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The Burden of Cancer In Developing Countries A Global Health Council Report on the Cancer Advocacy and Learning Institute June 2010


Acknowledgements The Global Health Council gratefully acknowledges the support of Novartis Pharmaceuticals Corporation in producing this report and sponsoring the broader Cancer Control Advocacy and Learning Initiative. The Council thanks Rosanna Setse, who conducted the literature review; and Loyce Pace Bass, Jacqui Drope, Silvana Luciani, Mary Sibley and Viji Venkatesh, who spoke at events and reviewed sections of this report. The Council also thanks all those who participated in the focus groups and working group meetings. We value the input and ideas of all those who took part in this project and look forward to working with you in the future. This report was written by Susan Higman, Director of Research and Analysis, the Global Health Council, and reviewed by Jeffrey Sturchio, President and CEO, Global Health Council. GHC is a 501(c)(3) nonprofit membership organization that is funded through membership dues and grants from foundations, corporations, and private individuals. The opinions expressed herein do not necessarily reflect the views of GHC. This report is provided as a resource for GHC’s members, journalists, educators, and other stakeholders in vaccine issues in order to help them better understand global health issues and policy choices. For further information about GHC or this report, please call our Washington office at 202-833-5900 or e-mail us at research@globalhealth.org. Visit our website, www.globalhealth.org Copyright Š 2010 by the Global Health Council All rights reserved. Printed in the United States of America.


The Burden of Cancer In Developing Countries The burden of cancer in developing countries: executive summary

1

The scenario in developing countries

1

Where does cancer fit in the global health context?

3

Research priorities

3

Policy priorities

4

The link between cancer, reproductive health and infectious diseases: summary of a literature review

6

Cancers and infectious diseases

7

Cancers and reproductive health

12

Conclusions

16

What are people saying about cancer in developing countries?

23

Learning from the experts: the focus group sessions

23

The view from the field: a survey of cancer-related activities

30

Setting the policy and research agendas: notes from the cancer working group

39

Understanding the burden of cancer in developing countries

50

Fighting an unpopular war and responding to the growing problem of tobacco use

50

Cervical cancer in Latin America & the Caribbean

55

A picture of cancer in India

59

Using technology and social media to support patient advocacy

63

Conclusions and next steps Next steps for the Global Health Council

65 66


The Burden Of Cancer In Developing Countries: Executive Summary

I

n 2009, The Global Health Council established the Cancer Control Advocacy and Learning Initiative, a project to raise awareness about the burden of cancer in developing countries and to develop policy, advocacy and research agendas to guide the global health community’s work on this topic of increasing concern. The Initiative included a critical review of the peer-reviewed

literature on cancers associated with reproductive health and with infectious diseases; focus groups with CEOs, academic leaders, and program implementers; an online survey with 174 respondents; working group meetings with community partners; and a panel discussion on the burden of cancer in developing countries.

The scenario in developing countries In 2009, there were an estimated 12.9 million cases of cancer worldwide.1 Like infectious diseases and maternal, child and reproductive health issues, cancer is a growing health problem in developing countries. The global cancer burden has doubled in past 30 years; further, by 2020, the cancer burden of 2000 is expected to double again.2 Currently, more than half of the cancer burden is borne by low- or middle-income countries.3;4 In 2007, 72 percent of cancer deaths occurred in developing countries.5 By 2020, 60 percent of new cases are expected to be in the least developed countries; this differs drastically from 1970, when only 15 percent of reported new cancer cases occurred in developing countries.2;5 An estimated 4.8 million people in less developed countries died of cancer in 2008, with more than 7 million new cases reported.6 The leading types of cancers in less developed countries are: Type

Men

Women

Total

Incidence (in 1000s)

Deaths (in 1000s)

Incidence (in 1000s)

Deaths (in 1000s)

Incidence (in 1000s)

Deaths (in 1000s)

Lung

612

539

272

239

884

778

Stomach

467

353

247

203

714

556

Liver

441

403

186

178

627

581

Esophageal

263

223

138

116

401

339

Cervical

453

242

453

242

Breast

691

269

691

269

232

134

506

288

255

122

4,531

3,175

Colorectal

274

154

Prostate

255

122

TOTAL

2,312

1,794

2,219

1,381

The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 1


In 2002, 1.9 million cases of cancer were attributable to infectious agents.7 Cancers due to infectious diseases account for 8-10 percent of cancers in high-income countries, but 20-26 percent of cancers in developing countries.4;8 Among the viruses and bacteria associated with cancer are:9 ŠŠHuman papilloma virus—cervical cancer ŠŠHepatitis B & C viruses—liver cancer ŠŠH. pylori (bacteria)—stomach cancer ŠŠEpstein-Barr virus—Burkitt’s lymphoma and nasopharyngeal cancer ŠŠHIV—Kaposi’s sarcoma and other lymphomas ŠŠHerpes virus 8 & T-lymphotropic viruses—adult T-cell leukemia and other lymphomas In addition to infectious diseases, many reproductive health diseases are associated with cancer.10 For example, breast cancer is the most common cancer among women and second most common cancer worldwide. Breast cancer is increasing in developing countries and is more aggressive in those countries than it is in high-income countries. Cervical cancer is at the intersection of infectious diseases (human papilloma virus), reproductive health and cancer. It is a prevalent disease and significant challenge in developing countries. Endometrial, ovarian and prostate cancers are also problematic. Cancer has been increasing in developing countries for a number of reasons. Lifestyle changes (e.g., changes in diet, weight gain and use of tobacco) have contributed to the increase.9;11 Environmental exposures, increased life expectancy, population growth and emerging or problematic infectious diseases also have contributed to an increase in the number of cases. Lack of health care services, in terms of both a primary care system that includes prevention and early screening services and routine reproductive health care, have also contributed to the more severe nature of cancers detected in developing countries. In addition to actual increases in cancer incidence, prevalence and deaths in developing countries, some of the increase may be an artifact of increased reporting and data collection; the proportion attributable to better data collection is unclear. Some of the risk factors that contribute to the cancer burden are modifiable; others are not.11 Some factors require systemic change; others rely on individual change. Behavioral factors (e.g., unsafe sex; lack of physical activity, use of tobacco or alcohol, an unhealthy diet of high fat foods and obesity are, to a varying degree, modifiable and individual risks. Food contaminants, ultraviolet or ionizing radiation and occupational or environmental exposure may be modifiable but require a more systematic response. Factors that cannot be changed are the higher risks associated with aging, ethnicity or race, heredity and gender issues. The medical and non-medical costs of cancer (e.g., impact on labor productivity) totaled US$ 286 billion in 2009. About 5 percent of global cancer resources were allocated to developing countries, despite the growing cancer burden. The chronic nature of cancer requires a long-term investment of resources and a delivery system that can sustain continuity of care and provision of palliative care. Compared to infectious diseases or maternal and child health conditions often faced in developing 2 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


countries, cancer and chronic diseases require different tools/equipment, training and medicines, negotiating with different actors, and partnering in different ways.

Where does cancer fit in the global health context? „„ From the focus groups and online survey, there is clear consensus that cancer is a significant and growing problem in developing countries. yy More than 60 percent of survey respondents noted that the emerging cancer burden was a very important or extremely important topic in global health; yy About 70 percent rated chronic diseases as very important or extremely important. yy Nearly 60 percent believed chronic diseases should receive the same level of attention in developing countries as infectious diseases and maternal and child health issues. „„ Although some facilities and NGOs in developing countries address the full scope of cancer, others focus on specific types of cancers—for example, cervical cancer services at reproductive health clinics or studies on breast cancer in certain populations. „„ There is debate about whether to focus messaging on specific types of cancer or to promote health systems. „„ There is a need for more detailed and geographically specific data; variations in disease burden exist not only between countries but also within countries. „„ Stigma, lack of funding and lack of infrastructure are problematic—stakeholders do not often address chronic diseases. „„ There are tough choices to be made in terms of treatment and care options and distribution of resources, e.g., is screening without treatment an ethical course? Is palliative care all that can be offered to some people? „„ Meeting global cancer needs will require new sources of funding and a greater focus of activity—from basic research to delivery of services; from coordination among stakeholders to political will within countries and communities. „„ Among survey respondents who work on cancer, lack of health care infrastructure and lack of political will were the most cited barriers to providing cancer-related services.

Research priorities „„ Develop metrics and indicators. It is important to identify the outputs and outcomes of cancer-related projects, and to examine patient impact. Early metrics of success are essential to measure not only a program’s outputs (e.g., number of cancer cases diagnosed) but also health outcomes—does the program/diagnostic tool/medication, etc. actually improve health and reduce the disease burden? Which aspects of the programs work (or do not work)? The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 3


„„ Promote workforce and research capacity. Building capacity within national institutions can prevent health care workforce migration to developed countries. There is a need to train both researchers and health care workers to conduct research related to cancer programming and interventions. There is also a need to conduct research on the most appropriate configuration of health care workers to address the cancer burden and their ability to reach people through medical and social interventions. In addition, horizontal (cross-cutting) capacity building is essential to address fully the cancer disease burden. „„ Instill a research focus. A research ethic needs to be implemented within cancer service delivery programs and interventions. Research needs for program and outcome assessment should be identified in grant proposals—currently research-related components are frequently removed. „„ Focus on the link with infectious diseases. By focusing on infectious diseases, many cancers can be identified. For example, a surprising number of people in both the developed and developing world do not realize that people living with HIV can develop certain cancers because they have HIV; the link between cervical cancer and human papilloma virus provides opportunities for intervention. „„ Draw attention to the economic issues. Cancer is not just a health cost but an economic cost, as it strikes younger members of the workforce, who may be forced into early retirement, as well as the elderly. This has an economic impact on the community.

Policy priorities „„ Focus on the “fixable.” Increased funding for the cancers that a) are most problematic and b) have potential for progress. The four cancers that can be treated, even in developing countries, and are prevalent in several regions of the world are: cervical cancer, smokingrelated cancers, breast cancer, and liver cancer. „„ Promote capacity building. Ministries of Health, Education and Finance need to be engaged in developing and supporting national plans that include: training personnel with the necessary skills to diagnose and treat cancer patients, strengthening medical institutions and diagnostic laboratories, addressing service delivery and access issues, developing country-level and country-led initiatives, facilitating the development of specialized cancer centers, and fostering sustainable programs. „„ Develop effective cancer surveillance. More useful cancer data are important for the development of programs that address disease, to measure progress achieved by 4 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


interventions, and to better understand both the burden of disease and needed responses. Without a standard set of metrics and methodologies, addressing the scale and scope of chronic diseases in developing countries will likely remain on the “back burner” as more pressing needs take center stage. „„ Focus on locally relevant approaches. Using a combination of local resources and external partnerships, programs and models can draw on local interventions that address other diseases, education, behavior change, community development, and other issues. This approach can highlight best practices to develop a cancer response that is sustainable and multisectoral, reinforcing the most promising locally appropriate programs and models. „„ Emphasize information sharing and awareness raising. Advocacy efforts should focus on increasing cancer awareness on a global scale by engaging donors, decision makers and government officials in both high-income and developing countries, journalists who report on global health issues, and other stakeholders. Awareness-raising campaigns should promote key internal leaders, program implementers, patients or clients, families and others who can deliver an effective message about the importance of addressing cancer and chronic diseases in developing countries.

References 1. Economist Intelligence Unit. The global burden of cancer—challenges and opportunities; 2009 November 15, 2009. 2. Boyle P, Levin B. World cancer report. Lyon: International Agency for Research on Cancer; 2008. 3. Boyle P. The globalisation of cancer. Lancet. 2006;368(9536):629-30. 4. Fontham ET. Infectious diseases and global cancer control. CA: A Cancer Journal for Clinicians. 2009;59(1):5-7. 5. Kachroo S, Etzel CJ. Decreasing the cancer burden in developing countries: concerns and recommendations. European Journal of Cancer Care. 2009;18(1):18-21. 6. International Agency for Research on Cancer. GLOBOCAN 2008. [cited June 4, 2010]; Available from: http:// globocan.iarc.fr/factsheets/populations/factsheet.asp?uno=902 7. Parkin DM. The global health burden of infection-associated cancers in the year 2002. International Journal of Cancer. 2006;118(12):3030-44. 8. Pisani P, et al. Cancer and infection: estimates of the attributable fraction in 1990. Cancer Epidemiology, Biomarkers & Prevention. 1997;6(6):387-400. 9. Ngoma T. World Health Organization cancer priorities in developing countries. Annals of Oncology. 2006;17(Suppl. 8):viii9-viii14. 10. Berer M. Reproductive cancers: high burden of disease; low level of priority. Reproductive Health Matters. 2008;16(32):4-8. 11. Mackay J, Ahmedin Jemal A, Nancy C. Lee NC, Parkin DM. The cancer atlas. Atlanta, GA: American Cancer Society; 2006.

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The Link Between Cancer, Reproductive Health and Infectious Diseases: Summary of a Literature Review Literature review conducted by Rosanna Setse, MD, PhD for the Global Health Council

A

lthough the 21st century has seen remarkable advances in early cancer detection, treatment and prevention, the incidence, prevalence and mortality rates for all types of cancers have increased worldwide.1 According to the most recent edition of the World Health Organization’s (WHO) World Cancer Report, the global cancer burden doubled

in the last thirty years and is estimated to double again between 2000 and 2020 and nearly triple by 2030.2 Worse still, there are large disparities in the global cancer burden. Until recently, cancer

was considered a disease of Western, industrialized countries. However, the situation has changed considerably, with more than half of the global cancer burden now borne by developing countries (i.e., those with low- and medium-income economies).3;4 The WHO estimates that in 2007, about 72 percent of all cancer deaths occurred in low- and middleincome countries. By 2020, an estimated 60 percent of all new cancer cases will occur in the least developed nations (i.e., the subset of poorest countries).1 In contrast, in 1970, the developing world accounted for only 15 percent of newly reported cancers.2 A similar but less bleak picture is painted for developing countries by the GLOBOCAN 2000 report, which estimates that age-standardized rates of all cancers (excluding skin cancer) in developed countries are about twice those in developing countries.5 However, these estimates depend on the availability of data on cancer incidence and/ or mortality at the country level; thus, the accuracy between countries differs depending on the availability of data locally. In addition to limitations in data quality and availability in past years, the increasing incidence of cancers in developing countries is largely attributable to changes in risk factors and lifestyles associated with economic development, as well as the continuing threat of cancers caused by infectious diseases.6 Risk factors and lifestyle modifications include changes in diet, more crowded living conditions and an increase in tobacco use in developing countries. In 2002, approximately 1.9 million cancer cases were attributable to infections worldwide.7 Although infectious diseases are estimated to cause up to 10 percent of cancers in high resource/developed countries (where 16 percent of the world’s population resides), they account for 20 to 26 percent of all cancers in developing countries (where 84 percent of the world’s population resides).4;8 A significant portion of cancers worldwide are also associated with reproductive health. Unfortunately, this problem has been 6 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


neglected by the scientific community until recently, resulting in limited data on the epidemiology of reproductive health cancers in developing countries.9 Disparities in costs associated with cancers also exist. In 2009, an estimated 12.9 million new cases of cancer occurred worldwide, with an estimated economic cost estimated of US$286 billion.10 This includes medical and non-medical costs, such as productivity losses that result from time away from work. This situation undoubtedly threatens to compound matters for developing countries, where resources are limited and only 5 percent of global resources to fight cancer are spent. Other challenges to cancer control in developing countries include inadequate health systems infrastructure, scarcity of necessary specialized skills, high diagnostic and treatment costs, and the inability to provide necessary treatment regimens and follow-up care for cancer patients.

