Walter Paulo Zoss, Executive Manager, RINC/UNASUR and Luis Antonio Santini, Director general, INCA
This study aims to give an overview on how countries within Latin America are working together to support their individual and common cancer control interests. The impact of cancer is increasing in countries of Central and South America. This is reflected in the higher incidence of cancer in this region of the world, when compared to other countries with better access to prevention and primary health services. This also includes a higher mortality as a result of late diagnosis and advanced stage disease. The idea of regional cooperation and networking to meet this challenge was what guided the creation of RINC, the Latin American Network of National Cancer Institutes and Institutions, established in 2011 as an initiative of the Union of South American Nations (UNASUR). RINC is a geopolitical platform for the development and implementation of activities and programmes for cancer control in the region.
The impact of cancer is increasing in countries of Latin (Central and South) America. The majority of the Latin American countries (LACs) are experiencing an epidemiological transition, whereby the disease burden is shifting from infectious diseases to chronic conditions, with a corresponding escalation in rates of cancer. Over 70% of cancers are diagnosed when the disease is incurable (1).
Health systems in Latin America are facing many challenges to ensure timely and optimal treatment for patients with cancer. This includes lack of adequate funding and inequities in the number, distribution and training of health professionals and equipment, especially in remote or sparsely populated regions with different levels of illiteracy, low socioeconomic status and ethnic and cultural traditions with high prevalence of risk factors (2).
Some governments have a slow response to adjust health policies according to the epidemiological transition in place with a steady decline in birth rates, low infant mortality and better life expectancy (3).
Recognizing the importance of setting priorities and intervention measures on cost-effectiveness with significant impact on incidence and mortality by cancer, and taking into account the potential of networks to strengthen the region’s health systems, the Union of South American Nations (UNASUR) established in 2011 the Network of National Cancer Institutes (RINC) – a collaboration platform that aims at promoting cooperation and technical coordination among national public institutions from the 12 South American countries and other Latin American and Caribbean countries. RINC UNASUR takes advantage of the political will available and incorporates tgovernmental bodies to the regional cancer strategy; the two conditions necessary to create change in cancer (4).
ICCC–2 and the Latin American and Caribbean Alliance for Cancer Control
The International Cancer Control Congress (ICCC) emerged as an opportunity to discuss “what would be necessary to convert current knowledge of cancer control into directions and actions that will enhance population cancer and noncommunicable disease (NCDs) outcomes”. One of the lessons learned from the ICCC meetings has been that to be effective in cancer control you have to match content (what you believe you need to do), context (what is culturally, socially and fiscally achievable in the loco-regional context) and the relationships existing (or not) between the key stakeholders whose support would be essential to implement a national, population-based programme (5).
Since the first congress in Vancouver, ICCC’s agenda has evolved to cover topics such as the implementation of cancer control plans and the integration of public health and clinical medicine approaches to reducing the burden of illness. One further concern among others is the integration of plans to control cancer and NCDs that share common risk factors.
The second ICCC congress was held for the first time in Latin America in 2007. Its principles had a strong influence on the participating countries to start planning a coordinated regional cancer strategy and encouraged the setting up of the Latin American and Caribbean Alliance for Cancer Control. The Alliance, which was created in the following year, had the strategic vision to establish a collaborative working process, having the building of a regional community following good practice as one of its main guidelines and with a new model of collective work by sharing knowledge and programmes of common interest (6).
Unlike other regions, Latin America is characterized by ethnic, cultural and linguistic similarities among countries, factors that are an important booster of integration and favours cooperative efforts through networks. The Latin American and Caribbean Alliance for Cancer Control therefore found fertile ground to flourish quickly. Some results achieved by the Alliance between 2007 and 2010 were:
- putting on an international symposium on early detection for breast cancer in Rio de Janeiro in April 2009;
- implementing the Latin American and Caribbean Network of Tumor Banks in 2008;
- revitalizing the Ibero-American Network for Tobacco Control (RIACT);
- staging meetings to improve the quality of cancer registries – which were organized by the World Health Organization, the International Agency for Research on Cancer (IARC), the Pan American Health Organization (PAHO) and the Union for International Cancer Control (UICC) – in Ecuador (2008) and Brazil (2009), which brought together 12 countries from the region;
- establishing the Ionizing Radiation Quality Assurance Program which unites institutions in Latin America;
- fostering the creation of the United States–Latin America Cancer Research Network (US–LA CRN), which was established in 2009 between five countries in the Alliance and the United States.
