The 17, Institute of Critical Studies is to be congratulated for the bold decision to hold an international colloquium entitled ‘En Suma, la Lepra’ in Mexico, a country where Hansen’s disease is relatively rare and other issues are of more pressing concern. However, there are many aspects of this disease and a range of other Neglected Tropical Diseases (NTDs) that are extremely relevant to all societies in their different manifestations: stigma, isolation, disability, perpetuation of poverty and neglect. There are valuable lessons to be learned from the ways that other countries combat these diseases and the strategies that international organizations promote, most notably Community-Based Rehabilitation (CBR) which was the other main pillar of this colloquium.
My contribution to the colloquium was an analysis of trends in the fight against Hansen’s disease over the last fifteen years in Brazil and how they could potentially be useful and relevant for the Mexican and wider Latin American contexts. Following a brief overview of the disease and the work of Netherlands Leprosy Relief in Brazil and around the world, the main topics addressed were: a) the availability and acceptance of foreign development assistance for public health initiatives in Brazil/Latin America; b) the evolving role of international organizations in Hansen’s disease/NTD public health interventions, especially the CBR strategy; and c) the increasing demands placed upon civil society and philanthropic organizations in the current regional context.
Background on Hansen’s disease and NTDs in Brazil/Latin America
When discussing Hansen’s disease or many other NTDs, few countries bear the burden that Brazil does. Despite a strong and decentralized public health system, nearly 90% of all new cases in the Western Hemisphere are Brazilian. It has around 30,000 new cases per year (as opposed to approximately 200 in Mexico) and 15% of the world’s annual cases. Together, India, Indonesia and Brazil account for 80% of the total international leprosy burden.
With only 20% of the hemisphere’s population, Brazil also has nearly all cases of schistosomiasis and visceral leishmaniasis as well as the majority of persons affected by Chagas’ disease, trachoma, leptospirosis, dengue fever and malaria. There are even pockets of onchocerciasis and lymphatic filariasis that still need attention. Many of these diseases are present in Mexico and throughout Latin America and the Caribbean (LAC), as more than 200 million people are at risk of contracting multiple NTDs.2 Nevertheless, few organizations that deal with leprosy and other NTDs maintain a permanent presence in the region and donors rarely include it as a priority for support.
Although there are specific geographical and climatic factors that favor these diseases in certain regional clusters, the income concentration and poverty that pervade Latin America also help to propagate the conditions for transmission. Despite an improving GINI coefficient, there are still only four countries with a more inequitable distribution of income in the world than Brazil. Nearly 11% of the total national population—22 million people—live on less than $ 2 per day3, and this total rises to 13%—80 million—across the LAC region.4 These are the individuals disproportionately affected by diseases of poverty. Although each disease has unique pockets of high-burden areas throughout Brazil, there is a greater risk for those living in impoverished northeast, the Amazon River basin and in communities of indigenous peoples that dot the national landscape.
Foreign development assistance
Foreign Development Assistance (FDA) for public health in Latin America, specifically in the areas of Hansen’s disease and NTDs, has declined over the last decade, representing a microcosm of larger regional trends. An example of this is the work of the International Federation of Anti-Leprosy Associations (ILEP), composed of fifteen members—including NLR—committed to work for a world free of Hansen’s disease. In 2000, seven of these organizations had permanent offices in the country with another three providing additional funding with the total reaching nearly € 4 million per year. Fifteen years later, there are only three active members with a joint annual budget of a little over € 1 million.
This is not just a phenomenon of Hansen’s disease as the wider Neglected Tropical Disease (NTD) Nongovernmental Development Organization (NGDO) Network (NNN), of which ILEP is a member, has also decreased its presence in the region. Beyond the ILEP members working in Brazil, Colombia, Paraguay and Bolivia, there is only support from the Mectizan Donation Program for Onchocerciasis and CBM’s international work in multiple diseases related to blindness. That said, the NNN does not cover all NTDs, focusing only on leprosy, lymphatic filariasis, onchocerciasis, schistosomiasis, STH, and trachoma. There are other strong international networks in the region, most notably those associations working to combat Chagas’ disease, but given the scope of the relative risk for disease transmission in the region, the level of attention is clearly below what is needed.