Cancers and infectious diseases The association between infectious agents and cancers has been well documented. An estimated 15 to 20 percent of all cancers in humans are associated with infections, primarily caused by viruses, though some bacterial infections are also associated with cancer.11;12 The most common oncogenic infections include human papilloma viruses (associated with cervical cancer and other skin cancers), hepatitis B virus (associated with liver cancer), Helicobacter pylori (associated with stomach cancer) and Epstein-Barr virus (associated with Burkitt’s lymphoma and nasopharyngeal carcinoma). Human papilloma viruses and cervical cancer. Cervical cancer is the seventh most common cancer worldwide and the second most common cancer among women. In 2002, an estimated 493,000 new cases and 274,000 deaths from cervical cancer occurred worldwide.13 More than 80 percent of cervical cancer cases occur in developing countries.14-17 It is now widely accepted that human papilloma virus (HPV) infection is a necessary cause of invasive cervical cancer.18-20 HPV is a sexually transmitted infection that invades cells in the cervix; the abnormal cells progress to form pre-cancerous lesions and then malignant tumors over the course of months or years. Factors that increase the risk of HPV acquisition include early age onset of sexual activity, high-risk sexual behavior and low socio-economic status. Other cofactors (e.g., high parity, tobacco smoking, and use of oral contraceptives) likely modify the risk or promote the oncogenic effect in women infected with HPV. In many developing countries, particularly in sub-Saharan Africa, cultural practices including early marriage, polygamy and high parity are widespread and increase the risk of HPV infection and subsequent cervical cancer in these populations. A recent hospital-based study in Mali, West Africa, reported that poor social conditions, high parity and poor hygienic conditions were the main cofactors for cervical cancer.21 In sub-Saharan Africa, cervical cancer accounts for more than 20 percent of all cancers in women and the incidence of cervical cancer appears to be on the rise in some countries. However, due to underreporting, the true incidence of cervical cancer in many African countries remains largely unknown and is probably much higher than reported.22 Mortality from cervical cancer in most African countries is also very high—in 2002, the survival rate for cervical cancer in sub-Saharan Africa was estimated The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 7


at 21 percent, compared to 70 percent and 66 percent in the United States and Western Europe respectively.13 In Latin America and the Caribbean, cervical cancer is the second most common cancer among women (after breast cancer) and more women die from cervical cancer than from complications related to childbirth.23 An estimated 72,000 new cervical cancer cases and 33,000 deaths occurred in this region in 2002.24 The highest estimated incidence rates (per 100,000 women) are reported in Haiti (87.3) and the lowest rates are in Puerto Rico (8.8). Brazil contributes 27 percent of regional cases, followed by Mexico (17 percent) and Colombia (10 percent). Nevertheless, the true incidence of cervical cancer in this population is likely higher because these estimates are largely based on cancer registry data, which have limited coverage. It is projected that that if current incidence rates remain unchanged and screening efforts are kept at present levels of effectiveness for the next 15 years, by 2025 this region’s cervical cancer burden will increase by 75 percent. Early detection of pre-cancerous stages of cervical cancer using the Papanicolau (Pap) test, an effective, low-cost screening test for detecting abnormal cell changes in the cervix, has led to significant reductions in cervical cancer incidence and mortality rates in the United States and other high-income countries.4;23;25 In developing countries, the rate of cervical cancer screening using Pap smears is low, therefore diagnosis is made using visual identification of a later stage of the disease.17;26 This late diagnosis is the primary reason for the high incidence rate (e.g., the pre-cancerous stage is not identified and treated)22;26-29 and mortality rate from cervical cancer among women in these countries.15;23 In countries where Pap smear screening is available, there is often limited availability through private health care providers, maternal and child health clinics or family planning clinics.30 Other reasons for the limited success of cervical Pap smear screening in developing countries include limited cytologic services, lack of follow-up diagnostic and treatment services, and shortage of cytology technicians.31 The high mortality and low survival from cervical cancer in developing countries is also due to poor nutrition and the presence of other co-morbid conditions (including anemia, HIV/AIDS, and malaria), late presentation, poor quality of care and poverty. In high-income countries, use of the recently developed HPV vaccines promises further reduction of cervical cancer rates.32-34 WHO currently recommends introduction of HPV vaccination in developing countries. However, many barriers exist; in particular, the cost of this vaccine and the lack of an effective delivery infrastructure are significant obstacles for widespread introduction in many developing countries.35-37 Collaboration between public health organizations, governments and vaccine manufacturers is needed to make this vaccine accessible to developing countries. Primary liver cancer. Primary liver cancer (PLC) is the sixth most common cancer in the world and the third most common cause of cancer mortality.13 More than 500,000 new cases of PLC are diagnosed yearly,38 and annual incidence rates worldwide are generally between 5.5 and 14.9 per 100,000 population, but exceed 20 among males in eastern Asia and sub-Saharan Africa.39 More than 80 percent of cases occur in developing countries or low-resource regions of the world.40;41

8 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Worldwide, and in sub-Saharan Africa in particular, the majority of PLCs are hepato-cellular carcinomas. Hepato-cellular cancer (HCC) is an aggressive and rapidly fatal disease, resulting in an estimated 200,000 deaths per year in sub-Saharan Africa.7 It is more common in men than women (male to female ratio of approximately 2.4) and is the cause of almost 25 percent of all cancers in men and up to 10 percent of all adult male mortality in West Africa. Chronic infections with Hepatitis B virus (HBV) and Hepatitis C virus (HCV) are established risk factors for HCC.42;43 More than 75 percent of PLC cases worldwide and 85 percent of cases in developing countries are caused by HBV and HCV.13 The association between HBV infection and HCC is of particular interest scientifically because it represents one of the earliest known viral cancers and was the first cancer found to be preventable by vaccination.39 Other known risk factors for HCC include alcohol consumption, tobacco use and exposure to aflatoxin, a carcinogen produced by the fungi Aspergillus flavus and Aspergillus parasiticus that often contaminates dietary staple foods (groundnuts, maize), and is particularly prevalent in Africa, South-East Asia and China. Other factors potentially linked to HCC include reduced parity in women, obesity, and the expanded use of highly active antiretroviral therapy (HAART) leading to increases in rates of HCC following prolonged survival of HIV-infected persons.44 A large proportion of liver cancers also develop from liver cirrhosis.40 According to WHO estimates, approximately 350 million and 170 million people are chronically infected with HBV and HCV worldwide, respectively.45;46 The relative importance of HBV and HCV in the etiology of HCC varies by region. In the majority of Asian and African countries (except Egypt), HBV infection is has a reported prevalence of 20 percent in some areas and is substantially more common than HCV infection. In sub-Saharan Africa, HBV accounts for about 60 percent of HCC cases and the primary mode of infection is believed to be horizontal transmission in early childhood.7;47 In many Asian countries, HBV infection in children is predominately the result of vertical mother-to-child transmission.48-50 In Europe and the United States, HCV is the more common infection in persons with HCC.51 In Asia, the HCC rates may be declining.38 In 1997, Goh evaluated the prevalence of HBV and HCC in Singapore and reported a reduction in the incidence of acute hepatitis B infection from 10.4 per 100,000 in 1985 to 4.8 per 100,000 in 1996. A recent review of the global pattern of PLC over a 15year time period (1978-92) in selected cancer registries around the world also revealed that, with some exceptions, high-income countries have experienced PLC increases in incidence whereas developing countries in Asia, particularly among Chinese populations, have experienced declines.52 Although the reasons for this changing trend are not entirely clear, the increased sero-prevalence of HCV in the developed world and the reduction in both HBV infection (associated with hepatitis B vaccination programs) and cofactors in the developing countries are likely to have contributed to the changing pattern. An effective vaccine against HBV has been available since 1982. Three doses of HBV vaccine are typically needed to achieve adequate long-term immunity. Regrettably, the World Health Organization (WHO) recommendations for universal hepatitis B vaccination remained unmet in The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 9


low-resource countries for many years due to the high cost of mass vaccination. In the past decade, many African countries have been able to implement universal hepatitis immunization programs, with input from donor agencies such as the GAVI Alliance.53;54 Given estimates that up to 60 percent of HCC in developing countries is attributable to HBV infection, widespread hepatitis B vaccination could prevent more than 250,000 cases per year.7;47 Gastric cancer. Gastric cancer is the fourth most common cancer (behind cancers of the lung, breast, and colon and rectum) and the second leading cause of cancer-related death worldwide.55;56 In 2007, approximately one million new cases of stomach cancer and 800,000 deaths resulting from stomach cancer were projected to occur worldwide. Infection with H. pylori, a gram negative spiral bacterium that often colonizes the stomach, is widely accepted as an important risk factor for the development of distal stomach cancer and mucosal-associated lymphoid tissue (MALT) lymphoma.57-59 There is considerable geographic variation in incidence of gastric cancer. Nearly two-thirds of cases occur in developing countries. High-risk areas—defined by age-standardized rates in men of greater than 20 per 100,000—among developing countries include East Asia and parts of Central and South America.13;60 Although over the past few decades, gastric (stomach) cancer incidence mortality has decreased markedly in most areas of the world,61-63 it remains a disease of poor prognosis and high mortality. There are two main anatomical types of gastric adenocarcinoma: proximal (cardia) and distal (non-cardia) cancers. Proximal tumors are more common in high-income countries, among white populations, and among persons in higher socio-economic classes.64 Distal gastric cancer, the most common type, occurs predominantly in developing countries, among black populations, and in lower socioeconomic groups. H. pylori is one of the most common bacterial infections in the world. Approximately 50 percent of the world’s populations are infected and human beings are the main reservoir.65-67 H. pylori is transmitted from person-to-person by fecal-oral or oral-oral routes. Spread of this bacterial is mediated in part by poor hygiene, overcrowding, and high household density—all of which are common in many developing countries. Contaminated or unclean water may also be a source of H. pylori infection in developing countries. Research on the epidemiology of H. pylori infection and its association with gastric cancer in developing countries is sparse, however current evidence indicates that this infection is common in early childhood, with reported prevalence rates up to 50 percent by 5 years of age in some populations 68 and reaching over 90 percent during adulthood.69 Although prevalence rates of H. pylori infection are decreasing in many parts of North America and Western Europe, no such decline has been noted in most of the developing world.68;70 Rapid recurrence of H. pylori infection after successful elimination has also been observed in some developing countries.71;72 Despite the high prevalence of H. pylori infection in Africa, the prevalence of gastric cancer in black populations in sub-Saharan Africa is relatively low. This paradoxical situation (i.e., a high prevalence of H. pylori, but a low incidence of gastric cancer) has been referred to as ‘the African enigma’ and 10 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


is yet to be fully explained.68;73;74 A similar phenomenon seems to exist in Asia, where there is considerable inter-country variation in the incidence of gastric cancer and H. pylori sero-prevalence. One view is that, because gastric cancer is a multi-factorial disease, known risk factors (such as H. pylori infection) can have varying responsibility depending on the presence or absence of other factors, such as the host immune response, genetic profile, diet and other environmental hazards.75 Another view is that there may be some host protective/inhibitory factors present that prevents the progression of H. pylori-induced chronic active gastritis to cancer in these populations. A number of preventive measures can be implemented to decrease the incidence of gastric cancer in developing countries. Improved standards of living, modification of lifestyle, screening and large scale treatment of H. pylori infection (with appropriate antibiotics) could lead to control or perhaps elimination of H. pylori. An effective vaccine for the primary prevention of H. pylori remains to be developed and may be the optimal way to decrease the burden of H. pylori infection and gastric cancer in developing countries. Burkitt’s lymphoma. Burkitt’s lymphoma (BL) is an aggressive malignancy that affects cells in the immune system and presents frequently in the jaw and abdomen. It was first described 50 years ago and is endemic among young children in central Africa.76 Since then, BL has occurred sporadically in different parts of the world, though it is particularly common among HIV-infected persons. Epstein-Barr virus (EBV) has been associated with Burkitt’s lymphoma and was the first virus to be associated with a human tumor in 1970. In 1997, the International Agency for Research on Cancer (IARC) concluded that there was sufficient evidence for the implication of EBV in the causation of Burkitt’s lymphoma, however the exact role of EBV is unclear.77 EBV is a human herpes virus that is spread among humans through saliva. Endemic EBV-associated Burkitt’s lymphoma has an incidence of 5–10 per 100 000 children and accounts for up to 74 percent of childhood malignancies in the African equatorial belt.78 Endemic BL is associated with EBV in more than 95 percent of cases. In Africa, transmission of EBV takes place earlier in life; in the U.S. and Europe, it often occurs during adolescence.79 Forty to 50 percent of the Burkitt’s lymphoma cases in HIV-infected individuals and 10 to 20 percent of sporadic Burkitt’s lymphoma cases are associated with EBV. In recent years, the incidence of endemic Burkitt’s lymphoma has increased in Africa, overlapping with the epidemics of HIV and malaria in the region.80;81 Although the study of African Burkitt’s lymphoma has provided a wealth of data to the medical and scientific community, most of the African children who develop BL do not have access to adequate treatment; consequently, the outcome of children with Burkitt’s lymphoma remains dismal in Africa.82 Other infectious agents implicated in the development of Burkitt’s lymphoma include the malariacausing agent, Plasmodium falciparum and HIV. Although P. falciparum is not considered as an oncogenic

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agent, its role in the development of BL has been suggested because of the similar geographic distribution of Burkitt’s lymphoma and endemic malaria. The association between BL and HIV is not clear—Burkitt’s lymphoma is a common cancer in HIV infected patients.83 Others have reported that BL in children in sub-Saharan Africa is more likely to be endemic than associated with HIV.81 The rise in childhood lymphoma and especially of Burkitt’s lymphoma in some regions of Africa supports a possible association with HIV. Lower socio-economic status, exposure to some herbal plant species, schistosomiasis, and exposure to pesticides and other environmental factors are other BL risk factors.

Cancers and reproductive health Reproductive health cancers are responsible for a significant burden of morbidity and mortality in many developing countries. These include: breast, cervical, ovarian, endometrial, prostate and other genital cancers. Breast cancer. Breast cancer is the most common cancer among women and the second most common cancer worldwide.13;84;85 More than 1 million cases of female breast cancer are diagnosed each year and more than half of these occur in industrialized countries.13;86 The reported incidence of breast cancer in low- and middle-income countries is about three-fold lower compared to rates in high resource countries. Although there are marked geographical variations, the incidence of breast cancer in most countries, including developing countries, has shown an overall increasing trend since 1973.56;87 Local registries in Africa report a doubling in the rates of breast cancer in the last 40 years.13 However, the lack of large registries and accurate population data in African and other developing countries make these trends difficult to evaluate. In spite of the relatively lower incidence of breast cancer in developing countries, these countries bear a greater burden of breast cancer disease when compared with developed countries.13 More than 55 percent of breast cancer deaths occur in low- and middle-income countries.86 In 2002, the average survival rate from breast cancer in developing countries was 57 percent, with the lowest survival rates (32 percent) reported in sub-Saharan Africa. In contrast, the average age-adjusted survival rates reported in developed countries in the same period was 73 percent.13 Breast cancer is a multi-factorial disease that may occur within families or in women with no family history of the disease. Familial cancers tend to be more aggressive, poorly differentiated and have a poorer prognosis. Individuals with a family history of breast cancer may have genetic pre-disposition to the disease and more than one first degree relative affected confers additional risk. Breast cancer has been linked to genes called BRCA1 and BRCA2, which may account for up to 10 percent of breast cancer cases in developed countries.88 The contributions of BRCA mutations to breast cancer in the developing world are yet to be fully understood.89 Data from the United States data have consistently shown that black women have a lower overall incidence of breast cancer than white women, but are diagnosed with later-stage disease, have shorter survival and have the highest mortality from breast cancer compared with other ethnic

