jounral of the National Cancer Institute, 1993.23 Haeyoung Kim and Doo Ho Choi, “Distribution of BRCA1 and BRCA2 Mutations in Asian Patients with Breast Cancer”, Journal of Breast Cancer, 2013.24 Hyuna Sung et al., “Female Breast Cancer Incidence Among Asian and Western Populations: More Similar Than Expected”, Journal of the National Cancer Institute, 2015; Seyed Houssein Mousavi-Jarrrahi et al., “Addressing the Younger

Age at Onset in Breast Cancer Patients in Asia: An Age-Period-Cohort Analysis of Fifty Years of Quality Data from the International Agency for Research on Cancer”, ISRN Oncology, 2013.25 Korean Breast Cancer Society, “Nationwide Korean Breast Cancer Data of 2004 Using Breast Cancer Registration Program,” Journal of Breast Cancer, 2006; Zisun Kim et al., “The Basic Facts of Korean Breast Cancer in 2012: Results from a

Nationwide Survey and Breast Cancer Registry Database,” Journal of Breast Cancer, 2015; Hong Kong Cancer Registry, Female Breast Cancer in 2012, 2014; Hong Kong Cancer Registry, Hong Kong Cancer Stat 2007, 2009; Stanley Leong et al., “Is Breast Cancer the Same Disease in Asian and Western Countries?” World Journal of Surgery, 2010; Yong Wang et al. “Health Services Utilisation in Breast Cancer Survivors in Taiwan,” Nature Scientific Reports, 2014.



part of which is the result of population ageing.27 Dietary and exercise level change may also be contributing to a decline in the age of puberty in Asian countries. Lower levels of exercise, higher body weight and more consumption of animal proteins — often through cow milk consumption, which has risen rapidly in China — all are associated with earlier menarche.28

Alcohol consumption is also problematic as an explanation for rising breast cancer rates across Asia, instead being relevant only in specific countries. In this study, in all but Australia, Japan and Taiwan, two-thirds of women are abstainers and the remaining third are largely moderate consumers.29

Along with different consumption choices, economic development is also associated with changes to reproductive choices, which are highly relevant to breast cancer. In particular, women in Asia are having far fewer babies (see

For certain diseases that rise in incidence with economic development, causation is clear. The adoption of Westernised diets and lower levels of physical activity, for example, are obvious drivers of increased heart disease in many major emerging markets.26 For breast cancer, some of the same factors are at play: Dr Zorbas explains that “Physical inactivity, alcohol consumption and obesity are all associated with breast cancer risk and are increasing.” The same is true of the other countries in this study.

Changes to diet and physical activity are certainly having an effect in the Asia-Pacific region, but the impact is not universal. As the chart indicates, for most countries the proportion of women who are overweight or obese has risen steadily, and roughly doubled in Thailand and China. South Korea and Japan, however, have seen nearly no change among women — despite big rises among men — while Singapore and Taiwan have experienced moderate increases,

0

10

20

30

40

50

60

1980 1990 2000 2013

Australia China Taiwan Japan Singapore

South Korea India Thailand Malaysia

26 EIU, The heart of the matter: Rethinking prevention of cardiovascular disease, 2013.27 Data from Marie Ng et al., “Global, regional, and national prevalence of overweight and obesity in children and adults during 1980—2013: a systematic analysis for the Global Burden of

Disease Study 2013”, The Lancet, 2014.28 Anna Yermachenko and Volodymyr Dvornyk, “Nongenetic Determinants of Age at Menarche: A Systematic Review”, BioMed Research International, 2014. Among the countries in this

study, trend data are available only for Japan, South Korea and China, but all show a decline.29 World Health Organization, Global status report on alcohol and health 2014, 2014; Department of Health, “Action Plan to Reduce Alcohol-related Harm in Hong Kong”, 2011; HM Tsai,

“Health Issues in Taiwanese Women”, Austin Journal of Women’s Health, 2015.

Proportion of women overweight or obese

Source: World Bank



and three years over the period 1995 to 2010. Australia is also in this group. Again, it is not quite correct to call this Westernisation. All five now have among the 11 highest average ages of first birth in the world.31

These changes in fertility patterns are far from completely negative. Dr Ginsburg notes that in developing countries in particular “Girls staying in school longer, fewer childhood marriages and first births at a later age: this is fantastic news in all respects — except,” she adds, “for increased breast cancer risk.”

Inevitably, the decline in the number of babies will also mean less total time spent breastfeeding. Trends in breast feeding per individual child may further exacerbate the resultant cancer risk. Here patterns vary widely. The WHO’s Western Pacific region, which includes seven of the countries in this study, has the second lowest breastfeeding rate of any region

chart). Although a marked decline in fertility between 1960 and the early 1980s took place in all of the countries in this study, it was particularly rapid in those seeing substantial economic development, notably Taiwan, Hong Kong, South Korea, Singapore and even Thailand. It is inaccurate to label this “Westernisation”, as the decline has gone beyond that seen in much of the West. Since 1990, the average number of births per woman in each of these countries has been below that of the US, and for the last 15 years below that of the European Union. Similarly, Australia, while experiencing a drop of its own, went from the second lowest fertility rate in the countries in this study in the early 1970s to the third highest today.30

Women are also having their first babies later — another breast cancer risk — especially in current low-fertility countries. In Singapore, Hong Kong, Japan and South Korea, for example, the mean year of first birth increased by between one

Australia China Hong Kong SAR, China India Japan

Korea, Rep. Malaysia Singapore Thailand

0

1

2

3

4

5

6

7

1960 1970 1980 1990 2000 2012

30 Data from World Bank Open Data Database, “Fertility rate, total (births per woman),” http://data.worldbank.org/indicator/SP.DYN.TFRT.IN31 United Nations Department of Economic and Social Affairs, World Fertility Report 2013: Fertility at the Extremes, 2013; CIA World Fact Book, “Country Comparison: Mother’s mean age at

first birth”, https://www.cia.gov/library/publications/the-world-factbook/rankorder/2256rank.html.

Bye, bye, babies: average fertility per woman

Marie Ng et al., “Global, regional, and national prevalence of overweight and obesity in children and adults during 1980–2013: a systematic analysis for the Global Burden of Disease Study 2013”, The Lancet, 2014



are a bit older. The ASR incidence rises and at the same time the average age of diagnosis rises as well.” As discussed in the following section, this raises the possibility of over-diagnosis, but all things being equal, adopting a more active approach to looking for breast cancer should raise ASR incidence toward levels in developed countries.

However, the potential for such an impact on figures for countries in the study — outside of Australia, where screening is long established — is unclear. Several experts interviewed for this study certainly consider it a possible, or at least partial, explanation. For example, Dr Kris Chatamra, founder and chairman of the Queen Sirikit Centre for Breast Cancer Foundation in Bangkok, looking at the rapid rise in incidence in the last decade in his native Thailand, notes that “Diet, lifestyle and the environment have not changed much in 10 years, but we have become good at diagnosis. Perhaps the figure before was not correct.” As the country reports in this study show, South Korea has seen the most dramatic recent increase in breast cancer screening rates in the study. As noted above, it has also seen the highest increase in incidence; this may not be coincidence.

Dr Malcolm Moore, editor-in-chief of the Asian Pacific Journal of Cancer Prevention, though, thinks the overall effect of screening is likely to be small in the region to date. “Given there is no population-based breast screening for most countries in Asia, the cause of the rise in incidence is not primarily that.” In this study, China, Hong Kong, India, Malaysia and Thailand

— measured as still exclusively breastfeeding a baby at six months old. Although this measure tends to decline with wealth, already only 16% of urban Chinese babies exclusively breast feed to six months — a figure similar to that in the West. The South East Asia region, on the other hand, has the highest breastfeeding rate in the world (47%).32 Here, though, UNICEF warned in 2012 of rapid declines in the region.33

The collective impact of these shifts is likely to be substantial, although comparative numbers do not exist. Cancer Research UK, after looking at various meta-reviews, calculated the following: on average each birth cuts the probability of breast cancer by 7%; each year of breastfeeding by 4%; and each year earlier that first birth occurs by 3%. In comparison, being a light drinker through one’s lifetime raises breast cancer risk by 5%; for regular drinkers it rises by about 10% for each unit of alcohol per day on average. Being overweight post-menopause raises the risk by 15% on average, although greater alcohol consumption and weight increase the two last figures further.34 All are contributing, but changes in behaviour around having and feeding children seem particularly implicated in the marked difference in incidence between cohorts across much of the region.

Nothing about breast cancer, however, is simple. At least part of the rise in the number of diagnoses may have nothing to do with higher risk but be the result of greater efforts to look for the disease. “When we do screens,” notes Dr Anderson, “we find more disease at an earlier stage, and more commonly find it in women who

32 DWHO, World Health Statistics 2014, 2014; Sufang Guo et al., “Breastfeeding rates in central and western China in 2010: implications for child and population health,” Bulletin of the

World Health Organisation, 2013.33 “UNICEF Rings Alarm Bells as Breastfeeding Rates Plummet in East Asia” Press release 1 May 2012.34 “Breast cancer risk factors,” http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/risk-factors



40

50

60

70

80

90

100

1970-1975 1975-1980 1980-1985 1985-1990 1990-1995 1995-2000 2000-2005 2005-2010 2010-2015 2015-2020 2020-2025 2025-2030 2030-2035

China China, Hong Kong SAR Japan Republic of Korea India Malaysia Singapore Thailand Australia Taiwan

Growing breast cancer incidence can reflect healthcare progress elsewhere. “Sometimes, especially in low-income countries, more people developing breast cancer is the result of improved survival from other competing diseases, such as infectious diseases that in the past were the most common reason for people to die at a younger age” says Dr Anderson. This is most evident in emerging market countries, where progress against infectious disease is particularly marked: between 1990 and 2013, for example, life expectancy in India rose by more than 10 years among women, largely from gains in such conditions. Wealthier countries, though, are also seeing increases in life expectancy — South Korean women in the same period gained 7.5 years — with the biggest improvements arising from better outcomes in fighting cardiovascular disease.35

Whatever the causes, this progress in longevity raises a red flag when combined with the much higher incidence of breast cancer in later birth cohorts — members of

which are currently younger. As these women age into the prime cancer risk years, and older, less affected cohorts pass on, absolute numbers with the disease will rise even faster than the age-standardised rate alone might indicate. In Asia this phenomenon is likely to be pronounced. Although female longevity has risen worldwide, it has done so especially quickly in the region in recent decades (see chart).36 Already, according to United Nations figures, Hong Kong, Japan and Singapore have the longest female longevity of any jurisdictions on earth. In the next 15 years, South Korea will move from fifth place into fourth.

In Western countries, the risk of developing breast cancer more than doubles between ages 40 and 70.37 Most women in the currently younger, higher-incidence Asian cohorts will now live into these high-risk years. While in general this is good news, the outlook it brings for the absolute number of those with breast cancer is worrying.

aging and breast cancer: a dark lining to a silver cloud

35 Institute for Health Metrics and Evaluation (IHME). Life Expectancy & Probability of Death. Seattle, WA: IHME, University of Washington, 2014. Available from http://vizhub.healthdata.org/le/36 Data sources: Source of Data: UN Population Division, World Population Prospects Online Database, http://esa.un.org/unpd/wpp/; Statistical Yearbook of the Republic of China 2014, 2015; Taiwan projections from Center for

International Futures at the University of Denver, “Country Profile — Taiwan” http://www.ifs.du.edu/ifs/frm_CountryProfile.aspx?Country=TW37 For example, US figures: http://www.cancer.gov/types/breast/risk-fact-sheet#q2; UK figures: http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/breast-cancer/incidence-

invasive#heading-One

Female life expectancy at birth



have no population-based screening, and uptake in Taiwan, Singapore and Japan is under 50%. In these countries, there is therefore limited opportunity for screening to affect the statistics.

As a multi-factorial disease it is likely that the cause of breast cancer’s growing incidence in the Asia-Pacific region is also multi-factorial. The bad news is that so many drivers of incidence — whether more active case finding or the prevalence of risk factors — point to a rapid increase in the age-standardised risk burden. Indeed, as Dr Huang notes, many of the lifestyle-related risk factors affecting younger cohorts drive later, post-menopausal cancers more than pre-menopausal ones. Worse still, the otherwise welcome increased longevity in the region will multiply the effect of growing ASRs to create an even faster rise in the absolute numbers of those affected.

As one recent study put it, already “Asian breast cancer rates in recent generations are even surpassing the historically high rates in the US, highlighting an urgent need for efficient prevention and treatment strategies among Asian populations.” 38 What, though, should those strategies look like? n

38 Hyuna Sung et al., “Female Breast Cancer Incidence Among Asian and Western Populations: More Similar Than Expected”, Journal of the National Cancer Institute, 2015.



and body mass index are much more similar to most of the countries in this study, the projected figure is just 11%. The WCRF’s numbers may even be too high: its estimate of the preventable proportion of breast cancer in the UK is more than one-third greater than Cancer Research UK’s.39

Most risks, including genetics, are already fixed. As Sally Crossing, founder of the Breast Cancer Action Group New South Wales, puts it, “Both being tall and being a nun are not good for breast cancer. These are things you cannot do much about.” Similarly, although the number and timing of children are more controllable than a person’s height, the powerful social forces which have driven massive behavioural change in these choices in recent decades are unlikely to abate. Dr Dent explains that even where one might want to, “It is difficult to modify many of these risk factors. Truthfully, increasing breast cancer incidence is going to happen anyway.”

Dr Aranda concludes that “primary prevention has a role, particularly in public awareness of the role of weight and exercise in breast cancer causation, but early detection is the most critical factor and gives women the best chance of long-term survival.”

In the face of the breast cancer challenge in Asia-Pacific, the countries in this study, although different in many ways, face several common issues in shaping national responses.

the limits of prevention

When it comes to cancer, Dr Zorbas notes, “Prevention is the most cost effective long-term strategy.” Opportunities certainly exist to prevent some breast cancer incidence, in particular by encouraging healthy eating, more exercise, moderate or no alcohol intake, and breastfeeding. These lifestyle changes would particularly have an effect on the post-menopausal breast cancers which are growing increasingly common in Asia.

However, given that public health efforts with these goals frequently already exist to prevent other conditions, notably cardiovascular disease and other cancers, additional efforts will likely have a marginal impact on breast cancer. Moreover, even if entirely successful, the effect will be limited in many of the countries in this study. The World Cancer Research Fund (WCRF) estimates that better diet, more exercise and reduced drinking could cut the number of breast cancers worldwide by up to 40%. In China specifically, however, where alcohol consumption

sectiOn i - cHaPter 3: common challenges

39 Peter Baade et al., “Estimating the future burden of cancers preventable by better diet and physical activity in Australia”, Medical Journal of Australia, 2012; WCRF, “Cancer preventability estimates for diet, nutrition, body fatness, and physical activity”, http://www.wcrf.org/int/cancer-facts-figures/preventability-estimates/cancer-preventability-estimates-diet-nutrition; Cancer Research UK, “Statistics on preventable cancers”, http://www.cancerresearchuk.org/health-professional/cancer-statistics/risk/preventable-cancers#heading-One



with their own bodies or comfortable talking about them.” Meanwhile, a survey in Eastern China showed over 80% of women had poor awareness of the disease. Similarly, in Malaysia, even among those with a family history of the disease, 71% knew little about the risks.43

Economic development and better general education on their own do not solve the problem — the Indian study cited above showed no difference by level of schooling. Similarly, an international survey of knowledge which included female undergraduates in Singapore — likely to be among the better informed and wealthier of women in the region — found among them low understanding of the various risk factors for breast cancer. Although awareness was slightly better there than in Thailand and India, it was about the same as in China.44 Similarly, a small study of breast cancer survivors in South Korea — another group one would expect to be well-informed — showed a strong belief that stress is a leading factor behind breast cancer, a cause which is popularly posited but has never been clinically demonstrated.45

Nor are symptoms well recognised. Studies in Malaysia, China and Taiwan indicate that a painless breast lump is not seen as a serious issue by the general population.46

Another common part of the information deficit in low- and middle-income Asian countries in

Pervasive misconceptions and fear

For unpreventable breast cancer, down-staging — finding malignancies at the earliest possible stage — is vital. Even in India, which has the worst mortality-to-incidence ratio of the countries in this study, 90% or more of those found at stage I by the better clinics can survive for five or more years,40 while in Hong Kong and South Korea, with some of the best ratios, five-year survival for those found with the latest stage of the disease drops below 50%.41

Women themselves are essential to this process. Dr Somasundaram notes that “A lot of being successful at down-staging lies in health literacy.” The problem becomes, “How do we educate women and the community enough about early detection that it will lead to behavioural change.”

The foundation of this is better education about the risks and signs of breast cancer as well as about the survivability of the disease. Predictably, in this study’s lower and middle-income countries — where breast cancer has only recently begun to increase in incidence — lack of knowledge is a large problem. A recent literature review in India, for example, found no improvement in understanding over the years.42 Sameer Kaul, consultant in surgical oncology at New Delhi’s Apollo Cancer Institute, says that “Indian women by and large are still not familiar

40 Rashmi Bawa, “Breast Cancer in India: Current trends and Challenges,” International Journal of Medical Research Professionals, 2015; R. Arumugham et al. “Error! Main Document Only.Survival Analysis of Breast Cancer Patients Treated at a Tertiary Care Centre in Southern India” Annals of Oncology, 2014.

41 Ava Kwong et al., “Breast Cancer in Hong Kong, Southern China: The First Population-Based Analysis of Epidemiological Characteristics, Stage-Specific, Cancer-Specific, and Disease-Free Survival in Breast Cancer Patients: 1997–2001,” Annals of Surgical Oncology, 2011; Kyu-Won Jung et al., “Survival of Korean Adult Cancer Patients by Stage at Diagnosis, 2006-2010: National Cancer Registry Study,” Cancer Research and Treatment, 2013.

42 Addya Gupta et al., “A review of breast cancer awareness among women in India: Cancer literate or awareness deficit?” European Journal of Cancer, 2015.43 Li-Yuan Liu, “Breast cancer awareness among women in Eastern China: a cross-sectional study”, BMC Public Health, 2014; Cheng-Har Yip, “A Review of Breast Cancer Research in

Malaysia”, Medical Journal of Malaysia, 2014. 44 Karl Peltzer and Supa Pengpid, “Awareness of Breast Cancer Risk among Female University Students from 24 Low, Middle Income and Emerging Economy Countries”, Asian Pacific Journal

of Cancer Prevention, 2014. 45 Laura Nelson, “Diagnosing Breast Cancer in South Korea: ‘Western’ Behaviours, Stress, and Survivor Activism”, Journal of Korean Studies, 2012. 46 Zohreh Khakbazan et al., “Help Seeking Behavior of Women with Self-Discovered Breast Cancer Symptoms: A Meta-Ethnographic Synthesis of Patient Delay”, PLOS One, 2014.



have examined whether herbal medicines are able to ease the side-effects of allopathic cancer treatment. The danger is when one of Asia’s medical traditions — none of which can cure breast cancer — interferes with the use of Western medicine.

In certain countries the problem is an important cause of high levels of delayed presentation. A small study in Malaysia, for example, found that 60% of those who presented with late-stage breast cancer had first gone exclusively to traditional healers.47 Similarly, of women diagnosed with cancer at one hospital in Delhi, roughly 70% went to Western doctors; the rest used providers of traditional Indian medicine.48

Although the problem is starkest in countries where Western medicine is most difficult to access, it is more than simply a question of development. Dr Cheng Har Yip of the University Tunku Abdul Rahman explains that in her country, “Education and poverty are not the main reasons for delayed presentation. I have seen a university lecturer presenting with an advanced cancer because she believed in alternative medicine as an active form of treatment.” The problem still exists, though to a far lesser extent, in Taiwan and Singapore.49

The danger is not just a matter of treatment, but also interpretation of symptoms. One Hong Kong study noted that patients interpreting a painless breast lump using the thinking of traditional Chinese medicine (TCM) would

particular, notes Dr Aranda, is that women often think “breast cancer is a death sentence” — a belief that, by causing women to put off getting medical attention, can become self-fulfilling. As Dr Chatamra puts it, “This does not apply just to uneducated people. Deep down, Thai women are terrified” of a breast cancer diagnosis. Accordingly, as Dr Aranda points out, an essential part of addressing the challenge of breast cancer is the use of “culturally appropriate role models to demonstrate powers of early detection.” Dr Somasundaram agrees: “If you see women getting well,” it will change behaviour.

Making available basic information is far from sufficient for effective down-staging. In much of Asia, cultural beliefs re-enforce misperceptions about breast cancer and tend to delay women from seeking medical help.

One problem is a frequent preference for sole use of traditional forms of medicine in many Asian countries to the exclusion of Western healthcare. This need not be a question of either-or. Many in Asian societies see both their own traditional medicine — a variety of traditions exist across the region — and allopathy as potentially useful tools and are ready to use one, the other or both interchangeably. The choice may depend on anything from what is readily accessible to what seems better to explain to an individual about how he or she feels. Accordingly, Asian breast cancer patients frequently use both Western and traditional treatments simultaneously, and a growing body of studies

47 NA Taib et al., “Breast cancer in Malaysia: are our women getting the right message? 10 year-experience in a single institution in Malaysia”, Asian Pacific Journal of Cancer Prevention, 2007.

48 Sedigheh Pakseresht et al., “Stage at Diagnosis and Delay in Seeking Medical Care Among Women With Breast Cancer, Delhi, India”, Iranian Red Crescent Medical Journal, 2014.49 See country reports below.



Concerns about social relationships are not confined to Malaysia, nor are they the only form of stigma. Dr Chatamra notes that in Buddhist Thailand, women themselves fear that their cancer may be the result of wrongs done in a previous life. In South Korea, some living with breast cancer face beliefs that, because it is the result of “Westernised” behaviour, the disease came from abandoning proper, South Korean ways, however defined.52 Again, economic development is no guarantee of enlightenment. As discussed in the relevant country reports below, stigma in various forms — such as poorer employment chances — attached to those who have been treated for breast and other cancers remains an issue in Taiwan, Hong Kong, Singapore and Japan.

Cultural beliefs, however, are not immutable. Although Australia has come the furthest of any of the countries in this study in changing public perceptions around breast cancer, much of this progress has occurred in recent decades. Dr Zorbas recalls that “Twenty years ago the word ‘cancer’ was hardly ever spoken. You had euphemisms, like ‘the big C’. Raising awareness, along with screening and improved treatments, have led to significant gains in survival.” Dr Aranda agrees: “In the early 1980s in Australia, there was stigma around cancer generally: the word cancer was a death sentence. People hid their diagnosis. It was really when survivors started speaking out for greater public awareness and better services that this changed. Breast cancer, unlike many other cancers, is now in contrast almost a badge of honour for survivors.”

change diet rather than seek a clinical examination.50 Similarly, in Taiwan, the use of rehabilitation services for those who have completed primary treatment is noticeably lower than one would expect given the number of women involved. This may reflect the use, and failure, of TCM.51

Breast cancer awareness efforts, then, need not only to inform but to prove the worth of early detection and treatment in the face of a competing system which will always be present.

