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Page 1: Breast cancer in São Paulo city, Brazil An assessment of ......90% in the US to 66% in India for women diagnosed.5 In Brazil, five year survival is towards the middle to lower end

Sponsored by

A report by The Economist Intelligence Unit

Breast cancer in São Paulo city, Brazil An assessment of the economic impact and insights from benchmarks

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BREAST CANCER IN SÃO PAULO CITY, BRAZILAN ASSESSMENT OF THE ECONOMIC IMPACT AND INSIGHTS FROM BENCHMARKS

© The Economist Intelligence Unit Limited 20181

1. Executive summary 3

2. Introduction 5

3. Methods 6

4. The economic burden of cancer in São Paulo 10

5. Barriers to effective breast cancer care 13

6. Benchmarks 18

7. Discussion 24

A. References 28

B. Literature search methods 33

C. Summary of treatment options 34

D. Model inputs for direct costs 35

Contents

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Experts providing assistance on this Project

l Dr Luiz Henrique Gebrim—Clinical Oncologist, Hospital Pérola Byington

l Dr Vilmar Marques de Oliveira—Clinical Oncologist, Santa Casa de São Paulo - Hospital Central

l Dr Gustavo Fernandes—President, Sociedade Brasileira de Oncologia Clinica, Brazil

l Professor Rodrigo Gonçalves—Instituto do Câncer do Estado de São Paulo

l Gustavo Albuquerque—Instituto do Câncer do Estado de São Paulo

l Sandra Gioia—The Brazilian National Cancer Institute (INCA)

l Dr João Bosco—Clinical Oncologist, Sociedade Brasileira de Mastologia Reg São Paulo

l Dr Pedro Henrique Arujo de Souza—Clinical Oncologist, Barretos Hospital

l Dr Bruce Mann—Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

Foreward

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The Economist Intelligence Unit (EIU) has been commissioned by the Instituto Avon to prepare this report estimating the economic impact of breast cancer for Brazil’s largest city, São Paulo. About

12 million people live in this city in the State of São Paulo, located in the southern part of Brazil. About 30% of Brazil’s breast cancer cases occur in the State of São Paulo.1

São Paulo city has some of the best facilities to treat breast cancer in Brazil, yet diagnosis is still often in the later stages. As well as estimating the direct and indirect costs of breast cancer in the city based on available data, we also provide insights on the current challenges facing patients, medical professionals, providers and policymakers. These insights were gained through interviewing oncology specialists and the available literature. We also present two benchmarks, one local and one international, which are providing good practice in breast cancer care, for comparison with São Paulo city.

This report draws these strands together to give an overview of the impact of the disease, and potential areas of improvement for São Paulo city.

Our key findings are as follows:

l We estimate the overall bill for breast cancer to be in the region of 880 million Real in São Paulo city. This includes 861 million Real attributable to direct costs and 19.5 million Real in indirect costs. The latter figure is largely driven by many women being diagnosed when they are of working age, resulting in productivity losses.

l Access to medical care needs to be improved in three key areas—Increased human resources, and increased access to medical equipment and drugs.

l Women need to be diagnosed earlier—While limited budgets and resources continue to restrict early diagnosis, efforts to promote greater awareness among women of the signs and symptoms of breast cancer to allow self-detection need to be ramped up, as well as making sure women are aware they are eligible for breast cancer screening. These could be relatively cost effective ways to improve early diagnosis.

l Partnerships between public/private institutions should be encouraged—This could provide a way to speed up access to diagnosis and treatment.

l Adequate budget needs to be available for adherence to breast cancer management guidelines—Healthcare budgets need to allow healthcare professionals to follow national management guidelines, as many women may not currently be receiving the optimal care these guidelines describe. Guidelines need to better focus limited resources on treatment and promote multidisciplinary care.

l Patient advocacy groups can play an important role—The message is clear, that breast cancer affects many women of working age and therefore the indirect costs are large, but awareness of this fact is lacking. Indirect costs of this disease could be lower if more women were supported to

1. Executive summary

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© The Economist Intelligence Unit Limited 20184

return to work. Advocacy groups are well-placed to meet this need but require support to take root. In addition, patient advocacy groups could have an important role in ensuring patients get access to important treatments and can successfully navigate a complicated system.

l Detection and treatment should not be considered the end of patient care—The needs of patients after they have been diagnosed and treated need more attention and more resources. This includes both improved support for palliative care and a dignified death, and meeting the needs breast cancer survivors.

l Improving data monitoring—São Paulo State has two cancer registries, the Population Based Cancer Registry, and Cancer Hospital Registry. However, despite the existence of these registries, the data they produce are not always used to consistently inform decision making. If the Brazilian Government is serious about an effective response to breast cancer, as well as all cancers, they need to invest in better surveillance. The reasons for which are twofold, to understand the challenge they face and to monitor the impact of any steps they take to address it.

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This report

B reast cancer is the most common cancer in women worldwide. Globally, a quarter of all new cancer diagnoses in women in 2012 were breast cancer—with colorectal cancer in a distant second

place (accounting for about 9% of diagnoses).2 In Brazil in 2016, there were estimated to be 57,960 new cases of breast cancer, representing 28.1% of all new cancer cases in Brazilian women, and an incidence of about 56.2 cases per 100,000 women.3

Breast cancer also accounts for a large proportion of deaths from cancer among women globally (about 15% in 2012). This equates to about half a million deaths annually.4 Five year survival rates are relatively high, but vary substantially between countries. In 2010-2014 these rates ranged from about 90% in the US to 66% in India for women diagnosed.5 In Brazil, five year survival is towards the middle to lower end of this spectrum, at 75%.5

There is, unfortunately, a clear breast cancer mortality gap between countries with differing levels of development and income. Although the incidence of breast cancer in South American countries is around half that of Northern European counties (around 52 per 100,000 compared with around 89 per 100,000 in 2012), mortality rates are similar (about 14 per 100,000 in South America and 16 per 100,000 in Northern Europe).2, 6 This underlines problems with access to health services in developing countries such as Brazil.6 The increasing incidence of breast cancer,7 combined with the incremental costs of emerging technologies8 places pressure on the Brazilian economy to find cost effective solutions to manage the disease, yet few studies have assessed its financial implications. Late diagnosis and barriers to early treatment once diagnosis is confirmed has considerable impact on this mortality gap, among other healthcare resource restrictions attributable to the political and financial economy.9, 10

Middle income countries like Brazil often have a two tiered health care system, in which access to diagnostic and therapeutic procedures differ greatly in the public and private healthcare systems.11 The public system (Sistema Único de Saúde (SUS)), on which around 75% of the Brazilian population rely for health care, unfortunately does not have the resources to diagnose and treat all the new cases of breast cancer.12 Unlike hospitals in developed countries, which provide most, if not all care a patient requires under one roof, in Brazil, these kinds of facilities are rare. Fragmented services, combined with an under-resourced healthcare system, makes navigating the care pathway an exhausting mission for patients who are already faced with physical illness and its psychological impact, causing further delays to timely treatment.13, 14

It is clearly important to look a little closer at the impact of this disease, and current strengths and weaknesses of those efforts to address it. For this project, we use an economic model to estimate the direct and indirect costs of breast cancer in São Paulo city, the largest city in Brazil. We also use insights from regional and international experts in breast cancer oncology, to inform suggestions about how breast cancer care in São Paulo could be improved.

2. Introduction

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We utilised four key approaches in preparing this report:

l a review of the literature (see Appendix B for additional detail on literature searches) to identify:¡ inputs for the economic model¡ information relating to the diagnosis and treatment pathway for breast cancer in Brazil¡ barriers to best quality care in São Paulo city or Brazil more widely¡ possible benchmarks

l description of two benchmarks providing good quality breast cancer care for comparison with São Paulo city: one Brazilian centre, and one country achieving good breast cancer survival rates

l interviews with experts in breast cancer care from São Paulo, and from the chosen benchmark Country, Australia

l economic modelling of the current and future direct and indirect costs of breast cancer in São Paulo city.

The methods used in the economic model are discussed further below.

Economic modelThe economic model estimates the direct health care spend on breast cancer diagnosis and treatment in São Paulo city. It is also estimates the important—but often overlooked—indirect costs of breast cancer. These typically consist of loss of work time while employees are ill and receiving treatment, and also loss of employees through early mortality associated with the disease. Lost productivity attributable to cancer significantly contributes to estimates of the overall impact of cancer in a population therefore it is important to capture this in our model.15

The model also forecasts trends in these costs over the next 5-years, based on the increase in healthcare spending per head trajectory, and the estimated increase in breast cancer incidence in this period.

Details of the treatment pathway for breast cancer in Brazil, and the corresponding model inputs were obtained from published data and literature where available. This was supplemented by information from local oncologists where needed.

Direct costsDirect costs are the costs associated with diagnosis and treatment for each patient. The direct costs we considered in this study were:

l Diagnosis ( including mammograms, computerised tomography (CT) scans, biopsies)

l Initial medical treatments ( including chemotherapy, radiotherapy, and targeted drug treatments)

l Surgery

l Maintenance treatment (hormone therapy)

l Palliative care

3. Methods

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IncidenceAs a basis for calculating the number of new breast cancer cases in São Paulo city, we used INCA’s most recent estimates,2 of 5,900 new cases of breast cancer in 2018.