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groups.90-92 Data from the South African Cancer Registry (1998-1999) also suggest higher incidence of breast cancer in white women living in Africa (76.3 per 100,000) compared to black women (18.2 per 100,000).93 In both countries, these differences could represent a diagnosis and treatment bias; biological differences in the breast cancer tumors do not account for these differences in survival.94 The pathological behavior of breast cancer tumors depends on the presence or absence of Estrogenreceptors (ER) in breast tumors. Estrogen receptor negative tumors are more aggressive, develop at a younger age, have more inflammatory characteristic and are more common in blacks.87;95 Recent studies of American women have revealed a higher prevalence of aggressive “triple-negative” tumors (tumors that don’t express ER, progesterone receptor, or the oncogene c-erbB2/HER2) among black compared to white women.87 The high mortality of breast cancer in developing countries, including those in Africa, may thus be due in part to the higher prevalence ER-negative breast cancers in black women. Unfortunately, breast cancer testing for Estrogen receptor status is expensive and rarely available in developing countries and thus data on the prevalence of ER-negative disease in developing countries are limited. Current evidence suggests that the majority of breast cancers cases may result from environmental exposures and lifestyle factors, including certain reproductive factors (e.g., timing and frequency of childbearing), body size/obesity, alcohol, physical activity, exogenous hormones (oral contraceptives, hormone replacement therapy), and, possibly, diet.13;96 The reason most often cited for the increase in breast cancer in low- and middle-income countries is the “Westernization” of the developing world.87 Migration studies have shown that migration from low to high incidence countries is associated with an increased incidence of breast cancer in the migrant population, especially if migration takes place at young ages.97 Women in western countries tend to delay childbearing, breastfeed for shorter periods, and have lower parity, all of which are risk factors for breast cancer. Notwithstanding the relatively bleak picture in developing countries, breast cancer has a relatively good prognosis overall, with early diagnosis and proper treatment.13 Advancements in science, early detection and improved treatment have resulted in decreasing trends of breast cancer mortality in the United States and most of Europe over the last decade. The poorer prognosis of breast cancer in lowand middle-income countries is attributable to the often late presentation of cases, health workforce shortages, poverty, cultural barriers to health care and the lack of the necessary infrastructure for early detection, diagnosis and treatment of breast cancer.92;98;99 With the limitations of low- and middle-income countries in mind, the Breast Health Global Initiative (BHCI) was established in 2002. The BHGI is a global alliance of organizations that seeks to develop evidence-based, culturally appropriate and economically feasible guidelines for breast health care that can be used in low- and middle-income countries to improve breast health outcomes.100-102 Ovarian cancer. Ovarian cancer is the sixth most common cancer in women and the second most common gynecological cancer worldwide.13;16 Incidence and mortality rates are about two-fold higher in more affluent nations (10.2 and 5.7 per 100,000 population, respectively), compared to less developed nations (5 and 2.9 per 100,000 population, respectively). Data on the incidence rates of ovarian cancer in developing countries is limited. In contrast to most other cancers, limited data The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 13


suggest that five-year relative survival rates of ovarian cancer are surprisingly similar in developed (from 31 to 42 percent) and developing countries (16 to 51 percent).16 Ovarian malignancies can occur at all ages, but the risk is generally higher near age 40. Women with ovarian cancer often present with non-specific symptoms including abdominal bloating, urinary urgency, and difficulty eating. Diagnosis of ovarian cancer is particularly challenging because of the vague presenting symptomatology. Consequently, particularly in developing countries, the majority of patients present with advanced disease103;104 and are diagnosed late—this results in a high fatality rate compared to other reproductive health cancers.5 Research studies in the U.S. have shown that the greatest risk factor for ovarian cancer is family history and genetic syndromes associated with ovarian cancer.105 Carriers of the BRCA1 or BRCA2 gene mutations are at increased risk for ovarian cancer;106 genetic testing may provide a method of screening high risk patients for ovarian cancer in order to make way for heightened surveillance in these patients. Other risk factors for ovarian cancer include low parity, delayed childbearing, early menarche, endometriosis, and high fat diet.107 Low parity has been identified as a risk factor for ovarian cancer in women in industrialized countries. The risk for developing ovarian cancer is reduced with oral contraceptive use and pregnancy of any duration.108 Current evidence suggests that oral contraceptives have prevented about 200,000 ovarian cancers and 100,000 deaths from the disease globally, and that over the next few decades the number of cancers prevented will rise to at least 30,000 per year.37;109 Tubal ligation was also noted to significantly reduce the risk of ovarian cancer, even after considering confounders like maternal age at first birth and frequency of childbearing.110 Increased consumption of fruits, vegetables and green tea has been associated with reduced risk of ovarian cancer, even after adjusting for mean food intake, BMI, and energy expenditure, age, smoking and alcohol consumption. Intake of animal fat conferred the greatest correlation with ovarian cancer.111;112 Cancer antigen 125 (CA 125), a serum marker for ovarian cancer, is often used to screen women for ovarian cancer. The United States Preventative Task force however recommends against routine screening in asymptomatic patients.105 In South Africa, CA 125 has been shown to be valuable in follow up management and early detection of recurrent disease.113 However, in most developing countries, CA 125 is not readily available or is likely unaffordable. In developed countries, survival rates have improved in the recent decades, mainly due to progress in treatment, including the development of refined surgical procedures and effective chemotherapy regimens.114;115 Optimal chemotherapy regimens in resource poor settings are yet to be determined. Current chemotherapy protocols are based on the experience of developed countries and may not necessarily be successful in developing country settings.116;117 Collaboration between developed and developing nations is key to bridging the gap to care and treatment of ovarian cancer. Endometrial cancer. Endometrial cancer or uterine corpus cancer is the third most common cancer in women and accounts for 6 percent of all cancers in women.118 In 2000, 189,000 new cases of endometrial cancer occurred in women globally.5 However, rates vary worldwide and are highest in North America and Northern Europe; intermediate in Latin America, Southern Europe and Israel; 14 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


and lowest in Asia and Africa.119;120 Endometrial cancer is the most common malignancy of the female genital tract in industrialized nations.121 In the United States its estimated that 40,100 new cases and 7,470 deaths occurred in 2008.122 In Europe, endometrial cancer is the most frequently diagnosed gynecologic cancer.123 Data on the incidence of endometrial cancer in developing countries is sparse. Endometrial cancer is predominantly a cancer of post-menopausal women and has been associated with excess lifetime estrogen exposure.124;125 Other risk factors for endometrial cancer are related to reproduction and include early age at menarche, late age at menopause and never giving birth to a viable infant.126 Obesity, diabetes and hypertension increase the risk of endometrial cancer, while low-fat diets and physical exercise appear to decrease the risk.126;127 International variation in endometrial cancer rates may reflect the differences in distribution of these risk factors.116 Most of the research on endometrial cancer in developing countries has focused on disease presentation. Endometrial cancer usually presents as painless vaginal bleeding in post menopausal women, which allows for early presentation for treatment. Differences in stage presentation at the time of care-seeking may be explained public awareness of the disease, or by the presence or absence of obvious symptoms such as vaginal bleeding.118 Recent research conducted in the United States has revealed racial disparities in mortality from endometrial cancers. Although the overall incidence of cancer of the uterine corpus is approximately 33 percent less among African-American women than among white women,128 the proportion of cancer-related deaths is higher among black women.122 Several studies have tried to explain these racial disparities. Black women in the U.S. are more likely to present with advanced and poorly differentiated disease. Similarly, research conducted in South Africa assessing the differences in presentation among South African black and white women determined that 10-year survival was significantly lower in black women (28 percent), compared to white women (67 percent), and black women more likely to present with later stage endometrial cancer and poorer tumor differentiation.129 Lower socioeconomic status, greater clinical co-morbidities, treatment disparities and differences in surgical care have also been found to contribute to worse endometrial cancer outcomes among African-American women in some studies.122;130-133 In most studies, racial differences in survival still remain after accounting for these factors, suggesting a genetic component.133 Definitive therapies for advanced endometrial cancer focus on surgery and expensive chemotherapeutics. Hysterectomy is the most cost effective way to address early stage disease.134 When patients present with advanced disease, platinum-containing chemotherapy drugs are generally first line therapy. However these drugs are expensive and developing countries often cannot afford them. Efforts to improve endometrial cancer outcomes in developing countries need to focus on prevention. Unfortunately, because endometrial cancer is a lesser-known gynecological cancer, public awareness of risk factors is low, thus efforts should focus on educating women about the signs and symptoms of this disease.135;136 More research on the incidence of endometrial cancer is needed in developing countries. Prostate cancer. Prostate cancer is the fifth most common cause of cancer worldwide and the second most common cancer among men.13 The annual incidence of prostate cancer is higher in The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 15


more developed countries of the world (56.2 per 100,000) compared to less developed countries (9.4 per 100,000).85 In developing regions, Central & South America have the highest incidence (42.9 per 100,000 person years (PY)), followed by Africa (16.0 per 100,000 PY) and Asia (4.7 per 100,000 PY). Although incidence rates of prostate cancer are higher in the more developed countries, mortality rates are higher in less developed regions.13 The mortality to incidence ratios (MR:IR) for prostate cancer in Africa is 0.80 compared with 0.13 in the North America.85 Lower socio-economic status may play a role in increased prostate cancer mortality in developing countries. Globally, most regions, including developing countries, have seen an increase in the incidence of prostate cancer in recent times.137 The estimated average worldwide increase in the age-adjusted incidence of prostate cancer between 1985 and 2002 was approximately 1.1 percent annually.13 The increasing trend has been largely attributed to greater disease awareness and widespread screening with the introduction of the prostate-specific antigen [PSA] tests. It is also probable that some unexplained genuine increase in risk is occurring. In support of the PSA testing theory, one study reported a four-fold increase in the incidence of prostate cancer in white males in South Africa between 1986 and 1995, compared with no change in incidence in black males, who tend to have poorer access to private medical care or insurance.138 Other studies have reported links between lifestyle shifts, migration and increased incidence and mortality of prostate cancer and other non-communicable diseases in developing countries. In South Africa, prostate cancer has been associated with a high intake of fat, meat, and eggs and low vegetable consumptions.139 In a migration study of Japanese-Brazilians and native Japanese between 1979-2001, Iwasaki et al. observed higher rates of prostate cancer mortality in Japanese-Brazilians when compared to native Japanese, but lower rates than Brazilians.140 On average, JapaneseBrazilians consumed more red meat, dairy and less soybean products, and tended to have a higher body mass index. Studies in developed countries indicate that family history and genetics play an important role in the development of prostate cancer.141 Prostate cancer is the primary reproductive health cancer affecting men and presents a considerable problem in the developing world. Most patients present with advanced disease, and results of treatment (mostly limited to bilateral orchiectomy) are often poor.142 Developing strategies to reduce incidence and mortality of prostate cancer pose a formidable challenge because many of the disparities are strongly related to low socio-economic status, health disparities, and diet. Interventions directed at prevention, early detection and treatment are needed to reduce the incidence and mortality of prostate cancer in developing countries

Conclusions The burden of chronic, non-communicable disease—once limited to industrialized nations—is increasing in many developing countries. Although the total cancer burden remains highest in affluent societies, the gap between developed and less developed countries is closing rapidly.143 Causes for 16 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


the increasing cancer burden in developing countries include changes in lifestyle, cultural norms and financial factors and increases in the incidence of cancers associated with infectious diseases. Infections are responsible for nearly 25 percent of cancers in developing countries, compared with less than 10 percent of cancers in developed countries. Reproductive health associated cancers are also among the most important malignancies among men and women in developing countries. Death rates from most cancers also remain significantly greater in developing countries than in developed countries. In women, the lifetime risk of dying from cancer in Africa is almost double the risk in developed countries.92 Much of this disparity in cancer mortality is attributable to lack of prevention or early detection. The global health agenda appears focused primarily on communicable diseases. To win the fight against cancers in developing countries, we must dispel the misperception that cancer is found mainly in wealthy countries and develop effective strategies specific to the needs to developing countries. In response to this need, WHO has provided several guidelines and recommendations for cancer control in developing countries.6 Better surveillance of cancer incidence, mortality, and risk factors are urgently needed to monitor cancers in developing countries and devise appropriate control strategies for these settings.

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94. Middleton LP, Chen V, Perkins GH, et al. Histopathology of breast cancer among African-American women. Cancer. 2003 Jan 1;97(1 Suppl):253-7. 95. Levine PH VC. Breast cancer aggressiveness in women of African descent. In: Williams CKO, Olopade OI, Falkson CI, eds Breast cancer in women of African descent Dordrecht: Springer,. 2006. 96. Korde LA, Wu AH, Fears T, et al. Childhood soy intake and breast cancer risk in Asian American women. Cancer Epidemiol Biomarkers Prev. 2009 Apr;18(4):1050-9. 97. Ziegler RG, Hoover RN, Pike MC, et al. Migration patterns and breast cancer risk in Asian-American women. J Natl Cancer Inst. 1993 Nov 17;85(22):1819-27. 98. Greenlee RT, Murray T, Bolden S, Wingo PA. Cancer statistics, 2000. CA Cancer J Clin. 2000 JanFeb;50(1):7-33. 99. Zotov V, Shyyan R. Introduction of breast cancer screening in Chernihiv Oblast in the Ukraine: report of a PATH Breast Cancer Assistance Program experience. Breast J. 2003 May-Jun;9 Suppl 2:S75-80. 100. Anderson BO, Shyyan R, Eniu A, et al. Breast cancer in limited-resource countries: an overview of the Breast Health Global Initiative 2005 guidelines. Breast J. 2006 Jan-Feb;12 Suppl 1:S3-15. 101. Anderson BO, Braun S, Lim S, et al. Early detection of breast cancer in countries with limited resources. Breast J. 2003 May-Jun;9 Suppl 2:S51-9. 102. Vargas HI, Anderson BO, Chopra R, et al. Diagnosis of breast cancer in countries with limited resources. Breast J. 2003 May-Jun;9 Suppl 2:S60-6. 103. Odukogbe AA, Adebamowo CA, Ola B, et al. Ovarian cancer in Ibadan: characteristics and management. J Obstet Gynaecol. 2004 Apr;24(3):294-7. 104. Vanderpuye V, Yarney J. Ovarian cancer: an analysis of forty-four patients at the National Radiotherapy Centre, Accra--Ghana. West Afr J Med. 2007 Apr-Jun;26(2):93-6. 105. Screening for ovarian cancer: recommendation statement. U.S. Preventive Services Task Force. Am Fam Physician. 2005 Feb 15;71(4):759-62. 106. Ford D ED. The genetics of breast and ovarian cancer. Br J Cancer. 1995;72:805-12. 107. Roett MA, Evans P. Ovarian cancer: an overview. Am Fam Physician. 2009 Sep 15;80(6):609-16. 108. Whittemore AS, Harris R, Itnyre J. Characteristics relating to ovarian cancer risk: collaborative analysis of 12 US case-control studies. IV. The pathogenesis of epithelial ovarian cancer. Collaborative Ovarian Cancer Group. Am J Epidemiol. 1992 Nov 15;136(10):1212-20. 109. Beral V, Doll R, Hermon C, et al. Ovarian cancer and oral contraceptives: collaborative reanalysis of data from 45 epidemiological studies including 23,257 women with ovarian cancer and 87,303 controls. Lancet. 2008 Jan 26;371(9609):303-14. 110. Nandakumar A, Anantha N, Dhar M, et al. A case-control investigation on cancer of the ovary in Bangalore, India. Int J Cancer. 1995 Nov 3;63(3):361-5. 111. Zhang M, Binns CW, Lee AH. Tea consumption and ovarian cancer risk: a case-control study in China. Cancer Epidemiol Biomarkers Prev. 2002 Aug;11(8):713-8. 112. Zhang M, Yang ZY, Binns CW, Lee AH. Diet and ovarian cancer risk: a case-control study in China. Br J Cancer. 2002 Mar 4;86(5):712-7. 113. Altaras MM, Goldberg GL, Levin W, et al. The role of cancer antigen 125 (CA 125) in the management of ovarian epithelial carcinomas. Gynecol Oncol. 1988 May;30(1):26-34. 114. Cooper N, Quinn MJ, Rachet B, et al. Survival from cancer of the ovary in England and Wales up to 2001. Br J Cancer. 2008 Sep 23;99 Suppl 1:S70-2. 115. Gondos A, Bray F, Hakulinen T, Brenner H. Trends in cancer survival in 11 European populations from 1990 to 2009: a model-based analysis. Ann Oncol. 2009 Mar;20(3):564-73. 116. Basile S, Angioli R, Manci N, et al. Gynecological cancers in developing countries: the challenge of chemotherapy in low-resources setting. Int J Gynecol Cancer. 2006 Jul-Aug;16(4):1491-7. 117. Mellstedt H. Cancer initiatives in developing countries. Ann Oncol. 2006 Jun;17 Suppl 8:viii24-viii31. 118. Momtahen S, Kadivar M, Kazzazi AS, Gholipour F. Assessment of gynecologic malignancies: a multi-center study in Tehran (1995-2005). Indian J Cancer. 2009 Jul-Sep;46(3):226-30. The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 21