Another common issue that makes women reluctant to seek care is the stigma surrounding breast cancer. At an extreme, even an early-stage diagnosis can ruin a woman’s life and impede her relatives’ life chances. In Malaysia, for example, Dr Somasundaram explains that “Especially within the Malay community, the whole basis of many women’s lives is that you have a partner and a family network. Breast cancer means you might lose that.” Although not as common in Malaysia as women fear, enough husbands leave their wives because of a diagnosis that it is a legitimate concern. Moreover, because of a popular misunderstanding that breast cancer is a largely genetic disease, a diagnosis will make the chances of marriage for the children of a woman with breast cancer far worse. If a woman assumes that Western medicine will not work anyway, avoiding a diagnosis until the last minute in this context can be a rational choice.

50 WWT Lam et al., “Factors influencing delayed presentation with symptomatic breast cancer in Hong Kong Chinese women”, Hong Kong Medical Journal, 2009.51 Yi-Hsien Lin and Po-Jung Pan, “The use of rehabilitation among patients with breast cancer: a retrospective longitudinal cohort study, BMC Health Services Research, 2012.52 Nelson, 2012.



a screening battlefield Ms Crossing calls them “the breast cancer screening wars”, with good reason.

Given the importance of early diagnosis and treatment, screening is an obvious potential strategy in efforts to control breast cancer. In general, any cost-effective screening effort requires several factors to be present. These include: clinical benefit from finding the disease early; a sufficiently high incidence of undiagnosed disease in the target population; an effective, affordable test that does not create an undue number of false negatives or false positives; and facilities to confirm the diagnosis. Finally, none of this does any medical good unless the health system has the capacity to treat the condition in question.

The current controversy over breast cancer screening in developed countries is the extent to which these conditions exist. Widespread mammography-based breast cancer screening began in many Western states after a Swedish study reported in 1985 that mortality from the disease dropped 31% after screening of women aged 39 to 74 began.54 Most research in the following decades has shown relatively little benefit for women under 50.55 The argument today is around the impact several decades of high levels of screening for those at older ages has had, and the views diverge widely.

Two examples illustrate the gulf. A literature review by the IARC reported in 2015 that,

In many of the countries in this study, cultural change will require working across all of society, not just among women. For example, men are far from deaf to the challenge of breast cancer. In India and Malaysia, women with husbands are more likely to seek medical care after a diagnosis than are single or widowed women.53 Shu-Ti Chiou, director-general of Taiwan’s Health Promotion Administration, says that “I cannot describe just how active husbands are” in the country’s many breast cancer support groups. In societies where men, or even families as a whole, still make decisions about when an individual seeks medical care, this need for society-wide education is obvious. But it is also the case in more Westernised countries. Noor Quek, president of Singapore’s Breast Cancer Foundation, says that the organisation has increasingly worked informally and in structured groups with the men who provide important support for those with breast cancer. “We embrace men in all we do — half our Executive Council are men — to show that this is not only a women’s issue,” she says.

Of course, across the ten countries in this study, the specific details of popular understanding of breast cancer and societal contexts differ widely, as do their impact on staging and treatment choices. Nevertheless, whatever their particular forms, finding appropriate ways to change views and behaviours among affected women, as well as other relevant actors, remains an important consideration for each. As Dr Somasundaram puts it, “We can shout, but if it doesn’t really change anything, what is the point?”

53 Sumarni Mohd Ghazali “Non-Practice of Breast Self Examination and Marital Status are Associated with Delayed Presentation with Breast Cancer,” Asian Pacific Journal of Cancer Prevention, 2013; K Dinshaw et al., “Determinants of compliance in a cluster randomised controlled trial on screening of breast and cervix cancer in Mumbai, India,” Oncology 2007

54 Laszlo Tabár et al., “Reduction in mortality from breast cancer after mass screening with mammography”, The Lancet, 1985.55 WHO, “WHO Position Paper on Mammography Screening,” 2014.



which would never have advanced to cause a medical problem. Most screening programmes have led to a marked increase in the number of diagnosed early-stage breast cancers but a noticeably smaller corresponding decrease in the number of late-stage ones — a sign that at least some of the treated cancers would have been benign.59 Again, the extent is highly contested: the IARC review says mammography over-diagnosis adds 6.5% to the number of breast cancer cases; the Cochrane one cites studies saying the figure is between 30% and 45%. Given the physical and emotional pain arising from surgery and treatment, as well as the economic cost, the exact figure is of no small consequence. Moreover, if over-diagnosis is high, it skews survival rates upward because the relevant individuals were not going to die from the disease in any event.

Overall, the majority of experts still espouse population screening, but the sceptics are by no means considered scientifically marginal. Although this debate centres around data from populations that are largely European or of European descent, it is closely watched in Asia. As Dr Ko notes, “at the policy level, the extent to which we should rely on mammography screening to reduce mortality is a major issue.”

Several other issues further complicate the mammographic screening debate in Asia. First, as noted earlier, incidence may be rising in the region but it is still lower than in the West. With fewer cases to find, screening would therefore, all else being equal, be less

overall, while mortality in unscreened women aged 50 to 69 had dropped by 23% — presumably through better education and medical care — among women screened using mammography the decline had been 40%.56 On the contrary, Cochrane — a highly respected organisation which publishes medical analyses based on literature reviews — found in 2013 that the most reliable studies showed no reduction in mortality at all.57 The two sides in the debate, not surprisingly, disagree strongly over which studies are biased and which well conducted.

Changes in mortality, whatever they are, need to be weighed against negative outcomes of screening. Mammography produces a large number of false positives: anywhere from 20% to 60% of women who attend screens once every two years will be incorrectly called back for further testing at some point in their lives. Most can be cleared without a biopsy, but 5% undergo an invasive procedure.58 Critics point to the resultant psychological and in some cases physical distress as an important cost of screening. Ms Crossing, a long-term breast cancer survivor, believes that this is not excessive given the potential benefits: “At most you get a breast squashed and a biopsy to confirm or disprove a diagnosis. None of this is terribly harmful compared to the risk.”

More difficult to gauge, however, is the cost of over-diagnosis — the finding of real, potential cancers at an early-stage, so-called Stage 0,

56 Béatrice Lauby-Secretan et al., “Breast-Cancer Screening - Viewpoint of the IARC Working Group”, NEJM, 2015.57 Peter Gøtzsche and Karsten Jørgensen, “Screening for breast cancer with mammography”, Cochrane Library, 2013.58 Béatrice Lauby-Secretan et al., “Breast-Cancer Screening - Viewpoint of the IARC Working Group,” NEJM, 2015; Peter Gøtzsche and Karsten Jørgensen, “Screening for breast cancer with

mammography,” Corchrane Library, 2013.59 See, for example, Archie Bleyer and Gilbert Welch “Effect of Three Decades of Screening Mammography on Breast-Cancer Incidence,” NEJM, 2012; Philippe Autier et al., “Advanced breast

cancer incidence following population-based mammographic screening,” Annals of Oncology, 2011.



no discernible impact on health outcomes.63 Similarly, clinical breast examination (CBE) has, in the words of Dr Aranda, “credibility but not much evidence.” Dr Chatamra adds that it is so difficult to do well that he would not fully trust a diagnosis via CBE, even if done by relatively senior colleagues in oncology, without double checking. Trials in India to see if CBE population screening might be useful, especially in countries where mammography is too expensive, are ongoing.64

Another way to improve the effectiveness of screening might be to target it at populations at higher risk, a strategy Hong Kong is considering. The problem, however, is determining who is at risk. Western tools, in particular the widely disseminated Gail model for measuring risk, are not as accurate in South Korea, for example, as in the US, leading researchers in the former country to develop their own.65

One final consideration — no matter what tool is used for screening — is its potential educational effect beyond its contested clinical value. Dr Aranda explains that “In Western countries, screening has been one part of the health consumer movement to raise awareness. You had earlier diagnoses even in women not participating. They feel more positive about what to do if they find a lump.”

The net result of these diverse factors, according to Dr Ginsburg, is that “It is not always clear whether a specific country is

attractive. Even in Taiwan, which adopted a population-wide programme in 2010, the cost per life-year saved is higher than for any other cancer screening.60 Second, a relatively large number of Asian women still develop breast cancer in their 40s, when mammography is less effective. One reason is that it is harder for this technology to find cancers in dense breasts and density declines with age. Adding to this latter complication is the higher average breast density of Asian women compared to European genotypes.61

Finally, especially in Asian emerging markets, says Dr Moore, decisions around screening are “very much a question of cost.” Mammography machines, while affordable for wealthy countries, may not be for developing ones, especially given the training needed to operate them and the broader infrastructure required to support, and deal with the results of, screening. Dr Chatamra puts the issue succinctly: “If I were the Prime Minister of Thailand, I would say that breast screening would bankrupt the country. If I were Minister of Health, I would say it was interesting. If you ask me in my position, of course I would like to see it.”

Other technologies for screening exist but none have been shown to reduce mortality population-wide. Ultrasound used in developed countries alongside mammography can improve results, but on its own performs worse except, potentially, for women known to be at high risk.62 Physical examination, meanwhile, depends too much on the skill of the individual. Encouraging breast self-examination has

60 See country report below.61 Gertraud Maskarinec, “Ethnic differences in mammographic densities,” International Journal of Epidemiology, 2001.62 Chiun-Sheng Huang, “A Population-Based Cross-Over Randomised Controlled Trial of Breast Cancer Screening with Alternate Mammography and Ultrasound for Women Aged 40 to 49

Years in Taiwan”, Cancer Research, 2009; S Shen, “A multi-centre randomised trial comparing ultrasound vs mammography for screening breast cancer in high-risk Chinese women”, British Journal of Cancer, 2015.

63 Jan Kösters and Peter Gøtzsche, “Regular self-examination or clinical examination for early detection of breast cancer”, Cochrane Database of Systematic Reviews, 2003 (updated 2008). 64 Rengaswamy Sankaranarayanan “Clinical breast examination: preliminary results from a cluster randomized controlled trial in India,” Journal of the National Cancer Institute, 2011. No update since.65 Boyoung Park et al., “Korean Risk Assessment Model for Breast Cancer Risk Prediction”, PLOS One, 2013.



shaped around the characteristics of the disease — in particular the biological attributes of the tumour and stage at presentation — as they appear in each individual. Other relevant factors specific to the person in question, such as co-morbidities, should also be taken into account. Depending on such circumstance, each person should receive the optimal, evidence-based choice of surgery, adjuvant therapies and other support provided by a multi-disciplinary team made up of various specialists. This team should work together around an agreed individual treatment plan. Finally, the patient should not be a passive recipient of care but be involved in the creation of, and agree to, the plan.

The extent to which healthcare systems can approach this general ideal is central to the success of breast cancer control. That capacity inevitably varies widely depending on a great range of factors, including government resources, the nature of health systems and the priorities of health ministries. Accordingly, generalising is of little value. Instead, the issue of treatment is dealt with in the country reports in the next section.

Several access issues, on the other hand, are more widespread. One is the difficulty in obtaining optimal breast cancer care in rural areas. As discussed in the country reports, this is particularly the case in China, India, Thailand, and Malaysia, where in some parts of the countryside care is non-existent. This is part of a more general problem these states have with healthcare access in rural areas — a common problem in developing countries.

well-positioned to begin an organized breast screening program, and whether mammography is an appropriate screening modality.” The WHO issued recommendations regarding mammography in 2014 which take account of patient age, national resources and health-system capacity both to carry out high-quality mammography and to do anything if a cancer is found. In essence, the WHO recommends that well-resourced countries screen women aged 50 to 69. They may also wish to do so for women in their 40s or 70s, but should do it only with rigorous monitoring and evaluation of the results. Limited-resource countries with strong health systems should consider mammography for women aged 50-69 as long as it is possible to maintain high standards and the screening takes place in the context of good overall cancer control. However, the WHO recommends that these states not screen women in their 40s or 70s, and that limited-resource states with weak health systems not engage in population-wide mammography at all.66

The breast screening wars show no sign of letting up. For now, countries need to thread their way across the battlefield based on local circumstances and resources.

treating the disease Because of the biological similarities in breast cancer around the world, a degree of consensus on what treatment should look like exists. Broadly speaking, such care should be

66 WHO, “WHO Position Paper on Mammography Screening”, 2014.



greater risk of developing new breast or other cancers; frequent fatigue; swelling as a result of removed lymph nodes; pain, particularly in the shoulders and arms; emotional distress from worry about recurrence or from the impact of treatment; and clinical depression.

Although not as beset by controversy as screening, or as culturally complex as awareness-raising, the relative novelty in much of the region of care programmes for those who have finished cancer treatment means that they are very much a work in progress. Indeed, even how to describe this group is contested. Ms Crossing explains that some say the term “survivor” should apply to anyone who has been diagnosed with breast cancer — even those at the start of this journey can face substantial side effects, both physical and psychological, from treatment. Moreover, it is difficult to tell precisely when primary treatment is over. Others reserve the word for those who have been through primary breast cancer treatment. The debate is far from settled. In the absence of consensus, this study uses “survivor” to describe those women who have gone through primary treatment for breast cancer. Rather than an ideological statement, this simply reflects the need for a simple term to describe this group.

The widespread presence across the region of breast cancer patient and survivor NGOs is essential to progress here, but medical care for these individuals also presents special challenges. In certain countries in our study —

This issue, however, also exists to a lesser degree in wealthier countries. In Okinawa, for example, breast cancer mortality is higher in rural than in urban areas, despite a lower incidence. Meanwhile in Australia, although there is no mortality gap, accessing the best quality therapies in rural areas is an ongoing problem.67

Also, as discussed in several country reports, wealthier countries can be slow in deciding whether or not government health systems will cover the cost of innovative therapies. This can place substantial financial strain on individuals and families of those affected who decide to be treated with innovative therapies that are often available in other major markets. This is not a simple problem for governments — many of these new treatments are expensive — but more rapid decisions can bring clarity for all concerned.

the problems of success Because breast cancer is so curable, a large number of women survive for many years after primary treatment. Even with relatively high mortality rates, for example, India currently has roughly 400,000 women who have been diagnosed with breast cancer sometime in the last five years.68

Women who have come successfully through treatment, however, have specific physical and mental health needs distinct from the population as a whole. These include, among others: a

67 Kentaro Tamaki et al., “The Challenge to Reduce Breast Cancer Mortality in Okinawa: Consensus of the First Okinawa Breast Oncology Meeting,” Japanese Journal of Clinical Oncology, 2013; Peter Fox and Adam Boyce, “Cancer health inequality persists in regional and remote Australia,” MJA, 2014; Michael Coory et al., “Australia is continuing to make progress against cancer, but the regional and remote disadvantage remains,” MJA, 2013.

68 Mohandas Mallath, “The growing burden of cancer in India: epidemiology and social context,” The Lancet, 2014.



results for states in this study ranged from Australia in second place to China in 71st. Accordingly, this central element of breast cancer provision will also be left to the detailed country reports.

To differing degrees, and in distinct forms, the ten countries in this study need to face rising or already high breast cancer incidence. The next section of the report looks in depth at the challenge facing each country and its strengths and weaknesses in breast cancer control. n

including China, India, Thailand and Malaysia — such care either does not exist or is very rare and may be provided largely by NGOs. Moreover, in much of the region, studies have only recently begun to determine the specific needs of survivors in the context of their national societies.69 In wealthier countries medical systems usually address the issue but problems remain. Japanese oncology nurses, for example, understand the need to support survivors but find that they have little time or opportunity to do so due to the way breast cancer care is currently structured. A recent survey of South Korean oncology specialists, meanwhile, found that in practice most deviate from evidence-based guidelines on care for survivors, in some cases providing more care than recommended, in some cases less. Finally, a survey of oncology doctors and nurses, a large majority of whom were from Singapore, indicated that post-treatment care “is relatively inadequate in Asia.”70

Palliative care In every country in this study, breast cancer treatment proves ineffective for a substantial number of women. Helping them to die with dignity, and in as much physical and emotional comfort as possible, is a key part of cancer care. As with primary breast cancer treatment, however, generalisations across the ten countries in this study are difficult. Indeed, in The EIU’s Quality of Death Index 2015 — which ranks palliative care in 80 countries — the

69 Tania Islam, “The Malaysian Breast Cancer Survivorship Cohort (MyBCC): a study protocol”, BMJ Open, 2015; Jihyoung Cho, “A Review of Breast Cancer Survivorship Issues from Survivors’ Perspectives”, Journal of Breast Cancer, 2014.

70 Terence Ng, “Follow-up care practices and barriers to breast cancer survivorship: perspectives from Asian oncology practitioners”, Support Care Cancer, 2014; Asako Miura et al., “Oncology nurses’ recognition of long-term cancer survivorship care in Japan”, Asia Pacific Journal of Oncology Nursing, 2015; Ku Sang Kim et al., “The reality in the follow-up of breast cancer survivors: survey of Korean Breast Cancer Society”, Annals of Surgical Treatment and Research, 2015.



so that definitive pathology diagnosis can be made without unreasonable delay. The third is treatment with effective regimens — you don’t treat breast cancer with a single intervention in a single episode. Breast cancer requires surgery and drug therapy and often radiation treatment given in sequential visits. This necessity for longitudinal [i.e. long-term, post-primary treatment] care is globally an obstacle that health systems must address.” Breast cancer treatment also has to take place in a context where, should it fail, palliative care is available. Last, but by no means least, the health system must be able to collect good data about cancer with which to find evidence-based improvements for every one of the above areas.

None of these is dispensable and none happen by accident. They are the result of active policy choices. An examination of how well countries are addressing these requirements accordingly allows a comparison of their national responses.

What does good breast cancer control look like?Because the specifics of the breast cancer challenge differ markedly by country, no one-size-fits-all prescription exists for how health systems should respond. Nevertheless, a few clear elements common to any successful programme do exist.

A multi-faceted problem requires an equally multi-faceted, comprehensive response. According to Dr Anderson of the Breast Health Global Initiative: “There are some health issues where single interventions can be effective. With breast cancer, you have to go through a sequence of activities to improve cancer mortality: the first are steps to improve early detection, not necessarily by screening, but you somehow need to down-stage in order to make it more treatable. Then you need to prove it is cancer and have health systems able to do biopsies

sectiOn ii - cHaPter 1: the eiu Breast cancer control scorecard

section ii: How well are countries doing?



In creating this scorecard, one issue quickly became abundantly clear. As Dr Ginsburg notes of the WHO’s current work on non-communicable diseases (NCDs), “defining metrics is a huge challenge” and, for breast cancer in particular, comparable national information is rare on the ground. For each of our scorecard categories,

the scorecard To facilitate this, The EIU has created a unique scorecard that covers policy across all the areas relevant to breast cancer: awareness-raising; early detection; treatment quality and access; long-term survivor support and openness to advocacy; palliative care; and data collection. Each country has been assigned a score from 0 to 48.

aWareness earLY treatMent LOnG-terM PaLLiative Data -raisinG DetectiOn QuaLitY survivOr care cOLLectiOn anD access suPPOrt anD OPenness tO aDvOcacY

Australia 8 8 8 8 8 8 48

Taiwan 8 8 7 8 6 8 45

Hong Kong 8 8 7 7 6 8 44

Singapore 8 8 7 6 6 8 43

Japan 8 8 8 7 6 6 43

South Korea 8 8 7 6 6 6 41

Malaysia 8 5 4 2 4 4 27

Thailand 3 7 6 0 4 4 24

China 4 1 1 0 2 2 10

India 3 0 1 0 2 2 8

scOre 66 61 56 44 50 56

Key activities: The provision

of national campaigns

to raise breast cancer

awareness and the need

for early treatment


of an evidence-based

approach to screening

programmes and accessible

diagnostic services


of multi-disciplinary

care for cancer patients, and

funded or subsidised

cancer treatment


of survivorship programmes

and survivors’ advocacy

groups


of high-quality palliative-care

services

Key activities: The collection

and availability of high-

quality cancer incidence

and mortality data

scOre



A second lesson from the scorecard is that the focus of breast cancer control tends to be at the front end. Overall, awareness-raising, detection and treatment scores are noticeably higher than those for long-term support and palliative care. As the country reports show, this is a common issue, with even many wealthy countries still coming to terms with how to care for women after primary treatment, whether successful or not. This is not, however, merely a question of finding resources. Half of the long-term support score, for example, comes from the impact which survivors can have on policy around breast cancer. Consultation is not expensive, but may require profound cultural change — both for relevant officials and for women affected by the disease.

Finally, the scorecard shows that, while policy is crucial, it is not everything. Although outcomes — as measured by national mortality-to-incidence ratios (MR:IRs) — are broadly consistent with the results on the scorecard, important exceptions exist. Malaysia, for example, does as poorly as India in the MR:IR figure. Here, a possible explanation is that Malaysia’s awareness- raising efforts have had disappointing results in the face of a combination of entrenched cultural beliefs and poor access to care.

The scorecard, then, can only serve as a rough starting point for considering how countries are addressing breast cancer. A more informed discussion requires a closer look at the situation in individual states. n

therefore, we have relied on available proxies in order to get a sense of the state of play. Five of the categories have two such indicators each, while palliative care relies on The EIU’s 2015 Quality of Death Index scores, which are the result of a large number of metrics. The indicators have also been carefully chosen to avoid taking a stand on unsettled questions: our screening indicator, for example, measures the extent to which countries have considered the potential value and cost-effectiveness of different modalities. It makes no judgement on the final decision made. The details of how the scorecard was produced are available in an appendix at the end of this study.

Inevitably, the results of such an exercise are indicative rather than precise. Nevertheless, they are a useful starting point for discussing the state of breast cancer control in the Asia-Pacific region.

The first clear message from the results is that wealth, to a large extent, correlates with the strength of breast cancer control policy. Although there are small differences between the six wealthiest jurisdictions in this study, they form a clear group at the top. Income alone, however, does not explain everything. Thailand and Malaysia make up the second group of countries even though the former’s GDP per capita is only about 60% of the latter’s. Policy can clearly have an effect. Finally, at the bottom are India and China which, to date, have some of the lowest incidence in this group. Increases in their ASRs, however, mean that policy here will require attention even amid all the many other pressing healthcare issues they face.