Diagnosis per stage and treatment pathwayUnderstanding the staging of breast cancer is important for calculating its economic impact, because stage dictates the treatments a patient can receive, and this affects costs. Staging is based on how large the tumour is and how much it has spread to surrounding tissue, lymph nodes and the rest of the body. Table 2 gives brief characteristics of each stage and the treatments used at each stage. Appendix C gives a more detailed description of these treatment options.

For the economic model we used a treatment pathway which was based on guidelines from the Ministry of Health in Brazil,19 additional evidence from other published literature, and qualitative insights from oncologists delivering treatment to patients with breast cancer (see Appendix D).

The specific types of drugs and cycles of treatment received are largely dependent on the resources available in the hospital the patient is treated in. In reality, this is often a reflection of whether the hospital is a public or private sector hospital. To reproduce this, we calculated costs separately for patients accessing private and public sector hospitals, based on the estimate that 75% of the Brazilian population are covered by public health care insurance.

Table 1: Data sources for the economic modelStatistic Source Year(s) of data utilised

Incident cases Instituto Nacional de Câncer (INCA)3 2018 (estimates)

Proportion of breast cancer patients per stage

Silva et al. 201116

Liedke et al. 201417 2012-20132008-2009

Population in São Paulo city Brazilian Institute of Geography and Statistics (IBGE)18

2017

Treatment guidelines Brazilian Ministry of Health19 US National Comprehensive Cancer Network (NCCN)20

20152018

Health care spending per head Economist Intelligence Unit projections 2018-2022

Treatment costs public sector Departamento de Informática do SUS (DataSUS)21 Kaliks et al. 201312 Lee et al. 201222

2018

20132009-2011

Treatment costs private sector Brasindice table23 Hierarchical Brazilian Classification of Medical Procedures (CBHPM)24 Kaliks et al. 201312

20172005

2009-2011

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Table 3 gives the proportion of people estimated to be diagnosed at each stage in Brazil from the literature,17 and applies this to the estimated number of new breast cancer cases within São Paulo city in 2018. We also further divide these women into those receiving public and private healthcare.

We calculated the direct costs for women with breast cancer in São Paulo city in 2018 by estimating the annual per patient cost in the public and private sectors for diagnosis and treatment according to our understanding of the treatment pathway. We then multiplied these costs by the number of patients in each stage of breast cancer being treated in each sector, as outlined in Table 3.

Indirect costsThe costs associated with lost productivity due to employee disability and absence from work due to ill health among women with breast cancer are likely to be substantial.26 Estimating the indirect costs—from the impact of work absence and early mortality on economic output—involved looking at GDP per worker per day; breast cancer’s incidence overall and in specific age bands; and age-specific workforce participation rates.

In order to calculate the indirect costs of breast cancer we considered the impact in terms of nominal GDP loss due to work absence and early mortality for people who were part of the work force. Firstly, we used the number of women with breast cancer per age band and applied the Brazilian labour force participation rate for each age band27 to these numbers in order to calculate how many

Table 2: Treatments per stage of breast cancer25

Stage Description Treatment

Stage I & II Considered “early stage”, the tumour is still relatively small, and has not spread to the lymph nodes, or only to one or a few nearby lymph nodes. Stage II tumours are slightly larger than stage I, or have spread to slightly more lymph nodes

Treatment options for stages I-III are more or less the same and usually consist of surgery, radiation therapy, often along with chemotherapy or other drug therapies, either before or after surgery

Stage III Considered “locally advanced”, the tumour is slightly bigger, and/or has spread to nearby tissues, or to more lymph nodes, or lymph nodes slightly further away

Stage IV Considered “advanced” or “late stage”, these cancers have spread beyond the breast and nearby lymph nodes to other parts of the body (metastasised)

Stage IV cancers are not able to be cured through surgery, and therefore are usually treated with drug therapies (chemotherapy, hormone therapy, or targeted therapies alone or in combination)

Table 3: Split of breast cancer cases by stage at diagnosis17 Estimates for São Paulo City

Breast cancer stage

% diagnosed in each stage (public sector)

% diagnosed in each stage in the (private sector)

Number of cases treated in public sector

Number of cases treated in private sector

Stage I 15% 33% 662 487

Stage II 48% 47% 2,102 693

Stage III 33% 16% 1,438 236

Stage IV 6% 4% 243 62

Totals 100%* 100%* 4,425 1,478

*Rounding means figures appear to sum to more than 100%

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individuals with breast cancer would have been part of the working population. We then considered the days of productivity lost and chance of early mortality among these working women.

Work absence Women in the US who have a double mastectomy and breast reconstruction are more likely to miss a month or more of work than women who have a partial mastectomy.28 According to official reimbursement data from DataSUS, around 65% of women with breast cancer who have surgery receive double mastectomies in Brazil.22 Another US study found women treated for breast cancer missed a median of 22 days from work, and when treated with chemotherapy and surgery the median increased to 40 days missed.29 A study of Canadian breast cancer survivors found around 85% reported at least one work absence of four weeks in the first year after diagnosis.30 The average absence from work in the year after diagnosis in this study was 6 months.

In advanced (stage IV) breast cancer, 5 year survival in the US is about 22%.31 We used the proportion of people diagnosed in each stage of breast cancer, outlined in Table 3, to

calculate how many working individuals with breast cancer would be in the different cancer stages. Using these proportions, we made the following assumptions about those able to continue work after their diagnosis:

l All women with stages I-III breast cancer would be absent from work for four weeks in the first year after diagnosis

l Because only 22% of people with stage IV breast cancer are likely to survive for 5 years, we estimated that 22% of women diagnosed in this stage would be able to work, but 78% would not.

To work out the costs for work absences we considered the working population living with breast cancer per age band and per stage, and the associated number of days missed from work. By multiplying the days lost by the number of individuals in each age band and stage we got a total number of days lost from work. We then multiplied the days of absence from work by the daily gross domestic product (GDP) per member of the workforce for those employed in Brazil, which we calculate by taking the GDP per member of the workforce and dividing that by working days per year. From this combination of calculations we estimate productivity lost due to employee absence.

Early mortalityTo work out the costs associated with early mortality we assumed that 78% of individuals diagnosed in stage IV would lose their lives to breast cancer in the same year of diagnosis, meaning we assume a loss of 100% of productivity for 78% of women in stage IV who die. While these figures are likely to be an over-estimate (as they are based on 5 year survival), to balance this, the remaining 22% of women in stage IV were considered not to have any absences, which will be an under-estimate.

Based on this assumption we calculated the number of days lost due to early mortality for women with stage IV breast cancer by taking 78% of the total working days per year in Brazil (197 days), and multiplying this number of days by GDP per member of workforce.

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Direct costsTable 4 outlines the direct costs for the public and private healthcare sector in São Paulo city, stratified by stage of breast cancer. We estimated the overall direct cost of breast cancer in São Paulo city to be 861 million Brazilian Real in 2018. Before discussing the implications of this cost we first consider where these costs accrue.

The costs per patient for the public sector, as might be expected, are much lower than the per person costs in the private sector. This means that even though fewer women (25%) are treated in the private sector, overall costs are higher. The direct costs of breast cancer increase between stages I-III, and then drop when moving into stage IV. This is largely due to women with stage IV breast cancer not having as many surgeries and intensive treatment, particularly in the public sector where palliative care resources are sparse.

Indirect costs Figure 1 shows the total indirect costs for all stages of breast cancer, estimated to be around 19 million Real in 2018, 10 million (53%) of which is associated with work absence and 9 million (47%) associated with early mortality.

4. The economic burden of cancer in São Paulo city

Table 4: Cost of breast cancer in São Paulo city (costs in Brazilian Real) Stage of breast cancer % Women diagnosed

in each stageNew cases in São Paulo city 2018

Cost per patient Costs per stage for all women in São Paulo city

Public sector

Stages I 15% 642 29,776 19,105,122

Stage II 48% 2,102 29,776 62,585,743

Stage III 33% 1,439 128,673 185,047,518

Stage IV 6% 244 10,687 2,600,910

Public sector subtotals 100% 269,339,293

Private sector

Stage I 33% 487 415,167 202,082,651

Stage II 47% 693 415,167 287,814,685

Stage III 16% 236 369,393 87,176,737

Stage IV 4% 62 233,923 14,491,554

Private sector subtotals 100% 591,565,626

Overall total 860,904,919

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Total cost of breast cancer The total cost of breast cancer (direct and indirect costs) in 2018 in São Paulo city was estimated at 880 million Real. The vast majority of this price tag, 98%, was accrued from the direct costs, with just 2% accrued from the indirect costs.

Future trends We also modelled forecasted figures for the direct and indirect costs between 2018 and 2022. These estimations were based on extrapolating historical trends in:

l Population growth data from the World Bank32

l Healthcare spending per head33

The incidence of breast cancer below age 40 is fairly low (<5%), with rates beginning to increase after age 40, and are highest in women over 70.34 We therefore considered that changes in the annual number of breast cancer cases over time were likely to reflect changes in the number of women in these age groups. Population growth rates in Brazil for women over the age of 40, and over the age of 65 years are both around 4%. We assumed the number of breast cancer cases were likely to grow at a similar rate. We also used the growth rate of healthcare spend per head in Brazil between 2018-202235 to predict changes in the direct costs of breast cancer.