119. Liao CK, Rosenblatt KA, Schwartz SM, Weiss NS. Endometrial cancer in Asian migrants to the United States and their descendants. Cancer Causes Control. 2003 May;14(4):357-60. 120. Tkeshelashvili VT, Bokhman JV, Kuznetzov VV, et al. Geographic peculiarities of endometrial and cervical cancer incidence in five continents (review). Eur J Gynaecol Oncol. 1993;14(2):89-94. 121. Kurman RJ, McConnell TG. Precursors of endometrial and ovarian carcinoma. Virchows Arch. 2009 Oct 27. 122. Allard JE, Maxwell GL. Race disparities between black and white women in the incidence, treatment, and prognosis of endometrial cancer. Cancer Control. 2009 Jan;16(1):53-6. 123. Ferlay J BF, Pisani P, Parkin DM GLOBOCAN 2002: Cancer Incidence, Mortality and Prevalence Worldwide, Version 2.0. In: IARC CancerBase No 5 Lyon, IARC Press. 2004. 124. Park C. Cancer of the Endometrium. 4th ed: Churchill Livingstone; 2008. 125. Chen LM, McGonigle KF, Berek JS. Endometrial cancer: recent developments in evaluation and treatment. Oncology (Williston Park). 1999 Dec;13(12):1665-70; discussion 75-8, 81-2. 126. Purdie DM, Green AC. Epidemiology of endometrial cancer. Best Pract Res Clin Obstet Gynaecol. 2001 Jun;15(3):341-54. 127. Salazar-Martinez E, Lazcano-Ponce EC, Lira-Lira GG, et al. Case-control study of diabetes, obesity, physical activity and risk of endometrial cancer among Mexican women. Cancer Causes Control. 2000 Sep;11(8):707-11. 128. Hicks ML, Phillips JL, Parham G, et al. The National Cancer Data Base report on endometrial carcinoma in African-American women. Cancer. 1998 Dec 15;83(12):2629-37. 129. Cronje HS, Fourie S, Doman MJ, et al. Racial differences in patients with adenocarcinoma of the endometrium. Int J Gynaecol Obstet. 1992 Nov;39(3):213-8. 130. Barrett RJ, 2nd, Harlan LC, Wesley MN, et al. Endometrial cancer: stage at diagnosis and associated factors in black and white patients. Am J Obstet Gynecol. 1995 Aug;173(2):414-22; discussion 22-3. 131. Connell PP, Rotmensch J, Waggoner SE, Mundt AJ. Race and clinical outcome in endometrial carcinoma. Obstet Gynecol. 1999 Nov;94(5 Pt 1):713-20. 132. Hill HA, Eley JW, Harlan LC, et al. Racial differences in endometrial cancer survival: the black/white cancer survival study. Obstet Gynecol. 1996 Dec;88(6):919-26. 133. Randall TC, Armstrong K. Differences in treatment and outcome between African-American and white women with endometrial cancer. J Clin Oncol. 2003 Nov 15;21(22):4200-6. 134. Ashih H, Gustilo-Ashby T, Myers ER, et al. Cost-effectiveness of treatment of early stage endometrial cancer. Gynecol Oncol. 1999 Aug;74(2):208-16. 135. Ackermann S, Renner SP, Fasching PA, et al. Awareness of general and personal risk factors for uterine cancer among healthy women. Eur J Cancer Prev. 2005 Dec;14(6):519-24. 136. Soliman PT, Bassett RL, Jr., Wilson EB, et al. Limited public knowledge of obesity and endometrial cancer risk: what women know. Obstet Gynecol. 2008 Oct;112(4):835-42. 137. Magoha GA. Overview of prostate cancer in indigenous black Africans and blacks of African ancestry in diaspora 1935-2007. East Afr Med J. 2007 Sep;84(9 Suppl):S3-11. 138. F Sitas JMaJW. Incidence of histologically diagnosed cancer in South Africa 1993–1995. National Cancer Registry, South African Institute for Medical Research, Johannesburg. 1998. 139. Walker AR, Walker BF, Tsotetsi NG, et al. Case-control study of prostate cancer in black patients in Soweto, South Africa. Br J Cancer. 1992 Mar;65(3):438-41. 140. Iwasaki M, Mameri CP, Hamada GS, Tsugane S. Secular trends in cancer mortality among Japanese immigrants in the state of Sao Paulo, Brazil, 1979-2001. Eur J Cancer Prev. 2008 Feb;17(1):1-8. 141. Ross RK, Pike MC, Coetzee GA, et al. Androgen metabolism and prostate cancer: establishing a model of genetic susceptibility. Cancer Res. 1998 Oct 15;58(20):4497-504. 142. Olapade-Olaopa EO, Obamuyide HA, Yisa GT. Management of advanced prostate cancer in Africa. Can J Urol. 2008 Feb;15(1):3890-8. 143. Rehman MU, Buttar QM, Khawaja MI, Khawaja MR. An impending cancer crisis in developing countries: are we ready for the challenge? Asian Pac J Cancer Prev. 2009 Oct-Dec;10(4):719-20.

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What are People Saying About Cancer in Developing Countries? Learning from the experts: the focus group sessions

T

hree focus groups were convened at the Global Health Council’s 36 Annual International Conference, held at the Omni Shoreham Hotel in Washington, DC. The focus groups were conducted on May 27, 28 and 29, 2009, and highlighted the views of CEOs and VPs, academics and program implementers. Siobhan Ni Bhuachalla, MPH, facilitated the focus

groups. This summary does not attribute specific comments made by participants.

Key Findings 1. There is consensus that cancer is a significant and growing problem in developing countries, as are other chronic diseases. 2. Although some facilities and NGOs in developing countries address the full scope of cancer, others focus on specific types of cancers—for example, cervical cancer services at reproductive health clinics or studies on breast cancer in certain populations. 3. There is debate about whether to focus messaging on specific types of cancer or to promote a health systems approach. 4. There is a need for more detailed and more geographically specific data, as there are not only variations in disease burden between countries but also within countries. 5. Stigma, lack of funding and lack of infrastructure are problematic—stakeholders do not often address chronic diseases. 6. There are tough choices to be made in terms of treatment and care options, and distribution of resources, e.g., is screening without treatment an ethical course? Is palliative care all that can be offered to some people? 7. Meeting global cancer needs will require new sources of funding and a greater focus of activity—from basic research to delivery of services; from coordination among stakeholders to political will within countries and communities.

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Focus group participants Public and private sector leadership FHI PATH Global Health Council John Snow, Inc. Jhpiego Novartis

Program implementers John Snow, Inc. Global Health Council PATH University of North Carolina & IH Section, APHA Abt Associates Chulalongkorn University School of Medicine, Thailand Jhpiego Novartis

Researchers and academics London School of Hygiene and Tropical Medicine Columbia University Mailman School of Public Health All India Institute of Medical Sciences Association of Schools of Public Health Afro-European Medical and Research Network George Washington University

Perceptions on the burden of cancer in emerging and developing countries The general feeling expressed by the focus groups was that cancer is a significant health issue in developing countries and needs greater attention, along with other chronic diseases such as cardiovascular disease. All participants felt that the burden of cancer in emerging and developing countries was substantial and growing. Several members were engaged in cancer-related activities, in particular cervical cancer and breast cancer. The participants said that, while many global health practitioners recognize the importance of and are committed to this issue, there is a large difference between their prioritization of chronic disease and the attention paid by donors, development partners, and within countries. Many of the participants felt that, at present, there is greater attention toward and awareness of cardiovascular disease in developing countries, compared to cancer. In addition, it was noted that Asia seems to be much further along in looking at cancer than Africa.

“I believe that detection and treatment are the medium-term goals we

want to sell but education has to be the immediate goal—get people aware.”

The focus group also pointed out that the burden of different types of cancer varies greatly between countries and even between different regions in those countries. However, these differences and their causes are not yet well understood. Several different countries and cancers were discussed specifically by the focus groups, including: „„ Cancer is an overwhelming problem in countries of the former Soviet Union, and, in the 24 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


case of women, has become the leading cause of death of women of reproductive age. While these countries have well-developed health infrastructures and cancer treatments are available, prevention mechanisms and emphasis on screening do not exist. „„ Africa also has a significant cancer problem. For example, in Nairobi, half of the gynecology beds were occupied by women with cervical cancer. This drains the resources to address non-chronic diseases like malaria. Participants also recognized the need for more epidemiological data in order to identify the specific needs of a country / population and allocate resources appropriately.

Cervical Cancer in Developing Countries During the focus groups, cervical cancer came to the forefront as a specific concern among all participants. Several participants were involved in cervical cancer work, and cervical cancer was the disease most widely represented in terms of experience in the academic group. The private and public sector leadership group also identified cervical cancer as one cancer that is already receiving widespread attention. Awareness of cervical cancer is increasing in developing countries, as more and more individuals are impacted by the loss of family and friends to the disease. Cervical cancer has also gained increased attention because of its link with HIV/AIDS, which both increases risk of cervical cancer in women with HPV and may also speed the progression of pre-cancerous cells into invasive cancer. Some of the organizations represented within the focus groups are currently implementing cervical cancer programs in developing countries. For example, Jhpeigo, in conjunction with PATH and several other groups, is conducting a cervical cancer program in Thailand. To date, the program has screened half a million women. As more organizations initiate work on cervical cancer, this program presents an opportunity to identify challenges faced and lessons learned in cervical cancer screening.

Awareness, education and behavior change The focus group participants agreed that raising awareness about cancer and educating people about the disease is a critical step in reducing cancer mortality and morbidity. In many developing countries, cancer of any kind is often viewed as a death sentence and the stigma surrounding cancer many inhibit men and women from accessing the health services they need. The stigma surrounding breast cancer in many cultures was raised several times. Behavior change is also essential to reducing the burden of disease, as many of the risk factors that contribute to the cancer burden are modifiable. However, once knowledge and demand about cancer is generated, it is absolutely essential to have the resources to meet people’s testing and treatment needs. One participant commented: “I believe that detection and treatment are the medium-term goals we want to sell but education has to be the immediate goal—get people aware.” The group agreed that greater attention needs to be given to lifestyle and behavioral changes. Many of the risk factors that contribute to the cancer burden are easily reduced through changes The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 25


…due to the importance of behavioral change and in behavior or in the environment. As a result, behavior awareness in addressing change approaches could have a significant impact on chronic disease, the burden of disease. The group discussed the value of educating people about the dangers of tobacco use, as programming should be smoking increases the risk of lung cancer. Smoking is becoming an increasing problem in developing countries conducted through both where there is little regulation on advertising. Therefore, lung cancer will likely be an increasingly large burden the health system and the on healthcare systems. Addressing this issue sooner rather than later is important. It also was noted that, due educational system. to the importance of behavioral change and awareness in addressing chronic disease, programming should be conducted through both the health system and the educational system.

Cancer services provision in developing countries Many participants agreed that there is no “one size fits all” method of cancer service delivery in developing countries. Different countries have different needs, which are dictated by both their burden of disease and on the ground realities of health infrastructure. One participant’s work in Vietnam indicated that approaches that were feasible in some cities in the country were not feasible in others. Different populations also have different needs in terms of the cancer services provision. For example, the appropriateness of cancer screening or intervention varies by age and gender. However, this is not to say that you cannot apply lessons learned in one setting to other settings. Focus group participants said that translating best practices across programs will save time and improve effective implementation of programs in low-income countries. In addition to county- and population-specific needs, focus group participants identified many other challenges that programs may have to overcome in order to provide cancer services. Some of the significant challenges to providing potentially life-saving therapies highlighted during the discussion include: lack of supply chain, lack of purchasing of chemotherapeutic drugs, and lack of knowledge on how to administer them, lack of human resources, and prohibitive cost of medications. The focus group also discussed integrating cancer services into existing programming. It was emphasized that imposing a vertical approach in countries with weak health systems would not have the greatest impact. As infectious and chronic diseases are actually very interlinked, it is important to address them collectively rather than separately. In addition, the integration of cancer services into any interaction a between a patient/client and a health care facility or provider will improve outcomes. The group noted that this would be possible only in some circumstances; under some conditions, integration would not be possible or pragmatic. Prevention and building awareness were identified as areas in which integration may be easier. Finally, participants recognized the need for new, low-cost interventions that are effective in the developing country context. Cancer services that are effective in developed countries may not be 26 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


the best options for developing countries, where on the ground realities are often very different. The group stressed that prior to pursuing an intervention, it is important to consider if it can actually be implemented on the ground.

Cancer treatment

…there is no “one size fits all” method of cancer service delivery in developing countries.

The focus group discussed a number of different issues related to cancer treatment. Despite the relative lack of treatment options in developing countries, it was acknowledged that there has been progress in the last 25 years by some countries to improve cancer treatment. However, participants stressed the need for new, additional low-cost options for cancer treatment that are appropriate in the developing country context. When asked about what model of treatment should be offered, participants generally felt that some top level delegate officials advocated palliative care for the many and curative treatment/care for the few. Although there was a strong feeling against this model, as it is not optimal (or perhaps even acceptable), also was acknowledged that these are the types of hard choices faced by health care worker in the field. Among the topics discussed with regard to treatment was “orphaned” cancers that are rarer but are actually highly treatable and curable. For example, the Fred Hutchinson Cancer Research Center has a project in Uganda that treats Burkitt’s lymphoma. They are using a low-cost regimen of generic chemotherapy drugs to successfully treat the disease in children. Other treatment-related topics included the need for buy-in from WHO on the need for investment in the treatment of cancer and other chronic disease. For example, while a complicated chemotherapy regime may be much more expensive than what is used to treat most infectious diseases, it is a time-limited course of therapy. The importance of having the evidence from research studies was highlighted as particularly instrumental in getting support from and influencing WHO and other organizations. The Pan American Health Organization’s (PAHO) early adoption of policies that address cervical cancer was cited as a model of progress. Ensuring the quality of treatment agents was not perceived by this group to be a major problem at this point. In general, the group expressed recognition that some quality control systems are not perfect, but felt they were headed in the right direction. In addition, there was a sense that surveillance could be established through country systems or by the implementing organizations.

Diagnosis without treatment: a public health dilemma Another issue discussed during the conversation about treatment was the usefulness of screening without adequate treatment options. The group expressed concern about the value of screening The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 27


patients if you are unable to offer treatment or care for a positive diagnosis. One participant expressed the opinion that “screening without treatment is a sin.” For example, it was noted that cervical cancer screening is ineffective if not combined with immediate treatment. However, many of the patients live far away, so if they don’t receive immediate treatment, it is unlikely they will receive any sort of care at all. Some participants also expressed concern that screening without treatment would also negatively affect individual buy-in, and thus the success, of cancer screening programs. The group discussed the potential dangers of building programs before treatment is available, as this may result in people coming in for screening or treatment that providers simply cannot help.

Perceptions on the role of the pharmaceutical industry The group identified pharmaceutical companies as essential stakeholders in the fight against cancer. Pharmaceutical companies play a key role in the research and development of cancer drugs, and may also play an important role in healthcare delivery. Incentives also exist for pharmaceutical companies to partner with cancer intervention programs; implementers need drugs for use in a community, and by providing these drugs pharmaceutical companies not only meet health needs but also promote their own products The groups felt strongly that corporations must be honest partners who will back up their promises in terms of what they provide and how, and making it fit with existing conditions rather than looking solely to market more of their products. One participant commented “Where I’ve seen the problem come in is aggressive marketing that is out of the hands of the people who understand public health.”

Funding All of the focus group participants unanimously agreed that cancer is currently underfunded and that attracting additional resources is likely to prove difficult. …cancer is not thought of Participants identified some of the major challenges to as a “developing country” securing funding, especially issues related to advocacy and messaging, and also offered some potential disease. solutions to these obstacles. The focus groups cautioned that securing funding for cancer must not be perceived as “taking away” resources from other health issues. Instead, new resources should be mobilized for cancer programs in developing countries and cancer programs should be incorporated into broader chronic disease programs. One of the major challenges with securing funding for cancer work is garnering governmental, donor and public support for this issue. The focus groups identified many reasons why this is true. The prevalence of cancer is relatively high in industrialized and high-income countries. As a result,

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individual donors may prefer to contribute to domestic-focused groups. Given that cancer is such a high-profile health issue in countries like the United States, that familiarity might make it easier to attract donations; conversely, cancer is not thought of as a “developing country” disease. Another challenge for cancer advocates is to develop a compelling “ask” for governments and donors. As discussed earlier in this section, health system strengthening is a key component of providing cancer services. However, some of the focus group participants noted that many governments and donors may not understand what “strengthening health systems means,” and thus be hesitant to support projects geared toward this perceived “vague” purpose. Given this, some participants suggested that it may be easier to convince governments and donors to support specific cancer initiatives instead. However, all participants agreed that it is necessary to create a sustainable platform for prevention, detection, and treatment that would include cancer and other prevalent chronic diseases. Even if it is difficult to describe to policymakers and donors, health systems strengthening is a crucial part of achieving this platform. The focus group also discussed potential strategies to encourage government and donor support of cancer programs. Although it takes a lot of effort, background work, research, and evidence to convince country ministers to put money into this issue, the group was relatively optimistic that it can be done. Some suggested that involving the national professional associations (doctors, nurses, etc.) may be helpful. Others said that buy-in from bilateral and multilateral organizations, such as the World Health Organization, is crucial for success. Supporting ministers of health and other decision makers within countries to prioritize cancer as appropriate for their countries is also crucial for securing additional support. Another strategy to increase funding and support suggested by the group is to increase attention to and support for chronic diseases as a whole. The group suggested that the major heart, diabetes, and cancer foundations may be instrumental in increasing funding and support for addressing chronic disease. Many participants expressed concern that most of the funding for chronic disease is allocated to prevention interventions, and cautioned that more attention should be paid to detection and treatment. A proven vaccine, for example, would attract funding more easily than treatment protocols. However, from the country perspective, this leaves out the portion of the population that already has the disease. Other strategies to address lack of resources include the creation of a new source of cancer funding and the identification of private donors to support the issue. Participants suggested the Bill and Melinda Gates Foundation as a potential source of support, and also suggested Warren Buffett as an example of an individual who could champion the cause. Participants also said that there is a need to look for individual philanthropists outside of the United States, as these people are major untapped resources.