71 Australian Institute of Health and Welfare, “Australian Cancer Incidence and Mortality (ACIM) books: Breast Cancer 2015”, 2015, http://www.aihw.gov.au/acim-books.72 Figures from Australian Institute of Health and Welfare (AIHW), “Australian Cancer Incidence and Mortality (ACIM) books: Breast Cancer 2015”, 2015; Hong Kong Cancer Registry

Database, http://www3.ha.org.hk/cancereg/e_a1b.asp.

sectiOn ii - cHaPter 2: country rePorts

100,000. It has since stayed at about the same level with minor variations.71 As is the case in the West, the peak risk years for women are their 60s. It would be wrong to say breast cancer in Australia is not a disease of the young as well, however. In 2011, the age-specific incidence for Australian women in their 40s was over 13% higher than for women of the same age in Hong Kong.72 But older women in Australia are far more likely to develop the disease than

incidence Australia’s breast cancer burden is like that in most of the developed world. Incidence is well above that in the other states covered by this study: its ASR, 86.0 per 100,000, is the 16th highest in the world according to Globocan Atlas data. The figure has largely stabilised. After a steady rise through the 1980s, and a jump in the early 1990s following the introduction of a population-wide mammography screening programme, by 1995 the ASR was 83.9 per

KeY Data

General

Population in millions (2015) 23.9 Australian Bureau of StatisticsGDP (PPP) per capita (2015) $45,220 WDI and EIU calculationDoctors per 1,000 population (2015) 2.83 Espicom; OECD; AIHWTotal healthcare spending per capita (2015) $4,980 WHO

Female Breast cancer

Age-standardised Incidence Rate per 100,000 (2012) 86.0 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 14.0 GlobocanMortality to Incidence Ratio 0.16 EIU calculationFive-year relative survival (2006-2010) 89% Cancer Australia

austraLia



Department of Health sets policy but Cancer Australia, a government agency established in 2006, provides leadership on the disease. In particular, it co-ordinates inter-governmental collaborative initiatives, guides scientific research, gives evidence-based policy advice and assists the government in implementing policy. State governments also have an important role — including the maintenance of cancer registries — as well as their own cancer control plans. When it comes to treatment, jurisdictional divisions also appear: the states are responsible for public health and public hospitals; the commonwealth government, meanwhile, subsidises most of the cost of GPs, out-of-hospital specialists and prescription drugs, giving it a major policy presence in these fields.

Non-government actors also have a substantial role. Private facilities exist alongside public ones and often play a major part in cancer care provision — a majority of radiology is private, for example.76 The non-state actors who truly set Australian cancer control apart from the other countries in this study, though, are its NGOs, especially those representing consumers — cancer patients, survivors and their families. Helen Zorbas, CEO of Cancer Australia, explains that “Australia has led in terms of consumer engagement. They sit equally at the table with health professionals and others at all levels. This really informs the direction of research, clinical practice and policy.” These groups also frequently mirror the political structure in the country, having state bodies and national umbrella organisations.

in Asia. Indeed, population ageing and growth mean that, from a health system perspective, breast cancer is an increasing challenge, with the number of cases expected to have risen by 56% between 1995 and 2015.73

The most striking thing about breast cancer in Australia is its low — and decreasing — mortality rate. With a steady downward trend since 1993, the ASR for mortality was 36% lower by 2012, according to Australian registry data. The current Globocan estimate for mortality is 14.0 per 100,000, which is slightly below the government figure. Marked improvement is also visible in the overall five-year survival: between 1982 and 1987 it was 72%; between 2006 and 2010 it reached 89%.74

However, breast cancer is far from a threat neutralised. In 2013, it accounted for 1 in 25 of all Australian female deaths, and the actual number of deaths is now slightly higher than when the ASR decline began.75 Nevertheless, the data do show why, as Sally Crossing, the founder of the Breast Cancer Action Group New South Wales and Convenor of Cancer Voices Australia, two leading cancer patient organisations, as well as a breast cancer survivor puts it, “Australia is generally seen by the rest of the world as being pretty good at dealing with breast cancer especially early stage.”

Behind much of this progress is an ecosystem of stakeholders from the public, NGO, activist, academic and private sectors, present at the national, state and local levels. On the government side, at the national level, the

73 Figures from AIHW, “Breast Cancer 2015”; Australian Institute of Health and Welfare, “Cancer in Australia: an overview, 2014”, 2014.74 Cancer Australia, Report to the Nation: Breast Cancer 2012, 2012.75 Institute for Health Metrics and Evaluation, “GBD Compare,” 2015, http://vizhub.healthdata.org/gbd-compare; Australian Institute of Health and Welfare, “Australian Cancer Incidence

and Mortality (ACIM) books: Breast Cancer 2015,” 201576 Royal Australian and New Zealand College of Radiologists, 2012 RANZCR Radiology Workforce Census Report: Australia, 2013



awareness However they have been conducted, Australian anti-cancer efforts have certainly succeeded in creating an informed population. Ms Crossing says that “breast cancer has a high profile in the community and is now something that is easily and fully discussed except, perhaps, in some migrant communities.” A 2007 survey, for example, found that only one in 20 women could not correctly name at least one potential symptom of breast cancer, and 86% cited breast lumps — both improvements from just four years earlier.78 More recently, 91% of respondents to a 2014 survey said that breast cancer could be successfully treated, and 97% that early detection can mean less invasive treatment and a better quality of life.79 Dr Zorbas notes that the last two decades “have seen great changes in awareness across the mainstream [population], which has been one of our greatest strengths. It has led to a significant difference in survival and quality of life.” In particular, she credits survivors for having pulled back the curtain on a once taboo subject.

screening One of the mysteries of Australian cancer control is that this widespread awareness has not led to elevated levels of breast cancer screening. The national government established BreastScreen Australia in 1991 to provide free, population-wide mammography every two years to women aged 50-69. In 2013, the upper limit was extended to 74. The initial, and continuing,

Prominent major examples of the latter are the Breast Cancer Network Australia, a peak national body with 300 organisational members; the Cancer Council Australia which represents state Cancer Councils (member-based NGOs for those interested in cancer); and Cancer Voices Australia, which represents several dozen consumer groups nationwide.

All this diversity can impede progress. One notable example is cancer registries. These are the responsibility of state governments and, although generally of high quality, they do not all collect the same information. When they do, they do not necessarily use the same metrics. They are sometimes reluctant to pool data with others, and their information systems are not interoperable. Although the Australian Association of Cancer Registries is able to provide basic incidence and mortality data, questions such as the outcomes associated with any given treatment cannot be addressed with data at the national level.77

For the most part, however, a remarkable degree of formal and informal co-operation and voluntary co-ordination allows Australian anti-cancer actors to harness their diversity. Dr Zorbas explains that Australia “has a cohesive and well-established breast cancer community that includes all aspects of the system. There is a wide range of stakeholders, and all of this work cannot be done without effective engagement.” Ms Crossing adds that “Such engagement is very valuable largely because it means that all stakeholders have ownership of policy, so they are all more likely to follow it.”

77 Economist Intelligence Unit, Getting it all together: Connecting Australian breast cancer care, 2011.78 Sandra Jones et al., “Australian women’s awareness of breast cancer symptoms and responses to potential symptoms”, Cancer Causes & Control, 2010.79 McNair Ingenuity Research, Campaign Evaluation: BreastScreen Australia, 2015.



reorganisation of these physicians into Primary Health Networks in Australia may provide a way forward. One of the key performance indicators of these networks will be cancer screening rates, and the government is considering attaching financial incentives to targets.

treatment and care However diagnosed, cancer treatment in Australia is generally recognised as being of a high quality. “Our facilities and access are a strength,” says Ms Crossing. “Multi-disciplinary care has long been a cornerstone” of breast cancer in the country, adds Dr Zorbas. In fact, she notes, breast cancer typically sets an example others follow in terms of the organisation of services and sub-specialties. Care is also affordable, says Ms Crossing. “We have comparatively good access to treatment, and [because of government support] drugs don’t cost an arm and a leg. We are pretty lucky here.”

Of course, no system is perfect. A recent Australian Senate review of the national cancer drug approval and payment system noted that, although it has served the country well in general, the government should consider a number of possible improvements, including: more active stakeholder involvement, use of data from assessments by comparable overseas regulators, and other technical changes. The review’s conclusions, though, are more ways to strengthen current arrangements than a call for wholesale change.82

goal is to screen 70% of the target population each year. By 1997, according to data from the government’s Australian Institute for Health and Welfare, it was reaching 54.8%. Since then, participation levels have not really moved, varying between 54% and 58%.80 This does not mean complete stasis: although the participation rate for BreastScreen Australia has remained relatively stable, the absolute number of women screened in any two-year period has increased steadily year on year because more are in the target range. Nevertheless, BreastScreen’s relative popularity remains below what was hoped.

The debate over the value of screening has been cited elsewhere as a reason for this low participation; the debate is certainly as active in Australia as anywhere else. Research by BreastScreen, though, indicates that it has not had an impact on conventional wisdom and hence can be assumed to have had little impact on screening rates. A survey conducted for the organisation found that in 2014, 95% of women believed that regular screening is the best way to detect breast cancer; 96% that the benefits of screening outweigh the negatives; and 90% that screening significantly reduces breast cancer deaths. The main reasons why women did not screen seemed to be denial of, or the desire not to think about, the possibility of breast cancer and the discomfort which the procedure causes.81

This suggests that education is still needed to provide a sense of urgency about breast cancer. Dr Zorbas adds that GPs play an important role in increasing screening participation. The recent

80 BreastScreen Australia monitoring report 2012–2013, 2015.81 Ibid; Woolcott Research, Campaign Developmental Research for Breast Screening, 2014.82 Senate Community Affairs References Committee, Availability of new, innovative and specialist cancer drugs in Australia, 2015.



work together on co-ordinated care for breast cancer survivors following a shared, patient- held care plan.84 It was a success and a framework is being developed for rolling it out nationally. The objective is that it will improve continuity of care, free up specialist oncological resources and — as other research indicates — achieve health outcomes that are just as good as oncologist-only care. Looking ahead, says Dr Zorbas, Cancer Australia hopes to working to develop evidence-based pathways to stratify survivor care based on health risk.

Finally, palliative care is also of a very good quality. It has some weaknesses, such as uneven distribution of facilities and lack of human resources in certain parts of the country. Nevertheless, the 2015 EIU Quality of Death Index puts Australia second overall and first for the countries in this study.

Overall, then, Australia’s breast cancer control ecosystem has important strengths in every key area, but it is not standing still. Initiatives range from incremental improvements to substantial system change, such as in survivorship care. Health authorities are also trying to better meet the needs of under-served parts of the population. These include, in particular, the Aboriginal and Torres Strait Islander peoples, as well as rural residents. Hopefully, this range of ongoing change will allow breast cancer mortality in the country to drop even further. n

The main challenge is once again co-ordination — this time of sometimes fragmented services. Substantial efforts are being taken to achieve this. Cancer Australia has set out an optimal care pathway for breast cancer to help improve co-ordination across the continuum of care. A small number of major integrated cancer centres — one-stop cancer shops covering everything from research to survivor care — either now exist or are being built with national Department of Health money. The national government is also creating a number of rural and regional cancer centres across the country. There are also a growing number of specialist nurses trained in helping co-ordinate patient care pathways, says Ms Crossing. Such integrated services, though, are yet to cover all patients. “Co-ordination is still a big issue,” she says.

Australia has also been a leader in providing post-treatment survivor support, with extensive physical and psychological care. This is still, as in much of the developed world, a relatively new area. Ongoing research in Australia is only beginning to wrestle with some basic areas, such as the true nature of survivor diets, the extent to which education about exercise really does affect outcomes or even whether survivorship care plans actually work.83 More generally, the government is looking at whether current survivor care, largely provided by oncologists, is appropriate for the growing number of women who need long-term monitoring and treatment. “We think we can do better,” says Dr Zorbas. Accordingly, Cancer Australia has trialled a new model in which oncologists and GPs

83 J. L. Potter et al., “Diet quality of Australian breast cancer survivors: a cross-sectional analysis from the Australian Longitudinal Study on Women’s Health”, Journal of Nutrition and Dietetics, 2014; Elizabeth Dyke and Sharon Kilbreath, “Current rehabilitation processes do not prevent long-term impairments after treatment for breast cancer in Australia”, Australian Family Physician, 2015; M E Brennan et al., “Survivorship care plans in cancer: a systematic review of care plan outcomes”, British Journal of Cancer, 2014.

84 Cancer Australia, “Shared follow-up care”, 2015, http://canceraustralia.gov.au/affected-cancer/cancer-types/breast-cancer/life-after-breast-cancer/shared-follow-care.



Beyond the headline numbers is less optimism. The best academic research, says Dr Fan, indicates “that the rate is rising quickly.” How much is difficult to say because data quality is a major issue. Information before 2008 is patchy at best because so few cancer registries then existed, and only in 2015 did the government make it mandatory for hospitals to report cancer cases. Between 2008 and 2014, though, the number of registries rose from 43 to 308, and the government intends to open enough to cover all of China within a few years. Despite this progress, only 22% of the population is covered and teething problems exist: to get their 2011 figure,

incidence China appears to be in the calm eye of a breast cancer storm of uncertain, but likely large, magnitude. Currently, notes Dr Fan Zhaoqing — associate professor at the Breast Centre of Peking University Cancer Hospital — the country’s “incidence of breast cancer, on a global scale, is certainly not very high.” Globocan estimates an age-standardised incidence rate of 22.1 per 100,000 for 2012 — the lowest for any country in this study. An analysis by researchers at the National Cancer Centre Registry (NCCR) instead puts the 2011 figure at 26.1, proportionately much greater but still only ninth among the ten countries considered here.85

85 Manman Jia et al., “Female breast cancer incidence and mortality in 2011, China”, Journal of Thoracic Disease, 2015.

cHina

KeY Data

General

Population in millions (2015) 1,361 China National Bureau of Statistics, and EIU calculationsGDP (PPP) per capita (2015) $14,550 EIU estimateDoctors per 1,000 population (2015) 1.98 WDITotal healthcare spending per capita (2015) $460 WHO


Age-standardised Incidence Rate per 100,000 (2012) 22.1 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 5.4 GlobocanMortality to Incidence Ratio 0.24 EIU calculationFive-year relative survival (2003/5-2010) 73% Hongmei Zeng et al., “Cancer survival

in China, 2003–2005: A population-based study”, International Journal of Cancer, 2015



Higher incidence would not be surprising given smaller families and other lifestyle changes. Other data suggest that, as in other Asian countries, the breast cancer situation is evolving toward one more closely resembling that in the West. Between 1999 and 2008 the median age at diagnosis rose from 45 to 49.90 A cohort effect is also apparent in the incidence figures, suggesting that younger women will, in their lifetimes, experience more breast cancer than older ones.91 It is hard to disagree with one study’s conclusion that “China is on the cusp of a breast cancer epidemic.”92 It is the extent of the epidemic that remains unclear.

Another notable characteristic of breast cancer in China is a marked divergence between rural and urban areas. Not only is incidence about 50% higher in the latter, the age-pattern of incidence differs in a way that partially parallels the gap between Asian and Western countries. As the attached chart shows, in the countryside the pattern is more

the NCCR researchers excluded about one- quarter of potentially available registries due to quality issues.86 In short, figures for years after 2009 are probably reasonable estimates; those from earlier years involve more guesswork.

From 2009 to 2011, the NCCR estimates show no real change in ASR incidence.87 This is too short a time to draw conclusions, though, and the statistics from before 2009, however problematic, certainly give the impression of marked growth. An analysis by Chinese government and IARC officials of what registry data did exist in 2000 put the ASR for breast cancer at 19.9 per 100,000.88 Registry data also indicate that, in urban China at least, incidence has been rising more rapidly than in the world overall. Between 1993-97 and 2003-07 in Beijing, for example, the ASR rose from 24.6 per 100,000 to 35.5, and in Shanghai from 27.2 to 39.2.89

86 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.87 Hongmei Zeng et al., “Incidence and mortality of female breast cancer in China, 2009, Thoracic Cancer, 2013; Hongmei Zeng et al., “Female breast cancer statistics of 2010 in China:

estimates based on data from 145 population-based cancer registries”, Journal of Thoracic Disease, 2014; Jia et al., 2015.88 Ling Yang et al., “Estimates of Cancer Incidence in China for 2000 and Projections for 2005”, Cancer Epidemiology, Biomarkers & Prevention, 2005.89 Lei Fan et al., “Breast cancer in a transitional society over 18 years: trends and present status in Shanghai, China”, Breast Cancer Research and Treatment, 2009; IARC, CI5 Plus: Cancer

Incidence in Five Continents Time Trends, online database.90 Qing-Kun Song et al., “Age of Diagnosis of Breast Cancer in China: Almost 10 Years Earlier than in the US and the European Union”, Asian Pacific Journal of Cancer Prevention, 2014.91 Lei Fan et al., “Breast cancer in China”, The Lancet, 2014. 92 Eleni Linos et al., “Effects of Reproductive and Demographic Changes on Breast Cancer Incidence in China: A Modeling Analysis”, Journal of the National Cancer Institute, 2008.

0 5 10 15 20 25 30 35 40 45 50 55 60 65 70 75 80 85

Age group (years)

120

100

80

60

40

20

0

Inci

denc

e (1

/100

,000

) All areas Urban females Rural areas

age-specific incidence rates of female cancer in 2011, china



other countries for even such a rough measure of survival, given the issues China has with cancer control overall. In particular, in this study Singapore, a country with qualitatively better breast cancer control, has the same ratio as China. The latter’s MR:IR figure is also inconsistent with its five-year survival rates. In Singapore this is just under 80%.98 The latest figure for China is 73%, although that relied on registries from the eastern part of the country, where the number of cases is higher but the care available is likely to be better.99

The problem may be the mortality data. Despite improvements to the collection of incidence information, the registries rely on the country’s death statistics system, which Globocan describes as incomplete. Mortality rates may well be under-estimated and, given the magnitude of the numbers involved, even a small increase would raise the MR:IR ratio quickly.

However well or poorly China is coping with its current breast cancer load, a number of weaknesses suggest that a substantial increase in incidence will be very difficult to address without extensive and swift action.

awareness The problems begin with knowledge. A survey of urban and rural women from eastern China found that 81.4% had a poor awareness of breast cancer, and fewer than half knew that a breast lump was a potential symptom of the

like that of less developed states, while the urban one, with incidence peaking higher and older women more affected, is more akin to a country in transition toward Western levels.93 Traditional lifestyles have, as in many countries, endured longer in rural areas. Perhaps more importantly, the one-child policy was often a two-child policy in the countryside and was also less strictly enforced there than in cities. Looking ahead, though, the differences in incidence appear to be diminishing as rates increase faster in rural areas.94

Mortality figures have the same data issues as incidence ones, and tell a similar story. By global standards mortality from breast cancer is low: the 2012 ASR, according to Globocan, is 5.4 per 100,000 — the smallest of any country in this study; the NCCR puts it slightly higher at 6.4 for 2011, which would put it second lowest, behind South Korea.95 Again, figures from 2009 to 2011 show no pattern, but previous data indicate a significant rise over the years, in particular recently: one study estimated the ASR in the mid-1970s at 2.9 per 100,000 and in 2004-2005 at 4.0.96 A difference between urban and rural areas is also apparent, but much less of one than for incidence: in 2011, the ASR in cities was 6.8 per 100,000, and in the countryside 6.0. This likely reflects the much poorer healthcare provision existing in the latter.97

One surprising feature of the data is how low the mortality figures are given the incidence. The MR:IR ratio for the Globocan figures is 0.24, almost identical to that from the registry (0.25). This is hard to square with results for

93 Jia et al., 2015.94 Fei Wang and Zhi-Gang Yu, “Current status of breast cancer prevention in China”, Chronic Diseases and Translational Medicine, 2015.95 Jia et al., 2015.96 Ying Zheng, “Status and trends of breast cancer mortality in Chinese females”, [Article in Chinese], Chinese Journal of Preventative Medicine, 2011.97 Jia et al., 2015.98 Singapore Cancer Registry, Cancer Survival in Singapore 1973-2012, [2015]99 Hongmei Zeng et al., “Cancer survival in China, 2003–2005: A population-based study”, International Journal of Cancer, 2015.100 Li-Yuan Liu et al., “Breast cancer awareness among women in Eastern China: a cross-sectional study”, BMC Public Health, 2014.



conviction. Local trial projects have occurred, but a 2005 effort to screen a million women failed completely when, despite being announced by officials with fanfare at the Great Hall of the People, no money was forthcoming.103 Since 2009, the government has slowly been rolling out the Cervical and Breast Cancer Screening Project for Rural Women Residents in selected areas, but the vast majority of this activity involves cervical cancer screening. Indeed, for some years the goal was to test only 1.2m women annually for breast cancer, using CBE initially, followed by mammograms where required. It is difficult to tell how many women the effort has actually reached, as the government releases joint figures for cervical and breast tests. If the proportion of these is the same as that planned for under the scheme, a little over 5m have had breast screens among an overall potential national target population of 142m.104

Other funders of screening exist. Dr Fan notes that some major cities began providing the service free to residents after 2009. Private screening also takes place. A 2010 survey found that 22% of Chinese women overall had been screened using some method, including CBE, at least once in their lives, although only 16% in the last two years. This activity seems to be much more common among the well-off and educated, who tend to be more concentrated in urban areas.105 These two types of provision help explain why about one-quarter of new breast cancers in Beijing and Shanghai are found through screening.106

disease.100 This helps explain the impression most experts have of a high number of late-stage presentations. Again, however, the data are problematic. The reported number of those diagnosed at stages III and IV is around 26% of those with staging data — higher than desirable, but not extreme by global standards. The difficulty is that staging information is collected from surgery units in hospitals. Individuals who present but are too advanced to receive treatment are therefore not included. Some surveys put the real level of late presentations at over half.101

Screening cannot fill the gap caused by poor awareness because no national breast cancer screening programme exists. There are several reasons screening will likely fall short: the population is large and incidence low; cost-effectiveness studies show that screening is expensive in the Chinese context; and there is an insufficient number of mammography machines for a national programme.102 Dr Fan notes that “It’s not realistic to imagine that China could implement a country-wide mammogram testing system.” Indeed, typically those being checked for breast cancer in China first undergo a clinical breast examination and then receive ultrasound or mammography only if something suspicious is found.

screening Despite these barriers, the government has tried to institute screening, but with little

101 Priya Sivasubramaniam, “Breast Cancer Disparities: A Multicenter Comparison of Tumor Diagnosis, Characteristics, and Surgical Treatment in China and the US”, The Oncologist, 2015; Lei Fan et al., 2014.