In figure 2 we summarise our estimates of the direct economic costs of breast cancer in São Paulo city up to 2022. We predict these to increase to 1.2Bn Real by 2022, an increase of 282 million from 2018. Table 5 outlines the projected increase in total cost of breast cancer (direct and indirect) from 2018 to 2022.

Source: The Economist Intelligence Unit.

Figure 1: Total indirect costs, 2018(Brazilian Real m)

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Source: The Economist Intelligence Unit.

Figure 2: Increase in the direct cost of breastcancer 2018-2022 in São Paulo city (Brazilian Real m)

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Table 5: Total cost of breast cancer from 2018 and 2022 in São Paulo (Real, Millions)Year 2018 2022

Direct costs 861 1,139

Indirect costs 19.5 23.1

Total cost 880 1,162

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Figure 3 shows the breakdown of indirect costs into those due to work absence and early mortality. Figure 4 demonstrates the considerable share of the overall price tag of breast cancer is attributable to the indirect costs compared to the direct costs.

Source: The Economist Intelligence Unit.

Figure 3: Indirect costs of breast cancer inSão Paulo city, 2018 to 2022(Brazilian Real m)

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Figure 4: Total direct and indirect costs inSão Paulo city, 2018-2022(Brazilian Real m)

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As well as estimating the cost of breast cancer, we identified some of the potential barriers to effective breast cancer care in São Paulo city and Brazil more widely, through both published

literature and interviews with oncologists working in the region. These barriers can give insight into both the direct costs of breast cancer, and also ways in which breast cancer care could be improved.

Need for earlier detectionAs reported above, only about two thirds of women with breast cancer in Brazil are diagnosed at an early stage (stages 0, I or II). As the disease progresses to later stages, it becomes more difficult to treat, and the chance of survival worsens ( in the US 5 year survival in stage IV is estimated to be 22%).31

In Brazil, as shown in table 3, about a third of breast cancers are diagnosed when they are locally advanced (stage III), and 9% when they are metastatic (stage IV), in cases where stage is known. This means that late stage diagnoses represent around 38% of total diagnoses in the public sector. By comparison, data from 2011 suggests that the corresponding figures in Australia for example are much lower, at about 13% and 5% respectively. This is likely to contribute to the disparity in 5-year survival—a stark contrast at about 75% for Brazil and 90% for Australia in figures for 2010-2014.

Extending early detection programs is difficult due to inequalities in healthcare access and coverage, limited funding, and inadequate infrastructure.36 These and other issues are discussed further below.

Inconsistent screening policiesDecisions about whether (and how) to offer screening for any condition requires an assessment of the balance of benefit and risk. This balance may differ in different age groups based on their baseline risk, as well as other factors such as their life expectancy. Practical considerations also need to be taken into account, such as availability and cost of equipment and trained staff, particularly when healthcare budgets are limited.

Often the judgments of different stakeholders or organisations about these complex issues differ, leading to controversy. A lack of consensus among professional bodies can be confusing for patients and health professionals. This situation exists in Brazil, where there is a lack of consistency in recommendations from different bodies relating to screening for breast cancer.

The Brazilian National Cancer Institute (INCA) and the Ministry of Health recommend screening mammography (digital or conventional) in women aged 50–69 years every two years.37 They do not recommend mammography screening outside of this age range (i.e. in those younger than 50 or aged 70 years or older) for women at average risk ( i.e. not those at high risk based on family history or known genetic mutations). This is because the evidence suggests that in younger women possible harms outweigh the possible benefits, and in older women this balance is unclear or likely to favour harms.

However, joint consensus guidelines from a group of Brazilian professional bodies including the Brazilian College of Radiology and Diagnostic Imaging advise annual mammography screening, preferably digital mammography, for women aged 40–74 years and also for women aged 75 years or

5. Barriers to effective breast cancer care

“From a medical point of view, mammography should be done every year because it reduces mortality but from the manager’s point of view it is not worth it since it would demand a large amount of resources and the government faces an already restrict constraint.”Dr Bosco, Specialist Doctor in breast disease, Sociedade Brasilera de Mastologia Regional SP

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older who have a life expectancy of seven years or more.38 This represents both an increased frequency of screening (annually as opposed to every two years) and an extension of the age range in which it is recommended compared to the Ministry of Health recommendations.

These inconsistencies may lead to confusion among practitioners, and could divert resources away from groups who may benefit most from screening. A survey carried out between 2010 and 2012 in Brazil, discovered that at national level, almost 40% of mammograms were performed in women aged 40-49—an age group in which mammography is not recommended by Ministry of Health guidelines.39 In a study of all women who died from breast cancer over the age of 15 in São Paulo state, increased mammography screening was associated with increased mortality.40 This suggests there is an underestimation of the risks associated with mammography screening.

Poor access to mammographySome evidence suggests that the shortage of mammography equipment is not the main problem in Brazil.

A survey conducted by the Brazilian Network of Research in Mastology suggested there were 4,228 mammogram machines in Brazil in 2013, with more than half of those being available in the public system.41 This represents about one machine per 50,000 inhabitants, far in excess of the one piece of mammogram equipment per 240,000 habitants recommended by the Ministry of Health in 2002.6 As national recommendations on screening were only first published in 2004, this 2002 requirement may underestimate need, but other evidence also supports that sufficient equipment is available.

Another study looking at SUS data found that 1,526 mammography machines were available within SUS in 2012.39 They estimated that the capacity of these machines was about 7.74 million exams per year, only just short of the 7.79 million exams they estimated were needed to meet the demands of the population. However, the total number of mammographies performed that year was just under 4 million.

Clearly the available machines are not being used to capacity. Why?The answer is likely to be complicated. Research in São Paulo metropolitan region in 2011 found

that about 6% of the mammography machines were not being used, in some cases because they were broken.42 Even the machines which were being used were not being used to full capacity, and records of the equipment available was not up to date.42

In addition, there are no centralised systems in place to support an organised screening programme.39 For example, there are no systems to keep a record of eligible women and issue them routine invitations for screening when it is due. This may limit uptake.

Other studies have suggested that another factor which limits access is the concentration of mammogram machines in more developed areas of Brazil.6, 22 The North and Northeast regions of Brazil are always at a disadvantage when compared to the South, Southeast and Midwest regions in terms of equipment availability (such as mammography equipment).39 There are also fewer medical specialists available to perform diagnostic and treatment procedures; as a result there are fewer procedures performed in this region.

In the North-eastern region of Brazil, mortality rates increased by 5.3% on average every year in the last decade, but declined slightly in other regions.43 As well as poorer access to diagnosis and treatment,

“If I could change one thing about breast cancer detection it would be to change opportunistic screening to organised screening.”Dr Gioia, Researcher, INCA

“The main method of screening for breast cancer is mammography. Despite the high frequency of breast cancer, there is still not a broad structure in Brazil that allows women assisted by SUS, which is the majority of Brazilians, to guarantee a decent level of care, focused not only on treatment but on early detection.”Dr Gioia, Researcher, INCA

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demographic development, changing lifestyles and associated risk factors may be another contributing factor to these disparities. For example, biological reasons may also play a part driven by Southern Brazil having mainly Caucasian Ancestry, while there is a mixed population of African, European and Indigenous ancestry in populations in North Eastern Brazil.43 Some research suggests increasing numbers of oestrogen breast tumours in African American, Hispanic and white women are linked with changing incidence of obesity and parity,44 thus increased mortality in the North-eastern regions. People of African ancestry have also more recently been linked to aggressive high grade oestrogen tumours at a younger age, thus have higher mortality rates compared to Caucasians.45-47

This issue may not be a major concern for São Paulo city, the largest city in Brazil, where resource availability is likely to be higher than other areas. This is supported by the fact that another key piece of breast cancer care equipment—radiotherapy machines—are much more plentiful in São Paulo state than the national average (6.01 versus 0.93 per million inhabitants respectively).1 However, awareness of better access to care in São Paulo city may result in increased burden for the city if women from nearby regions come to the city for treatment.

Inequity between public and private healthcare systemsThere are huge disparities between the care available in the public and the private healthcare system, which is a source of frustration for patients and oncologists alike.

In Brazil, analysis of women with breast cancer at one hospital found that having treatment paid for by SUS is associated with shorter survival.7 This was mostly down to women covered by SUS being diagnosed at later stages than women covered by private insurance.

This 20% statistic comes from research conducted in Brazil, published by the American Association of Cancer Research in 2009.48 This research used data from 28 cancer centres distributed throughout the country, and found: 20% of women were diagnosed with stage I (the “early” stage referred in the quote to above), 46.8% were diagnosed stage II, 24.6% stage III and 5.5% stage IV. Therefore, the proportions of women diagnosed per stage in this study quoted by Dr Gioia,48 are very similar to the staging data used to calculate the economic impact of breast cancer in this study.17

The rate of early diagnosis for women treated for breast cancer in private hospitals is quite different. A 2018 study looking at treatments received for 1,230 women with breast cancer in a private hospital in Brazil, found most people were diagnosed in early stages (79% stage I).11 In São Paulo specifically, another study found diagnosis of breast cancer in stage III and IV was found to be as high as 37% for women with public health insurance, compared to 16% in the private sector.10 A further study found that women with breast cancer treated in public hospitals had a significantly longer time between diagnosis and starting treatment than those who were not.49

“Even within Brazil, staging and survival statistics vary according to socio-demographic characteristics, such as the type of health insurance. Women treated in the public system present with the disease in more advanced stages than women in the private sector, and public sector patients have worse disease-free and overall survival, which may be partially attributed to the greater delay and advanced stages at the time of diagnosis.”Dr Gioia, Researcher, INCA

“In Brazil, only around 20% of breast cancers are diagnosed at an early stage of the disease, and women treated in the public health system present

unfavourable outcomes when compared to women treated in the private sector, with worse disease-free and overall survival outcomes.”