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The view from the field: a survey of cancer-related activities The survey questions were developed by Global Health Council staff, with input from our partners at Novartis. The survey was launched on October 26, 2009 and closed on November 10, 2009. Following the initial invitation, which was send via email to all GHC members, a reminder was sent on November 4. In addition, information about the survey and how to participate was included in GHC’s weekly update, which is emailed to GHC members, partners and others interested in global health. A total of 174 people completed the survey. Of 145 respondents who indicated their type of workplace, 48 percent indicated that they provided services, as a nongovernmental organization, community health organization, hospital or clinic, or faith-based organization. Another 29 percent reported working at a research or academic institution and 10 percent offered private sector technical assistance or counseling. Other types of workplaces included international institutions such as WHO or PAHO, advocacy organizations and membership organization (each 3 percent); and public sector institutions, private foundations or corporation (each 1 percent).

Key Findings 1. More than 60 percent of respondents noted that the emerging cancer burden was very or extremely important; 70 percent rated chronic diseases as very or extremely important. 2. Nearly 60 percent of respondents believed that chronic diseases should receive the same level of attention in developing countries as infectious diseases and maternal and child health issues. 3. When asked which of 18 global health and development issues need more attention, chronic diseases ranked third. 4. A greater percentage of respondents who focus on cancer were working in the US rather than in developing countries, compared to those who work on other issues. 5. Among respondents who work on cancer, lack of health care infrastructure and lack of political will were the most cited barriers to providing cancer-related services. Although 68 percent of respondents worked for an organization based in an industrialized country, 61 percent indicated that their work was mostly conducted in developing countries, with 26 percent focused on industrialized countries and 12 percent having an equal distribution of work between developing and industrialized countries. About one-third of respondents (34 percent) indicated that their organization had up to 50 employees, 10 percent had 51–100 employees, 19 percent had 101–500 employees and 37 percent had more than 500 employees. Respondents represented a range of occupations. The most frequently reported position was program officer or project manager (22 percent), followed by director/chief executive/president and student (each 14 percent); many students who responded to the survey were actively engaged in programs or research efforts. Physicians (10 percent) and researchers (9 percent) were the next most often position 30 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


cited. Other positions included: academic or professor, consultant, administrator, community health worker, clinical care or service provider, social worker or counselor, nurse, advocacy or government relations, communications or public relations, program implementer.

HIV/AIDS was the most commonly cited area of organizational focus (42 percent), followed by reproductive health or family planning (25 percent), community health (24 percent), and health education and maternal health (each 20 percent). Cancer was cited as an area of focus by 13 percent of respondents and chronic disease was cited by 6 percent. Sixty-one percent of Other areas cited by at least 5 percent of respondents respondents rated the include health systems, advocacy, child health, malaria, research and development, tuberculosis, counseling emerging cancer burden (psychological, social, or educational), hospital or clinic administration, non-health development issues, and in developing countries health and human rights. The survey asked respondents about attitudes toward cancer in the context of health in developing countries. Sixty-one percent of respondents rated the emerging cancer burden in developing countries as very or extremely important and 32 percent rated it as important. Similarly, 70 percent rated chronic diseases

as very or extremely important and 32 percent rated it as important.

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as very or extremely important and 24 percent rated it as important. Respondents were also asked about the importance of other health issues—the percent rating as very or extremely important: child heath, 93 percent; maternal health and water and sanitation, each 91 percent; HIV/AIDS, 86 percent; reproductive health, 85 percent; nutrition and newborn health, each 84 percent; tuberculosis, 81 percent; malaria, 80 percent; disaster/refugee health, 73 percent; adolescent heath, 68 percent; drug, vaccine and diagnostics development, 63 percent; neglected tropical diseases, 59 percent; injuries, 50 percent; and substance abuse, 46 percent.

When asked to select the top three issues that need more attention, emerging cancer burden and chronic diseases were selected by 18 and 28 percent, respectively; they ranked eighth and third of the options provided. Water and sanitation was the most frequently mentioned (38 percent), followed by child health (30 percent), reproductive health (28 percent), nutrition (27 percent), maternal health (25 percent) and HIV/AIDS (23 percent). Receiving fewer than 18 percent of votes were: mental health, malaria, development of drugs/vaccines/diagnostics, disaster/refugee health, adolescent health, tuberculosis, other infectious diseases and substance abuse. Fifty-eight percent of respondents agreed with the statement, “Chronic disease, maternal, newborn, child and reproductive health and infectious diseases all need equal attention” with regard to the context of developing countries. Thirty-nine percent preferred the statement, “Chronic disease is important, but other health problems are more pressing.” The remaining respondents did not feel that chronic diseases were of concern now, though the majority of these respondents believed they might be a problem in the future. 32 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


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When asked which chronic diseases were most important, heart disease was the most popular chronic disease—75 percent selected it as one of their top three chronic diseases. Cancer and diabetes were the second most important, each selected by 71 percent of respondents. Respiratory diseases, blindness and visual impairments, stroke, deafness and hearing impairments, hypertension, obesity, HIV/AIDS as a chronic disease, and dental disease were also mentioned. More than half of respondents work at an organization that includes cancer in its portfolio, but 58 percent do not personally work on cancer. Of the 89 respondents whose organizations work on cancer, 56 percent report that cancer is less than 25 percent of their organization’s portfolio and about 18 percent spend more than 75 percent of their time on cancer. Organizations worked most frequently on breast and cervical cancer (42 and 41 percent of respondents, respectively). Nearly onethird of respondents from these organizations reported working on all cancers. Of the 73 respondents who work directly on cancer, 47 percent devote less than 5 hours per week to cancer and 20 percent devote more than 30 hours per week. However, about half of the respondents work at organizations or work personally on an issue area that is linked with cancer, even if it is not the primary focus. Responding organizations reported engaging in a variety of activities, including research, service delivery and advocacy. „„ Forty-seven respondents indicated that their organization conducts research—61 percent reported clinical, 56 percent applied, 54 percent population-based, 48 percent basic, 41 percent research and development (R&D), and 37 percent translational research. „„ Fifty-four respondents indicated that their organization is engaged in service delivery or providing access to services; nearly all serve all ages and more than half serve at least 1000 clients per year. Sixty percent of organizations provide diagnostic screening and testing; 52 percent access to medical care; 46 percent access to counseling; 44 percent provide (each) medical care, treatment, and counseling. In addition, 36 percent provide social support for clients and families, and 31 percent provide palliative care. Forty-eight percent provide services free-of-charge and 35 percent charge a fee. „„ Forty-one organizations engage in advocacy— 68 percent target the general public, 48 percent community leaders, 42 percent public administrators, 38 percent media, 32 percent elected officials and 30 percent donors. Sixty-eight percent engage in local advocacy, 62 percent are active at the national level, 55 percent at the regional level and 52 percent internationally. Commonly used advocacy methods include events (72 percent), conferences (68 percent), personal meetings (58 percent), public forums (55 percent), print media (42 percent), email messages (35 percent), journals (32 percent) and newspapers (30 percent). Other methods include letters and radio (each 25 percent) and television (20 percent).

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Of 70 respondents whose organizations work on cancer, the two issues most frequently cited as ‘very problematic’ are lack of health care infrastructure (40 percent) and lack of political will (35 percent); an additional 26 and 27 percent, respectively, cited these issues as ‘somewhat problematic’. Low level of household income was cited as very or somewhat problematic by 71 percent of these respondents, low medical literacy by 70 percent, lack of equipment and supplies by 68 percent, lack of health care providers by 59 percent, and stigma or cultural taboo associated with the disease by 58 percent. The presence of either substandard or counterfeit drugs was cited as very or somewhat problematic by 33 and 22 percent, respectively. In addition, 29 and 36 percent reported that they were not sure whether substandard or counterfeit drugs were problematic.

Nine respondents indicated that their organizations worked on cancer in the past; 21 respondents were unsure of past cancer work. Twenty-three respondents indicated that their organizations were planning to work on cancer in the future; 37 respondents were unsure. Lack of funding was the most common reason for not engaging in work on cancer (37 percent of 79 respondents), followed by lack of personnel or expertise and provision of cancer services by other organizations (each 29 percent), lack of opportunities for partnership (28 percent), and lack of access to diagnostic or treatment options (14 percent). Of 129 who indicated an interest in learning more about cancer, 66 percent reported a personal interest and 39 percent indicated an organizational interest. Of the 106 respondents who indicated their organization would like more information about cancer, more than 50 percent indicated they 36 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


would find the following tools helpful: technical guidelines, training materials and continuing education courses for service providers (78, 70 and 65 percent, respectively); contact with others working on cancer issues (68 percent); technical guidelines for outreach or educational activities (65 percent); access to media/publication/marketing tools (62 percent); and participation in advocacy groups or advocacy training (57 and 54 percent). Similarly, more than 50 percent of respondents indicated they personally would like: access to research publications (79 percent); advocacy training or participation in advocacy groups (76 and 67 percent); access to media/publication/marketing tools (66 percent); continuing education services, technical guidelines and training materials for providers (63, 55 and 54 percent, respectively); contact with others working on cancer issues (61 percent); and technical guidelines for outreach or educational activities (59 percent).

Among organizations that work on cancer ‌ The data were then stratified by the question: Does your organization currently work on cancer? In looking at various health challenges, respondents whose organizations work on cancer varied somewhat from those whose organizations did not work on cancer. The health challenges that were viewed as ‘very or extremely important’ more frequently by those working on cancer include: HIV/ AIDS (89 vs. 81 percent), maternal health (93 vs. 87 percent), child health (94 vs. 90 percent), injuries (52 vs. 49 percent), emerging cancer burden (64 vs. 61 percent), reproductive health (85 vs. 83 percent), drug/diagnostics/vaccine development (68 vs. 57 percent), nutrition (84 vs. 81 percent), and substance abuse (48 vs. 44 percent). Among health topics rated equally important were: disaster or refugee relief (73 percent) and chronic diseases (70 percent). Health challenges rated lower by those The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 37


Cancer was rated the working on cancer were: malaria (79 vs. 81 percent), tuberculosis (79 vs. 84 percent), neglected tropical diseases (55 vs. 64 percent), newborn health (80 vs. 86 percent), adolescent health (65 vs. 70 percent), other infectious diseases (63 vs. 68 percent), mental health (57 vs. 59 percent), and water and sanitation (90 vs. 94 percent). Of respondents whose organizations work on cancer-related issues for more than 50 percent of their time, 90 percent cited the emerging cancer burden and chronic diseases as very or extremely important; of those whose organizations work on cancer less than half time, 56 percent rated cancer as this important.

most important chronic disease by those whose organizations work on cancer (75 vs. 68 percent); heart disease was the most important chronic disease among those who did not work on cancer

When asked which health issues needed more attention, those whose organizations work on cancer rated certain (86 percent). issues higher than those whose organizations did not work on cancer. Among the health issues rated higher were: adolescent health (12 vs. 9 percent), emerging cancer burden (25 vs. 11 percent), chronic diseases (33 vs. 21 percent), disaster and refugee health (14 vs. 11 percent), drug/diagnostics/vaccine development (12 vs. 9 percent), maternal health (27 vs. 24 percent), substance abuse (7 vs. 1 percent), and water and sanitation (40 vs. 34 percent). Those whose work was more focused on cancer (greater than 50 percent of work) cited cancer, chronic diseases and reproductive health as the key areas that need more focus. Surprisingly, the proportion of respondents who agreed with the statement that chronic diseases should have the same level of attention as infectious diseases and maternal and child health was slightly higher for organizations that do not work on cancer (60 vs. 57 percent). The proportion who believed that chronic disease is important but other issues are more pressing was slightly higher for those working on cancer (39 vs. 37 percent). Further assessment found that respondents whose organizations spent at least 10 percent of their time on cancer activities ranked chronic diseases in developing countries as important as maternal, newborn, child and reproductive health, HIV/ AIDS and infectious diseases; those whose organizations spent less than 10 percent effort on cancer indicated that chronic disease is important, but other issues are more pressing. Cancer was rated the most important chronic disease by those whose organizations work on cancer (75 vs. 68 percent); heart disease was the most important chronic disease among those who did not work on cancer (86 percent). Diabetes was ranked second by both groups (62 and 64 percent). Those who do not work on cancer rated cancer as the third most important chronic disease (69 percent). More than half (55 percent) of organizations working on cancer conduct research, 64 percent provide services and 50 percent are engaged in advocacy. Clinical (61 percent), applied (56 percent) and population-based (54 percent) research were the most frequently cited types of research conducted. 38 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Of those who spend less than 10 percent of time on cancer, only 25 percent conduct research on cancer, compared with 57–83 percent of those who spend more than 10 percent of time on cancer-related activities. Diagnostic testing (60 percent) and access to medical care (52 percent) were the most frequently cited services provided by organizations. Of those who work on cancer less than 10 percent of their time, 46 percent provide services, compared to 62–67 percent who spent 10– 50 percent time on cancer and 83–87 percent who work on cancer more than 50 percent of the time. Advocacy efforts tend to focus on the general public (68 percent) and community leaders (48 percent). Only 30 percent of those who spend 10 percent of time on cancer work are engaged in advocacy, compared to 50–79 percent of those more engaged on the issue.

More than half (55 percent) of organizations working on cancer conduct research, 64 percent provide services and 50 percent are engaged in advocacy.

Compared to organizations not working on cancer, a greater proportion of organizations working on cancer were at research or academic settings, hospitals or health clinics, and nongovernmental implementing organizations. A substantial difference was found between organizations that do and do not work on cancer with regard to country: 37 percent of those working on cancer focus more on industrialized countries vs. 14 percent of non-cancer organizations. Similarly, 48 percent of cancer-related organizations focus more of their work in developing countries vs. 78 percent of non-cancer organizations. Those who focus more attention on cancer tend to be more focused on industrialized countries. In addition, 76 percent of cancer-related organizations have their headquarters in an industrialized country, compared to 58 percent of non-cancer organizations. Responding organizations that work on cancer tended to be larger—60 percent had more than 100 employees, compared to 48 percent of non-cancer organizations.

Setting the policy and research agendas: notes from the cancer working group The goal of the working group was to develop the research, policy, and advocacy agendas, and to begin to address the growing problem of cancer in developing countries. The sessions were a vehicle through which the global health community was able to discuss the work of organizations, agencies and corporations whose portfolio includes cancer in developing countries, and to formulate an agenda of common priorities for future cooperation. The working group convened monthly from January to May 2010 and examined the following topics: reproductive health and cancer, infectious diseases and cancer, lung and other cancers, defining the research agenda, and defining the policy and advocacy agenda. Working group participants included The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 39


representatives from nongovernmental organizations, government agencies, academic institutions, corporations and donor institutions. The discussions on cancer in developing countries were characterized by a desire to move research, policy and programming forward in practical ways. A key observation that framed the discussion was the concept of “treating the treatable and preventing the preventable.”

A key observation that framed the discussion was the concept of “treating the treatable and preventing the preventable.”

This concept, while encouraging a variety of strategies, will shape upcoming activities and messages to focus on practical and achievable goals. For example, many cancers have an infectious disease component that can be promoted as a way of putting cancer into the mainstream messages for global health and can offer a means of integrating cancer prevention and treatment services into existing program parameters and funding streams. Throughout the five working group sessions, several themes were raised with frequency: ŠŠPatient services—diagnosis, prevention, treatment and care ŠŠResources, infrastructure and sustainability ŠŠResearch issues in cancer ŠŠPolicy, advocacy and communications These themes were honed into a set of five research priorities and five policy/advocacy priorities. These priorities will form the basis for projects and activities over the coming months.

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Top Five Research Agenda Priorities „„ Develop metrics and indicators. It is important to identify the outputs and outcomes of cancer-related projects, and to examine patient impact. Early metrics of success are essential to measure not only a program’s outputs (e.g., number of cancer cases diagnosed) but also health outcomes – does the program/diagnostic tool/ medication, etc. actually improve health and reduce the disease burden? Which aspects of the programs work (or do not work)? „„ Promote workforce and research capacity. Building capacity within national institutions can prevent health care workforce migration to developed countries. There is a need to train both researchers and health care workers to conduct research related to cancer programming and interventions. There is also a need to conduct research on the most appropriate configuration of health care workers to address the cancer burden and their ability to reach people through medical and social interventions. In addition, horizontal (cross-cutting) capacity building is essential to address fully the cancer disease burden. „„ Instill a research focus. A research ethic needs to be implemented within cancer service delivery programs and interventions. Research needs for program and outcome assessment should be identified in grant proposals – currently research-related components are frequently removed. „„ Focus on the link with infectious diseases. By focusing on infectious diseases, many cancers can be identified. For example, a surprising number of people in both the developed and developing world do not realize that people living with HIV can develop certain cancers because they have HIV; the link between cervical cancer and human papilloma virus provides opportunities for intervention. „„ Draw attention to the economic issues. Cancer is not just a health cost but an economic cost, as it strikes younger members of the workforce, who may be forced into early retirement, as well as the elderly. This has an economic impact on the community.