102 Wang and Yu, 2015. 103 Li Hujun, “The Plight of China’s Breast Cancer Screening Program”, China Today, 2009. 104 Projected annual screening targets were 10m for cervical cancer and 1.2m for breast cancer (Huang Juan, “Rural Cervical and Breast Cancer Screening Project”, 2009, All China Women’s

Federation web page, http://www.womenofchina.cn/womenofchina/html1/projects/ project/10/2404-1.htm). The government announced that a total of 48.35m tests had actually

been conducted between 2009 and end of 2014 (“China to promote free breast cancer screenings, 22 April 2015, China Daily); Le-Ni Kang and Ryou-Lin Qiao, “Cancer Screening and Prevention in China”, Cancer Control, 2014.

105 Baohua Wang et al., “Breast Cancer Screening Among Adult Women in China, 2010”, Preventing Chronic Disease, 2013. 106 GE Healthcare, “Data Viz: Awareness, Affordability and Access to Breast Care in Developing Countries”, February 2013, http://newsroom.gehealthcare.com/data-viz-awareness-

affordability-and-access-to-breast-care-in-developi/.



is on physical ailments, such as post-surgery edema, and that patients rarely attend even the few clinics available to address survivors’ psychological needs. “Most people don’t understand what this has to do with recovery. This is an area which needs improvement,” he adds. Nor is information readily to hand: a corporate initiative launched in 2015 to help fill the gap was, according to state-run China Daily, the country’s “first educational program tailored for breast cancer patients and survivors.”111

Similarly, palliative care is “an unnoticed area,” says Dr Fan, and social taboos impede discussion of end-of-life issues. The low quality and availability of such care account for China coming 73rd out of 80 countries in The EIU 2015 Quality of Death Index, and last among the countries covered in this study.

China has a very low breast cancer burden at the moment compared to other countries. It is, however, growing. If it does so to the extent seen in Asian neighbours, breast cancer control in the country will need serious re-enforcement to address it. n

treatment and care Once diagnosed, the quality of care is highly variable. At some of the country’s 30 specialist cancer hospitals, integrated care with multi-disciplinary teams exists and these institutions “try to adhere to western standards,” says Dr Fan. Markedly higher survival figures in urban areas 107 where these hospitals are based indicate a certain level of success, but Dr Fan adds that “There’s still a lot of room for improvement.” For example, despite breast conserving surgery, where possible, being guideline-recommended since the 1990s, even in major cities a majority of breast cancer operations are mastectomies.108

The few big cancer centres can fill only a small part of the need, and other facilities are poor. Hence specialist hospitals are swamped and waiting times long. Meanwhile, although some form of medical insurance is now nearly universal, co-payments can put the annual out-of-pocket cost of cancer care well over US$10,000, beyond the capacity of most Chinese.109 In 2012, 12.9% of Chinese households suffered so-called catastrophic health expenditure — where care takes up more than 40% of a household’s disposable income — and breast cancer was a common cause.110

As for care after treatment, the situation is worse. Dr Fan explains that “China’s medical system is quite weak on survivorship care; we usually emphasise prevention and treatment only, and doctors lack the experience to deal with the physical and psychological needs of cancer sufferers.” He adds that most of the focus

107 Zeng et al., “Cancer survival in China, 2003–2005”, 2015.108 Fan et al., “Breast cancer in China”, 2014.109 Paul Goss et al., “Challenges to Effective Cancer Control in China, India, and Russia”, The Lancet Oncology, 2014.110 Fan et al., “Breast cancer in China”, 2014.111 “Educational program rolled out for breast cancer patients”, 20 August 2015, China Daily.



2006 and largely stayed there until 2011, when it jumped to 61.0. Such a pattern of growth is consistent with a population where a significant portion of citizens has long had a Westernised lifestyle but other demographic segments have more recently shifted from traditional modes of living. The data, however, are not available to show or disprove this conjecture.

The data do show that the cohort effect is at work in Hong Kong as it is in much of the region.112

incidence Like the territory itself, Hong Kong’s breast cancer picture blends Eastern and Western features. It now has the third highest age-standardised incidence rate in this study — 61.2 per 100,000 in 2012, according to Globocan. This figure has been increasing in recent decades. Rather than the dramatic growth seen in Singapore, South Korea or Taiwan, though, the periods of increase have been intermittent. According to Hong Kong Cancer Registry figures, in 1996 the ASR was 39.6; it reached 52.1 in

58 I Wong, “Breast cancer incidence and mortality in a transitioning Chinese population: current and future trends”, British Journal of Cancer, 2015.

HOnG KOnG

KeY Data

General

Population in millions (2015) 7.288 UN Population dataGDP (PPP) per capita (2015) $57,080 EIU calculation based on World Bank data.Doctors per 1,000 population (2015) 1.51 EspicomTotal healthcare spending per capita (2015) $2,153 Food and Health bureau, Hong Kong


Age-standardised Incidence Rate per 100,000 (2012) 61.2 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 9.5 GlobocanMortality to Incidence Ratio 0.16 EIU calculationFive-year relative survival (1996/2001-2003) 90% SC Law and OW Mang, “Cancer

survival in Hong Kong SAR, China, 1996-2001”, Chapter 5 in R. Sankaranarayanan et al., eds., Cancer survival in Africa, Asia, the Caribbean and Central America, 2011.



proportional rise in their incidence of breast cancer in recent decades. This suggests that today’s young cohorts will drive incidence higher still as they enter their own high-risk years.

To date, however, mortality rates have remained flat despite the rise in incidence. With only a few small exceptions in the early 1990s, the registry shows that the mortality ASR has moved between 9 and 10 per 100,000 since 1985 — a period in which incidence rose roughly 70%. Other data also indicate a strong performance in coping with the disease. The mortality-to-incidence ratio, 0.16, is tied with Australia’s for second best in this study, and a five-year survival rate of 90%115 is very good, even among developed countries. Looking ahead, mortality might even improve: the study noted above which predicts an increase in incidence over this decade also foresees a slight drop in mortality to 8.6 per 100,000 by the early 2020s.

The significance of Hong Kong’s success in at least containing breast cancer mortality depends on the benchmark one uses. Dr Cheung says that “We have kept it stable but it is not on a decreasing trend as in Western countries.” The government also does not think that simply keeping pace with incidence is good enough. Says Dr Ko, “In the context of an ageing population, cancer is one of the top priorities of Hong Kong, with breast cancer as the commonest cancer among women.”

In a city with high-quality cancer care, the question becomes how to reduce mortality. Earlier detection is the obvious route, but this has led to the most vigorous political debate around screening in any jurisdiction in Asia.

Recently, as younger, higher incidence cohorts have aged, the demographics of breast cancer have begun to look more like those in Western countries. The median age of diagnosis, for example, jumped two years — from 52 to 54 — between 2007 and 2012.113 Similarly, registry data show that women in their early 60s are now those with the highest risk of developing breast cancer, with incidence for this group having increased much faster than among women in their 40s and 50s.

This reflects the entry into high-risk years of the women currently 40 to 65, who came of age during the rapid social changes of the 1960s, 1970s and 1980s. Dr Polly Cheung, founder of the Hong Kong Breast Cancer Foundation, explains that, while the city was already a major trading centre, “within five decades, much of Hong Kong went from a fishing village to a cosmopolitan city.” Also consistent with a cohort effect, and another sign of likely convergence of Hong Kong’s breast cancer situation with that in the West, is the shift in biological characteristics of the disease. “We are seeing more than 75% estrogen receptor-positive breast cancers, which is similar to the Western World. In the 1960s this was around 60%, similar to India and other developing countries today,” says Dr Cheung.

Looking ahead, the steady rise in incidence is likely to continue. A recent academic analysis found that, given existing cohort and other trends, the ASR should increase by 10% between the first part of this decade and the first part of the next.114 Signs also point to continued growth further down the line. Dr Cheung notes that women under 40 have seen a marked

113 Hong Kong Cancer Registry, “Female Breast Cancer in 2012”, 2014, http://www3.ha.org.hk/cancereg/breast_2012.pdf; Hong Kong Cancer Registry, “Hong Kong Cancer Stat 2007”, 2009.

114 I Wong, 2015.115 SC Law and OW Mang, “Cancer survival in Hong Kong SAR, China, 1996-2001”, Chapter 5 in R. Sankaranarayanan et al., eds., Cancer survival in Africa, Asia, the Caribbean and Central

America, 2011.



awareness

Basic awareness and knowledge of breast cancer is far from absent but not sufficient. A majority of women understand that breast cancer is a serious disease and are able to identify certain risk factors.118 However, this knowledge is less than perfect: a lack of understanding of the significance of symptoms is a frequent cause of delayed presentation and, even among nurses, knowledge of risks is, as a 2014 study put it, “of concern.”119 Although education efforts occur, says Dr Cheung, “People are not very aware of the risk.”

A look beneath the surface reveals that the disparity between the territory’s low- and high-income groups is substantial. Dr Cheung explains that the rich are exposed to information from the West about breast cancer and act accordingly. Data from the breast cancer registry back this up. Women from wealthier parts of the city are more than twice as likely to have mammograms than those in less well-off ones. Among women who later developed breast cancer, 53% of those from the relatively high-end Wan Chai district (median monthly income $29,000) had taken part in regularly mammography; of those from Kwun Tong ($14,000) the figure is 13%.120 Although cost is a commonly cited reason for not screening,121 lack of awareness among working class women also impedes early detection. Self-delay in reporting observed symptoms is higher among labourers or non-clerical women than clerical and professional ones. 122

A lot of data currently exist to fuel such a debate. Hong Kong has had a high-quality, population-based cancer registry since 1963 which gives easy access to key figures on incidence and mortality. In 2007, the Hong Kong Breast Cancer Foundation, looking to provide a more detailed picture of the risks, treatment and impacts of the disease, established the Hong Kong Breast Cancer Registry. Data submission is voluntary, but the number of cases on which it collected details in the seven years since its creation, 13,000, is more than half of the total breast cancer cases reported by the government registry in that period.

Looking at the available data, the starting point for considering down-staging in Hong Kong is that current overall detection figures are not poor. The proportion presenting at stages III and IV, 14.6%, is comparable to figures for Canada and the United Kingdom. The big difference between the territory and most developed countries is a higher rate found at stage II than at stage I.116 Nor is screening absent: even without a population-wide programme, a 2010 survey found that 18% of women aged 40 to 59 have mammograms every two years or more, and 32% of those aged 18 to 59 have annual clinical breast examinations.117 This activity, though, has only a small population-wide effect: Dr Cheung reports that 85% of breast cancer diagnoses in Hong Kong occur after a woman finds a lump unexpectedly (not during regular self-examination). The equivalent figure in the US is less than 50%.

116 Hong Kong Breast Cancer Foundation, Hong Kong Breast Cancer Registry Report No.7, 2015; Canadian Partnership Against Cancer, Breast Cancer Control in Canada: A System Performance Special Focus Report, 2012; Cancer Research UK, “Breast Cancer Incidence Statistics”, http://www.cancerresearchuk.org/content/breast-cancer-incidence-statistics. 117 Hong Kong Breast Cancer Foundation, “Results of Breast Cancer Screening Perception & Awareness Survey 2010”, February 2011, www.hkbcf.org/download/survey_eng_2011.ppt. 118 Yuk Yee Yan, “Breast Cancer: Knowledge and Perceptions of Chinese Women in Hong Kong”, Global Journal of Health Science, 2009 119 W Lam et al., Factors influencing delayed presentation with symptomatic breast cancer in Hong Kong Chinese women”, Hong Kong Medical Journal, 2009; Janice Tsang et al., “Breast cancer prevention awareness and breast examination attitudes among Hong Kong women who work in a medical environment — A pilot study [abstract]”, Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium, 2014. 120 Hong Kong Breast Cancer Foundation, “Socioeconomic disparities in breast cancer screening practice and cancer staging in Hong Kong”, Hong Kong Breast Cancer Registry Bulletin, 2012. 121 Yuk Yee Yan, 2009 122 Hong Kong Breast Cancer Foundation, “Delay in Medical Consultation is More Common in Widows or Non-clerical/Labour Workers”, Hong Kong Breast Cancer Registry Bulletin, 2014.



more good than harm because of considerable overdiagnosis and overtreatment. This is the global screening debate encapsulated in a single place.

Now the government is looking for a middle way. In 2015 it decided to move toward screening of those at moderate to high risk, for which evidence of cost-effectiveness is stronger. “The problem,” says Dr Ko, “is that we don’t have a locally validated tool for breast cancer risk assessment.” The government has accordingly commissioned research from the University of Hong Kong which, he hopes, will “in two or three years come up with a model for prediction of breast cancer risk for the individual so as to guide evidence-based practice in mammography screening in Hong Kong.” If so, this might provide a viable route out of the screening wars for other countries considering the technology.

treatment and care If the battle over screening in the territory has been so intense, it is in part because other elements of breast cancer control are fairly strong. Dr Ko recalls that, about a decade ago, cancer care could be fragmented. Since then, it has been greatly reorganised. The Hospital Authority (HA) — which oversees the city’s public healthcare provision — has built six specialist oncology centres within hospitals and, with a seventh due to be completed soon, these facilities will cover the entire population. They now provide integrated, multi-disciplinary care

screening

Screening is, of course, not the complete solution. Dr Ko says that, “In fighting breast cancer, we must go back to basics, and that includes prevention.” Accordingly, the government, in co-operation with NGOs, is actively involved in education, especially around breast awareness, the importance of healthy diet, exercise and breastfeeding, as well as the cancer risks of alcohol. Nevertheless, he adds, “If we want to detect earlier stage cancers, then screening may come into play.” Dr Cheung goes further, saying screening is essential, but believes that the controversy is impeding education itself. “Attitudes in the population are not developing in a healthy way because of the whole atmosphere from the debate about screening,” she says.

The problem is how to screen. Many public health experts in Hong Kong have long argued for efficacy, necessity and cost-effectiveness of population-based mammography in a territory such as theirs. Says Dr Cheung, “For a region as wealthy as Hong Kong, not to have screening at all is strange,” she adds. The government, on the other hand, has been reluctant to introduce the measure for all women at average risk, says Dr Ko, not because of inertia but for lack of evidence that it brings more benefit than harm on balance. “The major problem,” he says, “is to what extent we should rely on mammography screening to reduce mortality.” He points to substantial scientific research, including the latest Cochrane evidence review, showing that it is unclear whether mammography screening does



this assistance but not enough to afford the drugs. Various NGO initiatives exist to help some individuals, but the regular appearance of media articles describing the financial distress of those in this situation suggest an ongoing problem.

Survivor care, both physical and psychological, is now provided by the integrated oncology centres. Although again the quality is solid, it is still not fully successful. In a recent survey of breast cancer survivors, 84% reported that they had some form of ongoing healthcare information need related to the disease, and five distinct information deficits affected a majority.125

Similarly, cancer centres also integrate palliative care into their offerings, and now clinical oncology and palliative medicine is a recognised co-speciality.126 A general palliative care policy is also in place. The 2015 EIU Quality of Death Index, however, found that Hong Kong — compared to other jurisdictions — still has a very low number of beds for the potential need. Accordingly, of the ten countries in this study, it finishes sixth, and last among those with higher GDPs.

Hong Kong has long been doing well in battling its rising tide of breast cancer, and has markedly improved co-ordination of treatment, survivor and palliative care provision through creation of oncology centres. Its screening debate, however, has been the most high-profile part of breast cancer control in recent years. How well government research is able to square that circle will shape how successful the city will be in reducing mortality. n

for all cancers. These are also increasingly using case managers — normally specialist nurses — to help patients navigate their care routes. Dr Cheung, who led the first multidisciplinary care team in Hong Kong in 2003, notes that “clinicians are in the forefront of treatment advances.”

If there are problems, they revolve around resources and social class. Healthcare in Hong Kong is divided between very high-quality private providers — which include a minority of hospitals but a majority of doctors — and the public one under the HA which provides 88% of care.123 Patients in HA facilities experience substantially greater delays than those with private provision due frequently to lower manpower: the median delay in care beginning after consulting a doctor at a private hospital is 11 days, but in a public one it is 49. Public hospitals are also about half as likely as private ones to conduct breast conserving surgery rather than mastectomies (34% to 67%) even though the staging figures are very similar.124

Nonetheless, the quality of care is still good. The major economic difficulty is that, while treatment and ordinary chemotherapy are available for a nominal charge, advanced breast cancer drugs are not. These are affordable to those with private insurance or high incomes. The government’s Samaritan Fund, meanwhile, provides assistance for low-income cancer patients, among others, in need of expensive drugs not covered by the health system. This does not help Hong Kong’s so-called “sandwich class,” who make too much money to qualify for

123 EIU, Hong Kong Health Care Report, 4th Quarter 2015. 124 Hong Kong Breast Cancer Foundation, “Delay in Medical Consultation is More Common in Widows or Non-clerical/Labour Workers, 2014; TK Yau, et al., “Delayed presentation of

symptomatic breast cancers in Hong Kong: experience in a public cancer centre”, Hong Kong Medical Journal, 2010.125 Winnie So, “Quality of life and most prevalent unmet needs of Chinese breast cancer survivors at one year after cancer treatment”, European Journal of Oncology Nursing, 2014.126 Rebecca Yeung, “Clinical oncology and palliative medicine as a combined specialty—a unique model in Hong Kong,” Annals of Palliative Medicine¸2015.



incidence of 22% between 1997 and 2007.129 Nor is there any reason to expect the rise to cease. Dr Mohandas Mallath, senior consultant at the Tata Medical Centre in Kolkata, notes that “Even now, only 30% of adult women are in paid employment. As more start going to college and working, they will get married later, they will have fewer children [they will do] less breast feeding, they will have more body fat, and reduced physical activity — these common risk factors will increase.” Indeed, the pace may even be accelerating: the best estimate in 2009 for total incidence by 2020 was 123,600130 — well below the figure the country has already reached.

incidence One of the rare bright spots around breast cancer in India is its relatively low incidence: the age-standardised rate, 25.8 per 100,000 in 2012, is still well below the global average of 43.3.127 The disease nevertheless represents a substantial problem. With around 145,000 new cases per year, it is the most common cancer among women and is a particular problem in urban areas, with age-adjusted incidence roughly three times higher in metropolitan cancer registries than in rural ones.128

It is also a growing problem. Combined data from three registries used in the Cancer in Five Continents studies shows an increase in

127 J Ferlay et al., Globocan, 2013128 RT Nagrani et al., “Rural urban differences in breast cancer in India”, International Journal of Cancer, 2014.129 CI5Plus: Cancer Incidence in Five Continents Time Trends database http://ci5.iarc.fr/CI5plus/Pages/online.aspx130 Indian Council of Medical Research, Time Trends in Cancer Incidence Rates 1982-2005, 2009.

inDia

KeY Data

General

Population in millions (2015) 1,311 UN Population dataGDP (PPP) per capita (2015) $6,130 EIU calculationDoctors per 1,000 population (2015) 0.75 OECDTotal healthcare spending per capita (2015) $67 WHO


Age-standardised Incidence Rate per 100,000 (2012) 25.8 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 12.7 GlobocanMortality to Incidence Ratio 0.49 EIU calculationFive-year relative survival (1990/2001-2003) 52% Rengaswamy Sankaranarayanan

et al., “Cancer survival in Africa, Asia, and Central America: a population-based study”, The Lancet, 2010.



improvement over the last decade or so, but is still far too high. Moreover, the gains, he says, are not due to better public health efforts but the expansion of private and corporate healthcare services.

Down-staging is essential. Even getting more women to react to clear symptoms could have a substantial effect: one Indian study found that the average time between finding a lump and consulting a doctor is over 10 months.136 The biggest barriers to earlier presentation, says Dr Mallath, are the intertwined problems of health illiteracy, poverty, and fear.

awareness The first step in overcoming these is addressing what Dr Kaul describes as the “complete lack of education, particularly but not solely in rural areas,” about breast cancer. One recent literature review found a consistent “low... literacy of breast cancer risk factors among Indian women, irrespective of their socio-economic and educational background. There is an urgent need for nation- and state-wide awareness programmes.” Worse still, poor understanding even extended to some medical professionals and has shown no sign of decreasing over the previous eight years.137

Information alone will not be enough. As discussed earlier in this study, cultural beliefs and stigma can be substantial barriers to seeking care. Moreover, any effort has to take into account existing circumstances. “If literacy

Unfortunately, India is ill-prepared to address even its current breast cancer burden. Despite having far lower incidence than the world average, its age-standardised mortality figure, 12.7 per 100,000, differs only slightly from the global mean (12.9).131 Although the numbers are nearly a decade old, the most recent five-year survival rate for India is 52%, although it varies depending on location.132 The problem is worse outside the cities. Although the incidence is far lower in rural areas, mortality rates are roughly the same as in cities. Indeed, while higher incidence points to breast cancer as an urban problem, India’s large rural population means that more than twice as many women in total die from the disease in rural areas than in cities.133

The reasons for India’s high breast cancer mortality are multi-faceted but can be summed up by Dr Mallath’s words: “There are more weaknesses than strengths” in breast cancer control.

