9
Advocacy for Cancer Control

Cancer advocacy groups—defined broadly as cancer societies, survivor advocates, and other groups of volunteers outside of government, all by definition nongovernmental organizations, or NGOs—are well established in most developed countries. They have been a potent influence in high-income countries in raising awareness about the cancer burden and directing public and private efforts and resources into cancer control. In most low- and middle-income countries (LMCs), where cancer is a low priority, advocacy is also largely undeveloped. As we have argued in this report, cancer control deserves higher priority based on its large and increasing burden of disease. Advocacy has a role to play in bringing the public’s concerns about cancer to decision makers.

In most developed countries, cancer advocacy begins with national cancer societies, often formed by physicians, other health care professionals, and business leaders (e.g., the forerunner of the American Cancer Society was founded in 1913). Advocacy by the interested public develops later, usually around specific issues. These groups compete for funds and influence, but often develop formal and informal alliances. Cancer advocacy groups in developed countries have proven to be powerful forces for the advancement of cancer control and provide a considerable amount of leadership in the establishment of national cancer priorities.

Independence from government is essential to advocate for something the government is reluctant to do, which means not being dependent financially on government. This is true even if, as occurs in many countries, NGO cancer societies undertake joint projects with government or undertake specific contracts. This principle has been affirmed over and over in the history



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Cancer Control Opportunities in Low- and Middle-Income Countries 9 Advocacy for Cancer Control Cancer advocacy groups—defined broadly as cancer societies, survivor advocates, and other groups of volunteers outside of government, all by definition nongovernmental organizations, or NGOs—are well established in most developed countries. They have been a potent influence in high-income countries in raising awareness about the cancer burden and directing public and private efforts and resources into cancer control. In most low- and middle-income countries (LMCs), where cancer is a low priority, advocacy is also largely undeveloped. As we have argued in this report, cancer control deserves higher priority based on its large and increasing burden of disease. Advocacy has a role to play in bringing the public’s concerns about cancer to decision makers. In most developed countries, cancer advocacy begins with national cancer societies, often formed by physicians, other health care professionals, and business leaders (e.g., the forerunner of the American Cancer Society was founded in 1913). Advocacy by the interested public develops later, usually around specific issues. These groups compete for funds and influence, but often develop formal and informal alliances. Cancer advocacy groups in developed countries have proven to be powerful forces for the advancement of cancer control and provide a considerable amount of leadership in the establishment of national cancer priorities. Independence from government is essential to advocate for something the government is reluctant to do, which means not being dependent financially on government. This is true even if, as occurs in many countries, NGO cancer societies undertake joint projects with government or undertake specific contracts. This principle has been affirmed over and over in the history

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Cancer Control Opportunities in Low- and Middle-Income Countries of tobacco advocacy, where governments are often in receipt of funds from the tobacco industry, and in some countries this extends to individual politicians and even office bearers. Although the tobacco situation is unique, the principle of independence applies to any advocacy group, be it for support for breast cancer patients or for cervical cancer screening programs. Ideally, advocates should be free to use the media, mass volunteer influence, and all other mechanisms of persuasion to achieve their objectives. It is not possible nor desirable to “control” the advocacy movement, as its very nature is a societal response to a variety of situations often, initially at least, driven by emotion. Success, however, does depend on advocating things that are achievable. A set of priorities and actions must be developed that are feasible economically and politically, and acceptable to society. This, in turn, requires analytical and planning expertise that may not exist among the advocates. Training to develop these skills should be a natural role for successful advocacy organizations in high-income countries. The International Union Against Cancer is the undisputed leading international umbrella organization for cancer advocacy. Its work is described next. Among national cancer societies, the American Cancer Society (ACS) is the most active in promoting cancer advocacy in LMCs. The ACS work is described later in the chapter. What follows is a brief review of cancer advocacy in LMCs, followed by some basic principles and ideas by which the global community could help LMCs in this area. AN UMBRELLA FOR ADVOCACY: THE INTERNATIONAL UNION AGAINST CANCER The International Union Against Cancer, also known as UICC, is the most prominent and inclusive international body dedicated to cancer control. It is a membership organization with a small administrative head office, with controlling committees made up of volunteers. The most visible UICC activity is the World Cancer Congress, held every 2 years in a major city, the most recent in Washington, DC, in 2006. Several thousand participants from all sectors attend these meetings, the great majority from high-income countries, but with increasing representation from LMCs and attention to developing effective cancer control in those countries. UICC has 270 member organizations in 80 countries. Many of these organizations are typical nongovernment, volunteer-based cancer societies, but many are also government-funded (often national) cancer institutes and research institutions. For example, Fiji and Estonia list only NGO members; Egypt and El Salvador list only government-funded cancer institutes. Many countries have only one member. This mix is beneficial for UICC, but government-funded institutes are not usually considered to be true advocacy bodies because they are not independent of government.