In spite of those achievements, the Alliance is seeking to make further progress, although it was not able to overcome challenges such as the lack of institutionalization or getting the formal commitments from the respective governments. Clear rules for its operation were also missing as well as a permanent infrastructure for providing support and expanding partnerships (7).
RINC UNASUR – The Network of National Cancer Institutes
With the creation of RINC by the UNASUR Health Council – a supreme body composed of the 12 South American health ministers – a new path for the development of networks operated, managed and regulated under formal legal instruments was traced. This led to a new and promising scenario for productive collaboration schemes to be implemented. Representatives of the Latin American and Caribbean Alliance for Cancer Control gathered in Buenos Aires, Argentina, in September 2010 to formally declare their intention to constitute RINC.
According to the UNASUR regulations, each of the South American nations – Argentina, Bolivia, Brazil, Chile, Colombia, Ecuador, Guyana, Paraguay, Peru, Suriname, Uruguay and Venezuela – has the right to participate in the network as a full member. Other countries from the former Latin American and Caribbean Alliance (Cuba, Mexico, Nicaragua, Guatemala and Panama) were incorporated by RINC as associate members. Both full and associate members have a seat on the Management Council, a steering committee that approves strategies and projects that are considered appropriate to the goals of the network. All members are representatives of national institutions responsible for cancer control strategies or assigned by their governments.
The following strategic actions were identified by the Management Council as priorities for RINC:
- Organizing a regional best practice community for the control of cancer.
- Exchanging information and knowledge related to the topic.
- Identifying the needs, opportunities and common interests related to the control of cancer and searching for alternatives that can be shared.
- Promoting coordination among member countries to strengthen management and institutional development of the region’s national cancer institutes and institutions.
- Promoting the commitment of every countries’ corresponding levels of government with emphasis on the availability of financial, human and legislative resources necessary for the development of cancer control.
The structure of RINC consists further of working groups. These are teams of experts structured according to strategic issues and responsible for developing and coordinating the implementation of action plans in each of the thematic areas identified as priorities by the Management Council (8).
Cervical cancer and breast cancer control, cancer registries and biobanking were agreed by consensus as the priorities for countries to address together the cancer problem in their region. The Five Year Plan 2010–2015 of the UNASUR Health Council was also taken into consideration (9).
The National Cancer Institute of Brazil was assigned to coordinate the Network and provide technical and administrative support for the operation of RINC through an Executive Secretariat.
Cervical cancer: A regional public health problem
The most common malignancies in Latin America are lung (still increasing among women), prostate, breast, colorectal and gastric cancer. Cervical cancer remains the second most common type among women of all ages in terms of incidence and a leading cause of mortality in the lowest income parts of the region. Social determinants, such as poverty, low levels of education and ethnicity lead to a disproportionate burden of cancer on the most vulnerable populations, especially women. With about 68,800 new cases and 28,500 deaths (10), cervical cancer became a top priority to be addressed by most governments in South and Central America and in the Caribbean.
RINC’s goal is to strongly contribute to reduce the incidence and mortality from the disease by providing a platform for technical exchange and assistance among countries in the region to strengthen prevention programmes. In August 2012 the Network established a Working Group for Cervical Cancer Control composed of experts from 13 countries. Based on an assessment of the situation in the region, the Group has put in place five basic projects with the following objectives:
- To provide evidence and technical support to reduce access barriers to diagnosis, monitoring and treatment.
- To provide technical assistance and exchange knowledge and regional experiences for the incorporation of Visual Inspection with Acetic Acid (VIAA) and the “See and Treat” strategy in the context of organized programmes (HPV Test and vaccine).