One of the strengths is India’s cancer registry programme which, although covering only 7% of the population and skewed heavily toward northern and urban areas, is generally considered by experts to provide the big picture reasonably well.134

Other aspects of the breast cancer situation are much less positive. Late presentation is a major factor. Figures vary, but studies indicate that overall, more than half of women present at stage III or IV.135 Dr Sameer Kaul, consultant in surgical oncology at the Apollo Cancer Institute in New Delhi, notes that this represents a small

131 J Ferlay et al., Globocan, 2013132 Rengaswamy Sankaranarayanan et al., “Cancer survival in Africa, Asia, and Central America: a population-based study”, The Lancet, 2010.133 Rajesh Dikshit, “Cancer mortality in India: a nationally representative survey”, The Lancet, 2012.134 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.135 Paul Goss et al., “Challenges to Effective Cancer Control in China, India, and Russia”, The Lancet, 2014.136 Sedigheh Pakseresht et al., “Stage at Diagnosis and Delay in Seeking Medical Care Among Women With Breast Cancer, Delhi, India”, Iran Red Crescent Medical Journal, 2014.137 A Gupta et al., “A review of breast cancer awareness among women in India: Cancer literate or awareness deficit?” European Journal of Cancer, 2015.



breast cancer has seen modest improvement in recent years. The government is trying to beef up cancer care in general, and has committed to supporting, in co-operation with willing state governments, the creation of 70 new tertiary centres in existing medical facilities. At the same time over 50 existing regional and district cancer centres have formed a National Cancer Grid to exchange expertise and develop standardised best practice across the country. 141

Nevertheless, overall the breast cancer care picture remains bleak. A lack of qualified doctors of any kind can delay diagnosis — by about two months on average after visiting a registered or unregistered care provider, one study found.142 Similarly, a substantial number of people who reach high-quality cancer centres have already had breast operations which were either the result of misdiagnosis or were unsuccessful.143 Expert care itself is rare — India has one oncologist for every 16,000 cancer patients.144 Equipment is also scarce: the country has only 41% of the radiotherapy machines it needs, which helps explain why only an estimated 20% of breast cancer patients are offered post-mastectomy radiation.145 Many simply cannot afford treatment, with choice of therapy frequently dictated by ability to pay. Even in public hospitals — which provide some means-tested free or low-cost care — the overall costs involved in attending treatment, taking tests and purchasing

among women is low, they will have little knowledge of breast cancer and the Internet won’t help,” explains Dr Mallath. Without some progress on education, however, nothing will change.

screening The costs of mammography are too great for a population-wide effort in the country. Long-term studies are taking place on the utility of clinical breast examination.138 Although some early results are promising, follow-up is a concern. In one major trial, fewer than half of women referred for follow-up went on for further tests.139 Of even greater concern is that even opportunistic screening of high-risk individuals is rare: less than 1% of Indian women aged 40 to 69 have a screen every two years.140 The problem, notes Dr Kaul, is that the country simply has “no strategy, nor any efforts, when it comes to finding early breast cancer.”

treatment and care In looking at Indian breast cancer treatment, generalisations require a caveat. “We have a completely disorganised, non-homogenous system,” says Dr Kaul. “There could be excellent facilities in one part of a state or city that are completely unavailable elsewhere.” High-quality, effective care is certainly available, and indeed Dr Kaul notes that treatment of localised

138 Rengaswamy Sankaranarayanan “Clinical breast examination: preliminary results from a cluster randomized controlled trial in India,” Journal of the National Cancer Institute, 2011.139 Indraneel Mittra et al., “A cluster randomised, controlled trial of breast and cervix cancer screening in Mumbai, India: methodology and interim results after three rounds of screening”,

International Journal of Cancer, 2010; Kirstin Grosse Frie et al., “Determinants of Participation in a Breast Cancer Screening Trial in Trivandrum District, India”, Asian Pacific Journal of Cancer Prevention and Control, 2013.

140 EY, “Call for Action: Expanding cancer care in India”, 2015. 141 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015. 142 Chintamani et al., “Patient and provider delays in breast cancer patients attending a tertiary care centre: a prospective study”, JRSM Short Reports, 2011. 143 Gaurav Agarwal and Pooja Ramakant, “Breast Cancer Care in India: The Current Scenario and the Challenges for the Future”, Breast Care, 2008. 144 Goss et al., 2014. 145 Ajeet Gandhi and Goura Rath, “National Cancer Control and Registration Program in India”, Indian Journal of Medical and Paediatric Oncology, 2014; Rashmi Bawa, “Breast Cancer in

India: Current trends and Challenges”, International Journal of Medical Research Professionals, 2015.



medication create financial difficulties for three-quarters of patients. Failure to continue treatment because of cost is common.146

Even with the country’s limited resources, both Dr Mallath and Dr Kaul believe it need not be this way. The former explains, for example, that most generic medications are affordable. “We have to focus on encouraging colleagues to manage patients more comprehensively based on evidence.” Dr Kaul goes further: “Everything is available for breast cancer care here, but there is a lack of planning, implementation and strategy.”

Post-treatment services are nearly non-existent. For those who have been successfully treated, says Dr Kaul, “rehabilitation is completely lacking” because of an excessively narrow focus on “active treatment of full blown cancers in our hospitals.” For those less fortunate, palliative care is also largely unavailable, with around 95% of those needing it not having any access.147 The notable exception to this picture is Kerala state, where the palliative care programme has become a noted case study for how to provide this service in low- or middle-income countries.

It is hard to disagree with Dr Kaul’s conclusion about breast cancer in India: “Has this become a major public issue, or got the attention it deserves? So far the answer is no.” Unless it does, the country’s growing incidence will have unnecessarily deadly consequences. n

146 Bawa, 2015; Kesavan Sreekantan Nair et al., “Cost of Treatment for Cancer: Experiences of Patients in Public Hospitals in India”, Asian Pacific Journal of Cancer Prevention, 2013; Priya Shetty, “India faces growing breast cancer epidemic”, The Lancet, 2012.

147 Suresh Kumar, “Models of Delivering Palliative and End-of-life Care in India”, Current Opinion in Supportive and Palliative Care, 2013; “Palliative Care is in Need of a Lifeline”, The Times of India, 3 March 2014.



mandatory.” Registries are the responsibility of Japan’s 47 prefectures. Before 2006, coverage was spotty because few prefectures had registries. The situation began to improve after passage that year of the country’s Cancer Control Act, which had provisions encouraging them. All prefectures now have a registry and, just as importantly, from 2016 reporting of breast cancer cases to these institutions will be mandatory.148

These improvements will help in future, but tracing out historical trends is difficult because the coming on line of many new registries over the last decade and a greater emphasis on reporting incidence — even if it was not yet mandatory — means part of any increase in

incidence Japan has a substantial breast cancer burden by Asian standards, but the exact size is surprisingly unclear for a country at its level of economic development. Globocan estimates the 2012 incidence ASR as 51.5, which gives it the lightest burden among the wealthy countries in this study but a much heavier one than emerging economies.

The actual figure, though, may well differ markedly. Dr Motoki Iwasaki, chief of the epidemiology division at the Centre for Public Health Sciences in Japan’s National Cancer Centre (NCC), explains that the country to date has had “no nationwide systematic or standardised way of registering the number of new cases, and registration itself is not

148 T Matsuda and T Sobue, “Recent trends in population-based cancer registries in Japan: The Act on Promotion of Cancer Registries and drastic changes in the historical registry,” International Journal of Clinical Oncology, 2015.

JaPan

KeY Data

General

Population in millions (2015) 126.6 UN Population dataGDP (PPP) per capita (2015) $37,290 Cabinet Office, Japan; OECD;

Ministry of Internal Affairs and Communications, Japan

Doctors per 1,000 population (2015) 2.21 EspicomTotal healthcare spending per capita (2015) $3,362 WHO

Female Breast cancer Age-standardised Incidence Rate per 100,000 (2012) 51.5 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 9.8 GlobocanMortality to Incidence Ratio 0.19 EIU calculationFive-year relative survival (2003/5-[2010]) 89.1% Japan Cancer Information Service



sets, has reached 60, roughly the same as the figure in the US.

Mortality figures are more accurate, drawing on the country’s high-quality vital statistics registry. Here the Globocan figure is higher than the national one. The former is a mortality ASR of 9.8 per 100,000 in 2012. The latter is 8.9 which, after a steady rise lasting several decades, has been largely stable since 2006. The plateauing mortality ASR indicates some success in addressing the country’s increasing breast cancer burden, as does the most recent five-year survival figure of 89% (up from 84% in the mid-1990s), and a reduction in overall mortality rates for women aged under 50. Unfortunately, mortality rates are increasing for women over 60, who represented over half of total cases in 2011 and are seeing the most rapid increase in incidence.

The defining feature of cancer care in Japan is its medical treatment, particularly surgery. Despite its high survival rate, the country has some clear weaknesses in other parts of breast cancer control. It has, however, been addressing these, some with success, in recent years.

awareness Very late presentation is not a substantial problem in Japan — fewer than 10% of patients are diagnosed at stage III or IV. Of those for whom such information is available, about 35% are stage II — not outside developed-world norms but leaving some room for down-staging.151

incidence is really the result of improved data collection rather than the disease becoming more common. In the past, notes Dr Iwasaki, Japanese incidence figures have relied largely on the combined data of Japan’s three best prefectural registries. These saw a steady rise in incidence between 1990 and 2005, with the ASR rising from 27.8 per 100,000 to 43.1.149 Five years later, with figures probably made more accurate by the higher emphasis put on reporting the disease, the ASR was 57.3. More sobering are the best estimates for overall national figures, which the NCC has tried to produce for slightly over a decade. These have seen noticeable swings in reported incidence as an ever-growing number of registries have come on line. But by 2011 the estimate put the ASR incidence at 63.6 per 100,000 — roughly the same as the Globocan figures for Singapore, Hong Kong, and Taiwan.

In short, as Dr Iwasaki explains, where good comparable figures over time exist, “the incidence rate for breast cancer is going up.” The actual extent of the disease, in age-standardised terms, may well now be higher than common international estimates. Moreover, as elsewhere, population ageing means that the total number of cases is increasing even faster. In Japan, the issue is particularly acute, as it is currently has the oldest population on earth.

The data also seem to show other similarities to the growth of breast cancer incidence in much of Asia. A cohort effect has been visible for some time.150 Meanwhile, the median age at diagnosis, in both the NCC’s national and three registry data

149 Japanese registry data cited here are from the National Cancer Centre’s Cancer Information Service, in relevant incidence, mortality and survival spreadsheets available at: http://ganjoho.jp/en/professional/statistics/table_download.html.

150 Y Minami, “The increase of female breast cancer incidence in Japan: emergence of birth cohort effect”, International Journal of Cancer, 2004.151 Reiki Nishimura, “Trend of breast cancer diagnosis and treatment from breast cancer registration in Japan”, presentation to Global Breast Cancer Conference, 2011, http://www.gbcc.

kr/03scie/8-Oct/04_Symposium_13/SP13-2.%20Symposium_XIII_Nishimura.pdf.



Clearly, most Japanese women with breast cancer present early, but it seems to be despite levels of popular knowledge and awareness rather than because of them.

screening Japan’s experience of screening is also equivocal. It has a long policy history. As early as 1987, Japanese guidelines endorsed the use of clinical breast examinations (CBE) for screening of women over 30. By 2000 they began instead promoting mammography every two years for women over 50. In 2004 this was extended to women 40 or older. In 2007, as part of a five-year Basic Plan for Cancer Control Promotion, the health ministry set a formal goal of screening 50% of the target population.158

The actual figure has never come close to this, although in recent years it has begun to rise substantially. The participation rate stayed below 25% through much of the last decade. According to data from the latest National Livelihood Survey, it rose between 2007 and 2013 from 25% to 35%.159 This presumably resulted from the elimination of out-of-pocket costs in 2009, the only major change in the programme. In addition to the still relatively low screening rate, another concern is that roughly twice the proportion of women aged 40-54 are screened than women over 65. As noted above, the latter are seeing a much bigger increase in incidence.160

Progress here, though, is impeded by surprisingly low — given the above staging data — breast cancer awareness compared to many developed countries. A 10-country survey of adults in 2014 found that Japanese people (of both sexes) were the least confident in their ability to name symptoms of breast cancer, perhaps with good reason: only 54% of adults knew that a lump in the breast was a symptom of the disease, fewer than in any other country.152 Similarly, in another study, knowledge of the link between lack of exercise and breast cancer risk was poorly appreciated by Japanese women.153

Worse still, stigma for cancer in general remains a problem in the country, with job losses or reduced salaries among survivors common.154 Breast cancer survivors also speak of the still frequent reluctance of Japanese women to discuss or admit they have the disease.155 This happens in other states, but in a 2013 interview a Union for International Cancer Control spokeswoman characterised Japan as a country “where stigma is such a big issue that it is very hard to communicate about [cancer] prevention or myths. People don’t have access to the information.”156

Nor, despite having been among the most economically developed countries in the world for many decades, has outright superstition disappeared completely. In Okinawa, one of the poorer and more rural prefectures, 9% of women who died from breast cancer between 2009 and 2012 relied solely on traditional medicine.157

152 GE Healthcare and MillwardBrown, “The value of knowing — Oncology”, 2014, http://newsroom.gehealthcare.com/wp-content/uploads/2014/10/VoK-Dense-Breast-Study-Millward-Brown-GE-Proposed_100114.pdf; GE press prelease, “GE Healthcare breast cancer 10-country awareness survey”, October 2014.

153 Rina Miyawaki et al., “Awareness and correlates of the role of physical activity in breast cancer prevention among Japanese women: results from an internet-based cross-sectional survey”, BMC Women’s Health, 2013.

154 “Cancer survivors tell of workplace prejudice”, Japan Times, 12 May 2012.155 See, for example, “Breast cancer: Low screening has rates on the rise in Japan”, Japan Today, 31 October 2015.156 “Stigma: Breaking the vicious cycle”, Cancer World, 2013.157 Kentaro Tamaki et al., “Can We Improve Breast Cancer Mortality in Okinawa?: Consensus of the 7th Okinawa Breast Oncology Meeting”, Tojoku Journal of Experimental Medicine, 2015.158 Koji Ohnuki et al., “Asia Cost-effectiveness analysis of screening modalities for breast cancer in Japan with special reference to women aged 40–49 years,” Cancer Science, 2006; Ministry

of Health, Labour and Welfare, Basic Plan for Cancer Control Promotion, 2007 [In Japanese], http://www.mhlw.go.jp/shingi/2007/06/dl/s0615-1a.pdf159 “2013 Overview of the National Livelihood Survey,” 2015 [In Japanese] http://www.mhlw.go.jp/toukei/saikin/hw/k-tyosa/k-tyosa13/; Kumiko Saika and Tomotaka Sobue, “Time Trends

in Breast Cancer Screening Rates in the OECD Countries,” Japanese Journal of Clinical Oncology, 2011. 160 Ken Uchida et al., “Breast cancer screening and the changing population pyramid of Japan”, Breast Cancer, 2015.



treatment and care A parallel difference between formal intentions and results on the ground also occurs in breast cancer treatment, but here the health ministry appears more active in addressing it. Treatment achieves very good results, and surgery is among the most advanced available anywhere. Already in the early part of last decade, for example, breast conserving surgery was the most common operation for breast cancer, and complete mastectomies had become rare.163 Access is now also very good. Between 2007 and 2012, the government expanded the number of designated cancer facilities by nearly 40%, to 397, with local provision available in two-thirds of the country’s medical districts.164

The difficulty with respect to treatment is that care is surgeon-dominated rather than truly multi-disciplinary. The Basic Plan acknowledged the issue in 2007, and other studies at the time showed that the results were weaknesses in the non-surgical part of treatment. One survey of the situation in 2005 found a widespread failure to follow the St Gallen consensus recommendations — a distillation of international breast cancer best practice which at the time focussed on drug therapies used in addition to surgery — and that just 21% of patients received the appropriate radiation therapy after breast conserving surgery.165

Despite the Basic Plan’s goal of a transition to a multi-disciplinary approach, progress

The results reflect participation levels. Overall, in 2009 about a quarter of new breast diagnoses came from mass screening of asymptomatic women.161 In the US that figure is over one-half.162

A major impediment to greater uptake in Japan is complexity of delivery. Rather than a single national programme, breast cancer screening is delivered by municipalities. Says Dr Hiroshi Saito, chief of the NCC’s Screening Assessment and Management Division, “In Japan, it is very hard to grasp the accurate screening rate to begin with. There is no complete ‘list’ for those who should be screened and no systematic procedure to find people for screening or systematic way of notifying individuals that any such healthcare policy is being pursued by the government.” The system varies depending on a woman’s insurance programme, where she works or where she lives. Dr Shoichiro Tsugane, director of the NCC’s Research Centre for Cancer Prevention and Screening, adds that in some locations there seem to be rules that require different tests, such as health checks and screening for specific cancers, to be conducted by different clinicians who work in different physical locations. Cost was also an issue — most medical insurance does not cover screening — until in 2009 the government began issuing coupons to women in the target age range for free breast and cervical cancer screens.

161 Nishimura, 2011, 162 N Breen et al., “What proportion of breast cancers are detected by mammography in the United States?” Cancer Detection and Prevention, 2007.163 Youngjin Park et al., “Current status of therapy for breast cancer worldwide and in Japan”, World Journal of Clinical Oncology, 2011; Hiroji Iwata, “The Transition of Breast Cancer

Treatment and Japan Clinical Oncology Group Research Over Two Decades”, Japanese Journal of Clinical Oncology¸ 2012.164 Hiroyuki Noda and Manabu Sumi, “New Challenges in Cancer Control in Japan”, Journal of Epidemiology, 2013.165 H Mukai et al., “Quality of care for breast cancer patients in Japan: An analysis of the Japanese Breast Cancer Registry”, Journal of Clinical Oncology, 2009.166 Natsuo Tomita et al., “Japanese Structure Survey of High-precision Radiotherapy in 2012 Based on Institutional Questionnaire about the Patterns of Care”, Japanese Journal of

Clinical Oncology, 2014.



they were unsatisfied with their diagnosis and treatment, the main reasons for which were a lack of psychological support and poor information.170 Again, the government is pushing for change. Its 2012 Basic Plan noted that access to second opinions, informed consent and patient involvement in decision making is too often lacking — deficits it aims to address.

Consistent with a strong focus on surgery and treatment, survivor services have some notable weaknesses as well. Although follow-up care is the norm and accredited cancer care facilities are required to provide psychological and even social support, quality varies greatly in practice.171 Relevant specialities also need strengthening: as late at 2008, many of those providing treatment for lymphedema, a common side effect of treatment, were not medically qualified. This resulted, in part, because the teaching of medical personnel about lymphedema prevention and care was often non-existent.172 What core clinical personnel can deliver survivors is also problematic. While oncology nurses recognised the needs of long-term cancer survivors, one academic study found that “very few put … effective patient education and interventions into practice.” This is largely through lack of opportunity, because follow-up care tends to be short-term.173 Oncologists’ own recognition of patient psychosocial needs, meanwhile, is poor.174 Again, survivor care is an area identified as requiring improvement

has been slow. A lack of expert personnel to provide radiotherapy is, according to a recent report, a “major issue.”166 Similarly, another study found that a minority of cancer facilities have departments of medical oncology — the field which specialises in use of chemotherapy and drugs used in conjunction with surgery. Moreover, in over 80% of cancer facilities surgeons have primary responsibility for prescribing these drugs, as opposed to oncologists themselves. The problem is a lack of expertise. As of 2014 Japan had only 867 qualified medical oncologists.167 The government recognises the problem. Its 2012 Basic Plan for Cancer Control Promotion168 — the second five-year plan since the Cancer Control Act — acknowledges that cancer treatment remains surgery-focused and that more personnel in other oncology fields are needed.

Another problem with Japanese cancer care is a high level of paternalism. Into the early years of this century, it remained common for doctors to not share a diagnosis of cancer with the patient, because it was deemed to be too distressing — despite surveys indicating that patients wished to know the facts. The situation has progressed, so that the diagnosis is usually shared, but prognosis much less so.169 Although part of this involves clinicians attempting to work within Japanese cultural sensitivities, their general approach to patient communication leaves a substantial minority unhappy. In a 2009-10 survey, 28% of cancer patients said that

167 Yuichi Takiguchi, “Current Status of Medical Oncology in Japan—Reality Gleaned from a Questionnaire Sent to Designated Cancer Care Hospitals”, Japanese Journal of Clinical Oncology, 2014.

168 Ministry of Health, Labour and Welfare, Basic Plan for Cancer Control Promotion, 2012 [In Japanese], http://www.mhlw.go.jp/bunya/kenkou/dl/gan_keikaku02.pdf.169 Hiroaki Miyata et al., “Disclosure preferences regarding cancer diagnosis and prognosis: to tell or not to tell?” Journal of Medical Ethics, 2005; Saran Yoshida et al., “Practices and

evaluations of prognostic disclosure for Japanese cancer patients and their families from the family’s point of view,” Palliative and Support Care, 2013.170 Yoshihiko Maehara, “Current Status of Cancer Treatment in Japan, and Future Prospects for the Japan Society of Clinical Oncology”, JMAJ, 2011.171 Hiroko Komatsu and Kaori Yagasaki, “The Power of nursing: Guiding patients through a journey of uncertainty”, European Journal of Oncology Nursing¸ 2014.172 Noriko Matsui et al., “Lymphoedema in Japan: Current Issues”, Journal of Lymphoedema, 2008.173 Asako Miura et al., “Oncology nurses’ recognition of long-term cancer survivorship care in Japan”, Asia Pacific Journal of Oncology Nursing, 2015.174 Toru Okuyama et al., “Oncologists’ Recognition of Supportive Care Needs and Symptoms of Their Patients in a Breast Cancer Outpatient Consultation”, Japanese Journal of Clinical

Oncology, 2011.



in the 2012 Basic Plan as part of the creation of integrated cancer services from diagnosis to palliative care. Improvements are meant to include better psychological care and patient support teams to help with social issues such as employment.

Until recently palliative care had been relatively poor. However, the 2007 Basic Plan for Cancer Control Promotion made it a priority, and the resultant efforts — including training 30,000 medical practitioners between 2007 and 2012 in the basics of this field — have led to substantial improvements and a growing integration of palliative care with mainstream cancer care.175 Accordingly, Japan moved up from 23rd place out of 40 in The 2010 EIU Quality of Death Index to 14th out of 80 in 2015. The government is committed to further improvements, in particular creating quality assessment systems to address uneven levels of provision.

Japan’s current efforts against breast cancer have weaknesses, but these need to be seen in perspective. The country currently has very good survival results and some excellent aspects of care. The government is also aware of the weaknesses in current provision, some of which have already seen improvement. Others have been identified for effort. Success with these will help outcomes continue to be among the world’s best. n

175 Satoru Tsuneto, “Past, present, and future of palliative care in Japan”, Japanese Journal of Clinical Oncology, 2013.



Agency for Research on Cancer’s (IARC) Cancer Incidence in Five Continents studies, instead showed an increase in ASR, from 35.5 in 1998-2003 to 48 in 2004-08.177 Dr Yip explains that, demographically, Penang is likely to have a higher cancer incidence. She and most experts instead rely on the estimates found in IARC’s Globocan data when discussing Malaysia’s breast cancer burden.

These facts are worrying. Although the country is estimated to have an age-standardised incidence of the disease (38.7) slightly below the global mean (43.3), its mortality rate (18.9) is 47%

incidence The specific numbers on breast cancer in Malaysia are surprisingly hard to find given that it is recognised as the country’s leading female cancer by some margin. In 2005, the government replaced the national cancer registry with less reliable state-based registries. Even before it did so, the national figures were showing a drop in the age-standardised rate of incidence from 47.4 per 100,000 in 2003-05 to 29.1 in 2007176 which, says Professor Cheng-Har Yip of the University Tunku Abdul Rahman, a simply “is not possible.” Penang, the one Malaysian registry of sufficient quality to be included in the International

175 Malaysian Ministry of Health, National Cancer Registry Report 2007, 2011. National Cancer Registry, Cancer Incidence in Peninsular Malaysia 2003-2005, 2008.176 Penang Cancer Registry Report 2004-2008, 2010.