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Cancer Control Opportunities in Low- and Middle-Income Countries Most UICC funding comes from member organization subscriptions that are prorated based on member income. About 20 of the larger national cancer bodies (e.g., the American Cancer Society, the Australian Cancer Society, and Cancer Research UK) pay substantially more than the hundreds of smaller, less well-endowed organizations, but still a very small fraction of their total income. The UICC annual income is a modest $5 million (out of well over $500 million total budgets for the three organizations named above) (International Union Against Cancer, 2006). Major UICC Activities UICC has four “strategic directions,” including prevention and early detection, tobacco control, knowledge transfer, and capacity building. Each area is led by a “strategic leader,” a globally recognized expert. In “Prevention and Early Detection,” UICC promotes public education and the training of health care professionals to understand and act on opportunities. Activities include reviewing available cancer data to identify priorities and to develop training and other programs to address the priority areas; strengthening local capacity through training in epidemiology, cancer registration, and needs analysis; promoting cost-effective, sustainable prevention and early detection strategies, and promoting national policy changes to reinforce the strategies; and establishing networks of professionals and experts at various levels to interact in mutually beneficial ways. In “Tobacco Control,” UICC continues to support the ratification and adoption of the Framework Convention on Tobacco Control (FCTC), and is taking the next steps by working the strong NGO network to help countries adopt the measures specified in the FCTC. LMCs are a high priority. A tool in tobacco control is UICC’s electronic information source, “GLOBALink,” for tobacco control professionals worldwide. Tools, listservs, web hosting, petitions, and news are all available to members. Other goals in tobacco control include increasing the information base and identifying research needs; establishing standards for best practices in tobacco control; encouraging and facilitating collaboration among UICC members; developing consensus positions on key issues; and representing cancer organizations in interactions with international governmental bodies. The goal of “Knowledge Transfer” is to narrow the gap between what is known and what is applied in cancer control. Activities include facilitating research and training fellowships for health care and advocacy professionals and volunteers; maintaining a global network of cancer experts; providing forums for information exchange; publishing a range of journals, manuals, and other material for health care professionals; and promoting specific activities that advance the cancer control agenda.

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Cancer Control Opportunities in Low- and Middle-Income Countries In “Capacity Building,” UICC works with organizations within member countries through a wide variety of programs to increase the capacity in countries to further cancer control through advocacy. Specific activities involve providing training for advocacy leaders to develop skills to effectively influence cancer policy makers; improving fundraising capacity; teaching knowledge and skills to allow advocates to participate effectively in national cancer control planning; developing strategic alliances with other organizations and groups to create synergies; and developing resources for all the educational activities, both online and in other formats. A major recent effort has been in developing resources for NGOs to be involved in, or to spearhead, national cancer control planning (International Union Against Cancer, 2006). THE AMERICAN CANCER SOCIETY ACS has taken a leading role in global cancer advocacy by promoting cancer advocacy in countries with emerging cancer societies. Their major activities in this area are mentioned below (American Cancer Society, 2006). American Cancer Society University The centerpiece of the ACS global effort is training international cancer control leaders through the “American Cancer Society University (ACSU)” in all aspects of running a community-based cancer control organization or program. The ACSU program begins with a week-long course, which is held a few times each year in different parts of the world, followed by support of participants in home countries. Key aspects of the training include: Building an organization and defining its mission Developing a successful cancer control message and getting the message out Identifying and working with the various collaborators necessary for cancer control Raising funds to support the organization and its advocacy messages Promoting cancer control needs assessment and planning Recruiting and involving volunteers Assessing the status and importance of existing cancer services, including prevention and treatment When participants return home, ACS provides “seed grants” to help them launch new initiatives. They have been used, for example, for the following activities:

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Cancer Control Opportunities in Low- and Middle-Income Countries Establishing a tobacco and cancer study unit in Ethiopia Creating and training a network of tobacco and cancer control advocates in India Starting a prostate cancer awareness program in Jamaica Producing a tobacco- and cancer-related, youth-focused mini magazine in Nigeria Translating cancer and smoking information into Romanian Holding a workshop on building and effectively running a cancer organization in Vietnam Recruiting and training volunteers to serve as educators in Bolivia After participating in activities, ACSU participants are brought back together in regional meetings to share their experiences, including reporting on activities funded by the seed grants. More than 250 people from about 60 LMCs have completed the ACSU training. International Partners Program The International Partners Program (IPP) creates collaborations between ACS units in the United States and cancer organizations in LMCs to build advocacy appropriate to the setting in specific areas, and to strengthen and support the organizations on both sides of the partnership. Programs in tobacco control, cancer prevention and early detection, cancer information, and fundraising are all part of the IPP agenda. In addition to the capacity building benefit to the lower income partner, those associated with the ACS units (volunteers and others) learn about conditions in other countries, which could have direct benefits in serving immigrants to the United States. The linkages also create bridges to establish additional programs in cancer control. The two most successful partnerships currently are between the ACS South Atlantic Division and Bolivia, and the ACS California Division and the Philippines. In Bolivia, the emphasis is on improving cancer awareness among women. In the Philippines, the focus has been promoting universal immunization against the hepatitis B virus to prevent liver cancer. International Grant Programs ACS offers grants in tobacco control in LMCs, for which ACS acts on its own and collaborates with the UICC, Cancer Research UK, The Canadian Tobacco Control Research Initiative, and others. The work of individual campaigners and advocacy groups is supported by several different grant programs. ACS supports the development of tobacco control infrastructure in

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Cancer Control Opportunities in Low- and Middle-Income Countries LMCs by supporting groups that hold meetings and workshops for local advocates, work with governments, produce information for the public, and other activities. Programs are active in Guatemala, India, China, and the Latin American region. In addition to these specific partnerships and programs, ACS is active around the world in tobacco control in many other ways. CURRENT STATUS OF CANCER ADVOCACY IN LMCS No worldwide inventory of cancer advocacy groups exists outside of the UICC members. Undoubtedly, many small ones lie beyond the reach of organized information systems. Of the 270 UICC members in 80 countries, nearly all can be categorized as NGOs or government cancer institutes. Information to categorize specifically the ways in which these NGOs arose is not available. Based on observation, however, a major driving force—perhaps the driving force—has been the need to improve palliative care. Once started, however, most of the organizations have broadened their focus to encompass treatment and in due course, the full spectrum of cancer control activities. The NGOs in LMCs are all small resource organizations. Their cancer institutes almost invariably have poor resources. There are rare exceptions, such as the Cancer Institute in Lima, Peru, that was built by funds derived from tobacco taxes. Apart from the drive arising from the desire for palliative care, a number of NGOs were started through government initiative, and office bearers include relatives of government officials. The next most common type of organization is the support group, mostly for breast cancer. In low-income countries, a number of these have been started by expatriate cancer survivors currently living in the country. Determining how effective these organizations are in the field is simply not possible. Some organizations distribute pamphlets, often using text derived from materials from developed countries. Others do not publicize their activities. Few are likely to have substantial reach within their communities and for most, finances are invariably fragile (Gray, 2005). Selected Advocacy Efforts in LMCs Europa Donna Europa Donna (ED) is the dominant breast cancer advocacy group in Europe, consisting of national organizations from 39 countries. The original core and impetus came from Western Europe, but the membership currently includes about a dozen mostly middle-income countries from Eastern and Central Europe and the former Soviet republics. The most recent member