Patient services—diagnosis, prevention, treatment and care Diagnosis. There are several issues associated with diagnosing cancer in developing countries, including lack of screening tools and technical training, lack of infrastructure to deliver services, lack of resources for services and outreach efforts, the perception that cancer is a disease of “old people” or “rich people,” and the stigma associated with cancer. Diagnosing cancer in different settings varies according to availability of services, access to clinical settings, effectiveness and comprehensiveness of the services provided, and ability of people to pay for services. One of the top priorities in diagnosing cancer is the need for a quick assay. This is essential for two reasons: potential loss to follow-up care if the person has to return for results at a later time and potential loss of life because the confirmation period (sometimes months in duration) is too long and diagnosis comes too late to intervene. Breast cancer and other reproductive cancers are extremely prevalent in developing countries, but women may not seek care until their symptoms are severe—additional delays due to diagnostics exacerbate the problem and increase the likelihood of poor outcomes. The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 41


Top Five Policy and Advocacy Agenda Priorities „„ Focus on the “fixable.” Increased funding for the cancers that a) are most problematic and b) have potential for progress. The four cancers that can be treated, even in developing countries, and are prevalent in several regions of the world are: cervical cancer, smoking-related cancers, breast cancer, and liver cancer. „„ Promote capacity building. Ministries of Health, Education and Finance need to be engaged in developing and supporting national plans that include: training personnel with the necessary skills to diagnose and treat cancer patients, strengthening medical institutions and diagnostic laboratories, addressing service delivery and access issues, developing country-level and country-led initiatives, facilitating the development of specialized cancer centers, and fostering sustainable programs. „„ Develop effective cancer surveillance. More useful cancer data are important for the development of programs that address disease, to measure progress achieved by interventions, and to better understand both the burden of disease and needed responses. Without a standard set of metrics and methodologies, addressing the scale and scope of chronic diseases in developing countries will likely remain on the “back burner” as more pressing needs take center stage. „„ Focus on locally relevant approaches. Using a combination of local resources and external partnerships, programs and models can draw on local interventions that address other diseases, education, behavior change, community development, and other issues. This approach can highlight best practices to develop a cancer response that is sustainable and multisectoral, reinforcing the most promising locally appropriate programs and models. „„ Emphasize information sharing and awareness raising. Advocacy efforts should focus on increasing cancer awareness on a global scale by engaging donors, decision makers and government officials in both high-income and developing countries, journalists who report on global health issues, and other stakeholders. Awareness-raising campaigns should promote key internal leaders, program implementers, patients or clients, families and others who can deliver an effective message about the importance of addressing cancer and chronic diseases in developing countries. Cervical cancer is just one example of the need for early diagnosis, as early intervention leads to positive outcomes. Pap smears are proven diagnostic tools, but they are rarely available in developing countries. Therefore, the two major options for diagnosing cervical cancer that have emerged are HPV testing and visual inspection. With HPV testing of high-risk women, providers can target women who are more likely to develop cervical cancer. A single-round HPV test has been developed in Tanzania to identify the virus in high-risk individuals, allowing diagnosis and treatment in one visit. However, diagnostic tools developed and used in one country may not work in another; there is a need for analysis of what works and where it works. In addition to availability of tools and services, culture and perception play a role in care-seeking behavior. Many people in developing countries equate cancer diagnosis with a death sentence – this is largely because their experience is that people do not recover from cancer. However, with earlier 42 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Without a standard set of metrics and diagnoses and better health outcomes, this perception could change from a fearful or fatalistic view to a more hopeful outlook. Another problem is that cancer is seen as a problem of elderly people and/or people in rich countries; this perception may deter people from screening, as they may not see cancer as a problem for them.

methodologies, addressing the scale and scope of chronic diseases in developing countries will

likely remain on the “back Although some infrastructure does exist to diagnose and treat cancer in certain countries, its specific location burner” as more pressing and capacity is generally not widely known among the health community. Countries should conduct a needs needs take center stage. assessment to determine what diagnostic services are available in which facilities; the international community should assemble a global map of service. With such a study, opportunities for building an infrastructure would be more apparent, as the mapping exercise would identify areas with low diagnostic capacity. Prevention. For many cancers, the notion of prevention seems abstract—unlike, for example, many infectious diseases that have simple and relatively inexpensive prevention intervention strategies. In addition, unlike large-scale interventions that address the health concerns of thousands of people – e.g., immunization or oral rehydration campaigns, clean water efforts, and nutritional supplementation with vitamin A or zinc—cancer prevention seems more individualized and may be considered complex. However, prevention and control activities are key components in reducing the burden of disease. Actually, there are some very simple methods to help prevent certain cancers that are not generally on the radar screen of government agencies and organizations that are normally involved in global health. For example, for hepatitis-related cancers, vaccinations are the predominant tool available. Immunization is also used for other cancers, notably the HPV vaccine for cervical cancer, though the vaccine is still cost-prohibitive in many developing countries. Strategies to prevent sexually transmitted infections should include promotion of condom use and education about other safer sex practices. In addition, encouraging healthier diets and exercise can lower the risk or impact of cancer, and seeking preventive care services can identify potential problems early. A growing area of concern is the increase in smoking and incidence of lung cancer in developing countries. Smoking-related cancers are preventable and public health interventions to reduce tobacco consumption are needed. Smoking often has a cultural component—it is a part of life, a part of socializing and a part of projecting an image to others in society. Smoke-free policies are beginning to gain support globally and need to be more thoroughly developed and enforced. In particular, a greater effort needs to be placed on making certain locations, such as schools and hospitals, smoke free.

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Countries need to develop programs and guidelines that are more efficient for their disease burden and resources, rather than focusing on programs that have the best and latest technologies. Prevention plans need to focus on what is feasible and realistic in each country and region, including specific training needs. These plans also need to develop a strategy for action. There has been an underinvestment in long-term prevention programs. Countries need to develop programs and guidelines that are more efficient for their disease burden and resources, rather than focusing on programs that have the best and latest technologies. Prevention plans need to focus on what is feasible and realistic in each country and region, including specific training needs. These plans also need to develop a strategy for action. Treatment and care. There is a movement to “treat the treatable.” Several cancers, including cervical and breast cancer, have established protocols for treatment—the barrier is resources (human, financial and material and infrastructure). Infectious diseases and cancers related to these diseases lend themselves to relatively low-tech solutions. For example, for the HIV-related cancers, the best treatment is to treat the HIV infection. The key concerns are less about price and more about access and training that allow for the accurate identification and appropriate treatment of disease. It is also cheaper to treat certain diseases earlier then treating them with palliative care later on. For example, it is significantly cheaper to treat stage two or three cervical cancer than to pay for even morphine for someone with stage-IV cancer. Low-technology alternatives may be overlooked in favor of efforts to recreate a Western/Northern model of cancer treatment in developing countries and to develop new markets for products and devices that use advanced technology. Medical technologies need to be developed that fall between the most basic and the most advanced, and are tailored to specific populations in order to mitigate costs and provide the widest range of services and care. It would be unrealistic to go from the current dearth of tools, personnel or resources to requiring treatment regimens that require large-scale infrastructure—it is important to think about the problem more pragmatically. It is necessary to identify ways to work in a less developed environment and bridge the gap between the extreme ends of the technology spectrum. Additionally, there is an opportunity for industry to re-tool older products that are no longer marketed in developed countries for developing country use, as this could have a substantial impact on cancer-related illness in low- and middle-income countries. If physicians receive the training they need to administer such therapies and the infrastructure is present, there is an opportunity to provide these older, less expensive treatment methods. There needs to be an assessment of the cost of using or adapting older technologies – these treatment methods could be cost-effective if the methods are effective in treating the disease. Access to care, including palliative care, for the broad range of cancers and their associated health conditions is needed. It is also essential to address the course of the disease – from prevention to pre44 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Low-technology alternatives may be overlooked in favor of efforts to recreate a Western/Northern model of cancer treatment in developing countries and to develop new markets for products and devices that use advanced technology. Medical technologies need to be developed that fall between the most basic and the most advanced, and are tailored to specific populations in order to mitigate costs and provide the widest range of services and care. cancerous conditions to malignancies to end-of-life care—generating a multidisciplinary treatment strategy, rather than simply end-of-life care, for those with cancer. In many developing countries, there is one level of health care so clinicians need to have the ability to treat multiple conditions, such as both infectious diseases and cancer. Given the number of people with HIV-related cancers in developing countries, a system should be developed that links HIV care with home-based care for cancer. In developing countries with functioning or stable health systems, the system is likely designed to address the traditional health priorities of infectious diseases and maternal and child health. Cancer programs may have little leverage when it comes to changing existing health systems to include cancer-related priorities. Since cancer has not been a priority, there is not a robust treatment system in place, and there may only be treatment options for certain cancers.

Resources, infrastructure and sustainability Resource mobilization. There are three major issues in resource mobilization: the lack of funding for needed and future cancer prevention, treatment and care; structural issues with how funding is allocated for cancer and other diseases; and absence of key actors from the discussions related to financing cancer services in the context of other health needs. Significant and sustained sources of funding for cancer work are needed. In addition to more funds, there is a need for a more systematic response to cancer, which may include integration with other diseases. In many cases, cancer funding is largely piecemeal, with external donors funding specific projects or programs in selected countries. This problem is confounded by the fact that some donors earmark funding for specific activities. The donor community needs to develop a better understanding of cancer-related activities in developing countries. There is a need to revisit the current funding structure, which is based on a vertical, disease-specific model. Comprehensive methods to address global health needs would allow links between programs and diseases to be established, and the best practices/methods for research and programming to be featured. Resources should benefit multiple groups (not just those with cancer). In addition to adding new resources, via activities to engage foundations and corporations, a key element of financing cancer control is using existing resources in a more effective manner—policy and decision makers need not perceive the problem as too difficult to tackle. There is a need for a more inclusive approach to funding cancer that brings government officials The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 45


from multiple sectors to the table with practitioners, program implementers, researchers, donors, corporations and other actors. The Ministries of Health are not the only government officials whose work is affected by the health of the workforce. Ministries of Finance need to be informed about the long-term economic impact of job loss and early retirement caused by cancer. These issues, in addition to the relative lack of available and sustained funds allocated for cancer control, are critical for the development of cancer control programs in countries and regions. Sustainability. In addition to being limited in size and scope, cancer projects are not particularly sustainable under the current funding framework. There is a need for sustained projects that can harness and move both patient care and the policy agenda, raising awareness and visibility of cancer control efforts in all developing regions (Africa, Latin America, Asia, and Eastern Europe). These efforts should identify, coordinate, and build capacity of the organizations that are already providing leadership. Efforts to address cancer in the developing world have been fragmented, so there needs to be objective evaluation over what works (and what does not work) in particular settings. In addition, there is a need for sustainability in terms of infrastructure, human resources, and funding. Greater engagement with various stakeholders is needed to foster relationships with pharmaceutical corporations, undertake collaborative efforts to train medical staff, and develop and sustain additional medical schools and pathology laboratories. An assessment of education needs at various levels of the health system would provide valuable information. Lack of diagnostic facilities is a major impediment to both meeting the needs of health care providers and patients, and improving local capacity building efforts. However, training and capacity building must be coupled with assured salaries, and opportunities for work. Another way to build sustainability is to incorporate chronic diseases into efforts like the Millennium Development Goals—given the association between chronic diseases and several MDGs, ignoring chronic diseases may prevent achievement of some MDGs. Similarly, the development of metrics for chronic diseases will allow them to be incorporated in global health initiatives. Infrastructure. It is not enough to have protocols; if the infrastructure is not available to carry out the needed functions, then people will not receive the services they need. There are opportunities to link cancer programs with other programs and infrastructure that are already in place. For example, there is already an established infrastructure already in place for research, policy and treatment of HIV and other infectious diseases in developing countries. Cancer registries and systems to systematically evaluate infrastructure, service delivery, and health outcomes in developing countries are lacking. For example, Macro International has been working on better methods of cancer surveillance in the United States that could also be applied to the developing world. These systematic tools are important for building the evidence base to understand cancer in country settings, to identify areas of need, and to assess progress. There is a need to identify, coordinate, and develop capacity building interventions for the organizations that are already providing leadership. In addition to partnering with organizations working on chronic diseases, infectious diseases, and maternal, child and reproductive health 46 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


It is not enough to issues, it is important to look at new partners, such as the environmental health or food security communities, to find common ground – the goal is to move away from competing for resources and attention and move to a more supportive engagement approach for global health.

have protocols; if the infrastructure is not available to carry out the needed functions, then

Personnel and funding are important considerations for people will not receive the the research infrastructure—there is a need for trained people and the resources to conduct rigorously designed services they need. studies. Statisticians, health services researchers, evaluation experts, operations researchers are needed to assess the whole system to identify weaknesses. Improved training will raise the quality of research (such as the Fogarty epidemiology and implementation efforts). It is also essential to have a system to generate innovative ideas to solve long-standing and emerging problems.

Research issues in cancer There are several key research issues related to cancer in developing countries: focusing on areas of greatest potential impact, evaluating programs and interventions, building the country-specific evidence base and capacity for research, and examining factors related to cancer, such as healthseeking patterns in a cultural, familial, financial and geographical context. Breast, cervical, smoking-related and liver cancers are among the cancers where progress can be readily made—there are prevention and treatment options for these diseases. In addition, these cancers are prevalent in many developing countries. Therefore biomedical, programmatic and behavioral research should prioritize these topics. Cancer registries to measure the number of cases of cancer are important, but because they do not generate income, they need to be supported – mechanisms to achieve this need to be developed. Lack of data has lead to an incomplete picture of the impact of cancer; more comprehensive and routine data collection is needed. Cancer programming and research efforts in the developing world are fragmented, so objective evaluations and routine monitoring of interventions, as well as operations research to better understand the overall system, are essential to determine effectiveness. Palliative care is an essential area for additional research—in many developing countries, the only pain medication available is extra-strength Tylenol—enabling a better palliative care system to build on existing networks. Clinicians and researchers need to collaborate to advance research, monitoring, and evaluation programs. There needs to be an understanding of methodologies in context, so that the strongest evidence informs policy and practice. For example, taxation of tobacco products may deter their use in certain countries, but in many developing countries, there is such a wide black market that taxation has no affect on cigarette consumption.

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Compared to the United States and other industrialized countries, therapies may be different in developing countries, given a different population, nutritional status, and disease profile; research is needed to determine whether treatments may be adopted or adapted before large-scale implementation efforts are undertaken. There is also a need for studies that focus on the populations who will be using the therapies instead of relying on studies that enrolled predominantly Americans of West European descent. Some studies could focus on, for example, African Americans in the United States to assess their respond to different therapies; studies could determine whether people of African descent residing in different continents differ in terms of certain generic traits. Ultimately, there is a need for research conducted in the location of interest.

Communications, advocacy and policy Research to policy. Cancer is largely underfunded and, until evidence-based messaging can effectively describe the burden of cancer, it will not be identified as a global problem. Given progress on other global health issues, integrating cancer into the existing policy infrastructure (such as infectious diseases and reproductive health) is a potentially successful strategy. Programmers and researchers need to share information about existing infrastructure so that studies and care can be provided, rather than using time and resources to build new facilities that replicate existing ones. Countries do not want to base policy on flawed research, so it is important to increase the quality of research and to translate findings into policies that can be implemented. It is also important to ensure that research findings are presented in language that policy makers will understand and that will motivate them to take action. For example, in a Tanzanian meeting between researchers and policy makers, the research articles were translated into more basic and concise language in order to communicate the problem more accurately and efficiently. Mobilizing and educating. Mobilizing people to take action to develop or support efforts to mitigate the effects of cancer will require collaboration between organizations that work on infectious diseases, maternal and child health issues, and others global health issues to coordinate their work. Messaging should move people from thinking about cancer as “taking away from� another disease area and to think of cancer as a being one component of a patient’s health. The global health community must move away from the vertical approach and toward a comprehensive view. Therefore, it is essential to engage in a conversation that not only focuses on cancer, but also encompasses reproductive health issues and co-infections, such as HIV/AIDS. Education is one of the more difficult pieces of cancer control, because the target population has to increase knowledge and be willing to change behavior. For example, there is a need to explain why smoking is an unhealthy habit and increases your risk of developing cancer. Educators can play a role in the behavioral change, but also in teaching various populations, from the general public to skilled community workers to health care professionals (e.g., physicians, nurses and laboratory technicians).

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Cancer is largely underfunded and, until In addition, there is a need to educate the donor community, civil society organization, government officials and other stakeholders. These information exchanges need to meet each stakeholder’s needs and need to occur at every level—from local engagement using materials available for low literacy levels to international dialogue. For example, issues related to tobacco control include local screening and treatment, as well as negotiations on Framework Convention on Tobacco Control.

evidence-based messaging can effectively describe the burden of cancer, it will not be identified as a global problem.