MaLaYsia

KeY Data

General

Population in millions (2015) 30.33 UN population dataGDP (PPP) per capita (2015) $26,910 EIU calculationDoctors per 1,000 population (2015) 0.824 EspicomTotal healthcare spending per capita (2015) $408 WHO


Age-standardised Incidence Rate per 100,000 (2012) 38.7 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 18.9 GlobocanMortality to Incidence Ratio 0.49 EIU calculationFive-year relative survival (2000/5-[2010]) 49% Nor Aini Abdullah, “Survival

Rate of Breast Cancer Patients in Malaysia: A Population-based Study”, Asian Pacific Journal of Cancer Prevention, 2013.



Dr Yip. Other research has indicated that those who suspect something is wrong fail to act because of a potent combination of fatalism, denial, superstition about causes, belief in alternative therapy, poor health literacy and a lack of independent decision making.180 Dr Somasundaram notes that, especially in the majority Malay ethnic community, “Many women like to wait for husbands or brothers to make the choice, and it is not an independent decision-making process but a community one. You are inevitably going to get delays when there are multiple inputs to decision making.”

screening The uncertainty and fear surrounding breast cancer affect not just self-presentation to qualified physicians; they also greatly impede other early detection interventions. In 2007, the government launched free mammograms for women from low-income families aged 40 to 70, but over the course of seven years only 1.5% of eligible participants took up the offer.181 The result of these factors is clearly reflected by data on cancer stage at presentation. Although figures vary by location and demographic group, most studies show between 30% and 50 % presenting at stage III or IV, as well as typically 40% to 50% at stage II.182 Dr Yip notes that in Malaysia, the attitudinal and cultural impediments to early diagnosis affect much of society: “I have even seen a midwife, who is supposed to encourage women to present with early cancer, herself present with an advanced case.”183

higher than the world figure (12.9). This is consistent with the most recent five-year survival rate — calculated based on those diagnoses between 2000 and 2005 — which is just 49%,178 comparable to that of India, a country with a GDP per capita of roughly one-quarter Malaysia’s.

Looking ahead, the picture is no more comforting. The country’s Director-General for Health has predicted “a rising and worrying trend of breast cancer incidence.”179 The reasons are those common in much of the developing world, notes Dr Saunthari Somasundaram, president of Malaysia’s National Cancer Society: a westernised lifestyle, and “a young population which has expanded tremendously and is reaching the age of elevated breast cancer risk.”

To address this growing challenge, Malaysia must find ways to solve two inter-related problems which complicate all efforts across the field of breast cancer care: a poor understanding and widespread popular misconceptions about the disease and — despite some institutions providing good care — generally poor access to timely, adequate treatment.

awareness

It is hard to overstate the problem of low awareness. Extensive education efforts have had little impact. “Various studies carried out in different parts of the country and among different groups of women show that awareness is poor and women do not recognise the symptoms of breast cancer,” according to

178 Nor Aini Abdullah, “Survival Rate of Breast Cancer Patients in Malaysia: A Population-based Study”, Asian Pacific Journal of Cancer Prevention, 2013.179 Malaysian Ministry of Health Website, “DG of Health’s Keynote Address: ‘Vision of the Future: Managing Breast Cancer in Malaysia’ at the 13th Asian Breast Diseases Association (ABDA)

Teaching Course”, 2015.180 For a summary, see Cheng-Har Yip et al., “A Review of Breast Cancer Research in Malaysia”, Medical Journal of Malaysia, 2014.181 “Low response to mammogram subsidy”, The Sun Daily, 28 April 2014.182 Cheng-Har Yip et al., “A Review of Breast Cancer Research in Malaysia”, Medical Journal of Malaysia, 2014.183 Nur Aishah Taib et al., “Improvement in survival of breast cancer patients — trends over two time periods in a single institution in an Asia Pacific country, Malaysia”, Asian Pacific Journal

of Cancer Prevention, 2011.



of women recovering are necessary to change popular perceptions: “What impacts behaviour is what you see in front of you.” That, however, requires more resources for healthcare systems.

Faced with these core, intertwined problems, an important weakness for Malaysia is the lack of a comprehensive strategy. It is one of the few countries in the region without a publicly available national cancer control plan (NCCP) of some type, with cancer control policy contained in internal health ministry documents. In practice, says Dr Somasundaram, “there is no NCCP, and without one it is difficult to build structures and put processes in place.”

The lack of a comprehensive approach not only hinders efforts on education and treatment, it allows gaps in cancer control and breast cancer services to go unaddressed. The lack of credible registry data is one. Another is survivor services, where Dr Somasundaram says there are “very deep holes in the system”. In general, she explains, although there is care for any post-treatment physical problems, real psychological or emotional support is not available within the health system.

NGOs try to fill the void, but Dr Somasundaram notes that what exists can be highly uneven. The National Cancer Society is starting a training programme for volunteers to help address the problem. Here again, though, stigma around breast cancer rears its head. Dr Yip finds that “The majority of patients choose not to join survivor groups, because they want to move on and forget about breast cancer.”

treatment and care The second core breast cancer issue facing Malaysia is access to care. The dominant focus of the country’s cancer control programme overall is hospital treatment, and the result is a number of good facilities. For example, the five-year survival rate for those diagnosed at the University of Malaysia Medical Centre last decade was one-and-a-half times that of the population overall.

The problem is accessing such treatment. Although the country has universal healthcare, Dr Somasundaram notes that “the structure of breast cancer care is being overwhelmed, and we are not putting enough resources into maintaining or expanding it.” The figures again make this all too clear. According to Dr Yip, for a population of roughly 30m, Malaysia has only 38 breast surgeons, 10 public breast surgery units and eight oncology centres. Pathologists are also in short supply. “Although a woman will eventually get treatment practically free of charge, timeliness is an issue and delay may also lead to poorer survival,” says Dr Yip. Moreover, many cannot afford certain breast cancer drugs. In rural areas, the shortages and delays are even greater.

The weak healthcare provision and cultural beliefs also interact in unhelpful ways. Says Dr Somasundaram: “It is a chicken and egg situation: the health system says women don’t come to us, but women say when we come it takes so long to be diagnosed or we are not communicated with so we step back.” She adds that easy access to diagnosis and more examples



On a positive note, much palliative care in Malaysia is very good, partly the result of services established when the country had an NCCP more than a decade ago. Certain aspects are even covered through the universal healthcare system.184

Individual bright spots, though, are unlikely to ease the growing breast cancer burden in Malaysia. While the health authorities often show a willingness to engage in any number of individual initiatives — such as education or screening — a comprehensive approach that collectively addresses the underlying issues of low health literacy, fear, popular misconceptions and poor access is needed. n

184 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.



country’s three main ethnic groups -- Chinese, Malay and Indian. The registry’s latest ASR figure is not far off Globocan’s 2012 estimate of 65.7, the third highest in the countries under study, after Australia and just slightly behind Taiwan. Whatever the exact number, the steady increase shows no sign of abating.

The age profile of those developing the disease has also grown far closer to that in the West. Even into the 1990s, incidence rose with age until about 40 and then flattened. Now it continues rising to peak when women are in their 60s.185 A pronounced cohort effect has been apparent for over two decades as has the likely culprit — the changes in fertility patterns and lifestyle accompanying economic development.186 This

incidence The experience of Singapore is the clearest indication that, with economic development, the breast cancer situation in Asian countries will converge with that of the West. According to Singapore Cancer Registry figures, age-standardised incidence has risen steadily since the mid-1970s, from 22.0 per 100,000 for the period 1973-77 to 43.4 by 1993-97. Now, the average for 2010-14 is 64.7.

These figures are likely to be reliable. Singapore has one of the oldest cancer registries in the Asia-Pacific. Set up in 1968, the registry is one of the best such institutions in the region, according to Dr Malcolm Moore, editor-in-chief of the Asian Pacific Journal of Cancer Prevention especially since it provides separate data for the

185 Singapore Cancer Registry, “Interim Annual Report: Trends in Cancer Incidence in Singapore 2010-2014”, 2015.186 A Seow, “Breast Cancer in Singapore: Trends in Incidence 1968-1992”, International Journal of Epidemiology, 1996; Kee-Seng Chia et al., “Profound Changes in Breast Cancer Incidence

May Reflect Changes into a Westernised Lifestyle: A Comparative Population-Based Study in Singapore and Sweden”, International Journal of Cancer, 2005.

sinGaPOre

KeY Data

General

Population in millions (2015) 5.535 Singapore Department of StatisticsGDP (PPP) per capita (2015) $84,990 EIU calculationDoctors per 1,000 population (2015) 1.97 WDI, WHOTotal healthcare spending per capita (2015) $2,419 WHO


Age-standardised Incidence Rate per 100,000 (2012) 65.7 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 15.5 GlobocanMortality to Incidence Ratio 0.24 EIU calculationFive-year relative survival (2008-2012) 79.5% Singapore Cancer Registry



is respectable in global terms and steadily increasing, but trails the countries mentioned above by about 7 to 12 percentage points.188

More impressively, stage-specific five-year survival figures are either equal to or only slightly below those in the US.189 The sole difference in overall survival arises from later presentation by the women affected. This is consistent with the strengths and weaknesses of breast cancer control in Singapore. On the one hand, the health system provides a quality of care on a par with that of the best performing countries in the world. On the other, the fast transition in breast cancer rates means that public understanding of the disease is still a barrier to further down-staging, as is a funding system for healthcare that, while largely successful, can be an impediment to seeking treatments as expensive as those for cancer.

Considering funding first, Singapore’s health system has an unusual arrangement. Individuals pay for care but are required to put 8% to 10.5% of their earned income into personal Medisave accounts. They can access these funds solely to pay for their own healthcare expenses or those of close family members. In addition, since November 2015 there has been a restructured, mandatory, basic, state-subsidised catastrophic care insurance — Medishield Life — which includes chemotherapy after co-pays. There is also a programme of government assistance to help low-income Singaporeans meet costs. As Dr Dent says, “The system as a whole can seem complicated because it is multi-tiered. Some think it is great. It empowers patients in making

explanation is all the stronger because in Singapore breast cancer incidence is only one of the changes visible. Dr Rebecca Dent, senior consultant on the breast team at Singapore’s National Cancer Centre, explains that “Singapore has transformed itself from a developing country to a first world one. This has brought with it rapid change in cancer,” including a lowering of rates of cancers associated with low-income countries — those of the cervix and liver, for example — and an increase in those more common in wealthier societies, such as breast, colorectal and prostate cancer. “Now the situation mirrors what you see in the West,” she says. “The change is quite dramatic.”

Singapore has had considerable success in addressing this increase in breast cancer. Mortality did rise, albeit more slowly than incidence, through the 1970s and 1980s, but according to registry figures the ASR has hovered around 14 per 100,000 since the start of the 1990s. Globocan puts the figure slightly higher, at 15.5, but various studies show that, whatever the current rate, age-standardised mortality has been flat for some time.187

Although Singapore is holding its own against rising incidence, its mortality performance does fall somewhat short of other developed countries. For example, its mortality-to-incidence ratio, 0.24, is the worst of the six wealthiest countries in this study and is noticeably higher than those of Taiwan, Hong Kong and South Korea, which have experienced a similar pattern of economic development. Similarly, its five-year survival rate, 79.5%,

187 Youlden et al., 2014; Shin et al., 2010.188Singapore Cancer Registry, “Cancer Survival in Singapore 1973-2012”, [2015]189 Singapore Cancer Registry, “Cancer Survival in Singapore 1973-2012”, [2015]; “Breast cancer survival rates, by stage”, American Cancer Society web page, http://www.cancer.org/

cancer/breastcancer/detailedguide/breast-cancer-survival-by-stage.



This is not false modesty but acknowledgement of the size of the task. Years of government and NGO effort have had a marked, but only partial, effect. Basic knowledge of breast cancer has improved and is widespread. An extensive 2009 survey found that a very large majority of women in Singapore knew various key, elementary facts about the disease. In particular, 91% were aware that early-stage breast cancer is curable, up from 39% in a 1994 survey.190

Beyond the basics, though, the same study showed that knowledge of some aspects of breast cancer was fuzzier, in particular disease risks — only 61% could correctly name a single one. Over half thought that the only surgery option was a radical mastectomy. A more recent study found that a majority of women did not know that mammograms could find cancers that were not yet visible.191 Negative cultural beliefs have also not completely disappeared. Dr Dent’s impression is that “the older population is still a bit fatalistic. They are OK with surgery, but not keen on other treatments.”

screening These issues collectively do much to explain the still low uptake of screening services in the country. BreastScreen Singapore, a national, population-wide programme, was established in 2002 and now covers women aged 40 to 69. Its original goal was to be screening 70% of the target group each year by 2008.192 Instead, the proportion receiving mammograms rose from 29.7% before the service began to just 39.6%

decisions, but there are pros and cons.” As discussed below, one of the latter is the negative impact it has had on some cancer-related patient decisions. The very recent extension of Medishield, and renaming as Medishield Life, is meant to address some of these issues, however.

awareness As for deficiencies in public understanding, these do not arise from lack of effort. The country benefits from an extensive variety of breast cancer awareness-raising and education programmes. Noor Quek, president of Singapore’s Breast Cancer Foundation (BCF), explains that the BCF co-ordinates strategy and efforts with numerous other actors. The annual October Breast Cancer Awareness month, for example, involves the BCF as well as the National Cancer Centre, the National University Cancer Institute of Singapore, the Health Promotion Board and the Singapore Cancer Society.

This includes a wide range of initiatives. Mrs Quek, for example, reports that some years ago the BCF helped set up Paddlers in the Pink, one of a growing number of dragon boat teams for breast cancer survivors worldwide. It also has extensive outreach to men, including a men’s support league and BIG (Blog It Guys), a programme that encourages men to be public about the experience of supporting a loved one with breast cancer. Mrs Quek adds, though, that “there is never enough effort.”

190 Hsien-Lin Sim, “Breast cancer knowledge and screening practices: A survey of 1,000 Asian women”, Singapore Medical Journal, 2009.191 Siew Kuan Lim et al., “A Survey on Singaporean Women’s Knowledge, Perception and Practices of Mammogram Screening”, Annals of the Academy of Medicine, Singapore, 2015.192 KG Yeoh et al., “Cancer screening in Singapore, with particular reference to breast, cervical and colorectal cancer screening”, Journal of Medical Screening, 2006.



The results of partial knowledge and concerns about screening come through in the stage presentation data. Between 2010 and 2012, 27% of patients with the disease presented at stages III or IV — not extremely high, but elevated enough to be of concern for a developed country.198 Worse still, the figures showed no down-staging at all over the previous six years, when BreastScreen was starting up.

treatment and care Whatever the difficulties Singapore has in promoting earlier detection, its treatment is very good. This reflects, says Dr Dent, the government’s “clear drive so that patients get state-of-the-art medical facilities. The efficiency is impressive: they can move from a biopsy to curative surgery in one to two weeks. Multi-disciplinary teams are the norm, and every state-subsidised hospital has some kind of tumour board.” Advanced procedures, such as oncoplastic surgery, are available, as are advanced drugs. Care is also increasingly focussed on the whole person rather than medical procedures, adds Mrs Quek.

Again, however, “how to afford treatment is a challenge” for the less well off, says Mrs Quek. One study at the country’s largest cancer centre found that, among older patients — those most at risk from breast cancer — a majority believed that existing financial schemes helped but, in the words of the research report, “the general

by 2010. Since then, the Health Promotion Board believes use has plateaued.193

Quality is not the issue: relevant metrics are similar to those in other developed countries.194 The programme has also, says Mrs Quek, moved beyond an initial, very clinical approach, to one that is more client-centred and service-oriented. The ongoing barriers instead revolve around inter-related worries arising from cost considerations and misperceptions about the value of screening.195 Dr Dent believes that improved education is necessary not just about breast cancer, but helping “people to understand what breast screening is all about as well as to bring about cultural change. Fear of finding an abnormality stops people; they still give the impression that they would rather not know.”

Cost also keeps down participation in screening in various ways. The price to the patient for a screen, which can be paid from a Medisave account, is S$50 (US$35) after a government subsidy. This may seem small, but one study found reducing that cost was the most effective way to increase participation.196 The government began providing free screening for low-income individuals in 2015, but the difficulties do not stop there. In 2013, a quarter of those who received a full subsidy under a government initiative and who screened positive last year did not go on for further tests, presumably because of the cost of biopsies and other diagnostic procedures.197

193 EY Loy et al, “National Breast Cancer Screening Programme, Singapore: Evaluation of participation and performance indicators”, Journal of Medical Screening, 2015; “More women here found with breast cancer every year”, Straits Times, 1 October 2015.

143 EY Loy et al, “National Breast Cancer Screening Programme, Singapore: Evaluation of participation and performance indicators”, Journal of Medical Screening, 2015.195 T Seetoh, “Overcoming Barriers to Mammography Screening: A Quasi-randomised Pragmatic Trial in a Community-based Primary Care Setting”, Annals of the Academy of Medicine,

Singapore, 2014; Edmund Lee et al., “Communication and knowledge as motivators: understanding Singaporean women’s perceived risks of breast cancer and intentions to engage in preventive measures”, Journal of Risk Research, 2013.

196 Seetoh, 2014197 “1 in 4 women in Singapore skip follow-up breast cancer tests”, Straits Times, 22 April 2014.198 Singapore Cancer Registry, “Cancer Survival in Singapore 1973-2012”, [2015]; Guohao Chang, “A Commentary on Delayed Presentation of Breast Cancer in Singapore”, Asian Pacific

Journal of Cancer Prevention, 2011.



Singapore is dealing with a very rapid increase in breast cancer well, but not quite as well as some Asian neighbours. To improve further, it needs to continue with its widespread education efforts and find ways to counteract the negative impact of its healthcare funding system for cancer treatment. The expansion of Medishield may be an important step toward the latter. n

perception is that [patients] require further help to offset their out-of-pocket expenses.” This is particularly true of those using targeted therapies, such as adjuvant drugs. They were 2.5 times more likely to have trouble paying for treatment than other cancer patients.199 This study, however, occurred before the institution of Medishield Life which covers outpatient chemotherapy. How this will affect behaviour in practice remains to be seen.

Once through treatment, survivor services are stronger in Singapore than in many Asian countries. The National Cancer Centre, Singapore’s largest cancer facility, has had an advanced practice nurse-led survivorship programme since 2008 which helps patients to co-ordinate ongoing treatment. More recently, says Dr Dent, the centre has been training general practitioners in long-term survivorship care to reduce costs and improve continuity.

Palliative care, on the other hand, has traditionally been a weakness with little government investment. Its quality is still below what one would expect from a country at Singapore’s level of development. Recently, however, as part of a range of efforts to prepare for the impact of population ageing, the Ministry of Health has developed a national palliative care strategy and is increasing the number of places available. Accordingly, in The EIU’s 2015 Quality of Death Index, Singapore had the third highest score.

199 Alexandre Chan et al., “Affordability of cancer treatment for aging cancer patients in Singapore: an analysis of health, lifestyle, and financial burden”, Supportive Care in Cancer, 2013.



This rapid expansion of the disease burden has been matched by quickly growing economic costs, including lost productivity. Between 2007 and 2010 alone, these increased by 37%, with the total of direct and indirect breast cancer costs for the country reaching US$466m in the latter year.203

The common drivers of rising breast cancer incidence in Asia are particularly acute in South Korea. According to Dr Lee, “Reproductive and lifestyle factors have moved fast in favour of breast cancer risk.” Compared to 1970 figures, for example, by 2009 average fertility had dropped by 75%, and by 2006 the breastfeeding rate had declined by 73%, while meat and fat consumption rose steadily.204 Limited lifestyle-related prevention efforts, Dr Lee adds, “are a

incidence The growth in breast cancer incidence in South Korea in recent decades has been one of the fastest in the world.200 In 1995, the age-standardised incidence rate was 14.1 cases per 100,000 women.201 By 2003, it had jumped to 32.4 and by 2013 to 52.1, according to Dr Dukhyoung Lee, director of the National Cancer Control Institute within South Korea’s National Cancer Center. This is now well above the global average of 43.3, and the trend shows no sign of abating. Moreover, the demographic and biological characteristics of the disease seem to be shifting from those typical of Asian countries toward those found in the West.202 Convergence will mean still higher incidence figures in future.

200 Keun-Young Yoo, “Lifestyle, Genetic Susceptibility and Future Trends of Breast Cancer in Korea”, Asian Pacific Journal of Cancer Prevention, 2006.201 Jin-Hee Lee et al., “Population-based Breast Cancer Statistics in Korea during 1993-2002: Incidence, Mortality, and Survival”, Journal of Korean Medical Science, 2007.202 Zisun Kim et al., “The Basic Facts of Korean Breast Cancer in 2012: Results from a Nationwide Survey and Breast Cancer Registry Database”, Journal of Breast Cancer, 2015.203 Young Ae Kim, “The Economic Burden of Breast Cancer in Korea from 2007-2010”, Cancer Research and Treatment, 2015. 204 Boyoung Park et al., “Epidemiological characteristics of ovarian cancer in Korea”, Journal of Gynecological Oncology, 2010.

sOutH KOrea

KeY Data

General

Population in millions (2015) 50.29 UN population dataGDP (PPP) per capita (2015) $35,830 EIU calculationDoctors per 1,000 population (2015) 1.7 EspicomTotal healthcare spending per capita (2015) $1,958 WHO


Age-standardised Incidence Rate per 100,000 (2012) 52.1 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 6.1 GlobocanMortality to Incidence Ratio 0.12 EIU calculationFive-year relative survival (2009-2013) 91.5% National Cancer Control Institute



since passage of the 2003 National Cancer Act which, among other things, established a national registry which enjoys a high international reputation, A closer look at efforts against breast cancer reveals a great number of strengths, but also some areas where further progress would be valuable.

awareness Success in the battle against the disease begins with awareness of it. Experts interviewed for this study agree that this is widespread in South Korea. Public efforts, such as the Pink Ribbon Campaign, have a high profile. Although not a direct measure, a useful proxy for awareness is knowledge of breast self-examination, and therefore presumably that breast lumps are medically important issues. In South Korea, 88% of women have heard of the procedure.208

It is important to note that high awareness has not dispelled myths and stigma. One nationally representative survey looking at attitudes toward cancer overall found that 59% agreed “It is impossible to treat cancer regardless of highly developed medical science” and 72% that “Cancer patients would not be able to make contributions to society.”209 These beliefs will take time to overcome. Dr Sehwan Han, chairman of the Korean Breast Cancer Society, complains that false or inaccurate information from media, in particular television, is “a major obstacle” to a more accurate understanding of breast cancer among the general population.

notable weakness” in South Korea’s fight against breast cancer. For a variety of reasons, though, “The fertility issue is a top national priority, with varied ongoing policy interventions,” but it is a hard factor to affect, he says.