This shortfall in resources and support reflects pressures both from the perspectives of the donors and potential recipients of FDA. On the ‘supply’ side, a series of factors has led to the general reduction of external resources for public health in Latin America over the last decade. Many countries are now viewed as middle-income countries (MIC) which has had an impact on the amount of funding available from multilateral, bilateral and non-governmental organizations in the world. Regardless of the regional and economic disparities that contribute to a disease burden similar to that of Asia and Africa, most aid organizations see only the middle-income reality of the region. Given that the costs of working in Latin America are higher relative to other parts of the developing world, greater investments are needed to achieve comparable results. This problem was exacerbated by the reduction in available funds brought on by economic crises in the United States and Europe in 2007-2010 and relatively tepid growth since then. Organizations that depend on individual donations—such as many of those in ILEP and the NNN—have struggled to maintain previous levels of funding.
At the same time, most international health organizations have adopted the expectation that Latin American governments take on greater responsibility for the quality and coverage of their public health programs. The pervasive notion that the region’s principle problem is the poor distribution of resources rather than overall need has led to a stronger focus on ‘health governance’ initiatives that seek to redistribute public sector funding allocation. The problem with this approach, however, is that health governance programs often go beyond the scope of any single FDA organization, causing smaller donors to leave the region. Support for health governance initiatives has been restricted to multilateral organizations such as the World Bank with limited results. Unfortunately, this is a longer-term approach that neglects the current suffering of individuals across the region.
As the availability of funding has declined for the region, so too has the willingness to seek or accept this type of support, particularly in the public sector. Despite the high levels of poverty and disease in Latin America cited earlier, many national governments have chosen to refuse international resources for reasons of national autonomy, sovereignty and prestige. Although this is less common at the state and municipal levels, federal governments in the region have been increasingly careful about taking FDA. One case in point was Brazil’s refusal of a $27 million grant from the Global Fund against AIDS, Tuberculosis and Malaria (GFATM) for the national tuberculosis program in 2011, citing the ability to cover for the program’s interventions with federal resources.5 Even though a considerable portion of funding stayed in country for civil society partners, this was a symbolic show of force.
Part of the reason for this shift over the last 15 years is that many countries have sought to take on a donor role within the region and for partners in Africa and Asia. Brazil, Mexico and Chile have been increasingly active in South-South cooperation, using this as a mechanism to promote assertive foreign policy and gain political and economic influence.6 They have achieved a stronger place on the global stage through these investments, but also indirectly lowered the priority for needs existing in their own countries. Brazil and Chile joined forces with France, Norway and the UK in 2006 to create UNITAID as a mechanism to fund health interventions in the developing world. Many stakeholders in Brazil, however, questioned whether the roughly $12 million/year that was donated to this fund would not have been useful in dealing with domestic health issues.
Beyond the prestige involved in forsaking FDA, and taking on a more active donor role, is the example of diverting resources away from public health and other social needs for a more prominent international role. Brazil has been the most obvious example of this in the region through the pursuit of a potential permanent seat on an expanded UN Security Council. Large-scale international events, such as the 2014 FIFA World Cup and the 2016 Summer Olympic Games in Rio de Janeiro, lend even more credence to international perceptions that Brazil needs little external support to tackle its basic public health problems.
Finally, it merits mentioning that FDA, whether through multilateral/bilateral or non-governmental organizations, has garnered an increasingly negative connotation in the region. On the one hand, bilateral support from external governments—most notably the United States through agencies like USAID—has been colored by a historical legacy of interference in the national policies in the region. Countries like Ecuador and Bolivia have recently refused support from USAID and other American bilateral organizations for this reason, and in 2012, 26 foreign NGOs were requested to leave Ecuador after authorities suspected a lack of transparency about their funding and scope of operations.7
Even where there is acceptance of the work being done by international NGOs in public health and other sectors, they are often tainted by association. The common practice by Brazilian politicians and business owners of creating their own NGOs—many of which have received public funding and eventually been implicated in illegal or illicit activities—has led to negative attitudes towards NGOs of any stripe. Consequently, international NGOs are also seen as having dubious practices by different social sectors whether having political ties or not. These factors have contributed to the ‘demand’ side of FDA being less receptive to receiving the reduced international funding that is available.