Dr Gioia, Researcher, INCA

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One study has suggested that public-private partnerships between the government and private hospitals may help to improve speed of access to treatment in Brazil.12 It suggested private hospitals could step in to assist public hospitals during the more critical phases of treatment where SUS has the most difficulty, such as rapid access to diagnosis, and surgery within 30 days of biopsy.

Delays in accessing treatment in the public sectorThe start of treatment for breast cancer is subject to significant delays in Brazil. To try to counter this, in 2012 the government issued the “60 Day Law”, which advises treatment for any type of cancer for patients in the public health system must begin within 60 days from the definitive diagnosis.50 Although this law is an important and well-intentioned effort to begin to reduce delays, surveillance of its implementation has been deficient. A survey of 59 public health institutions in Brazil discovered that The Cancer Information System (SISCAN), a database set up to monitor adherence to the 60 day law, was used in only one quarter of Brazilian municipalities, and only 1% patients with cancer.51

Although the statistics vary by region, a 2015 study that collected data from 239 hospitals in Brazil found 40% of women with breast cancer did not receive treatment within the 60 day period.49 This may in part be due to priority for treatment sometimes being given to women in the early stages of disease with a higher chance of cure, resulting in delays in treatment for women in late stage of disease.52-56 However, not all studies have supported this explanation. One found the contrary, that the time between diagnosis and treatment is longer for those with early stage disease.49

Another contributing factor may be that diagnostic mammography results are not prioritized over screening mammography results, causing delay in treatment.57

Lack of access to newer testing and treatments The optimal treatment for a woman’s breast cancer will depend on the molecular characteristics of her tumour—whether it is hormone (oestrogen and progesterone) receptor positive or negative, or HER2-positive or negative.

For example, about 15-20% of breast cancers produce abnormally high levels of a protein called HER2.58 These cancers are referred to as being “HER2-positive” and have worse prognosis than HER2-negative cancers. A number of targeted treatments, such as trastuzumab and lapatinib, have been developed specifically for HER2 positive cancers.

For treatments to be selected appropriately, molecular testing needs to be carried out on the tumours. One Brazilian study reported that some public laboratories in Brazil do not offer molecular testing, meaning that patients have to pay out of their own pockets if they wish to have it done at a private laboratory.59 Cities like Sao Paulo and Rio de Janeiro are exceptions to this rule and do have access to molecular tests, although there are known delays of around 30 days to receive the results.60

“The most important thing is not the treatments available for the patient to receive; it’s allowing the patient to receive the treatments that are available. Here [ in Brazil] we do not have a very good plan of breast screening, a woman usually comes to us as they feel a lump in the breast, after they see us, to see a specialist may take 6 months, which is a long time and will change her prognosis. The most important thing here in Brazil is to receive the treatment in a timely way. We have the treatments available, but patients do not have the opportunity to see a doctor.”Dr Marques, Specialist Doctor in breast disease, Hospital Santa Casa de São Paulo

“The molecular tests can identify sub classifications of the tumor more efficiently than pathologists. For example, if women in initial stages of breast cancer have this test, chemotherapy wouldn’t be necessary, and therefore, it

would save more resources to the ones who really need chemotherapy.”Dr Bosco, Specialist Doctor in breast disease, Sociedade Brasilera de Mastologia Regional SP

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There are also a number of newer molecular tests available which look at the activity of a range of genes in early stage breast cancers, to predict of risk of recurrence of the tumour after surgery. This information can be used to help women and their doctors to decide whether they should have adjuvant chemotherapy or not, to avoid potentially unnecessary treatment.

There is demand to improve access to molecular testing in Brazil, and targeted therapies for HER2 positive breast cancers.59

Lack of reliable data to inform planning and policy makingDatabases responsible for gathering information on breast cancer in Brazil are reported to be outdated, producing inaccurate and inconsistent statistical information and additional complications for health managers.57 There is an urgent need to improve the accuracy of data produced by population-based cancer registries in order to better plan cancer control.36

Limited access to palliative carePalliative care is underdeveloped in São Paulo city, and is usually managed by oncology units and medical oncologists rather than dedicated palliative care teams. Again, there is a disparity in access between public and private sectors.

Good palliative care is important to patients and their families, and if specialised palliative care services are available, and appropriately integrated into mainstream healthcare systems, this may reduce the inappropriate use of more expensive inpatient medical services.

“Only around 30% of patients needing palliative care in the public sector receive it compared to around 70% in the private sector.”Dr Goncalves, Professor, Instituto do Cancer do Estado de São Paulo

“Terminal treatment, is a very difficult situation here in Brazil, because you can’t keep your patient inside the hospital, you need to send them home, as we need to use the beds for patients in the earlier stages that require surgery etc.”

Dr Marques, Specialist Doctor in breast disease, Hospital Santa Casa de São Paulo

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Benchmarking is the comparison of different providers, organisations, or geographical areas, on indicators of quality. Analysing the range of performance in the indicator areas highlights

strengths and weaknesses of each organisation, facilitates goal setting based on what improvement is known to be possible, and identifies “high achievers” whose performance can be studied and emulated. The aim is to help identify and implement best practices at best cost.61

Cancer survival is one indicator of care quality. It has historically varied between countries, and if survival is particularly low in one country compared to others, especially for those with similar wealth, it can be an indicator that the health system is not functioning as it should.62

Survival rates for breast cancer can be very good, particularly when detected early, and appropriate treatments are available. For example, in the US the overall 5-year survival rate for breast cancer is about 90%. Their 5-year survival rate for women with stage I cancer is close to 100%, for stage II it is about 93%, and for stage III it is 72%.31 It is only when the cancer has spread to other parts of the body (stage IV) that it becomes much more difficult to treat, and 5-year survival rates drop to about 22%.31 Even then, there are many treatment options available. In countries where breast cancer is less likely to be detected early, or where access to treatment is more limited, prognosis is poorer.63

Unfortunately, the same treatment and excellent survival rates cannot be guaranteed in Brazil. While Brazil has developed a successful public health system, and achieved important gains for the population, there are many limitations, causing problems for patient treatment. In cancer care, this is largely due to the delayed diagnosis and therefore treatment at the earliest possible stage. There have been international efforts to reduce disparities in healthcare access in low and middle income countries,64 in the hope that this would in turn, reduce mortality from disease such as breast cancer. However these do not take into account individual needs, which vary from country to country.22

Choosing local and international benchmarks Benchmarking overall cancer survival ( including breast cancer survival) to identify countries performing well and those performing less well has been the focus of several, longitudinal, international studies spanning the years 2003-2018.5, 62, 65-69 These studies formed the basis for our selection of an international benchmark.

Table 6 summarises estimates for the countries with the highest 5-year survival, along with Brazil for comparison. The CONCORD working group compares international survival rates, and the EUROCARE working group compares European survival rates. The countries which perform consistently well are Australia, the US, Sweden, Finland and Japan. The two countries with the highest survival rates in the most recent data are the US and Australia. Despite the US having a slight edge, we choose to focus on Australia as the international benchmark for this study. Many of the cancer care guidelines in Brazil are already based on treatment guidelines from the US, so we hoped to offer new insight from Australian practices and guidelines. Secondly Australia has some similarities with Brazil in terms of having a hard to reach indigenous population.

6. Benchmarks

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Australian benchmarkAustralia’s breast cancer outcomes have shown substantial improvement over time, with the proportion of female total cancer mortality attributable to breast cancer decreasing from 19% in 1982 to 6.5% in 2016. Nowadays Australians diagnosed with cancer experience some of the highest cancer survival rates in the world, as evidenced by the GLOBOCAN data.

Expenditure on cancer by the Australian government, private health insurers, individuals and households increased by 56% between 2000-01 and 2008-09, from $2.9 billion to $4.5 billion. The government set up Cancer Australia in 2006 as the national cancer control agency; it aims to reduce the impact of cancer, address disparities, improve outcomes and inform effective and sustainable cancer care.70

Early diagnosisNationally organised population screening programmes for breast, cervical and bowel cancers have been effective and remain an important strategy in reducing incidence and mortality from these cancers in Australia.70

Table 6: Five year survival from key multi-country studies

CountryTime period

1990-1994 1995-1999 1999-2007 2010-14

Data source CONCORD69 EUROCARE-365 EUROCARE-462 EUROCARE-568 CONCORD5

Australia 80.7 — — — 89.5

US 83.7 — — — 90.2

Sweden 82.0 82.7 84.3 86.0 88.8

Finland 80.2 80.0 83.6 85.7 88.5

France 79.8 80.9 82.7 86.1 86.7

Netherlands 77.6 78.1 82.7 84.5 86.6

Canada 82.5 — — 88.2

Japan 81.6 — — 89.4

Brazil - - 58.4 — 75.2

“If you look at improvements of survival over the last 30 years, the two issues are early diagnosis and better multidisciplinary team (MDT) treatment, both of them work together and for a system to offer optimal outcomes it needs to address both of those things.”Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

“We have a national breast screening programme modelled on the UK/NHS programme that has been going for around 20 years. It has a broad public

acceptance that screening and early diagnoses are valuable, although there is some controversy about screening, particularly from some Scandinavian commentators regarding the harms of screening, but generally it’s accepted

that early screening is good. The government has established a national screening programme where all women 50-75 are invited to screening 2 yearly.