More striking, however, is the difference between incidence and mortality figures. The latter have been rising, but at a far slower pace: Korean registry data indicate that between 2003 and 2012, the age-standardised rate went from 5.8 per 100,000 to 7.9.205 It may now even have plateaued. Globocan, meanwhile gives an even lower 2012 mortality ASR of 6.1.

Other data show even more strongly that, far from struggling, South Korea’s health system has had exemplary success in addressing the country’s burgeoning breast cancer challenge. Of all the countries in this study, South Korea has the lowest mortality-to-incidence ratio for the disease. Five-year survival rates have improved from 83.2% in 1996-2000 to 91.5% in 2009-2013, putting the country ahead of the US — a common benchmark for breast cancer care.206 Moreover, survival probability is markedly better in South Korea than in America for those diagnosed at a more advanced stage.207

This success arises from an extensive, co-ordinated general anti-cancer effort that dates back nearly two decades. This has strong government support: cancer policy in Korea has had the backing of law

205 Jong-Myon Bae, “It needs adaptation to the 2015 Korean guideline for breast cancer screening”, Journal of the Korean Medical Association, 2015.206 Zisun Kim et al., 2015; communication from Dukhyoung Lee, Director, National Cancer Control Institute.207 Kyu-Won Jung et al., “Survival of Korean Adult Cancer Patients by Stage at Diagnosis, 2006-2010: National Cancer Registry Study”, Cancer Research and Treatment, 2013. 208 Bit-Na Yoo et al., “Awareness and Practice of Breast Self-examination among Korean Women: Results from a Nationwide Survey”, Asian Pacific Journal of Cancer Prevention, 2012.209 Juhee Cho, “Public attitudes toward cancer and cancer patients: a national survey in Korea”, Psycho-Oncology, 2013.



effectiveness. Since 2010, the rate has varied between roughly 60% and 70% and is now roughly in the middle of that range.213 To expand screening further the government is considering adding it to already obligatory employer-provided health checks under the Occupational Safety and Health Act.

Although clearly popular, screening in South Korea evokes the same debate about potential over-diagnosis as in the rest of the world. It also has a noticeably higher false-positive rate. Only 0.6% of those who screen positive turn out to have breast cancer,214 compared with 5% to 10% in much of the developed world.215 Dr Han notes that an elevated number of false positives is an inevitable part of mammography, although he is concerned that economic incentives lead to an excessive use of ultrasonography and accompanying biopsies where masses are found. Overall, though, the screening programme is clearly popular and, initial studies have shown, cost-effective.216

Measuring the long-term impact of screening, however, remains difficult because the programme has run for only a decade. Down-staging has definitely occurred. In 2012, 53% of those newly diagnosed with breast cancer were stages 0 or I and 12% were stages III or IV. In 2001 to 2005, these figures had been 37% and 14% respectively. How far this resulted from screening, however, is unclear as presentation figures had already been improving steadily since

screening One of the defining elements of South Korean cancer control is a very strong emphasis on screening. Breast cancer is no exception. The country has by far the highest number of mammography units per woman aged 50-69 in Asia and more than 2.5 times the OECD average.210 Its health service offers mammography and clinical breast examination (CBE) every two years to every woman aged 40 or over — at no cost for the 50% of people with the lowest incomes. The programme has achieved substantial uptake: the proportion of the target population screened per year has risen from 33% in 2004, when free coverage was greatly expanded, to 66% in 2014.211

The reasons why South Korea has a markedly higher screening rate than other countries in the region is difficult to ascertain. It provides free mammography for women in the bottom half of national income distribution and contacts all of those who are scheduled to undergo the procedure in a given year. Other countries, though, do this. What may set it apart is the great vigour practiced by those responsible for screening. This results, at least in part, from incentives to local National Cancer Screening Programme officials based on how many targeted individuals in their areas are screened for different types of cancer.212

Current techniques to drive higher participation may have reached the limits of their

210 OECD, Health at a Glance Asia/Pacific 2014: Measuring Progress Towards Universal Health Coverage, 2014211 Mina Suh et al., “Trends in Cancer Screening Rates among Korean Men and Women: Results from the Korean National Cancer Screening Survey, 2004-2013”, Cancer Research and

Treatment, 2015; National Cancer Centre, Cancer Facts & Figures 2015, 2015.212 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.213 Mina Suh et al., “Trends in Cancer Screening Rates among Korean Men and Women: Results from the Korean National Cancer Screening Survey, 2004-2013,” Cancer Research and

Treatment, 2015; National Cancer Centre, Cancer Facts & Figures 2015, 2015.214 Minsoo Jung, “National Cancer Screening Programs and Evidence-Based Healthcare Policy in South Korea”, Health Policy, 2013.215 Solveig Hofvind et al., “False-positive results in mammographic screening for breast cancer in Europe: a literature review and survey of service screening programmes,” Journal of

Medical Screening, 2012; RD Rosenberg, “Performance benchmarks for screening mammography,” Radiology, 2006.216 Moon Hae Kang et al., “The National Cancer Screening Program for Breast Cancer in the Republic of Korea: Is it Cost-Effective?” Asian Pacific Journal of Cancer Prevention, 2013.



Plan 2016-2020’s emphasis on precision medicine — which allows treatments to be targeted more closely at those individuals likely to respond — will ease the health insurance system’s hesitation to cover expensive drugs.

While excelling on the medical side of finding and curing cancer, South Korean efforts can fall short on the human side. There is little support for family carers, who play an increasingly important role in care.220

More generally, attitudes toward breast reconstruction surgery are revealing. Until early 2015, it was not covered by the NHI as it is considered to be a purely cosmetic procedure. The government even applied value-added tax to the cost in 2011 when it taxed all cosmetic surgeries. In a rare, but effective, example of patient activism, a petition campaign and lawsuit led by breast cancer survivors resulted in a repeal of the tax in 2013.

In April 2015, the government began to cover 50% of the cost of breast reconstructive surgery, but again here much of what seems to be given with one hand is taken away by the other. The reduction only applies for women who had radical mastectomies, but in 2012, the latest years for which there are figures, only 37% of patients has such procedures while 62% had breast conserving surgery. Moreover, doctors complain that the country’s Health Insurance Review & Assessment Service is using excessively strict standards when interpreting these already restrictive regulations.221

at least 1993.217 As for the effect on mortality, it is simply too early to tell.

treatment and care Diagnosis, though, is useless without treatment. Dr Han believes that the great strength of breast cancer control in South Korea is that “Most newly diagnosed breast cancer patients have easy access to qualified medical services everywhere in this country.” These are both relatively inexpensive for patients — there is only a 5% co-pay when that for most health services is between 20% and 50% — and of a very high quality. Hospitals are well-supplied with, in Dr Lee’s words, “cutting edge treatment technology and skill.” Multi-disciplinary teams are the norm, and the Korean Breast Cancer Society has begun organising consensus conferences on translating the latest research findings into medical practice.218

One important weakness, however, notes Dr Han, is “the slow adoption of novel therapeutic agents and diagnostic tests by the National Health Insurance (NHI) system. As a result, a large proportion of breast cancer patients cannot receive the most advanced treatment because of economic problems.” Of the 37 new cancer drugs released by pharmaceutical companies between 2009 and 2013, only 16 had been approved for use in South Korea by 2014 — the lowest for any major market — and just eight were fully reimbursed — also the lowest.219 Dr Lee recognises the problem, but hopes that the new National Cancer Control

217 Zisun Kim et al., 2015; Keun-Young Yoo, “Cancer Epidemiology in Korea”, Pitt University presentation, 2010, www.pitt.edu/~super4/41011-42001/41121.pdf.218 Byung Joo Chae et al., “Multidisciplinary team approach in breast cancer: a nationwide survey in Korea”, Journal of the Korean Surgical Society, 2012; Airi Han et al., “Meeting

Highlights: The First Korean Breast Cancer Treatment Consensus Conference”, Journal of Breast Cancer, 2014.219 IMS Institute for Health Informatics, “Developments in Cancer Treatments, Market Dynamics, Patient Access and Value”, 2015.220 Hyejin Kim and Myungsun Yi, “Unmet needs and quality of life of family caregivers of cancer patients in South Korea”, Asia-Pacific Journal of Oncology Nursing, 2015.221 “유방재건술 등 선별급여 적용 결정 및 중기 보장성 강화계획 보고, 병원 간 협진 수가 시범적용 방안 논의- 2015년 제3차 건강보험정책심의위원회 개최” Korean government press release,

March 2015; “유방재건술, 전체 절제만 급여 ‘이럴거면 선별급여 왜 했나’” Medical Times, 1 February 2016; Zisun Kim et al., “The Basic Facts of Korean Breast Cancer in 2012: Results from a Nationwide Survey and Breast Cancer Registry Database”, Journal of Breast Cancer, 2015.



challenges are understanding and providing for the needs of people after treatment, as well as dispelling the lingering stigma about breast cancer. n

Similarly, support for the 140,000 breast cancer survivors222 in South Korea is a relative weakness in the system. “There is no official programme for breast cancer survivors,” Dr Han says, although large hospitals do provide them, as do some community-based NGOs. These are not always enough. For cancer as a whole, survivor programmes tend to be weak and survivor quality of life significantly lower than that of those who have never had the disease.223

This area is receiving attention. Three years ago, the Korean Breast Cancer Society launched a survivorship research group in order to better understand needs. Looking ahead, the National Cancer Centre’s Dr Lee expects that survivorship will become one of the main cancer priorities of the near future and that the next iteration of the National Cancer Control Plan will include relevant programmes.

Another relative weakness is palliative care. In The EIU’s 2015 Quality of Death Index, the country came fifth among the six high-income states in this study. Facilities are few, quality variable, and doctors tend to refer patients to them only very late. Not surprisingly, in 2013 just 12% of those with terminal cancer used hospice or palliative care services.224

Overall, faced with a growing breast cancer burden, South Korea has developed a world- class system for finding and treating the disease. While any system has weaknesses, it is hard to argue with such overall success. The next

222 Number from National Cancer Centre, Cancer Facts & Figures 2015, 2015.223 Minsoo Jung, “Cancer Control and the Communication Innovation in South Korea: Implications for Cancer Disparities”, Asian Pacific Journal of Cancer Prevention; Myueng Guen Oh et al.,

“Health-related Quality of Life Among Cancer Survivors in Korea: The Korea National Health and Nutrition Examination Survey”, Japanese Journal of Clinical Oncology 2013.223 Economist Intelligence Unit, Controlling cancer: The state of National Cancer Control Plans in Asia, 2015.



more than doubled, from 16.5 per 100,000 to 33.3.226 By 2012 it had nearly doubled again, to 65.9. As a result, after Australia, Taiwan has the second highest age-standardised incidence rate in this study.227

“Our incidence will continue to grow,” says Dr Shu-Ti Chiou, director-general of Taiwan’s Health Promotion Administration. Breast cancer rates show a marked cohort effect in the country. While older women are less prone to develop the disease than those in the West, already those

incidence Cancer is Taiwan’s biggest health issue. It has been the country’s leading killer since 1982 and its overall incidence has risen by 300% since 1979.225 Within that context, breast cancer is not only the country’s most common female cancer — with an incidence roughly one and three-quarters times that of colorectal cancer, the next most common — its growth rate also outstrips the average of all cancers, according to the country’s cancer registry. Between the end of the 1980s and the end of the 1990s, age-standardised incidence slightly

225 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.226 Chun-Ju Chiang et al., “Cancer Trends in Taiwan”, Japanese Journal of Clinical Oncology, 2010.227 Taiwanese Health Promotion Administration, Annual Report 2015, 2016.

taiWan

KeY Data

General

Population in millions (2015) 23.492 Taiwan Directorate-General of Budget Accounting & Stats GDP (PPP) per capita (2015) $44,680 Taiwan Directorate-General

of Budget Accounting & Stats; Central Bank of China: Financial Statistics

Doctors per 1,000 population (2015) 2.2 EspicomTotal healthcare spending per capita (2015) $1,496 WHO


Age-standardised Incidence Rate per 100,000 (2012) 65.9 Taiwan Health Promotion Administration

Age-standardised Mortality Rate per 100,000 (2012) 11.6 Taiwan Health Promotion Administration

Mortality to Incidence Ratio 0.18 EIU calculationFive-year relative survival (2008-2012) 87% Taiwan Cancer Registry



awareness The reason for this relative success has been an active cancer control programme, in which breast cancer has featured prominently. The effort is not only comprehensive but is also shaped by research — either analysis of a high-quality cancer registry over three decades old or trials. The latter are often initiated by the government, which looks at what works well in breast cancer control and how it might be improved. “Everything is evidence-based,” says Dr Chiou. The result is a frequently state-of-the-art system. The main problem, she adds, is “our people’s health literacy on cancer. Here, the government is ahead of society. The maturation of society takes time.”

screening This dichotomy is most evident in the field of early detection. Since 2004, the health service has provided free breast screening to women aged 50 to 69. In late 2010, that was expanded to include those aged 40 to 49.

The programme is well-organised, well-resourced, and evidence based. The authorities determined that the intervention would be cost-effective — just over $30,000 per quality- adjusted life year using mammography — says Dr Chiou. She adds, “We did all the planning before we launched it; we encouraged hospitals to purchase mobile mammography machines; we trained the examiners and had a certification for quality.” The result has been quality matching

born after about 1960 — when industrialisation began to accelerate in the country — have nearly the same incidence as white American females.228 The country is also seeing a rapid convergence with Western incidence figures: the ASR in 1993 was under one-third of Australia’s; now it is roughly three-quarters.229

The consensus culprit is the Westernised lifestyle that has accompanied economic development. Professor Chiun-Sheng Huang of National Taiwan University’s College of Medicine says that this explanation is consistent with the increasing average age of those diagnosed and the higher number of post-menopausal women developing the disease. Lifestyle factors tend to have a particular effect on incidence rates in older women.

Mortality has shown a similar cohort effect, albeit complicated by unexpectedly high levels in women born in the 1950s — likely the result of widespread DDT use in that decade.230 Overall, though, the increase in mortality has been far less than that of incidence. Since 1996, age-standardised mortality, according to Taiwan cancer registry figures, has with one exception varied within a band of 10 and 12 per 100,000, with the 2014 figure reaching 11.9. Meanwhile, the five-year survival rate between 1998 and 2002 was 81.3%, but by 2008-2012 had reached 87%, similar to that of many developed countries.231 Finally, Taiwan’s mortality-to-incidence ratio, 0.18, is fourth lowest in this study, slightly worse that Australia’s but ahead of Japan’s.

228 Ying-Chun Shen et al., “Significant Difference in the Trends of Female Breast Cancer Incidence Between Taiwanese and Caucasian Americans: Implications from Age-Period-Cohort Analysis”, Cancer Epidemiology, Biomarkers & Prevention, 2005.

229 Comparison of figures from Chun-Ju Chiang et al., “Cancer Trends in Taiwan,” Japanese Journal of Clinical Oncology, 2010 and IARC, CI5 Plus: Cancer Incidence in Five Continents Time Trends, online database.

230 Shin et al., 2010; M-L Ho, “Mortality of breast cancer in Taiwan, 1971 – 2010: Temporal changes and an age — period — cohort analysis”, Journal of Obstetrics and Gynaecology, 2015.231 Taiwan Cancer Registry data provided by Health Promotion Administration.



having a screen were lack of time, laziness and forgetfulness.235 “It is very difficult to motivate people to receive screening,” says Dr Chiou, a problem ironically made worse by a high-quality healthcare system which has engendered over-confidence in its ability to address disease, she adds.

treatment and care Once diagnosed, care is of a high standard. Dr Huang explains that “All the standard treatments that you can have in the US or European countries are available and most of them are covered or reimbursed by National Health Insurance.” Government quality standards also require use of multi-disciplinary teams which meet regularly. Dr Chiou notes that health ministry figures show stage-specific survival in Taiwan is comparable to that in the US.

A notable aspect of Taiwanese breast care provision is ongoing improvement efforts. The health ministry created an accreditation system for cancer hospitals based on meeting quality standards. It has also developed 13 performance indicators. Where facilities lag on performance compared to a benchmark institution, the ministry sends experts to help make changes. This has led to substantial improvements, says Dr Chiou. For example, over the course of the programme the number of breast cancer patients receiving breast conservation surgery instead of radical mastectomies has grown from 30% to 80%.

Another interesting initiative to raise quality has been the use of pay-for-performance.

international best practice.232 The health ministry also funded a detailed study that found that mammography was superior to ultrasound, so the former has remained the technology used, says Dr Chiou.233 Officials have not been remiss in outreach either. According to Dr Huang: “The health promotion department is really trying to push older women to receive screening. There are now a lot of mammography vans that go to distant sites where women can’t reach screening facilities, or that go to companies or factories where a lot of women work.”

The results, though, have been less than dramatic. In 2007 only 7% of the target population took advantage of the programme. By 2015, this had reached 38% which, although higher than the ministry’s goal for the year of 33%, was still well short of the norm in most of the developed world. Moreover, recent growth has been only slow, if steady, with 32.5% screened in 2012.234 Dr Chiou notes that current levels are “still not as high as we would like to see,” and the goal for 2018 is 60%.

The real problem is not capacity, nor lack of outreach, but attitude, she adds: “People have not learned that this is something good.” More generally, widespread misunderstanding about breast cancer among Taiwanese remains a problem in addressing the disease. One 2012 study found misperceptions common, with only 34% of women in a major Taiwanese city believing that mammography could reveal breast cancer before it could be felt by hand, and just 41% agreeing that doing something “morally wrong” is not a cause of the disease. This and other research also reveals no real sense of urgency: the most common reasons for not

232 Huay-Ben Pan et al., “The outcome of a quality-controlled mammography screening program: Experience from a population-based study in Taiwan”, Journal of the Chinese Medical Association, 2014.

233 Chiun-Sheng Huang et al., “A Population-Based Cross-Over Randomised Controlled Trial of Breast Cancer Screening with Alternate Mammography and Ultrasound for Women Aged 40 to 49 Years in Taiwan”, Cancer Research, 2009.

234 Taiwan Ministry of Health, Public Health Report, 2013; Chien-Yuan Wu, “Evidence-Based Cancer Screening Policy and Implementation in Taiwan”, World Cancer Congress Presentation [2014]; 2015 data supplied by Ministry of Health.

235 Tsu-Yin Wu et al., “Understanding Breast Cancer Screening Practices in Taiwan: a Country with Universal Health Care”, Asian Pacific Journal of Cancer Prevention, 2012; Tsu-Yin Wu, et al., “Improving Breast Cancer Outcomes among Women in China: Practices, Knowledge, and Attitudes Related to Breast Cancer Screening”, International Journal of Breast Cancer, 2012.



psychological care as needed. Dr Chiou adds that physical and psychological rehabilitation are integral parts of breast cancer treatment plans. Patient groups are also common.

The problem is knowing how effective these efforts are. A 2012 study found that only 40% of breast cancer patients received any sort of rehabilitative therapy within five years of primary treatment.239 Dr Chiou says that “In the past, we did not measure how good support services were and how well people are doing in terms of quality of life. We are starting to do that.” Given Taiwan’s record in other areas of cancer care, this is likely to bring about improvements.

Palliative care is also of a high standard: Taiwan scores the highest in Asia (excluding Australia) in The EIU’s 2015 Quality of Death Index and sixth overall. Among countries in this study, it is second only to Australia. Taiwanese palliative care is affordable, with high-quality regulation and facilities along with well-trained personnel. It has even seen innovative experiments in using technology to allow greater remote monitoring of care.240 The only difficulty is that access, especially to community-based care, can be difficult,241 although this has been improving in recent years.

Taiwan’s health system provides comprehensive, high-quality care to address its already high — and still increasing — burden of breast cancer. Ongoing service improvements will almost certainly continue in various areas. The real challenge is helping the population to understand the importance of dealing with this disease. n

The BC-P4P programme, dating back to 2001, requires hospitals to meet certain performance standards, penalises those where patients do not complete treatment plans and provides a bonus for meeting or exceeding survival targets. The results have been better quality of care and higher five-year survival rates.236

The one notable difficulty in breast cancer care, says Dr Huang, is that new treatments take time to get approval for reimbursement by the National Health Insurance, meaning that sometimes patients need to pay for these drugs. Dr Chiou agrees: the National Health Insurance’s “rate of adopting new drugs, including for breast cancer, is quite slow,” she says.

As with screening, cultural attitudes also present complications with treatment. Says Dr Huang: “Some people, when diagnosed, don’t like to get the right treatment, and some still believe they can use some alternative medicines to control it.” The number is not great: after putting in place a cancer navigator system — trained care managers who help patients find their way through the often complex treatment process — the proportion who fail to receive treatment within three months of diagnosis has dropped to just 3%, according to Dr Chiou. Nevertheless, it is a particular problem for older patients, with about one in 20 women over 65 delaying or refusing care.237

Post-treatment services are also widespread.238 Dr Huang notes that follow-up care after surgery lasts more than five years and that, for the first year at least, patients continue to have a case manager to help them find physical and

236 Raymond Kuo et al., “Effect of the Pay-for-Performance Program for Breast Cancer Care in Taiwan”, Journal of Oncology Practice, 2011; Michael Porter et al., Koo Foundation Sun Yat-Sen Cancer Center: Breast Cancer Care in Taiwan, Harvard Business School Case Study, 2009.

237 Su Jing Chen, “Characteristics of the Delayed or Refusal Therapy in Breast Cancer Patients: A Longitudinal Population-Based Study in Taiwan”, PLOS One, 2015.238 Yong Wang et al. “Health Services Utilisation in Breast Cancer Survivors in Taiwan,” Nature Scientific Reports, 2014.239 Yi-Hsien Lin and Po-Jung Pan, “The use of rehabilitation among patients with breast cancer: a retrospective longitudinal cohort study”, BMC Health Services Research, 2012.240 Economist Intelligence Unit, “The 2015 Quality of Death Index: Ranking palliative care across the world”, 2015.241 Hu Li Zha Zi, “The present and future of community/home-based palliative care in Taiwan”, Journal of Nursing, 2015, Economist Intelligence Unit, Controlling cancer, 2015.