Role of international organizations in leprosy/NTD control
Where there has been solid international cooperation in public health, such as in the realm of Hansen’s disease with the ILEP Federation NGOs, the larger question has been the type of support offered and accepted at the sub-national level. Over the more than 50 years of ILEP members’ involvement in the region, its FDA has often gone beyond the scope of what might commonly be expected from civil society organizations. For decades, this support included a full range of activities common to public-sector disease control programs, especially at the state level. This might be considered a type of ‘institutionalized stigma’ as if the only way that state public servants would work on such a disease is if there was additional funding available. While greatly appreciated by state-level technical partners involved in the disease programs, the fungibility of international support effectively allowed managers to shift tax revenues away from state Hansen’s disease programs to cover other public health needs. This was a de facto outsourcing of leprosy control financing to these organizations.
With the reduction of available funding mentioned above, these organizations recently began cutting support for routine program activities such as the training of primary care doctors, nurses and community health agents; supervision of control activities; health education materials; and inputs for the prevention of disabilities. This was necessary for the autonomy of public health programs and sustainability of proper care, but it also left a major gap in the provision of services in states and municipalities without funding to cover the difference. Even where public funding is now available to fill the gap, state governments have grown accustomed to diverting funding away from Hansen’s disease and other NTDs and have been slow to alter previous practices and shift attention back to these important programs. As a result, the international NGOs inadvertently created a shortfall in services that has still not totally been corrected.
The members have now shifted their attention to several important direct interventions and social development projects, including the implementation of the Community-Based Rehabilitation strategy. There are now many other important opportunities for international NGOs, universities and donors to introduce FDA in the region and produce a wider impact, including:
- Working to take advantage of the unique combination of multiple tropical diseases and highly skilled researchers present in the region. This has led to many joint international research projects, especially with larger universities in the capital cities. In Brazil, the range of committed researchers and scientists goes well beyond these universities and allows for engaging in studies closer to the endemic Hansen’s disease and NTD areas. The combination of institutional capacity and persons in need of new health tools and services makes this an attractive area of investment;
- The variety of NTDs and high levels of regional and urban poverty call for cross-cutting initiatives that take a holistic view of the individuals affected. Netherlands Leprosy Relief and other ILEP/NNN members have been working on approaches to work transversally for improved social inclusion, quality of life and access to services;
- Many countries offer fertile ground for pilot initiatives and testing of new diagnostic tools, technological innovations and vaccines that could be scaled up and expanded to other countries in need. While it may be possible to outsource the rollout phases to regional governments, support for innovative strategies is often welcomed locally even as at the initial testing stages. This includes incidence mapping of multiple NTDs to target public health interventions to the most affected areas;
- Finally, the strategy of Community-Based Rehabilitation (CBR) offers an opportunity for public-private initiatives that could have an impact for persons with disease-related disabilities. CBR began as a community health intervention for persons with disabilities located far from structured rehabilitation centers. Over recent years, however, it has evolved into a multi-faceted strategy that moves beyond health conditions to integrate the educational, social, vocational and empowerment mechanisms available to persons with any number of life restrictions. In those countries without a national CBR policy in place, NGOs and other providers of FDA can be essential to lobby for such a policy and to integrate community development stakeholders who are in place.
Demands placed upon local CSOs
As a consequence of the multiple contextual shifts in FDA listed in previous sections, it is becoming increasingly difficult to gain access to funding and to carry out public health interventions. Those few organizations that continue to provide funding have started requiring greater results and placing higher conditions on those that receive funding. The passion and dedication to the cause of ‘health for all’ among civil society organizations and their members is still the starting point for any intervention, but it is no longer enough to secure funding in an increasingly competitive environment.