Specifically, there is a need for educational advocacy among patients, governments, and health care workers about counterfeit and substandard drugs and making sure that people complete their treatment regimens. Since cancer drugs are often quite expensive, a higher profit margin may encourage counterfeiting drugs. Another potential problem is diluting drugs to make them go farther – i.e., substandard treatment. Counterfeits are not a significant problem for lung cancer because the treatment is predominantly done through infusion methods. Communicating and advocating. There is a need to move people from thinking of cancer as taking away from other health issues and instead think of it as care at the patient level— moving away from a disease-specific approach to global health and toward something significantly more comprehensive. Media needs to disseminate the research findings to individuals in developing countries, as well as make research from developing countries available to a wider audience. Many studies from developing countries do not receive as much publicity and are not published in mainstream media or peer-reviewed journals. Advocacy efforts need to raise awareness about and visibility of the global effects of cancer.

The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 49


Understanding the Burden of Cancer In Developing Countries

T

his section includes highlights from two Global Health Council panel discussions held in Washington, DC on March 11, 2010 and June 15, 2010. The following summaries were prepared by the Global Health Council and reviewed by the speakers. The goal of the sessions was to raise awareness of cancer in the global health policy and advocacy

community. The discussions featured the following topics: ŠŠ Tobacco Control, American Cancer Society Fighting an Unpopular War and Responding to the Growing Problem of Tobacco Use by Loyce Pace Bass and Jacqui Drope ŠŠ Cervical Cancer Control, Pan American Health Organization Addressing Cervical Cancer in Latin America and the Caribbean by Silvana Luciani ŠŠ Cancer Control in India, The Max Foundation A Picture of Cancer in India by Viji Venkatesh ŠŠ Cancer Awareness and Support, Novartis Social Media Using Technology and Social Media to Support Patient Advocacy by Mary Sibley

Fighting an unpopular war and responding to the growing problem of tobacco use Loyce Pace Bass and Jacqui Drope, American Cancer Society, March 11, 2010 Over the next 20 years, cancers are expected to become the leading cause of global deaths. Cancer is everywhere, though the types and relative impact differ from region to region. In Africa, cervical, breast, liver and prostate cancers are prevalent, as are cancers associated with HIV/AIDS such as Kaposi’s sarcoma. Types of cancers also differ by sex—among men, lung cancer is the number one cause of cancer deaths; it is the fourth leading cause of cancer deaths among women. Tobacco, which accounts for about 30 percent of all cancer deaths, is the single most preventable cause of mortality in the world. It currently kills an estimated 6 million people annually and is projected to cause 1 billion deaths during this century. About 70 percent of tobacco related deaths are in low- and middle-income countries. Exposure to second-hand smoke increases the risk of both cancer and heart disease by about 25 percent. Africa has become the “final frontier” for the big tobacco companies, as they see a growth opportunity for the industry. They use corporate social responsibility strategies to attempt to portray the 50 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


company’s positive impact on society and the environment while at the same time promoting a product that contributes to death and disease. Tobacco use in Africa is reinforced by the perceived “Western� status given to cigarette use. Limited data on smoking and its associated disease burden has led to a low reported prevalence, but there is an increasing trend of smoking and associated health problems.

Based on the experience of tobacco use in many countries, a common, four-stage pattern of tobacco use and subsequent deaths has emerged. In general, the trends for women follow those of men but are offset by about 20-30 years. Sub-Saharan Africa, with low but rising prevalence of smoking particularly among men, is in Stage 1. Several Asian countries, Latin America and North Africa are The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 51


in Stage 2, characterized by a growing number of both male and female smokers and the beginning of deaths due to smoking among men. Eastern and Southern Europe are in Stage 3—a reduction in smoking rates among men, plateau among women, but increasing deaths of both men and women. Western Europe, the U.S., Canada and Australia are in Stage 4, in which smoking is declining among men and women, deaths are starting to decline among men, but are still increasing among women.

Framework Convention on Tobacco Control (FCTC) The FCTC is the world’s first public health treaty, with 168 parties and covering 86 percent of the global population. It is used as the basis for expanded evidence-based programs and campaigns. Most importantly, it legitimizes the tobacco control issue. The current challenge of the FCTC is enforcement and execution. Among the provisions of the FCTC is a comprehensive ban on advertising, sponsorship and promotion, with narrow exceptions for countries such as the U.S. that face constitutional conflicts. Labeling issues are also addressed, with requirements that warning labels cover at least 30 percent of the principal display areas and that deceptive and misleading labels, such as “light” and “low tar,” be eliminated. In addition, the FCTC includes measures to protect populations from exposure to second-hand smoke in public places and places of work, and to reduce tobacco smuggling. The treaty encourages parties to enact other tobacco control policies, such as: ŠŠIncreasing tobacco taxes; ŠŠEliminating duty-free sales of tobacco products; ŠŠConsidering litigation against the tobacco industry; ŠŠProhibiting the sale of tobacco to minors; and ŠŠIncluding tobacco cessation services in national health plans. 52 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


The context of chronic and non-communicable diseases Chronic and non-communicable (NCD) conditions are the leading causes of death worldwide, with the exception of sub-Saharan Africa; chronic disease mortalities will overtake those of infectious diseases in that region as well by 2030. The growth of chronic diseases and NCDs is exacerbated by substance use – including tobacco, alcohol and drug use—unhealthy diet and physical activity. Out of the 35 million people who died from chronic diseases in 2005, one-half were under 70 and one-half were women. Over the next decade, if not addressed effectively, chronic diseases will increase by 27 percent in Africa, 25 percent in the Middle East and 21 percent in Asia and Pacific, accounting for 75 percent of all deaths globally.

Three Tobacco Control Projects in Africa Africa Tobacco Control Regional Initiative—a continent-based center for promotion of effective policies through advocacy, research, surveillance, training; ATCRI is a critical actor in lobbying for the FCTC. The organization’s goal is to develop solutions to the tobacco pandemic that are “by Africans, for Africans.” This first Africa-based regional tobacco control organization was launched in 2008 with seed funding from the American Cancer Society and Cancer Research UK. ATCRI has the following goals: ŠŠImprove data collection ŠŠPromote domestic legislation ŠŠRaise public awareness ŠŠImprove treatment access ŠŠAddress resource limitations Africa Tobacco Control Grant Projects—are focused on establishing tobacco control legislation and enforcing existing smoke-free policies. These projects use private-sector engagement and youth mobilization to demonstrate proven tobacco control best practices. There is a focus on innovative interventions and technologies for tobacco control communication and advocacy. A new component of these projects is economics, industry and tax research. Africa Tobacco Control Consortium—is a coalition of public health organizations focused on preventing a tobacco epidemic in Africa. The Consortium is coordinated by the American Cancer Society in partnership with the Africa Tobacco Control Regional Initiative (ATCRI), Africa Tobacco Control Alliance (ATCA), Framework Convention Alliance (FCA), Campaign for Tobacco-Free Kids (CTFK), and the International Union Against Tuberculosis and Lung Disease (The Union). This five year project is funded primarily through a $7 million dollar grant awarded by the Bill & Melinda Gates Foundation. The focus of the Consortium is to implement policies articulated in the FCTC, including smoke-free places, advertising, labeling and taxation. Their approach is to advance policy through advocacy, protect policy through countermeasures and promote policy through research. The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 53


Setting the agenda Advocacy for chronic and noncommunicable diseases is a growing global health priority. There is a need to develop integrated global health goals, interventions, or campaigns, and to mobilize financial and human resources to address the disease burden in developing countries. Building the evidence base is a priority to ensure that recommended actions are grounded in research-supported policies. In terms of specific activities, there is a need to develop and monitor comprehensive national or state cancer/NCD plans. In addition, the Framework Convention on Tobacco Control needs to be ratified and enforced. These issues are on the G8/G20 radar, with a cancer panel slated for June 2010. Other meetings include a review of Millennium Development Goals and potential inclusion of NCDs, in September 2010, and UNGASS on NCDs in 2011. In the U.S. priorities include FCTC ratification, implementation of the Global Health Initiative and integration of cancer/NCDs in current women’s health, health systems, or other funding streams. U.S. developing country funding for cancer and NCDs is relatively lower than other health issues relevant in developing countries. Civil society initiatives include involving industry and focusing on regional collaborations. Among the industry initiatives underway are sessions at the Corporate Council on Africa Business Summit in 2009 and the World Economic Forum. Regional collaborations include summits in Africa and Latin America. Media engagement is also a priority to advance cancer control and civil society efforts.

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Additional resources:

• ACS Training for Journalists and NGOs in Vietnam – http://www.youtube.com/watch?v=mKj-VxSU9dQ • Breast Cancer Early Detection (BHGI) – http://portal.bhgi.org/Pages/Default.aspx Cancer Atlas – http://www. cancer.org/downloads/AA/CancerAtlasFront.pdf 54 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


• Cervical Cancer Prevention (PATH) – http://www.path.org/cervical-cancer.php • Global Cancer & NCD Advocacy – http://www.who.int/ncdnet/en/ • Global Tobacco Control Advocacy – hhttp://www.fctc.org/ • North Africa ‘Smoke-free at Work’ Program from the American Cancer Society—http://www.youtube.com/ watch?v=vz8p-gi5L5w • Public Cancer Program Planning – http://www.uicc.org/templates/uicc/pdf/nccp/nccp.pdf • Smoking in Africa on VOA’s In Focus – http://www.youtube.com/watch?v=RGayYdHkaNs • Tobacco Atlas – http://www.cancer.org/docroot/AA/content/AA_2_5_9x_Tobacco_Atlas_3rd_Ed.asp • Tobacco Control: Smoke-free Air (GSP) – http://www.globalsmokefreepartnership.org Loyce Pace Bass is Director of Regional Programs in Global Health, American Cancer Society (ACS), where she oversees the strategic planning and coordination of initiatives in Africa and Southeast Asia. In this capacity, she has developed inaugural regional assessments, networks, and capacity-building engagements for cancer control stakeholders. Her work has informed department grantmaking and evaluation protocols, and launched innovative training and pilot programs that address research, prevention, and advocacy. In addition to her work in Global Health, Ms. Pace has held a number of community-outreach positions with American Cancer Society. She also has worked in West Africa with Catholic Relief Services and on other international health development campaigns through Physicians for Human Rights and Stanford University Center for Health Policy. Ms. Pace holds an Honors degree from Stanford University and graduated Delta Omega with a Master’s Degree in Public Health from Johns Hopkins Bloomberg School of Public Health. Jacqui Drope is the Senior Director for Tobacco Control, African Region at American Cancer Society. Previously she worked with IDRC where she specialized in developing policies and programs that address the threat of tobacco consumption and production to human health, with a focus on Africa. Drope was a tobacco control consultant for various health organizations, including the Ontario Tobacco Research Unit (OTRU), the World Health Organization, and Health Canada. For OTRU, she developed an online course on tobacco control for public health professionals, which received the University of Toronto Fred Fallis Award for innovation and excellence in the design and delivery of online learning for health professionals. She was also a research officer at the University of California’s Center for Tobacco Control Research and Education. Drope holds a Master’s of Public Health degree from the University of Sydney (Australia).

Cervical cancer in Latin America & the Caribbean Silvana Luciani, Pan American Health Organization, March 11, 2010

How cervical cancer develops Most cervical cancers are caused by infection with human papillomavirus (HPV), which invades cells in the cervix. Abnormal cells progress to form pre-cancerous lesions and then malignant tumors. The development of cancer can take months or years, and symptoms may not appear until the abnormal cells invade nearby tissue. Symptoms can include: abnormal bleeding, heavier and long-lasting periods, unusual vaginal discharge, pelvic pain, weight loss, fatigue, and abnormal bleeding between menstrual periods or after menopause or intercourse. Advanced cervical cancer can spread to the bladder, intestines, lung and liver. Diagnosing cervical cancer can be conducted with a Papanicolau test (or Pap smear). However, many women in developing countries do not have access to Pap smears and rely on visual identification of abnormal cells. This delays diagnosis, as pre-cancerous lesions may not be identified. There are many serotypes of HPV, though most cancers are caused by two: 16 and 18—these subtypes account for The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 55


about 66 percent of HPV infections in Latin America and the Caribbean (LAC). Infection by these subtypes can be prevented with the vaccine, but many women and girls in developing countries do not have access to the vaccine because of the prohibitive price. Treatment, including surgery, chemotherapy, cryotherapy, and radiation, varies according to the stage at which cervical cancer or pre-cancerous lesions are detected. Risk factors for cervical cancer include: having sex at an early age, multiple sexual partners, participating in high-risk activities, weakened immune system and poor economic status with limited access to health care. Thus, programs to prevent cervical cancer need to include young women and girls, and focus on finding ways to distribute the HPV vaccine.

Cervical cancer in the Latin American and Caribbean (LAC) Region In parts of Latin America and the Caribbean, more women die from cervical cancer than from complications of childbirth. It is the most frequent cancer among women in the region, affecting an estimated 200,000,000 women, causing 72,000 new cases per year and 33,000 deaths annually. Compared to North America, cervical cancer incidence and deaths are about four-fold higher in South and Central America and the Caribbean, which is exacerbated by an eight-fold lower per capita income in the LAC region. Health care is limited in many LAC countries, resulting in higher maternal and infant mortality rates. USA

LAC

Population (thousands)

314,659

582,390

Gross National Income (per capita; USD)

46,040

6,009

Maternal Mortality Ratio (per 100,000 live births)

13.3

87.4

Infant Mortality Ratio (per 100,000 live births)

6.7

18.7

Urban Population (Percent)

82

79

Four countries in the Americas have an HPV prevalence of greater than or equal to 30 percent: Honduras (37 percent), Trinidad and Tobago (35 percent), Guatemala (33 percent) and Costa 56 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Rica (30 percent). These countries also report higher rates of cervical cancer mortality than some other countries in the LAC region and have higher rates of mortality attributed to the disease. HPV prevalence in the United States and Canada is relatively low at 13 and 10 percent, respectively, and mortality rates are significantly lower than in the LAC countries.

Data sources: IARC, Globocan 2002, WHO GBD 2004

HPV Prevalence (Top) and Cervical Cancer Mortality (Bottom)

Data sources: IARC, Globocan 2002, WHO GBD 2004; Data sources: ICO/WHO Summary Report Update. Americas. October 9, 2009 The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 57


Inequity between developed countries and LAC Program organization, screening technology and factors associated with women are the main factors that contribute to inequity. The coordination of health interventions that focus on women and girls should include a component on cervical cancer and the importance of prevention and screening. Screening technologies include a new HPV DNA test to detect infection, as well as visual inspection with acetic acid (VIA). The “screen and treat approach” is valuable method in addressing cervical cancer in a timely fashion—following visual identification of lesions, cryotherapy can be used in the same health care visit, thus reducing delayed treatment or loss to follow-up care that may result if he patient has to return at a later time. Enhancing screening techniques, including making the Pap smear more widely available, and ensuring access to both the HPV vaccine and appropriate treatment will begin to address the inequity gap. However, the broader health systems issues will require additional efforts to reduce inequity.

PAHO’s role in improving conditions The Pan American Health Organization’s work focuses on advocacy, program support and operational research. PAHO’s strategy to reduce cervical cancer mortality and morbidity is to improve capacity for comprehensive cervical cancer prevention and control. This strategy has five main components: health education, screening, pre-cancerous treatment, treatment and palliative care, and introduction of the HPV vaccine. PAHO supports numerous cervical cancer initiatives and community-based projects throughout Central and South America. PAHO is part of the Alliance for Cervical Cancer Prevention (ACCP), a group of five organizations that works to “clarify, promote, and implement strategies for preventing cervical cancer in developing countries.” The Alliance works in sub-Saharan Africa, Latin America, and South Asia, and currently has projects in Thailand, Bolivia, Peru, Malawi, South Africa, Kenya, India, El Salvador, Ghana, and other countries. The Alliance investigates and assesses new methods of cervical cancer detection in developing countries, and ensures that all stakeholders, including doctors, patients, and the broader community, have a role in developing cervical cancer programs. PAHO also leads the Collaborative Action for Risk Factor Prevention and Effective Management of NCDs (CARMEN), a network for the prevention and control of chronic diseases in the Americas. CARMEN supports integrated prevention for NCDs, and promotes prevention strategies that are responsive to underlying health inequities. Monitoring and evaluation are also key components of programs developed by CARMEN, which requires all chronic disease programs to prove a “demonstrative effect” on health outcomes. In addition the ACCP and CARMEN, PAHO supports a number of other cancer initiatives. To learn more about these programs, please visit: http://new.paho.org/hq/index.php?option=com_content&task=view& id=292&Itemid=386.