Bangkok — the most urbanised part of the country — are noticeably higher than those in rural areas, notably the northeast, where Westernisation has to date been far less marked.244 This would also be consistent with the faster growth in incidence among post-menopausal women — whom development-related risks affect more — which the country is experiencing.245 On the other hand, Dr Kris Chatamra, founder and chairman of the Queen Sirikit Centre for Breast Cancer Foundation, believes something more basic may be at play. “We have become good at diagnosis,” he says. “Perhaps the figure from earlier years was not correct.”

incidence Thailand has a relatively low breast cancer burden by global standards but, Globocan reports, the disease is the country’s most common female cancer — with roughly 50% more cases than second-place cervical cancer — and its incidence has been growing steadily for some time. In 1990 the ASR was 12.3 per 100,000, and by 1999 it had reached 20.9.242 By 2012 Globocan estimated that it was 29.3. Various studies have indicated that the rise is very likely to continue.243

The knock-on effects of economic development clearly play a role in the growing levels of this disease. Breast cancer rates in and around

242 Hutcha Sriplung et al., “Cancer Incidence Trends in Thailand, 1989-2000”, Asian Pacific Journal of Cancer Prevention, 2006.243 Shama Virani et al., “Escalating burden of breast cancer in southern Thailand: Analysis of 1990–2010 incidence and prediction of future trends”, Cancer Epidemiology, 2014; Susan

Jordan et al., “Breast cancer in the Thai Cohort Study: An exploratory case-control analysis”, The Breast, 2009.244 Figure 2.13.1 from Thailand Ministry of Health, Cancer in Thailand vol VIII: 201-2012, 2015; Jordan et al., 2009.245 Youlden et al., 2014; Virani et al., 2014; Manas Kotepui and Chaowanee Chupeerach, “Age Distribution of Breast Cancer from a Thailand Population-Based Cancer Registry”, Asian Pacific

Journal of Cancer Prevention, 2013.

tHaiLanD

KeY Data

General

Population in millions (2015) 67.4 IMFGDP (PPP) per capita (2015) $16,570 EIU calculationDoctors per 1,000 population (2015) 0.302 EspicomTotal healthcare spending per capita (2015) $280 WHO


Age-standardised Incidence Rate per 100,000 (2012) 29.3 GlobocanAge-standardised Mortality Rate per 100,000 (2012) 11.0 GlobocanMortality to Incidence Ratio 0.38 EIU calculationFive-year relative survival (1990/2001-2003) 63% Rengaswamy Sankaranarayanan

et al., “Cancer survival in Africa, Asia, and Central America: a population-based study”, The Lancet, 2010.



general awareness of the disease: 80% of Thai women have conducted breast self-examination at least once in their lives. Digging deeper, though, poor understanding is widespread: the knowledge of breast cancer risks among Thai female undergraduates, for example, are among the worst in developing Asia, with under 5% knowing that exercise and weight levels affect risk levels and just 35% that genetic factors are involved.250 Dr Chatamra says that “Education [about breast cancer] is Thailand’s number one weakness” in addressing the disease. He adds that accompanying this lack of knowledge is stigma: “Women regard breast cancer as something scary or even dirty; they don’t like to talk about it.” Finola Chatamra — founder and director of the Queen Sirikit Centre Foundation’s Breast Cancer Awareness Campaign — adds that fatalism and fear are common as is, in this Buddhist country, a sense that the disease is somehow the patient’s fault for misdeeds in a previous life.

The results of such misunderstanding are delays in getting medical attention. Late presentation is common: 41% of breast cancer cases in Thailand are diagnosed at stage III or later, and a further 33% at stage II.251 Contributing to the problem is that many women try traditional, alternative medicine, a tendency magnified, perhaps ironically, by praise for fake cures on modern social media, says Dr Weerawut Imsamran, director of Thailand’s National Cancer Institute.

Thailand has both public and private breast cancer awareness-raising activities. The country’s extensive general cancer prevention

Mortality figures, though, indicate that some of the increase is very real. The ASR is now a still low — in global terms — 11 per 100,000, but it grew at an average of 9% annually between 1985 and 2014.246 On the positive side, Thailand’s ratio of breast cancer mortality to incidence, 0.38, while not as good as those of developed countries, compares favourably with both India and Malaysia, as does its five-year survival rate. This was 63% over a decade ago and has presumably improved since.247

Indeed, the country has a detailed and effective anti-cancer programme that is in many ways an exemplar of good practice and optimisation of resources for a relatively low-income country.248 In order to do better against rising levels of breast cancer, however, Thailand will need to address widespread misperceptions and stigma around the disease, as well as succeed in its efforts to expand pockets of high-quality care to more balanced, nationwide provision.

One of Thailand’s great strengths in cancer control in general is its data. The country has good-quality, population-based registries covering 16 provinces and the intention is that eventually one should exist in every province. These help undergird a strong, evidence-based basis for cancer decision making.249

awareness Unlike the science-minded approach of health officials, popular views on breast cancer suffer from substantial misperceptions. There is some

246 Youlden et al., 2014.247 Rengaswamy Sankaranarayanan et al., “Cancer survival in Africa, Asia, and Central America: a population-based study”, The Lancet, 2010.248 Economist Intelligence Unit, Controlling cancer, 2015.249 Economist Intelligence Unit, Controlling cancer: The state of national cancer control plans in Asia, 2015.250 Karl Peltzer and Supa Pengpid, “Awareness of Breast Cancer Risk among Female University Students from 24 Low, Middle Income and Emerging Economy Countries”, Asian Pacific Journal

of Cancer Prevention, 2014.251 National Cancer Institute, Hospital-Based Cancer Registry 2011, 2012. Figures adjusted to remove those where stage unknown.



2013-2017 (NCCP), health authorities are engaging in pilot work to assess the potential value of population-wide, regular clinical breast examination (CBE). Dr Imsamran says that the Ministry of Health has in recent years extensively trained clinicians to carry out such examinations, as well as to conduct needle biopsies for diagnosis. The goal is to provide CBEs for all women over 40, along with opportunistic screening with mammography or ultrasound of those at high risk.

treatment and care Cancer treatment, meanwhile, presents a mixed picture. The country benefits from free universal healthcare, and some facilities provide excellent treatment. The Queen Sirikit Centre for Breast Cancer, a private, non-profit institution, sees its role as being an exemplar of breast cancer best practice in the country and encouraging others to follow. It accordingly has cutting edge procedures and equipment, says Dr Chatamra. Looking beyond his facility, he notes that Thailand’s “Private hospitals maintain European levels of quality and, nationwide, the medical network isn’t bad.” Similarly, Dr Imsamran says, “We have a relatively good system for breast cancer treatment. In many centres, there are tumour conferences among multi-disciplinary staff to set up treatment plans for individual patients.” The result, he adds, is a stage I five-year survival rate of 85% to 95% at many clinics, with the higher figure not far off that of developed countries.

programme includes items specifically designed to target breast cancer — such as encouraging breastfeeding. An annual pink ribbon campaign takes place as well. Finally, health authorities’ efforts to promote breast self-examination — ongoing since 2003 — are, in Dr Chatamra’s words, “to make women aware of the possibility of having a breast lump,” rather than having any clinical benefit.

Meanwhile, since 2008 the national Breast Cancer Awareness Programme has promoted the importance of risk awareness and early detection. Although not government-funded, it is a key part of the programme of the Queen Sirikit Centre Foundation and therefore benefits from royal patronage, as well as extensive corporate and celebrity support.

The collective impact of these educational efforts is difficult to quantify. Mrs Chatamra believes that “We have begun to see a change,” albeit a slow one. That said, the impact is not yet visible on presentation staging figures, which have shifted little from those of 2004.252

screening As for the other key element of early detection — screening — substantial opportunistic mammography occurs: in 2009, 10% of women aged 30-59 had such a screen.253 A population- wide programme, though, is impossible due to “a shortage of resources, such as radiologists and equipment,” says Dr Imsamran. Instead, as part of the National Cancer Control Plan

252 National Cancer Institute, Hospital-Based Cancer Registry 2004, 2005. Figures adjusted to remove those where stage unknown.253 S Mukem et al., “Breast cancer screening among women in Thailand: analyses of population-based household surveys”, Journal of the Medical Association of Thailand, 2014.



of survivor groups have begun to grow up. These provide psychological support. But there is still a long way to go.”

Palliative care has also long been a weakness, with poor availability and little understanding among general practitioners about its specifics.256 Accordingly, of the ten countries in this study, Thailand has the third worst score in The EIU’s 2015 Quality of Death Index. In recent years, though, the Ministry of Health has made palliative care a priority and a national framework is being developed. The NCCP also contains specific, detailed palliative care goals. Accordingly, this is another area likely to improve.

Piece by piece, most notably in recent years the trialling of CBE, the expansion of clinics and improvements in palliative care, Thailand is strengthening its efforts against breast cancer. Given its continued rise in incidence, these efforts — as well as better success in education — will be necessary. n

The problem is variation in levels of quality, which too often reflects poor access to treatment. The Queen Sirikit Foundation estimates that over half of Thai breast cancer patients receive inadequate care.

The problem is a particular one in rural areas. Dr Imsamran notes that Thailand has 30 cancer centres around the country, all with facilities for surgery, radiotherapy and chemotherapy. Moreover, one goal of the latest NCCP is to have a breast cancer clinic in all provincial hospitals. Most of these centres, though, are in Bangkok and the big cities, but Dr Chatamra says that today, “If you go to remote areas, you have problems.” The differences can be stark: overall five-year survival in the southern province of Songkhla, for example, is 70%, but in parts of the northeast it is below 50%.254

The type of care is affected as well as the quality. One very small rural study found patients reporting that doctors tended to say what the treatment would be rather than to discuss options.255 Dr Chatamra thinks a likely explanation is that “If you go up country, you don’t have much choice. [In some cases,] they don’t have the tools and facilities to practice breast conservation treatment,” making a radical mastectomy the only viable option.

Survivor care is weaker than primary breast cancer treatment. Dr Chatamra says that “Our centre supports survivors [with rehabilitation services]. At other centres, it is still missing. It is as black and white as that.” Mrs Chatamra notes that “To be fair, over the last 10 years a lot

254 Yanhua Che et al., “Comparison of Survival Rates between Chinese and Thai Patients with Breast Cancer”, Asian Pacific Journal of Cancer Prevention, 2014; Amornsak Poum, “Survival Rates of Breast Cancer: A Hospital-Based Study from Northeast of Thailand”, Asian Pacific Journal of Cancer Prevention, 2012.

254 Phensiri Dumrongpanapakorn and Pranee Liamputtong, “Social support and coping means: the lived experiences of Northeastern Thai women with breast cancer”, Health Promotion International, 2015.

256 Jiratha Budkaew and Bandit Chumworathayi, “Knowledge and Attitudes toward Palliative Terminal Cancer Care among Thai Generalists”, Asian Pacific Journal of Cancer Prevention, 2013; P Krongyuth et al., “Palliative Care in Thailand”, International Journal of Palliative Nursing, 2014.



indeed across the entire region — could usefully examine when considering how to improve care and reduce mortality. These are:

data Evidence-based public health requires evidence. Although information gathering has improved in recent years — notably in Japan and China — several countries still have a very incomplete picture of cancer at a national level. Even those with advanced registries, such as Australia, could benefit from better sharing among sub-national registries.

Although insufficient resourcing is inevitably a constraint on information gathering, health systems in well-off countries might also consider the utility of going beyond basic data to include more details on patient treatment and socio-economic status. The social divisions in care revealed by Hong Kong Breast Cancer Registry data — the work of an NGO — are a good example of the public policy issues such data can reveal.

awareness Knowledge among the general public has not risen as fast as incidence in the region. In some cases, lack of understanding, or outright misperceptions, greatly complicate efforts

For many years, fighting breast cancer was a prominent issue in Western countries but of less interest in economically poorer states, where lower incidence meant that other pressing healthcare needs understandably had a higher priority.

In the countries covered in this study, such a dichotomy is increasingly untenable. Despite its many benefits, economic growth brings some unwelcome aspects and breast cancer is one. Increased incidence of the disease, and changes in the demographics of those affected, indicate that Singapore, Hong Kong, Taiwan, South Korea and Japan are already a long way toward joining Australia in having a breast cancer burden like that of Western countries. All signs are that this convergence will continue. The countries with lower per capita GDP may have more time before facing such a full-blown challenge, but their own incidence and mortality rates are already too substantial to ignore, and the growth of their burden is worrying.

Each of the health systems studied here has been addressing the challenge of breast cancer in a variety of ways, shaped by its own particular circumstances. As discussed in the country reports, even the most successful have weaknesses. A summary of these would require too much detail, but general themes emerge which health authorities in all these states — and

sectiOn ii - cHaPter 3: outlook



high participation rates. Many of the states covered here are trying to address this in different ways, but no magic formula has been found.

treatment Two general issues arise from this study with respect to primary treatment. The first is that, while multi-disciplinary care is the ideal, the transition toward it is not complete. In lower resource countries, lack of sufficient staff and equipment inevitably impede progress, but even in these states it would often still be possible to organise better what is available. Higher resource states can face organisational or cultural problems of their own. While Australian clinics provide high-quality multi-disciplinary care, links between these clinicians and patient GPs are sometimes difficult to manage. In Japan, meanwhile, a surgeon-focussed medical system still has too few experts in other relevant disciplines to staff the number of teams desired.

The other major issue is access. Not surprisingly, part of this problem this varies by national GDP. In lower resource countries, the problems are typically high out-of-pocket expense, low availability of such subsidised or free care as exists, or some combination of both. Again, though, higher income jurisdictions are not immune to this problem. The various healthcare funding systems in the countries in this study, although frequently more generous with respect to cancer than other diseases, can still have holes — at least for parts of the population — that make cost of treatment an issue for those with breast cancer.

to down-stage breast cancer. Even in some economically well-off countries problems from these issues persist. Similarly, cultural taboos against discussing the disease and stigma against those who have it exist in most of the countries covered here in some form or another.

Breast cancer awareness programmes are already widespread, but most countries need to consider what might work better in their own contexts: websites are unlikely to help in areas of high illiteracy, while encouragement of the benefits of early diagnosis does little if few cancer survivors are visible in the population.

Prevention Although not as important an element of breast cancer control as it is for other types of cancer, interventions here can help. These are likely to be most effective where combined with other public health efforts in the same direction, such as promoting a healthy diet or breast feeding.

screening There is no single, right answer to what sort of population screening for breast cancer a country should have. Those covered in this study, with the possible exception of Malaysia, largely follow the WHO recommendations. That country, though, would probably have to address substantial culture-related barriers before screening would have much impact. The more general issue here seems to be that, if a country is going to have mammography-based screening, it should find a way to achieve



Interventions in one area of breast cancer control are often highly dependent on the wider context. Raising awareness to help with down-staging is much less likely to work where treatment facilities are weak; success with prevention or screening programmes in turn will do poorly without some level of awareness about the danger of breast cancer; survivor care, indeed any care, is weak without the data to draw evidence-based conclusions.

One important tool to provide the necessary integration, not just for breast cancer but for all forms of the disease, has been the creation of national cancer control plans which are common — if unevenly implemented — in the countries in this study.

Beyond policy documents and health system interventions, another way to bring coherence to elements within the fight against breast cancer is insufficiently used in much of Asia-Pacific: working with patients and survivors as partners rather than as largely recipients of care. To some degree this already happens. Every country has breast cancer patient and survivor associations, and these are often a key element — in lower resource countries sometimes the only element — in survivor psychological support. They also frequently either co-operate with the government on or engage in their own awareness-raising programmes.

While these efforts are valuable, the potential worth of these organisations playing a broader role within policy-setting, through co-operation and advocacy, is far greater. Those affected by

On the other hand, countries across the GDP spectrum in this study that happen to have large rural areas still need to address access issues for these communities.

survivor care As a relatively new field in breast cancer care, this tends to be weaker than primary treatment in higher resource countries and can be missing entirely in low-resource ones. Various health systems have begun to wrestle with survivorship issues, and Australia and Singapore have already made good progress toward improving continuity between initial treatment and long-term care by non-specialists. That said, this is an area in which all health systems in this study will need to learn and do more.

Palliative care Too often this is an after-thought of cancer care. Several countries have already integrated it into overall cancer control or are in the course of doing it, but experts in every country acknowledge that more work is needed in this area.

integrating efforts around those affected

Taking a step back from the specific areas where breast cancer control needs improvement, another overarching requirement for success in this field becomes clear: the need for a comprehensive, integrated strategy.



advocacy and government policy engagement with stakeholders is typically described as “in its infancy” or “fairly limited.”

Signs of change, though, may be visible. The debate over screening in Hong Kong is a case in point. Dr Cheung’s Hong Kong Breast Cancer Foundation engages in substantial advocacy and has been a leading voice on the side of those wanting the city to introduce population-wide mammography. From her perspective, “Stakeholder engagement is very minimal.” Dr Ko has a different view: “We are in close contact with NGOs, although we may hold different views on certain matters,” he notes with some understatement. He adds that in 2012, the Hospital Authority established its first patient advisory committee made up of representatives from different groups, an indication “that we are moving in a positive direction in this area.” Whatever the true nature of the relationship between patient stakeholders and the Hong Kong government, the latter’s efforts to find a middle ground with risk-based screening is a sign that advocates could be having more influence than they recognise.

This bodes well not just for efforts against breast cancer. Dr Zorbas notes that, driven on by effective engagement between advocates and health authorities, often “breast cancer leads the way” in areas ranging from awareness-raising through multi-disciplinary treatment, to survivor support. If done correctly and comprehensively, tools shaped by efforts against breast cancer could leave the countries in this study better equipped to address cancer, and even NCDs as a whole, more effectively. n

cancer have an integrated knowledge of the strengths and weaknesses of the healthcare system and its interlocking parts based on experience. This begins with small but valuable input along the continuum of care. To cite just one example, Mrs Quek recalls the impact of patient feedback, which the BCF communicated to a number of screening centres some years ago, that the use of cold gel during the mammography process increased the fear of screening for women. Accordingly, a number of centres decided then to use warm gel, which was favourably received by women being screened — one step to making that process less off-putting.

At the overall cancer control level, the impact of patient engagement is profound. While women in Japan and South Korea are uncomfortable even talking about breast cancer, in Australia it is discussed openly by those affected, in large part because Australian survivors have talked about their experiences openly for many years. Patients and survivors drawing attention there to the difficulties of disjointed care helped make obvious the need for multi-disciplinary treatment. Meanwhile, the new interest in long-term care has arisen in no small part because survivors themselves have made clear that they are not simply “cured” but face ongoing, chronic health issues.

Working with breast cancer advocates who call for change involves political engagement. Such co-operation is one of the strengths of Australia’s breast cancer control, and Taiwan has patient representatives on its cancer policy-creating bodies. But elsewhere in the region it is rare. Even in wealthier jurisdictions, patient



that should be prioritised by all healthcare systems. They were:

1. Campaigns to raise awareness of early signs of breast cancer

2. Improving data collection through the implementation of registries and monitoring systems

3. Ensuring early detection and (where adjudged cost-effective) fit-for-purpose screening

4. High-quality, multidisciplinary management and equitable access to care

5. Availability and awareness of the need for palliative care and pain control

An additional theme that was not so prominent in the literature, but is of increasing importance in the high-revenue countries, is the shift towards survivorship. Therefore to the five themes we added a sixth:

6. Long-term survivor support and openness to advocacy

These six themes (domains) formed the basis of the scorecard.

scoring The scorecard marks each domain from very weak (0 points) to very strong (8 points). The information used to mark each domain for each country came from national policy documents

aimThe Asia-Pacific breast cancer policy scorecard marks countries according to how well their breast cancer policy priorities follow evidence-based, best practice.

MethodsThe scorecard was developed through a review of the literature. Information specialists at EIU Healthcare searched across the grey literature and databases such as MEDLINE, Embase and the Cochrane Library to identify programmes and processes that had been used to prioritise policy approaches to breast cancer control. The review covered all areas of breast cancer policy, from awareness, prevention and early detection through management and access to care, to survivorship, palliation and end of life care.

After rounds of appraisal based on relevance, authority and reliable methodology, we extracted data from 14 documents. The WHO’s National Cancer Control Programme was included in the review, along with a series of articles by The Breast Health Global Initiative. The review also incorporated a number of cost-effectiveness studies, qualitative studies — based on interviews and surveys — and other literature reviews, both systematic and narrative.

Thematic analysis of the identified literature revealed five major areas of breast cancer policy

appendix: scorecard methodology



treated by multi-disciplinary teams, and 2) Are patients protected from extreme or “catastrophic” out-of-pocket expenditure on cancer treatment? Countries were marked for each indicator from 0 to 4, and the domain score was the sum of the two indicators. Catastrophic out-of-pocket expenditure was scored 0 where the majority of the population had no financial protection, up to four points for where there was substantial or full financial protection.

Long-term survivor support and openness to advocacy has two indicators: 1) Are survivorship programmes provided by health systems, and 2) What influence do survivors have on breast cancer policy? Countries were marked for each indicator from 0 to 4, and the domain score was the sum of the two indicators. Both scores for this domain were heavily influenced by the assessments of the schemes offered by the interviewees.

Palliative care has one indicator: The nation’s Quality of Death Index score was adapted to mark each country from 0 to 8. The Quality of Death Index was designed and populated by The EIU and is based on extensive research and interviews with over 120 palliative care experts from across the world (for more detail, see www.eiuperspectives.economist.com/healthcare/2015-quality-death-index).

Data collection has two indicators: the nation’s 1) incidence data quality score, and 2) mortality data quality score from Globocan 2012 were adapted to mark each country from 0 to 4. The domain score was the sum of the two indicators. This offered a proxy measure of the country’s cancer registries and monitoring systems. n

and cancer control plans, global or national NGOs, and the academic literature. Given the qualitative nature of the scorecard, the scores assigned represent a judgement based on the evidence available. All scores were also adjusted based on evidence from the expert interviews performed for the white paper; interviews were also used to fill in gaps where no published data were available. The final marks are therefore a combination of desk research and expert opinion — and should be viewed as indicative in nature. Domainsawareness-raising has two indicators: Established and ongoing publically funded national campaigns to promote awareness of 1) early signs of breast cancer, and 2) the fact that early detection improves cancer outcomes. Countries were marked for each indicator from 0 to 4, and the domain score was the sum of the two indicators. Scores ranged from 0 points, when there were no campaigns, up to four points per indicator for national, well established and evaluated campaigns.

early detection has two indicators: 1) The provision of an evidence based approach to screening programmes, and 2) universal, free or subsidised access to local diagnostic services for symptomatic women. Countries were marked for each indicator from 0 to 4, and the domain score was the sum of the two indicators. For the screening indicator, we focussed more on the robustness of the process of deciding whether to have a programme, rather than whether there was one or not.

treatment quality and access has two indicators: 1) Are cancer patients routinely

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