The participation rate in the BreastScreen Australia programme is ~56% of invited women, however a significant extra portion do undertake private

screening. One impact has been that the rate of late diagnosis is quite small.”Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

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The general idea around screening is that the earlier the condition is found, the easier it is to treat and therefore the better the chances of surviving it. Women are also less likely to need a mastectomy or chemotherapy if breast cancer is detected at an early stage. The main concerns around screening are that it can pick up cancers that would not have gone on to cause any symptoms or become life threatening. Because it is not possible to identify who this applies to, some women will end up having tests and treatment (and the ensuring side effects) for breast cancer that would never have otherwise caused them harm.71

Patient advocacyDirectly engaging women with breast cancer through advocacy groups, which provide support through sharing experiences, as well as clinical information and general education, has been an important part of effective breast cancer treatment in Australia. Advocacy groups have also played a role in informing women of the importance of breast cancer research and as a result facilitate enrolment into clinical trials.72 The Breast Cancer Network Australia (BCNA), is a national advocacy group which has been running since 1998, and is the main organisation for Australians affected by breast cancer. It has a network of more than 120,000 individual members and 300 member groups. It is one of the key organisations responsible for effective education and awareness of breast cancer in Australia.

A key focus of BCNA advocacy is to work with health policymakers and health service delivery to ensure all Australian’s receive equitable and affordable access to the latest and best practice. BCNA reaches out to its members by sending a “My journey kit” to all their members, outlining what cancer care entails and possible side effects, as well as medical and counselling contacts.73

“There is an organisation called the BCNA, which is a national advocacy organisation, to advocate for better cancer care. They have been fairly

effective in advocacy for high quality comprehensive care for all. The concept of the multidisciplinary team (MDT) was adopted in breast cancer very early, BCNA was part of it but not the only reason. It was implemented taking the

lead from the UK in many ways, to address the problem that in the past breast cancer was a surgical condition only, and a number of patients were not given

optimal treatment because their treating surgeon was not up to date, and denying effective treatments beyond surgery, so called adjuvant treatments.”

Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

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Helping patients to navigate their careSpecialist breast cancer nurses are also valued as a key aspect of breast cancer care in Australia:

These kinds of services help minimise the effects of institutional, socioeconomic, and other barriers to optimal patient care.13 Patient navigators aim to guide a patient’s pathway through diagnosis and treatment, ensure they get the referrals they need and continue to pursue their treatment. Studies have indicated that they improve time to confirmation of diagnosis and treatment.74, 75-77 Despite the impact patient navigation systems have had in developed healthcare systems, they have not been widely implemented in lower middle income countries such as Brazil.

There is a need for similar assistance for women with breast cancer in Brazil.

Tackling inequalityCancer Australia also tries to focus on populations which experience poorer health outcomes, including Aboriginal and Torres Straight Islander peoples and people living in rural and remote Australia.70 The reach to these populations is not perfect, with Aboriginal and Torres Strait Islander peoples being 6% more likely to be diagnosed with cancer and 50% more likely to die from cancer than non-indigenous Australians.

“So we have the nursing subspecialty of the breast care nurse, who plays a very complex role. It is partly patient navigation, as for effective and efficient treatment, surgery, medical oncology and radiation oncology, need to work

together. Expecting a patient to be able to do that unassisted is unreasonable. Our breast care nurses do a certain amount of the coordination of that care, and also focus on psychosocial care. How important are patient navigators? It depends on the structure of the treatment pathway. Where the structure is cancer centres or breast centres, where the multidisciplinary team work

in parallel then the patient navigator is less important, but when a patient is expected to get from a surgeon’s office to a medical oncologist’s office to a

radiation oncologist’s office in a coordinated manner, then assistance from a knowledgeable individual is needed.”

Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

“The problem in São Paulo is not the number of doctors, it is [patient] education. The patient does not know how to move through the public system. She does not know what kind of doctor she is looking for.”Dr Marques, Specialist Doctor in breast disease, Hospital Santa Casa de São Paulo

“We have a public private health system where, all legal residents are entitled to free care in a public hospital, and we have some requirements of the public

hospitals that urgent cases are done within 30 days. This means that for something like breast cancer even people with low resources can generally get access to high quality services at no costs. Therefore there are not the

economic barriers of some systems.” Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

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While there are both public and private hospitals in Australia, there are fewer disparities between them in terms of the services patients receive.

Brazilian Benchmark: Barretos Cancer HospitalAn important development for breast cancer treatment in Brazil was the introduction of mammography screening programmes. These were implemented in 2003 by the 5th Regional Health Administration of the State of São Paulo, and headquartered in Barretos. Barretos is a municipality in the northern part of the São Paulo State. Its hospital, the Barretos Cancer Hospital, is a non-profit health organisation which started a free breast screening programme for women aged 40-69 years living in the Barretos region, and 19 adjacent municipalities.78

The Barretos hospital treats cancer patients from all over Brazil, around 2,000 cities, and approximately 1,000 medical appointments are carried out daily. As such it is recognised as one of the most important organisations for the treatment and medical research of cancer in Brazil.79 It has also focused a lot of its efforts in the last few years into medical education and research.79 Because of its research focus, Barretos can offer treatments to patients above and beyond that of other public hospitals in Brazil.

The socioeconomic characteristics of patients treated in Barretos are particularly variable, due to wide range of risk factors and cultural norms in different Brazilian populations.79

“In Australia the two [public and private systems] are very closely associated and complimentary. Most of us, [doctors] work in both. The treatment

algorithms are the same in public and private. The main differences are the private patients get more of a choice over their surgeon, whereas the

public patients, it may be one surgeon or another or a trainee supervised the operation. As far as follow up is concerned, for private patients I will see them personally to manage their care whereas the public patients come to a clinic where the surgeons are working but supervising the care of a lot of patients. The public service are therefore high quality, but less personalised and the

patients have less control over who they see or when they see them.”

“There are essentially no differences between drug access between the public and private healthcare system for most cancer medications. There

are some medications that are available for sale but not nationally funded. These are often the new drugs. This means anyone is able to purchase one of these drugs if they wish but there is no government subsidy for it. It is an area where there is a lot of advocacy to get the new drugs funded. There is also a

new class of drugs called the CDK [cyclin dependent kinase] inhibitors, which is a substantial breakthrough in the treatment of advanced breast cancer.

They have been standard in the US for probably 18 months. They have been available for purchase in Australia for a while, but they have only just got a public subsidy. That subsidy has been delayed. Has this had an impact on

outcomes? Well a little bit, but in the big picture not very much.” Dr Bruce Mann, Professor of Surgery, The University of Melbourne, Director of Breast Tumour Stream

“Barretos works with treatment protocols other public hospitals can’t, including hormone therapy for post-menopausal cases, ovarian suppression, and provides the option of six lines of treatment with chemotherapy and hormone therapy for metastatic patients.”Dr Pedro Henrique Arujo de Souza, Clinical Oncologist, Barretos Hospital

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The diverse patient population reflects the reduced availability of healthcare services in rural areas. Generally, access to breast cancer screening outside of urban centres is fairly limited. In Brazil, a country where there is structural and economic diversity, the frequency of mammography varies dependent on the region. The North is generally reported to have a lower number of mammography examinations compared with higher numbers of examinations in the Southeast.10 Between 2003 and 2007, approximately 27,133 women aged 40-69 were screened as part of the Barretos Hospital’s breast cancer screening programme, which equated to around 50% of the population of women aged 40-69 years old in the Barretos region.80 Barretos hospital also offers mobile screening, to help reach out to people in the remote regions surrounding Barretos. One study recruiting 122,634 women visiting mobile screening units showed promising results. Screened cases had more favourable prognosis than clinically detected cases, with smaller tumours and a decreased risk of late stage detection.81

Aside from innovative approaches such as the use of mobile screening units, to provide access to those who live further away from hospitals, Barretos Cancer Hospital encounters some of the same issues as other public hospitals in Brazil—difficulties with early diagnosis and access to newer treatments.

“Although Barretos has an efficient tracking system, to ensure patients return for treatment, the current challenge is to ensure more patients are diagnosed early.”

“It is estimated 40% of all Barretos patients come from other states and regions of Brazil. Although this demonstrates the treatments are in high demand, this large concentration of patients also causes bottleneck problems. To resolve this, Barretos should establish partnerships with other regional hospitals in order to reduce the number of patients from other states and regions.”Dr Pedro Henrique Arujo de Souza, Clinical Oncologist, Barretos Hospital

“Although Barretos has an efficient tracking system, to ensure patients return for treatment, the current challenge is to ensure more patients are diagnosed

early.”