The rising demand for results has been faster than the institutional capacity of recipients to adjust to them. Key managerial skills such as the ability to plan strategically, formulate proposals, implement projects on time and produce relevant data on indicators are not common among CSO and public sector leaders. Local civil society organizations and municipal governments are struggling to keep up with the demands of the development assistance world and to compete with stronger organizations.
It is now necessary to achieve a high level of professionalism that goes beyond the managerial competencies to include communications, institutional fundraising and lobby/advocacy to be successful. The demands on non-profit and public entities are now that they must be outstanding to compete in an increasingly congested sector. However, the opportunities for continuing education and professional preparation are lacking far behind this new reality, something that future FDA should look to provide.
Despite the need for direct support in Hansen’s disease and NTD control in many regions and countries of Latin America, there is not likely to be a large-scale return of international NGOs and FDA donors to help cover public health programs. Nevertheless, the region offers important conditions for the development of new approaches, research, training courses and technical tools that can benefit the populations of persons affected by these diseases and be scaled up to help others across the world.
International development assistance organizations still have an important role to carry out in reducing NTDs as a public health problem. They can be agents of change that catalyze the strengthening of Latin American civil society and governmental organizations. A good place to start is the promotion of institutional development initiatives to help transfer and diversify the skills of professionals and volunteers in social movements working in public health and community-based rehabilitation programs to exercise their passion with increasing effectiveness.
NGOs such as the ones involved in ILEP and NNN need to be more effective in bringing together multiple partners and producing multi-sectoral plans. In particular, it is essential to involve persons affected by Hansen’s disease and NTDs to lead holistic interventions that go beyond basic health conditions to include all elements of CBR. They are the ones that must be empowered to stand at the forefront of the activities that are focused on their needs and their quality of life.
Note of Appreciation
I am extremely appreciative of the invitation made by Drs. Benjamín Mayer and Beatriz Miranda to participate in this international colloquium and for all the support from the 17, Institute of Critical Studies team. It was a pleasure to hear perspectives on Hansen’s disease from other countries, namely Mexico, Argentina and Spain, but especially to hear more about CBR initiatives. In particular, the workshop led by Drs. Sunarman Sukamto and Erik Post, as well as the presentation by Ms. Flávia Ester Anau from Piña Palmera, were especially inspiring.
Netherlands Leprosy Relief (NLR) – Brazil Program
- World Health Organization (WHO). http://www.who.int/neglected_diseases/diseases/en/ (accessed on November 18, 2016)
- Inter-American Development Bank. “IDB integrates efforts to fight Neglected Tropical Diseases.” July 23, 2014. http://www.iadb.org/en/topics/health
- World Bank data. http://data.worldbank.org/indicator/SI.POV.2DAY (accessed on November 24, 2016)
- World Bank data. http://povertydata.worldbank.org/poverty/region/LAC (accessed on November 24, 2016)
- Brazilian Federal Government. http://www.brasil.gov.br/saude/2011/06/governo-analisa-a-possibilidade-de-deixar-de-usar-recursos-do-fundo-global-contra-aids (accessed December 10, 2016).
- Robledo, Carmen. “New donors, same old practices? South-South Cooperation of Latin American emerging donors.” Journal of the Global South, 2015. V.2:3.
- Telesur TV. http://www.telesurtv.net/english/analysis/NGOs-A-New-Face-of-Destabilization-in-Latin-America-20160605-0025.html (accessed 30 Oct. 2016)
 There are currently 19 diseases recognized in this group: Buruli ulcer, Chagas disease, Chikungunya, Dengue fever, Dracunculiasis, Echinococcosis, Foodborne trematodiasis, Human African Trypanosomiasis, Leishmaniasis, Leprosy (Hansen’s disease), Lymphatic filariasis, Mycetoma, Onchocerciasis, Rabies, Schistosomiasis, Soil-transmitted helminthiases, Taeniasis/Cysticercosis, Trachoma and Yaws.