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Cancer Control Opportunities in Low- and Middle-Income Countries is the state of Georgia. Bulgaria joined in 2004 and has initiated activities (Box 9-1). The organization was formed in the early 1990s, based on the recognition of the success of breast cancer advocacy in the United States. The 10 goals (Box 9-2) involve influencing women, health care professionals, health care systems, and government (European Breast Cancer Coalition, 2006). Each ED member country has its own National Forum and interacts with its own national government, as well as through the Europe-wide network to influence the broader political structures in Europe. National Fora include patients, female health professionals, breast cancer-related organizations and institutions, and women supporting the fight against breast cancer. Education, information, and lobbying are the three major activities. Lobbying takes place nationally in member countries and throughout Europe. Lobbying at the European level began in 2000. A milestone was the launch of the European Parliamentary Group on Breast Cancer in 2001 and the passage of a breast cancer resolution by the European Parliament in 2003. Most of the LMCs are not members of the European Union, so they may not benefit directly from European Parliamentary action. BOX 9-1 Europa Donna Bulgaria Europa Donna (ED) Bulgaria was established in 2004. In cooperation with cancer patient organizations and others, it has developed a variety of programs focusing on direct contact with cancer patients, producing and distributing cancer-related information, working with health care institutions, and participating in the European patients’ forum. ED organized a forum on problems in oncology, where specialists emphasized the importance of prevention and timely diagnosis. Information sessions included visits to an oncology hospital, a self-education center to enable people to consult with competent specialists, and an art therapy club to help women express their feelings about the disease through drawing. ED has been working toward developing European standards for patients’ rights, screening and early diagnosis, availability of up-to-date treatment for all, and social adaptation. On a visit to Bulgaria in 2004, the President of ED met the Vice-Minister of Health to discuss breast cancer problems, drug policies, and a national screening program. SOURCE: European Breast Cancer Coalition (2006).

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Cancer Control Opportunities in Low- and Middle-Income Countries BOX 9-2 Europa Donna’s 10 Goals To promote the dissemination and exchange of factual, up-to-date information on breast cancer throughout Europe To promote breast cancer awareness To emphasize the need for appropriate screening and early detection To campaign for the provision of optimum treatment To ensure provision of quality supportive care throughout and after treatment To advocate appropriate training for health professionals To acknowledge good practice and promote its development To demand regular quality assessment of medical equipment To ensure that all women understand fully any proposed treatment options, including entry into clinical trials and their right to a second opinion To promote the advancement of breast cancer research SOURCE: European Breast Cancer Coalition (2006). Reach to Recovery International Reach to Recovery International (RRI), a UICC program, is a network of voluntary breast cancer support groups around the world. The underlying premise is “that of one woman who has lived through breast cancer giving of her time and experience to help another woman confronting the same challenge.” The original, and still main, purpose of RRI is psychosocial support for women with breast cancer, but the group is also involved in broader advocacy. At the start of 2006, the network included 84 groups in 50 countries. Some groups are mature, but the majority are relatively new, from Africa, Asia, Eastern Europe, and Latin America. The network helps volunteers to start new groups, helps to establish support services, and enhances existing groups’ skills in communication and advocacy. RRI also works to promote services to meet the needs of women with breast cancer. Groups just getting started may work with an established group in a “twinning” program. The RRI network offers peer support training, the chance to attend regional and international conferences, and the RRI newsletter, bloom. RRI meetings at the international level are held every 2 years, and an Asia–Pacific

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Cancer Control Opportunities in Low- and Middle-Income Countries conference is held in the years in between. Train-the-trainer workshops are offered to develop skills in volunteer training and management. Malaysian Breast Cancer Council The concept of the Malaysian Breast Cancer Council (MBCC) was developed at the conclusion of the First Asia-Pacific Reach to Recovery International Breast Cancer Support Conference, which was held in Malaysia in 2002. MBCC consists of Reach to Recovery groups (peer support groups of women with breast cancer), in coalition with cancer societies, hospices, national societies of health care professionals in cancer care, and agencies with special interest in breast cancer and women’s issues. MBCC was formed to: Influence policies regarding breast cancer Create a sociocultural change in attitude toward breast cancer Facilitate communication and break down barriers on breast cancer issues Prevent duplication of services and activities Maximize resources to help enable effective support services Breast cancer survivors and health care professionals work in partnership in this advocacy endeavor. The advantages of this partnership are: Improved doctor–patient communication and relationships, including the beginnings of shared decision making Advocates who have had breast cancer and are supporting the rights of cancer patients not only in providing information to the public, but also in encouraging health care professionals to make the treatment environment more patient friendly With increased mutual respect, increased referrals by health care providers of patients to Reach to Recovery groups for psychosocial support Giving Reach to Recovery groups, cancer societies, and societies of health care professionals in cancer care the common ground to resolve differences and work together toward common goals for women with breast cancer and cancer in general Issues raised with Malaysian government officials and the public relate to: Availability of sources to provide information on access to cancer care and treatment The importance of seeking evidence-based screening, diagnostic services, and treatment