- To provide technical support and transfer knowledge and regional experiences to incorporate new prevention technologies based on the HPV virus in the context of organized programmes (HPV Test and vaccine).
- To strengthen registration systems, monitoring and evaluation of cervical cancer prevention programmes (11).
RINC and IARC: A strategic partnership to deliver changes in cancer registration
In the context of an increasing cancer burden, the implementation of cancer control plans based on quality information to deliver and evaluate actions is of the utmost relevance. RINC members recognize the central role of cancer registries in providing the evidence base for effective strategies for cancer prevention and control, and for government planning in the context of the political agenda that resulted from the UN General Assembly commitment towards a 25% reduction in the mortality from NCDs by 2025.
RINC’s unprecedented initiative of setting up a Working Group for Cancer Registries with 14 Latin American countries was welcomed by the World Health Organization´s International Agency for Research on Cancer (IARC) (8). Through this initiative, a close collaboration with IARC was started, maximizing the effectiveness of RINC’s strategy for the region. The model that has been agreed to deliver the changes in cancer registration is structured around the creation of a regional hub in Latin America (the GICR-LA Hub). In 2014, the Latin American Hub was established with a coordinating centre at the National Cancer Institute of Argentina in Buenos Aires and a series of contributing centres within countries in the region willing to contribute to specific areas of expertise. Key activities of the Hub are to provide localized training, tailored support, to foster research and assist with advocacy and develop networks. However, due to disparities in coverage and quality of the existing population-based cancer registries among the countries, there will be a different emphasis in the general approach of improving cancer registration in the region. RINC was invited to join the Advisory Committee, whose duties are to review the work of the Hub, advise on future developments and provide inputs regarding cancer control initiatives that are relevant to the region (12).
The Biobank Working Group
Since the late 1990s, biobanks have become an important resource in medical contemporary research. In this context, the Latin American and Caribbean Network of Tumour Banks was set up in 2007 by the former Latin American and Caribbean Alliance for Cancer Control and joined RINC later on as Biobanking Working Group. It aims to organize a network for the collection of tumour samples and blood of patients with the most prevalent tumours in the region. Such specimens are essential research focused on identifying tumour markers and developing new therapeutic targets.
The initial goal was to establish a cooperative milestone to allow design strategies to consolidate tumour banks in member countries. In the meantime RINC has achieved the following targets:
- Technical support for the standardization of nine existing tumour banks.
- Implementation of six new tumour banks.
- Training delivered to 21 experts.
- The implementation of regional training and technical capacity building centres at national cancer institutes in Rio de Janeiro, Bogotá and Mexico City (13).
Breast cancer – a major challenge
Breast cancer is the most common cause of cancer and the leading cause of mortality from cancer among women in Latin America. Mortality has increased over the past two decades and breast-cancer survival is, on average, 20% lower than in the United States and Western Europe. High rates of breast cancer mortality can be attributed to advanced stage at diagnosis: only 5% to 10% of new diagnoses are made at a stage I of the disease. Health system structures have been identified as major barriers to successful breast cancer screening. In some regions of Latin America, mammography equipment is scarce, with up to 20% of equipment needing repair.
In this context, seeking to align public cancer prevention and control recommendations and policies and share programme experiences that have been successful and might be adapted and implemented by other network members, the RINC Breast Cancer Control Working Group started focusing on the quality of mammography as a regional strategy, a programme that Brazil has been implementing throughout the country with success. This turned out to be an option which was unable to attract the interest and the participation of more than four countries in the region. Since 2014 a new approach is being prepared under the leadership of the government of Paraguay (14).