58 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Conclusion A comprehensive and integrated approach to cervical cancer prevention and control is urgently needed in LAC – one that combines prevention, screening and treatment. This approach can address women at risk, as well as those that need immediate treatment. The prevention of HPV infection remains the most promising way of addressing cervical cancer in LAC. However, access to the HPV vaccine is a major barrier, as the price of the HPV remains prohibitively expensive. Fortunately, there is a strong evidence base and practical tools that can be used to improve the effectiveness of HPV programming.

Additional resources:

Pan American Health Organization. Cervical cancer: PAHO Activities. Available from: http://www.paho.org/english/ ad/dpc/nc/cervical-cancer.htm?Page=Activities https://health.google.com/health/ref/Cervical+cancer Silvana Luciani is an advisor in the Chronic Disease Prevention and Control Project, in the area of Health Surveillance and Disease Prevention and Control at the Pan American Health Organization. She is responsible for cancer prevention and control, which includes leading and overseeing the cervical cancer prevention and control strategy for Latin America and Caribbean (LAC). For over 10 years, Ms Luciani has been providing technical assistance and support to countries in LAC to evaluate and improve cancer programs, including setting up demonstration projects on alternative approaches for cervical cancer prevention. Prior to joining PAHO, she worked with the Canadian federal government, where she directed national health programs on cancer prevention, on tobacco control and on nutrition. She has a Masters of Health Science degree in Community Health from the University of Toronto.

A picture of cancer in India Viji Venkatesh, The Max Foundation, March 11, 2010

Health in India India is the second largest country in the world, with a population of approximately 1,140,000,000 people. Of this, 250 million people do not have access to basic medical care, and 318 million do not have access to potable drinking water. Over half of the children in the country are undernourished, and many of the children living in urban areas are at risk of obesity due to changing diets. While India continues to struggle with many infectious diseases, non-communicable diseases, such as cancer and diabetes, are on the rise.

Cancer in India Common cancers in India include malignancies of the head and neck, cervical cancer, and breast cancer. Risk factors for most of these cancers have been identified, and most are can be prevented and detected early with the right knowledge and equipment. However, the growing burden of disease far outweighs the resources available for cancer prevention, detection, treatment, and palliative care.

The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 59


Estimates of Cancer Burden in Males, 2006 and 2016 Type of Cancer

2006

2016

Lip

1,535

2,032

Tongue

22,775

30,269

Mouth

22,603

29,962

Breast

2,367

3,127

Prostate

20,134

27,215

Lung

45,292

60,730

All sites

295,383

391,821

Estimates of Cancer Burden in Females, 2006 and 2016 Type of Cancer

2006

2016

Breast

104,968

140,975

Cervical

No data available

Ovarian

27,159

36,085

Stomach

13,029

17,699

Mouth

16,072

21,951

All sites

232,317

312,388

Estimates for both tables from the Tata Memorial Hospital

Tobacco consumption in India In India, tobacco consumption is socially accepted and comes in many different forms, including smoking and “smokeless” tobacco. Tobacco use varies across the country, both in prevalence and in method of consumption. Beedis are the most popular form of smoking in India, and they are made by rolling a dried, rectangular piece of leaf around approximately a quarter of a gram of sundried tobacco. Other forms of smoking tobacco use in India include: ŠŠChuttas (coarse roll made from tobacco leaves) ŠŠHookah (water pipe) ŠŠDhumiti (conical cigar made with plant leaves) ŠŠHooklis and chillum (clay pipes) ŠŠCigars and cigarettes “Smokeless” tobacco is currently gaining popularity in India, and may be consumed orally (chewing, sucking, applying tobacco preparations to teeth and gums) or nasally (inhalation). Some suggest that many of these new forms of tobacco are easier to use and reduce the stigma associated with tobacco use. Forms of “smokeless” tobacco use in India include: 60 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


ŠŠPaan with tobacco (chew made from betel leaf, areca nut, slaked lime, catechu, and tobacco) ŠŠPaan masala (commercial powdered version of paan with tobacco) Tobacco is also used in many dental products in India, as many people believe that tobacco is beneficial for teeth. Although Indian law dictates that tobacco cannot be included in dental products, many tobacco products are advertised and sold right next to dental products, making it difficult for the consumer to tell the difference. It is important that global health professionals are aware of this misconception, and consider the perceived benefits of tobacco use on oral health when planning interventions. Tobacco use serves an important social and cultural role in people’s lives; smoking may be used to foster solidarity and friendship, or to promote a spirit of emancipation and modernity. It is important that global health professionals are sensitive to the social and culture value of tobacco consumption, so that they account for these factors in their intervention and program design.

Tobacco-related deaths As a result of widespread tobacco use, cancers of the head and neck, esophagus, lung, and sub-mucus fibrosis are common. Recent evidence has also shown that smokeless tobacco is carcinogenic and may contribute to cancers of the oral cavity and the pancreas.

Breast and cervical cancer Breast cancer is also common in India. Risk factors include: late age at marriage, delayed menarche, delayed pregnancy, absence of breast feeding. Risk factors for cervical cancer include: early age at marriage, multiple pregnancies, unhygienic living conditions, and lack of access to periodic screening.

Challenges to addressing cancer in India There are numerous geographic, cultural, and logistical challenges to tackling cancer in India. India is one of the largest countries in the world, and has the second largest population. It is a very diverse country with many different languages (or dialects), landscapes, traditions, diets, and beliefs. In response to this great diversity, interventions must be tailored to each community. Understanding local norms, practices, and beliefs is essential to developing culturally-appropriate programs. Strong health systems are crucial to addressing the growing burden of cancer in India. Too few health professionals are trained in cancer diagnosis and treatment, and too few health facilities are equipped to provide cancer-related services. Cancer drugs are extremely costly, and may not be readily available at local health facilities. Lack of public sector support, including the absence of public insurance option and no governmental subsidizes for cancer drugs, also prevents people from accessing care. Ignorance and fear about cancer also prove to be severe obstacles for India’s cancer education, prevention and treatment programs. Many people believe that a cancer diagnosis is equivalent to The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 61


death, and are reluctant to get tested if they think recovery is impossible. Others believe that having cancer is a punishment for past sins, and accept their illness as God’s will. These myths make people reluctant to seek care or treatment, and add to the challenge of delivering cancer care in a developing country.

Strategies needed to tackle cancer in India Several different strategies are needed to tackle cancer in India, including: ŠŠAccess to treatment ŠŠOutreach intervention ŠŠEstablishing support systems for patients and families ŠŠSupport and training for physicians ŠŠCreating awareness ŠŠSetting up education programs ŠŠPromoting concept of good treatment compliance

The Glivec International Patient Assistance Program (GIPAP) The Glivec International Patient Assistance Program (GIPAP) provides Glivec (imatinib) for free to cancer patients who cannot afford the drug in developing countries. The program was launched by Novartis in 2002, and is supported by the Max Foundation. There is a specific set of criteria patients must meet in order to participate in the program, and the Max Foundation is responsible for assessing each patient’s eligibility. Since its inception, GIPAP has provided medication to people living with cancer in over 80 countries, including India. GIPAP started in India in 2002, and by 2007 nearly 9,000 people were supported by the program. Over 99 percent of all people in India taking Glivec are covered by GIPAP. Glivec is provided directly to patients by a qualified physician, and in India nearly 90 physicians are certified by the program.

Additional resources:

Ministry of Health and Welfare, Government of India, Centers for Disease Control and Prevention, USA, and World Health Organization. Report on Tobacco Control in India. 2004. New Delhi: World Health Organization. Available from: http://www.whoindia.org/SCN/Tobacco/Report/TCI-Report.htm. Novartis. The Glivec International Patient Assistance Program (GIPAP). Available from: http://www.novartis.com/ downloads/about-novartis/GIPAP-India-backgrounder.pdf. The Max Foundation. Available from: http://www.themaxfoundation.org/ Viji Venkatesh brings 26 years of professional experience in cancer patient care and support to The Max Foundation (TMF) and today serves as TMF’s Regional Director for the Asia-Pacific. Her focus is on leading the administration of the Glivec® International Patient Assistance Program (GIPAP™) in India and collaborating with TMF management in the regional administration of GIPAP™. Ms. Venkatesh has served many leadership roles in the cancer care community; she served as the Asia Coordinator and is a sentinel contributor to the International Union against Cancer / Union Internationale contra Cancre (UICC) where she developed and led symposiums, workshops, and training & distance learning programs. She was also a part of the team that set up the Preventive Oncology department in Tata Memorial Hospital as long ago as 1991 and today continues 62 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


to contribute to that premier cancer institute in the sub continent as a member of its Ethics Committee. Ms. Venkatesh’s extensive background in primary education, volunteer and professional training, public speaking, and program development in cancer detection, care and awareness building contributes a wealth of experience and knowledge to TMF’s mission of improving the quality of life and survival rates of patients with blood-related cancers worldwide.

Using technology and social media to support patient advocacy Mary Sibley, Novartis Global Policy and External Affairs, June 15, 2010 New internet and social media tools provide many opportunities for engagement between people dealing with health issues. In October 2008, CNN.com reported that more than 60 million people in the United States use health blogs, online support groups, prescription rating sites and other health- or medical-related internet materials; that number has likely doubled since that report was published. In addition, millions of people around the world have greater access to internet information than ever before. According to Forrester’s 2006 Media & Marketing Online Survey, people place great trust in what their peers say – highlighting the experience of someone over product reviews, manufacturer’s information and even reviews by experts. Peers can offer something health care providers cannot: experience; ability to relate to the stress and pain; ability to offer strategies to cope with the physical, mental and social issues related to a disease; and hope that the situation will improve. In addition, peers can benefit by helping others through the difficult processes of dealing with complex health conditions. Patients, patient groups, caregivers and healthcare professionals can all benefit from more efficient and convenient ways to communicate, whether sharing technical information or giving tips on addressing day-to-day health concerns. For people dealing with chronic myeloid leukemia (CML), CML Earth offers a means of interacting with others who share an interest in this disease.

What is CML? CML is a relatively rare, slowly progressing cancer of the blood and bone marrow that causes the body to produce too many white blood cells. Although CML is a relatively rare cancer, it is one of the four most common types of leukemia (responsible for 15 percent of adult leukemia cases), with a worldwide annual incidence of 1-2 cases per 100,000 people. The average age at onset is 45-55 years; only about 2 percent of cases are among children.

What is CML Earth? CML Earth is a global interactive social network intended to help those affected by CML find and connect with others who share their concerns and interests. Users of the site can select their language and formatting of choice, personalizing the space to meet their needs. Stories from people dealing with CML in their daily lives are available on the site, offering insight into how others have

The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 63


coped with the issues related to health care, medication and family concerns. There are more than 2500 members of CML Earth and the numbers are growing. Members from nearly 50 countries are taking part in discussions and sharing their stories.

Additional resources:

American Cancer Society. Overview: leukemia – chronic myeloid. http://www.cancer.org/cancer/leukemiachronicmyeloidcml/index CML Earth. http://www.CMLearth.com Cohen, Elizabeth. Patients find support, help via online networking. CNN.com/health. October 9, 2008. Faderl S, Talpaz M, Estrov Z, et al. The biology of chronic myeloid leukemia. New England Journal of Medicine 1999 July 15; 341(3):164-72. Forrester’s NACTAS Q3 2006 Media & Marketing Online Survey. Kantarjian H. Nilotinib is highly active and safe in chronic phase chronic myelogenous leukemia (CML-CP) patients with imatinib resistance or intolerance. Oral presentation. American Society of Hemotology Annual Meeting. 2007. Abstract #25. Manhattan Research’s Cybercitizen Health. Manhattanresearch.com/podcast. Mary Sibley is executive director of Global Policy and External Affairs for Novartis Oncology, an organization dedicated to fighting cancer worldwide. She has been president and CEO of the Visiting Nurses Association of Staten Island and deputy commissioner of Human Services for New Jersey. Sibley is a past member of the New Jersey Board of Nursing and has taught nursing at the graduate level at area colleges. She has an M.B.A. from the Amos Tuck School at Dartmouth and is a graduate of the Georgetown University School of Nursing.

64 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


Conclusion and Next Steps

T

he results of the Cancer Control Advocacy and Learning Initiative clearly indicate an interest in cancer control among members of the global health community and a desire to increase advocacy to mitigate the impact of cancer in developing countries. The involvement of the community, particularly in the member survey and focus and working

groups, also was a critical component in understanding the medical, social and economic issues associated with cancer control efforts. Behind the statistics, there are families dealing with the stigma and fear associated with diseases for which there are limited treatment options. There were several areas of agreement among members of the global health community. One of the most striking outcomes of the Initiative was the consistent emphasis by all stakeholders on linking cancer to infectious diseases, particularly HIV/AIDS, and to reproductive health services. Bringing together the political realities of dealing with a disease not usually associated with developing countries and the practical scenario of limited access to health care, the community focused on tying cancer services to existing programming, rather than creating a parallel health delivery system. While this may not be the optimal long-term solution, it will address the short-term health needs of people living in low-resource settings. A second observation was to focus on the most fixable and common cancers first. While still challenging, this strategy of addressing cervical, breast, smoking-related and liver cancers would yield important early results, thus motivating additional investment in and attention to other, more intractable cancers. Although this strategy may differ from that of other initiatives, this targeted approach provides an opportunity to develop succinct messages that can be tailored to garner media and political attention, both in the United States and in developing countries. A third area of agreement by the Initiative participants was the importance of building local capacity to address cancer and chronic diseases. There are two conceptual elements in this recommendation: a) establishing a system that promotes local facilities—laboratories, hospitals and clinics, and product development businesses—that can meet diagnostic, prevention and treatment needs, and b) fostering a well-trained workforce that can meet patients’ medical, social and familial needs. Both elements facilitate the development of a sustainable system that can offer patient-friendly care. A fourth area of note was the need to increase the availability and quality of data, information and evidence about cancer in developing countries. The lack of adequate surveillance mechanisms, program monitoring and evaluation, metrics and indicators, and inclusion of cancer-related questions in standard developing country disease surveys inhibits the ability to map regions with greatest need

The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010 / 65


and provide required services. In addition, without accurate data, it is not possible to determine whether interventions are achieving their goals and objectives. Cancer and chronic diseases may be the newest additions to a complex global health landscape, but they represent perhaps the greatest challenge for the future. Governments, nongovernmental organizations, donor institutions, corporations, universities, think tanks and other stakeholders have struggled to develop health systems that are able to address infectious diseases and maternal, newborn, child and reproductive health issues all at the same time—results have been mixed, with some areas succeeding and others lagging behind. The addition of chronic diseases to this milieu creates both adversity and opportunity. The questions we need to ask are not about whether the challenge should be undertaken, but where do we begin and what is the plan?

Summary of Research and Policy Priorities „„ Develop metrics and indicators to measure success „„ Build workforce capacity „„ Instill a research focus „„ Focus on the link with infectious diseases „„ Draw attention to the economic issues „„ Focus on the “fixable” „„ Promote interagency capacity building in developing countries „„ Develop an effective cancer surveillance system „„ Focus on locally relevant approaches „„ Provide information and raise awareness of cancer in developing countries

Next steps for the Global Health Council This project provides guidance on the next steps for the Global Health Council, which will focus on implementing the research and policy priorities articulated by the Initiative’s working group. This set of priorities was formulated with the goals of making progress in reducing the burden of cancer and facilitating the development of a sustainable, evidence-based system in developing countries. In addition to advancing the research and policy priorities, the community also encouraged the Council to engage in cancer and chronic diseases by: „„ Compiling information, data and resources to provide a clearinghouse – this would enable organizations to share information in one accessible location; „„ Disseminating information about cancer in developing countries – by highlighting organizations working on cancer, the community will be better able to network and coordinate services and programs; 66 / The Burden of Cancer in the developing countries: A Global Health Council Report on the Cancer Advocacy and Learning Institute, June, 2010


„„ Providing a forum for articles and blogs about cancer control efforts – this information sharing function would be very beneficial to all Council members, but particularly those in developing countries who may have limited access to materials; and „„ Helping to integrate cancer control efforts within the infectious disease and reproductive health communities – providing a networking function beyond the cancer control programming efforts would facilitate coordination between disease- or population-specific services. These coordinating functions would greatly facilitate not only the specific issues related to accessibility of information but would also facilitate achievement of the research and policy priorities by establishing a strong network of organizations that prioritize cancer-related work. Finally, in addition to cancer-related activities, the Global Health Council will develop a plan to integrate a range of chronic and non-communicable diseases into ongoing work on infectious diseases and maternal, newborn, child and reproductive health. By presenting a cohesive and comprehensive view of global health and strive to meet the needs of our member organizations, the Global Health Council can better fulfill its mission to ensure that all who strive for improvement and equity in global health have the information and resources they need to succeed.

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The Burden of Cancer in Developing Countries  

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