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Cancer Control Opportunities in Low- and Middle-Income Countries Equity of services in cancer treatment for all women Rising cost of cancer treatment drugs Tobacco control measures A major activity of the MBCC network is monitoring cancer-related information being delivered to the public by companies and other organizations, and taking action to publicly correct misinformation. Topics range from misleading advertising to breast cancer screening by a range of (costly) technologies other than mammography. Member organizations write letters to the media, contact government officials, and take other measures to set the record straight. Informing women about early detection of breast cancer is another priority. In addition to distributing brochures, MBCC organizes public events to spread the message. “Outrageously Pink Night” consisted of a street party aimed at young people. People in pink took to the streets for dancing. At the same time, the Minister of Women, Family and Community Development, who was guest of honor, distributed goody bags with gifts and information on early detection of breast cancer. In August 2004, 20 women living with breast cancer participated in a Patients’ Forum. The Parliamentary Secretary from the Ministry of Health and several medical specialists were also present. Issues discussed included treatment needs of women with breast cancer, the escalating cost of chemotherapy drugs, and the acute shortage of specialized cancer treatment services in Malaysia. These issues are being addressed jointly by the Ministry of Health and MBCC committee members. ROLE OF THE GLOBAL ADVOCACY COMMUNITY IN PROMOTING CANCER ADVOCACY IN LMCS Advocacy groups may arise within a country with little outside influence, but in most LMCs, that has not happened. Just as governments and professionals in LMCs can make much greater progress in developing cancer programs with technical assistance and resources from high-income countries, so can the fledgling advocacy movement benefit from the inputs of the international advocacy community. The first target has to be a core of people in individual countries who understand that cancer is a growing problem for them, and second, that things they do can elevate the status of cancer control through advocacy efforts. Because of the way advocacy develops—around issues that directly affect the advocates and their communities—going international may not be a natural priority for most groups. Everywhere, regardless of the services available and the attention paid to cancer, there is always more to be done locally by advocates without expanding beyond national borders. Some ma-

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Cancer Control Opportunities in Low- and Middle-Income Countries ture groups with significant resources have offered assistance to developing countries (including ACS, discussed above). Outreach in tobacco control has been extensive, and the breast cancer advocacy community also has become active. In addition to the global Reach to Recovery program under UICC auspices (see below), individual groups, such as the U.S.-based Susan G. Komen Breast Cancer Foundation, reach out to advocates in developing countries to offer tools that can be used to help develop their movements at home. What is less common, and clearly more difficult, is to help to build advocacy where no leaders have yet emerged. There can be no doubt that the experience of high-income-country cancer societies and other organizations can help develop advocacy in low-income countries. However, it is essential to recognize the different situations that exist and help tailor advocacy to what is appropriate. Setting out some basic questions is relatively simple: What are the common cancers? Which of these are avoidable by effective prevention strategies? What else is missing on the spectrum of cancer care? Is cancer education a useful role for the cancer society? What services does government provide? Is research an appropriate target for the particular society? What are the available resources? International advocacy groups can play a number of roles: To advise on the practicalities of cancer control choices, and to provide training workshops on relevant topics in the host country. Advocacy groups that organize around specific issues—breast cancer and palliative care are the two most frequent—have chosen their priorities. Cancer societies that have more all-encompassing aims, however, need to select priorities and organize plans of action, key tasks that international partners could assist, either through UICC or as society-to-society partnerships. Here it may be appropriate to establish the principle that such training is best conducted in the concerned LMC, where a suitable and representative audience can be garnered. A two-way exchange of staff with the object of benefiting both. Just as “twinning” of cancer treatment institutions is of benefit, twinning of cancer societies or international NGOs (e.g., Rotary International) could be used to develop long-term relationships to benefit both sides. Providing funding for expanded advocacy in LMCs. Funding is a major constraint to the expansion of advocacy in LMCs. Cancer organizations from high-income countries provide some funding for