Collaboration with international organizations
The planning of health policies and its decision-making process in Latin America historically has always had the strategic participation of international organizations, in particular of the Pan American Health Organization (PAHO). The current scenario is characterized by the presence of an increasing number of actors with a powerful agenda and great capacity forf articulation. In the past years cancer control in the region has been supported by leading multilateral organizations and strong potential partners as IARC, WHO, UICC, the United Nation´s International Agency for Atomic Energy (with its PACT programme), PATH, the World Bank, and other institutions such as the National Cancer Institute, the American Cancer Society (ACS) and the Center of Disease Control (CDC) in the United States, and ultimately the Ítalo-Latin American Institute (IILA).
However, the overall balance of the agencies investments in the region in terms of human resources and funds to support prevention, detection, treatment, research and epidemiological information, unfortunately show more unsatisfying outcomes than successful initiatives. The main reasons for that are – to a great extent – the lack of coordination among the agencies, duplication of agendas, discontinuity of actions and the waste of resources. Furthermore, agencies have been traditionally engaged in collaborative partnerships with governments by proposing their own values, concepts and guidelines related to the subject without analyzing profoundly other options or being open to the health agenda or epidemiological priorities of the countries concerned. On the other hand, governments have an unclear vision of their own real demands, which leads to a low programme implementation capacity. Also, it is not uncommon that rotations in the governments impact on the development and continuity of agreements and projects (15).
In contrast, RINC has been working collaboratively with international agencies seeking to increase the implementation capacity of its member countries. The fact that RINC represents the demands and common interests of various governments, facilitates interaction and understanding with the agencies. Collaboration with international organizations has proved to be essential for the development of regional projects. Some examples are the partnership with IARC regarding the implementation of the Latin American Hub for Cancer Registries, with PAHO, CDC, NCI and ACS in the development of a common agenda in cervical cancer control, and with the NCI to improve quality standards on biobanking.
The development of cooperative actions should be reciprocally positive. That is, if on the one hand RINC member countries benefit from technical and financial support of international agencies, on the other hand the agencies will benefit from RINC’s political outreach and mobilization capacity in the region. RINC can provide to agencies with greater access to large geographical areas and more numerous populations, expanding their approach in cancer control in the region.
After nearly four years of developing activities, RINC can and should be considered a milestone in health cooperation in Latin America. Although some of its cooperation programmes are still in the implementation phase and with no tangible evidence of decreasing cancer incidence and mortality in the region, the network has already been acknowledged for its achievements and in its capacity to promote improvements, regarding the three strategic aspects of integration, technical cooperation and networking.
As a structuring network of UNASUR – a South American intergovernmental legal entity created to propel regional integration on various topics, including health – the Network of National Cancer Institutes achieved an unprecedented and unparalleled political outreach, with the ability to mobilize and enlist the support of governments. The network has also participated in important international forums such as the ICCC–5, held in Peru in 2013, the World Oncology Forum 2014 in Switzerland and the World Cancer Congress 2014 in Australia, to discuss key issues on the regional and global control of cancer. Furthermore, RINC was invited to join the International Cancer Control Partnership.
The increasing economic dynamism of the Latin American countries in recent years has imparted greater energy to South–South cooperation. This model gave rise to UNASUR and has been guiding the networks in their strategies. In this context, RINC established a new model for cooperation with closer links among its members, and promoting knowledge-sharing, networking, mutual capacity-building, information and best practice exchanges. For the formulation of demand-oriented cooperation programmes, the identification of common challenges among the countries has been a priority.
In that regard, RINC has also managed to support and strengthen the role that national cancer institutes and other governmental cancer institutions play in their own countries and in the region, making this a uniting factor among them.
Another important aspect for the efficacy of RINC’s work in the region is advocacy. Aiming at raising awareness about cancer among the populations and Peru’s first lady, Nadine Heredia, was invited to support the cause. Mrs Heredia, has been a tireless leading voice in the implementation of Peru´s cancer control plan “Esperanza”. In April 2014 she was appointed by UNASUR “Leader and Social Advocate for Prevention and Control of Cancer” for a two-year term.
Finally, through networking RINC became also a facilitator for multilateral and bilateral initiatives and agreements outside the network. Close links and mutual trust among the countries in Latin America have fostered the ilateral Agreement on Health between Brazil and Peru, cooperation on cervical cancer between Italian research institutions and countries in the region and the organization of a Latin American research network.