“Another challenge in Barretos, is to include new treatments into the public healthcare system, so patients do not have to use the judicial system in order

to access the treatments they need.” Dr Pedro Henrique Arujo de Souza, Clinical Oncologist, Barretos Hospital

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The burden of breast cancer in São Paulo city is considerable and growing due to demographic changes, particularly due to the aging population. Although early diagnosis and population-wide

access to evidence-based treatment are persistent recommendations from many stakeholders, they are unresolved problems.82

This report has identified the economic impact of breast cancer in São Paulo city and discovered some key barriers to effective breast cancer care, with many of them transferrable to Brazil as a whole. The economic model provides cost estimates and relevant information about the costs associated with the diagnosis and treatment of women with breast cancer. This model highlights the disparities between the public and the private healthcare sector, and the need to reduce these disparities. It also highlights the indirect costs associated with breast cancer, a figure which can’t be ignored. Addressing this human and economic burden of breast cancer means understanding what drives it. Our cost estimates are likely to under-estimate the need for spending on breast cancer. This is because some diagnoses are likely to be missed, and even women who are diagnosed do not always receive recommended treatments. Our figures remain the most reasonable ones available if used with suitable caution.

Our model estimates the economic impact of breast cancer for all stages, apart from stage 0. This is because a medical debate remains regarding the treatment of stage 0 breast cancer, referred to as Ductal Carcinoma in Situ (DCIS). Although some cases of DCIS may progress to invasive breast cancer, DCIS means there are abnormal cells in the milk ducts in the breast, but not any other breast tissue.83 However DCIS has varying malignant potential, and the science behind whether detecting and treating DCIS actually saves lives is under debate.83-86 For this reason, combined with the implication that many breast DCIS cases may be over treated and thus may overestimate overall costs of breast cancer treatment, we did not estimate the economic impact of stage 0 breast cancer in this report.

This should not blur the focus away from an emphasis on early detection of invasive breast cancer (stage I). The intent of early mammography programmes is to detect early invasive breast cancer, not to identify DCIS.84 If there was more medical certainty that all cases of DCIS progressed to invasive breast cancer, then it would be reasonable to assume that the treatment of screen-detected DCIS would result in fewer cases of women with invasive breast cancer. However, this has not happened in the UK (which we will refer to here as an example). The incidence of invasive breast cancer in the UK has in fact risen, rather than reduced, in the last few years following the introduction of screening 20 years ago.84 Additionally, the management of DCIS in the UK is a multi-disciplinary effort and takes up considerable health resource.83 One of the key recommendations arising from this research was to allocate more funding to the identification and treatment of early-stage invasive breast cancer, where availability of drug treatments, the number of doctors and radiotherapy machines fall short. These shortages currently make it very difficult to provide treatment for breast cancer as per clinical guidelines in São Paulo. Allocating more funding to the treatment of DCIS, when its clinical value remains under debate, is not currently economically viable in São Paulo.

7. Discussion

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There are clinical trials currently underway to investigate the value of treatment for DCIS, but there are no results for this as yet.83 Some studies have estimated the costs of treating DCIS. One US study found per patient costs of stage 0 breast cancer treatments were US$ $71,909, compared to $97,006, $159,442 and $182,655 for stage I/II, III and IV respectively.87 Stage 0 treatment costs equated to around 16% of the total per patient treatment costs in this study.

Considering the indirect costs estimates of breast cancer, which albeit rely on a few assumptions, the message is clear. The average lost wages if a household member develops breast cancer would overwhelm the finances of the family. The incidence of breast cancer is at its highest between the ages of 40-59,88 when the labour force participation rates are also high—ranging from 43% at the older end of this scale, and as high as 70% for women in their 40s.27 For diseases where the average age of onset is later, such as lung cancer (where incidence peaks at around age 65) the indirect costs would be much lower.

A recent study of patients treated in the private healthcare sector in Brazil, found treatments were closer to international recommendations, and managed to target patients at earlier stages than in the public sector. Treatment overall in the private sector is similar to that of developed countries in all stages of breast cancer.89 Of course these major improvements in the private sector reflect larger budgets, put perhaps more importantly, the budget to allow for following comprehensive treatment guidelines.

Larger budgets also allow for increased availability of specialised equipment, the dearth of which is a huge problem currently in the public healthcare sector in Brazil. The EIU’s 2017 Latin America Cancer Control Scorecard identified the same issue, which found that the Latin American countries with the worst economic status also have the poorest access to essential equipment for cancer diagnosis and treatment.90 The shortage of radiotherapy equipment in the public sector in Brazil is so significant, it is estimated over 5,000 deaths could be prevented in the most common cancer types if radiotherapy access was universal.91

Specialist human resources are also in major short supply. For example, between the years 2005—2013 in Brazil, only 150 nurses qualified as oncology specialists.92 This is problematic when the National Cancer Institute in Brazil predicted 300 nurses were required in São Paulo state alone to deal with the cancer burden.93

A third problem is access to newer drug treatments in the public sector. In Australia, where 5 year survival among women with breast cancer is high, there is essentially no difference between access in the public and private healthcare sectors. Also Australia’s increasing expenditure on cancer control and its improved outcomes highlights the importance of priority-driven investment to guide the optimal use of available resources and enable the health system to be respond to current and future challenges.70

There are a number of avenues which policy makers and health system authorities can consider for improving breast cancer care in Brazil:

l Improving access to high quality care in the public sector—most importantly through increasing human resources, access to medical equipment and newer drugs

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l Increasing early diagnosis—while limited budgets and resources continue to restrict early diagnosis, efforts to promote awareness of women about the signs and symptoms of breast cancer to allow self-detection, as well as their entitlement to breast cancer screening need to be ramped up and organised

l Encourage partnerships between public/private institutions—this could provide a way to speed up access to diagnosis and treatment

l Adequate budget needs to be available for adherence to breast cancer management guidelines—Healthcare budgets need to allow healthcare professionals to follow national management guidelines, as many women may not currently be receiving the optimal care these guidelines describe. Guidelines need to better focus limited resources on treatment and multidisciplinary care

l Improve patient-centred care—The economic message is clear, that breast cancer affects many women of working age and therefore the indirect costs are large, but further awareness of this fact is insufficient. The indirect costs of this disease could potentially be lower if more women were supported to return to work. Advocacy groups are well-placed to meet this need but require support to take root. In addition, patient advocacy groups could have an important role in ensuring patients get access to essential treatments and can successfully navigate a complicated system

l Improve availability of palliative care teams—The needs of patients after treatment need more attention, and more resources, whether this includes improved support in a dignified death or meeting the needs of living as a breast cancer survivor

l Improve data monitoring—São Paulo has two cancer registries, the Population Based Cancer Registry, and Cancer Hospital Registry. However experts question the completeness and quality of the data both these registries produce.1 The data these registries produce are also not being used in an organised manor to inform decision making. If the Brazilian Government is serious about an effective response to breast cancer, as well as all cancers, they need to invest in better surveillance, so they can understand the challenge they face.

LimitationsAs with all models that try to simplify complex realities there are limitations to our methods. Our model assumes the same treatment pathway for every patient, but in reality each patient is different, some patients want all the treatments they can get, while others avoid treatment altogether. For example, although breast cancer treatment for the earlier stages are fairly consistent patient to patient, in stage IV, the consensus among the best way to treat the cancer varies, and each patient presents with a unique survival rate.94 The economic impact from patient to patient with stage IV breast cancer is therefore likely to vary.

Although we largely used DataSUS information from São Paulo city, there were some treatment costs in the public and private sector that were taken from a national perspective (Brazil) therefore they are not localised. There are also some limitations to DataSUS data, as it is a secondary source of data, which is subject to some limitations such as inadequate completion of medical records and erroneous recording of disease diagnoses. DataSUS is also based on reimbursements rather than

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total expenditure of the hospitals.12 Our model would have been strengthened if real world, routinely collected data on the treatments received and associated costs were available to inform the model.

The proportion of the population that has private insurance and the proportion of the population that is covered by the public healthcare system were used as proxies for use of the private and public healthcare sectors for breast cancer treatment in each country. We believe this to be a fair assumption but also has limitations, as there are some people in the population are covered by both systems, making it difficult to know which system they use to treat breast cancer. In addition, our model does not consider out of pocket costs.

Our approach to choosing benchmark countries is useful in terms of establishing what works well in developed healthcare systems. However, differences in resources available and in the population characteristics (e.g. in terms of socio-demographics and health literacy) are likely to mean that not all solutions are transferable. Choosing an international benchmark based on 5-year survival rates also has its limitations, as they are reported from publically available population data. While they are very valuable statistics, they are quite high level and don’t provide a lot of detail of individual characteristics, so can’t predict what will happen in any particular person’s case. These statistics are also based on breast cancer when it was first diagnosed, and do not incorporate cancer that recurs or grows.31 Despite these limitations they provide the most comprehensive and reliable comparison across a wide range of countries, using unbiased population based data.

One, final limitation of our economic model is that there are some expenditures that could not be assessed, such as informal treatment costs from carers and some human resource costs. But the study maintains relevance, as it provides pioneering information on the main costs related to diagnosis and treatment of breast cancer in São Paulo city. Our costs and assumptions were also guided by oncologists working in the field who validated the treatment pathway which guided this study.

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57. Tomazelli JG, Migowski A, Ribeiro CM, et al. Avaliação das ações de detecção precoce do câncer de mama no Brasil por meio de indicadores de processo: estudo descritivo com dados do Sismama, 2010-2011. Epidemiologia e Serviços de Saúde. 2016;26:61-70.