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Cancer Control Opportunities in Low- and Middle-Income Countries low-income-country activities, but the amount is relatively small. This issue needs to be addressed, but new sources of funding are also needed. Advocacy for Tobacco Control: An Example The history of international tobacco advocacy begins in the 1970s with UICC and the International Union of Tuberculosis and Lung Disease. This involved a concerted program of training workshops based on a model published by UICC initially in 1976 (Gray and Daube, 1976). More than 100 such workshops were run over three decades with major input from the U.S.-based Advocacy Institute and the American Cancer Society. From this activity grew a coherent international group of advocates that now runs a triennial world conference attended by several thousand active participants. These individuals belong to a variety of national and international organizations coming to tobacco control from a variety of perspectives. Global tobacco control policy is, with the exception of a few difficult issues, generally agreed on, although individual groups have particular priorities. This movement is largely responsible for the Framework Convention on Tobacco Control (see Chapter 5). However, international conferences, although essential, do not take action. The action items are left to those working in their home environment. Viewed internationally, the tobacco control movement sorely lacks funding to assist LMCs. Trained, internationally oriented advocates exist in significant numbers, but funding and a formal global program are missing. Is tobacco control advocacy different from lobbying for other cancer control causes? In one way, it is. The evidence indicting tobacco in disease had been known for 20 years before the UICC tobacco program began and was accepted by most wealthy governments, but the evidence and possible solutions had not been considered in LMCs, where smoking rates were still relatively low in most places. Health officials welcomed such interventions as they were usually well informed and frustrated by their situation. However, it may also be significant that most tobacco prevention interventions are cost free or low cost in comparison to tax income from tobacco, and lobbying for tax increases has a logic of special appeal to governments. Treatment for tobacco-related cancers was not one of the targets this program was advocating as it was both relatively unsuccessful and in very limited supply in LMCs. Tobacco advocacy provides a concrete example of a successful international movement that arose from small beginnings more than three decades ago. The expertise of support groups and the experience showing they can widen their horizons to become comprehensive cancer control advocates is encouraging.

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Cancer Control Opportunities in Low- and Middle-Income Countries SUMMARY AND RECOMMENDATION Advocacy for cancer control is just beginning in LMCs, and has yet to take root in many. The history of cancer advocacy is very recent even in high-income countries, yet its impact has been great. Where the public has spoken out, governments and health care professionals have listened, at least in the United States and Europe. One should not underestimate the challenges of developing advocacy in LMCs, but the potential benefits in terms of more appropriate resources and attention to cancer make investing in advocacy very attractive. The global advocacy community has a role to play in assisting those in LMCs with information and strategies, while respecting the local political and social structures. As is the case with other aspects of cancer control, much of this work must take place person to person and country by country. RECOMMENDATION 9-1. Established cancer advocacy organizations, mainly in high-income countries, should actively support and assist the growth of cancer advocacy in LMCs. Specific activities would include setting up advocacy networks within countries, within regions and internationally; identifying successful approaches to cancer advocacy and replicating or adapting them for use in other settings; and providing hands-on training and technical assistance. REFERENCES American Cancer Society. 2006. American Cancer Society. [Online]. Available: http://www.cancer.org/docroot/home/index.asp [accessed July 3, 2006]. European Breast Cancer Coalition. 2006. Europa Donna. [Online]. Available: http://www.cancerworld.org/CancerWorld/home.aspx?id_sito=5&id_stato=1 [accessed July 3, 2006]. Gray N. 2005. The Role of Advocacy in Cancer Control in Low- and Middle-Income Countries. Paper commissioned by the Institute of Medicine. Gray N, Daube M. 1976. Guidelines for Smoking Control. Geneva, Switzerland: UICC. International Union Against Cancer. 2006. Making a World of Difference. [Online]. Available: http://uicc.org/index.php?id=516 [accessed July 3, 2006].