Despite these accomplishments, RINC also faced major challenges over the past four years to keep running its projects and ensure the ability to maintain its structure over time. The regulations and bureaucracy of UNASUR, the rotation of governments, and the lack of a regional fund to cover the network´s operations were threats that hampered the work process and pose a risk to the future of RINC. The only funds that are currently available for the development of RINC activities come from the Ministry of Health of Brazil through a cooperation agreement with PAHO. The recommendation of UNASUR, in this sense, is that the institutions organize themselves to provide the necessary human and financial resources for their actions.
Still, the collaboration model proposed by the Network of National Cancer Institutes with partnering institutions working together to tackle the cancer problem in Latin America has shown its advantages. Other regions of the world should consider adopting the same strategy. •
2. Pan American Health Organization. Cancer in the Americas. Country Profiles 2013. Washington, DC:2013.
3. The World Bank. Directions in Development. Human Development. Promoting Healthy Living in Latin America and the Caribbean: Governance of Multisectoral Activities to Prevent Risk Factors for Noncommunicable Diseases. http://dx.doi.org/10.1596/978-1-4648-0016-0
4. RINC Geopolitical Platform for Cancer Control. Last access January 13 2015 in http://www2.rinc-unasur.org/wps/wcm/connect/8ea91b80420ae958afaeef936e134226/boletim_rinc_english_version_2.pdf?MOD=AJPERES&CACHEID=8ea91b80420ae958afaeef936e134226
5. 2nd International Cancer Control Congress (ICCC-2) Final Report. Rio de Janeiro: 2008.
6. 5° Congreso Internacional de Control del Cáncer (ICCC-5) – Supplement 1 – ICCC5, Reporte Final del 5° Congreso Internacional de Control del Cáncer (ICCC-5). Lima: 2014.
7. http://www.redecancer.org.br/wps/wcm/connect/alianza/site_alianza/home Last Access January 13, 2015.
8. Red de Institutos e Instituciones Nacionales de Cáncer (RINC/UNASUR) http://www2.rinc-unasur.org/wps/wcm/connect/RINC/site/home/sobre Last access January 14, 2015.
9. 2010-2015 Five year plan. Union of South American Nations-UNASUR HEALTH – South American Health Council. The International Coordination Committee. Version Approved April 30th, 2010.
10. GLOBOCAN 2012. Last access: January 14 2015 in http://globocan.iarc.fr
11. Template for Experience Exchange and Technical Assistance for Prevention and Control of Cervical Cancer in Latin America. Grupo operativo para el control del cáncer de cuello uterino. Red de Instituto Nacionales de Cáncer. RINC-UNASUR. Last access: January 14 2015. in http://www2.rinc-unasur.org/wps/wcm/connect/ RINC/site/home/grupos_operativos/control_cancer_cuello_uterino
12. Global Initiative for Cancer Registry Development. Action Plan. Latin American IARC Hub. Supporting cancer control in the Spanish and Portuguese speaking countries of North America, Central America and South America. 2014.
13. http://www2.rinc-unasur.org/wps/wcm/connect/RINC/site/home/grupos _operativos/grupo_operativo_de_bancos_de_tumores Last access January 14, 2015.
14.Red de Institutos e Instituciones Nacionales de Cáncer (RINC/UNASUR). Reporte 2013/2014. http://www2.rinc-unasur.org/wps/wcm/connect/4c2db28045daba128758ffdad9df0b60/informe_rinc_2014.pdf?MOD=AJPERES&CACHEID=4c2db28045daba128758ffdad9df0b60
15. Women’s Cancer Initiative: A joint commitment to save lives. A public-private partnership with the Pan American Health Organization, Governments of the Western Hemisphere, and organizations working to prevent and control cancer. http://www.paho.org/hq/index.php?option=com_content&view=article&id=8229:womens-cancer-initiative-joint-commitment-save-lives&Itemid=40276&lang=en Pan American Health Organization, 2013