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We searched both literature published in academic journals and material published online (grey literature). The search was not limited to São Paulo city or a specific benchmark organisation

or country, to maximise ability to capture wider good practice and methods used to assess the economic impact of breast cancer.

Searches were performed using the following databases/search engines:

l Embase.com (which covers Embase and Medline)

l PubMed

l Google and Google Scholar

The searches carried out were pragmatic and targeted to identifying the information required. The search strategies used key free text terms and database thesaurus terms (Emtree).

B. Literature search methods

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C. Summary of treatment options

Treatment options for a breast cancer patient in a developed healthcare systemNeo-adjuvant chemotherapy Aims to shrink the size of the tumour before surgery. Not suitable for all patients.

Uses the same range of chemotherapy drugs as adjuvant chemotherapy. Some patients may also be offered hormone therapy as another neo-adjuvant (i.e. pre-surgery) therapy.

Surgery Surgery is usually the first part of treatment for operable tumours, except in cases where the tumour is larger, in which case neo-adjuvant therapy may be recommended before surgery.The aim of surgery is to remove all cancer cells from the breast. Usually surgery also involves the removal of one or more lymph nodes from the armpit (axilla). The two main types of surgery are:• Breast conserving surgery: This involves the removal of part of the breast affected

by the cancer, but not the whole breast• Mastectomy: This involves the total removal of one (single mastectomy) or both

breasts (double mastectomy). Women may also have reconstructive surgery to restore the shape of the breast (usually following mastectomy).

Chemotherapy Chemotherapy is offered to some women in addition to surgery, radiotherapy, and/or hormonal therapy. More recently, molecular tests have been developed which can help predict the likelihood of an individual cancer recurring. These tests can be expensive so they are not standardly used. The results can feed into the decision about whether a patient may benefit from chemotherapy or other treatments.

Radiotherapy Radiotherapy involves the use of X-rays to destroy cancer cells that may be left in the breast and or/axilla after surgery. It is usually recommended for women who have breast-conserving surgery, and is sometimes used following a mastectomy to target any cancer cells that may remain in the chest wall. A CT scan is needed to target the area for radiotherapy.

Targeted therapy These drug therapies target specific proteins or enzymes that play a role in the growth of cancer cells. The best known is probably trastuzumab, which is used to treat HER2-positive breast cancers. Other targeted therapies available to treat HER2-positive metastatic breast cancer include pertuzumab, T-DM1 and lapatinib. These treatments are only useful for patients with HER2-positive breast cancers, which is around 15-20% of the population.

Hormone therapy Also called endocrine therapy. Around two thirds of breast cancers are hormone receptor positive, which means they need female hormones (oestrogen and/or progesterone) to grow and divide. Most women with hormone receptor positive breast cancer will be offered therapies which block these hormones.95

Adapted from the Breast Cancer Network Australia

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D. Model inputs for direct costsPublic sector Private sector

Cost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost per patient (Real)

Average cost per patient (USD)

Cost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost R

Average cost per patient (USD)

Stage I and IIInitial treatment (Diagnostic)Mammography 44.0 12.3 DataSUS 1 29% KOL 12.7 3.5 1237.6 346.7 CBHPM 1 100% KOL 1237.6 346.7PET Scan 906.8 254.0 Abrale 1 1% KOL 9.1 2.5 1400.8 392.4 CBHPM 1 76% KOL 1064.6 298.2CT scan 413.7 115.9 DataSUS 1 10% KOL 41.4 11.6 1374.5 385.0 Kalik (2013) 1 100% KOL 1374.5 385.0Biopsy 435.5 122.0 DataSUS 1 100% KOL 435.5 122.0 1880.7 526.8 Kalik (2013) 1 100% KOL 1880.7 526.8X-ray 9.5 2.7 DataSUS 1 100% KOL 9.5 2.7 1215.8 340.6 Kalik (2013) 1 20% KOL 243.2 68.1Breast ultrasound 24.2 6.8 DataSUS 1 60% KOL 14.5 4.1 117.68 33.0 CBHPM 1 20% KOL 23.5 6.6Breast MRI 268.8 75.3 DataSUS 1 2% KOL 5.4 1.5 1886.26 528.4 Kalik (2013) 1 80% KOL 1509.0 422.7FISH for HER2 400.0 112.0 Kalik

(2013)1 34% KOL 136.0 38.1 1890.0 529.4 Kalik (2013) 1 100% Kalic (2013) 1890.0 529.4

Bone scan 457.7 128.2 Kalik (2013)

1 60% KOL 274.6 76.9 538.9 150.9 Kalik (2013) 1 50% KOL 269.4 75.5

TreatmentNeoadjuvant treatment (before surgery)Neo adjuvant chemotherapy

58137.2 16284.9 DataSUS 1 10% Kaliks (2013)

5813.7 1628.5 41779.6 11703.0 brasindice table

6 30% KOL 73949.8 20714.2

HER2 56363.3 15788.0 KOL 1 5% KOL 2818.2 789.4 179494.1 50278.5 brasindice table

1 56% Simon et al (2009)

100516.7 28155.9

Hormone therapy (Tamoxifen)

79.8 22.3 DataSUS 12 5% Kaliks (2013)

47.9 13.4 547.5 153.4 Kalik (2013) 1 20% Assumption 109.5 30.7

SurgerySurgery/Partial breast removal

313.4 87.8 DataSUS 1 65% Lee et al (2012)

203.7 57.1 3500.0 980.4 2 55% Boukai et al (2018)

3857.0 1080.4

Surgery/mastectomy/Total breast removal

462.8 129.6 DataSUS 1 35% Lee et al (2012)

162.0 45.4 3500.0 980.4 Kalik (2013) 1 80% KOL 2800.0 784.3

Sentinel lymph node removel (Lymphadenectomy)

727.9 203.9 DataSUS 1 60% Simon et al (2009)

436.7 122.3 3500.0 980.4 1 58% Boukai et al (2018)

2030.0 568.6

Mastectomy and axillary lymphadenectomy

783.5 219.5 DataSUS 1 30% 235.1 65.8 3500.0 980.4 1 24% Boukai et al (2018)

840.0 235.3

Unilateral axilar linfadenectomy

1937.8 542.8 DataSUS 1 30% 581.3 162.8 3500.0 980.4 1 40% Assumption 1400.0 392.2

Adjuvant treatment (after surgery)Radiotherapy (not all patients)

737.9 206.7 Lee et al (2012)

25 70% NCCN 12913.8 3617.3 5040.0 1411.8 1 57% Boukai et al (2018)

2872.8 804.7

Breast reconstruction

1057.0 296.1 DataSUS 1 25% KOL 264.3 74.0 22644.5 6343.0 Kalik et al (2013)

1 61% Boukai et al (2018)

13813.1 3869.2

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Public sector Private sectorCost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost per patient BRL

Average cost per patient USD

Cost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost BRL

Average cost per patient USD

Stage I and IIAdjuvant Systemic drug therapyHER2 targeted therapy

56000.0 15686.3 KOL 1 6% KOL 3360.0 941.2 179404.1 50253.3 Brasindice table

1 55% Simon et al (2009)

98672.3 27639.3

Chemotherapy 2137.2 598.7 Lee et al (2012)

1 88% DataSUS 1880.7 526.8 41779.6 11703.0 Brasindice table

6 41% Boukai et al (2018)

103028.4 28859.5

Maintenance therapyHormone therapy (premenapausal women)

79.8 22.3 DataSUS 1 19% NICE 14.9 4.2 547.5 153.4 Kalik (2013) 1 19% NICE 102.2 28.6

Hormone therapy (postmenapausal women)

79.8 22.3 DataSUS 1 81% NICE 64.9 18.2 547.5 153.4 Kalik (2013) 1 81% NICE 445.3 124.7

Mammography 45.0 12.6 DataSUS 1 90% KOL 40.5 11.3 1237.6 346.7 CBHPM 1 100% KOL 1237.6 346.7Total (by stage): Total: 29,776.1 8,340.7 Total: 415,167.2 116,293.3 Stage III Initial treatment (diagnostic)Mammography 45.0 12.6 DataSUS 1 100% DataSUS 45.0 12.6 1237.56 346.7 CBHPM 1 100% KOL 1237.6 346.7PET Scan 906.8 254.0 Abrale 0 3% DataSUS 0.0 0.0 1400.77 392.4 CBHPM 1 5% KOL 70.0 19.6CT scan 413.7 115.9 DataSUS 1 90% DataSUS 372.3 104.3 1374.54 385.0 Kalik (2013) 1 100% KOL 1374.5 385.0Biopsy 435.5 122.0 DataSUS 1 100% DataSUS 435.5 122.0 1880.66 526.8 Kalik (2013) 1 100% KOL 1880.7 526.8X-ray 9.5 2.7 DataSUS 1 100% DataSUS 9.5 2.7 1213.97 340.0 Kalik (2013) 1 30% KOL 364.2 102.0Breast ultrasound 24.2 6.8 DataSUS 1 50% DataSUS 12.1 3.4 117.68 33.0 CBHPM 1 20% Assumption 23.5 6.6Breast MRI 268.8 75.3 DataSUS 1 10% DataSUS 26.9 7.5 1886.26 528.4 Kalik (2013) 1 65% KOL 1226.1 343.4FISH for HER2 400.0 112.0 Kalik

(2013)1 80% dataSUS 320.0 89.6 1890 529.4 Kalik (2013) 1 100% KOL 1890.0 529.4

Bone scan 457.7 128.2 1 90% 411.9 115.4 538.9 150.9 Kalik (2013) TreatmentNeoadjuvant treatment (before surgery)HER2 800.0 224.1 Simon et

al (2009)12 6% DataSUS 537.6 150.6 113231.2 31717.4 Brasindice

table1 55% Simon et al

(2009)62277.1 17444.6

Neo adjuvant chemotherapy

58137.2 16284.9 DataSUS 6 30% Kaliks (2013)

104647.0 29312.9 41779.6 11703.0 Brasindice table

6 50% Assumption 125338.7 35108.9

Hormone therapy (Tamoxifen)

79.8 22.3 DataSUS 12 10% Kaliks (2013)

95.7 26.8 547.5 153.4 Kalik (2013) 1 50% Assumption 273.8 76.7

Surgery/mastectomySurgery/Partial breast removal

313.4 87.8 Lee et al (2012)

1 35% DataSUS 109.7 30.7 3500.0 980.4 Brasindice table

1 20% 700.0 196.1

Surgery/mastectomy/Total breast removal

462.8 129.6 Lee et al (2012)

1 65% DataSUS 300.8 84.3 3500.0 980.4 Brasindice table

1 80% 2800.0 784.3

Sentinel lymph node removel (Lymphadenectomy)

727.9 203.9 Simon et al (2009)

1 16% DataSUS 115.7 32.4 3500.0 980.4 Brasindice table

1 80% 2800.0 784.3

Page 38: Breast cancer in São Paulo city, Brazil An assessment of ......90% in the US to 66% in India for women diagnosed.5 In Brazil, five year survival is towards the middle to lower end

Public sector Private sectorCost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost per patient BRL

Average cost per patient USD

Cost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost BRL

Average cost per patient USD

Stage III Surgery/mastectomyUnilateral axilar linfadenectomy

1937.8 542.8 ACS 1 85% DataSUS 1647.1 461.4 3500.0 980.4 Brasindice table

1 20% 700.0 196.1

Adjuvant treatment (after surgery)MedicinesRadiotherapy (not all patients)

737.9 206.7 DataSUS 25 95% DataSUS 17525.8 4909.2 5040.0 1411.8 Kalik (2013) 1 58% Boukai et al (2018)

2908.1 814.6

Chemotherapy 800.0 224.1 DataSUS 6 20% DataSUS 960.0 268.9 41779.6 11703.0 Brasindice table

6 41% Boukai et al (2018)

102777.7 28789.3

HER2 positive (15-25% of patients)

800.0 224.1 Simon et al (2009)

12 5% DataSUS 480.0 134.5 113231.2 31717.4 Brasindice table

1 55% Simon et al (2009)

62277.1 17444.6

Breast reconstruction

1669.0 467.5 DataSUS 1 30% Kaliks (2013)

500.7 140.3 22644.5 6343.0 Kalik et al (2013)

1 21% 4755.3 1332.0

Maintenance therapyHormone therapy (Premenopausal women)

79.8 22.3 DataSUS 1 19% NICE 14.9 4.2 547.5 153.4 Kalik (2013) 1 19% NICE 102.2 28.6

Hormone therapy (Postmenopausal women)

79.8 22.3 DataSUS 1 81% NICE 64.9 3.6 547.5 153.4 Kalik (2013) 1 81% NICE 445.3 124.7

Mammography 44.0 12.3 DataSUS 1 90% KOL 39.6 11.1 1237.6 346.7 CBHPM 1 100% KOL 1237.6 346.7Total (by stage): Total: 128,672.8 36,028.3 Total: 369,393.0 103,471.4 Stage IVInitial treatment (Diagnostic) Mammography 45.0 12.6 DataSUS 1 10% DataSUS 4.5 1.3 1237.6 346.7 CBHPM 1 100% KOL 1237.6 346.7PET Scan 906.8 254.0 Abrale 0 3% KOL 0.0 0.0 1400.8 392.4 CBHPM 1 5% KOL 70.0 19.6CT scan 413.7 115.9 DataSUS 1 95% DataSUS 393.0 110.1 1374.5 385.0 Kalik (2013) 1 100% KOL 1374.5 385.0Biopsy 435.5 122.0 DataSUS 1 100% DataSUS 435.5 122.0 1880.7 526.8 Kalik (2013) 1 100% KOL 1880.7 526.8X-ray 9.5 2.7 DataSUS 1 100% DataSUS 9.5 2.7 1213.97 340.0 Kalik (2013) 1 30% KOL 364.2 102.0Breast ultrasound 24.2 6.8 DataSUS 1 50% DataSUS 12.1 3.4 117.68 33.0 CBHPM 1 10% KOL 11.8 3.3Breast MRI 268.8 75.3 DataSUS 1 10% DataSUS 26.9 7.5 1886.26 528.4 Kalik (2013) 1 65% KOL 1226.1 343.4FISH for HER2 400.0 112.0 Kalik

(2013)1 80% DataSUS 320.0 89.6 1890 529.4 Kalik (2013) 1 100% KOL 1890.0 529.4

Bone scan 457.6 128.2 1 95% KOL 434.7 121.8 538.9 150.9 Kalik (2013) Surgery (to manage symptoms)

417.7 117.0 DataSUS 1 10% DataSUS 41.8 11.7 3500 980.4 Brasindice table

1 50% Assumption 1750.0 490.2

Radiotherapy (not all patients)

737.9 206.7 DataSUS 25 25% DataSUS 4612.1 1291.9 5040.0 1411.8 Kalik (2013) 1 30% Assumption 1512.0 423.5

MedicinesFirst line chemotherapy

1700.0 476.2 DataSUS 1 100% DataSUS 1700.0 476.2 13523.7 3788.1 Brasindice table

6 100% Assumption 81142.1 22728.9

Second line chemotherapy

2378.9 666.4 DataSUS 1 80% DataSUS 1903.1 533.1 13523.7 3788.1 Brasindice table

6 100% Assumption 81142.1 22728.9

Page 39: Breast cancer in São Paulo city, Brazil An assessment of ......90% in the US to 66% in India for women diagnosed.5 In Brazil, five year survival is towards the middle to lower end

Public sector Private sectorCost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost per patient BRL

Average cost per patient USD

Cost in BRL

Cost in USD

Source # per patient per year

Frequency (%)

Source Average cost BRL

Average cost per patient USD

Stage IVMedicinesThird line chemotherapy

- - - - - - - 3188.4 893.1 Brasindice table

6 80% Assumption

First line Hormone therapy

79.8 22.3 DataSUS 1 100% DataSUS 79.8 22.3 547.5 153.4 Brasindice table

1 79% Miller et al (2016)

432.5 121.2

Second line Hormone therapy

301.5 84.5 DataSUS 1 80% DataSUS 241.2 67.6 547.5 153.4 Brasindice table

1 59% Assumption 323.0 90.5

Third line Hormone therapy

547.5 153.4 Brasindice table

1 49% Assumption 268.3 75.1

Maintenance treatmentHormone therapy for 5 years (Premenopausal women)

79.8 22.3 DataSUS 1 19% NICE 14.9 4.2 547.5 153.4 Kalik (2013) 1 19% NICE 102.2 28.6

Hormone therapy for 5 years (Postmenopasal women)

79.8 22.3 DataSUS 1 81% NICE 64.9 18.2 547.5 153.4 Kalik (2013) 1 81% NICE 445.3 124.7

Total (by stage): Total: 10,293.9 2,883.4 Total: 175,172.3 49,067.9 Terminal treatmentComplex planning 120.0 33.6 DataSUS 1 30% DataSUS 36.0 10.1 14382.3 4028.7 Kalik (2013) 7 50% Assumption 50338.1 14100.3Radiation therapy 737.9 206.7 DataSUS 25 1% Kalik

(2013)184.5 51.7 2840.5 795.7 Kalik (2013) 25 4% Kalik (2013) 2627.5 736.0

Chemotherapy 2378.0 666.1 DataSUS 7 1% Kalik (2013)

166.5 46.6 13523.7 3788.1 Brasindice table

7 6% Boukai et al (2016)

5774.6 1617.5

Hormonal therapy 301.5 84.5 DataSUS 2 1% Kalik (2013)

6.0 1.7 547.5 153.4 Brasindice table

1 10% Boukai et al (2016)

11.0 3.1

Total (by stage): Total: 393.0 110.1 Total: 58,751.1 16,456.9 Total

Palliative10,686.8 2,993.5 Total

Palliative233,923.4 65,524.8

Overall total Total: 168,197.2 47,099.5 Total: 1,018,483.6 285,289.5 KOL: key opinion leaders

Page 40: Breast cancer in São Paulo city, Brazil An assessment of ......90% in the US to 66% in India for women diagnosed.5 In Brazil, five year survival is towards the middle to lower end

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© 2018 The Economist Intelligence Unit Limited. All rights reserved. Neither this publication nor any part of it may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without the prior permission of The Economist Intelligence Unit Limited.

While every effort has been taken to verify the accuracy of this information, The Economist Intelligence Unit Ltd. cannot accept any responsibility or liability for reliance by any person on this report or any of the information, opinions or conclusions set out in this report.

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