Neglected Tropical Diseases: Forgotten Diseases, But Their Impact Is Real

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Authors: Feny DH, Mogsa DF, Kartika DP, Karyana M (Health Administrator, Working Team for Policy and Strategy for Controlling Infectious Diseases and Environmental Health, Center for Health Resilience System Policy, BKPK, Ministry of Health, Republic of Indonesia)

Amidst the intense attention paid to popular diseases that often grab the public's attention, such as tuberculosis, diabetes, cancer, heart disease, kidney failure, and the threat of new pandemics, there is another group of diseases, the silent health threats, that often escape the mainstream conversation.

These diseases don't always make headlines. They don't always cause widespread panic. They aren't always seen as a national crisis. But their impact is real: they cause disability, stigma, loss of productivity, financial burden on families, and widen health disparities. This group of diseases is known as as Neglected Tropical Diseases (NTDs) or Neglected Tropical Diseases.

The term "neglected" should not be misinterpreted as meaning this disease is mild. On the contrary, this disease is called neglected because it affects many poor people, people in remote areas, communities with limited sanitation, crowded environments, unequal access to health services, and groups that often lack a strong voice in decision-making. In other words, this disease is not only a medical problem, but also a reflection of the inequality in health development.

The Global and National Burden Remains High

Globally, the burden of NTDs remains enormous. The WHO estimates that by 2023, approximately 1,495 billion people will still need preventive and treatment interventions for at least one neglected tropical disease. This figure has decreased by approximately 122 million people compared to 2022 and by approximately 32% compared to 2023. baseline 2010, but it still shows that NTDs remain a major public health problem. The disease burden is also not small: between 2015 and 2021, the burden of NTDs fell from 17,2 million to 14,1 million. DALYs (years of healthy life lost due to disability or premature death), while NTD-related deaths fell from approximately 139.000 to 119.000 deaths.

In Indonesia, this issue is also highly relevant. WHO Indonesia states that NTDs impact approximately 80 million people, or approximately 29% of the population. Of the 21 globally recognized NTDs, 11 are endemic in Indonesia, including lymphatic filariasis, helminthiasis, taeniasis, schistosomiasis, leprosy, yaws, dengue, chikungunya, scabies, rabies, and venomous snakebites. This data demonstrates that NTDs are neither a minor nor a marginal issue. They affect nearly a third of Indonesia's population and are spread across various forms, each with varying transmission patterns, risk factors, and intervention needs.

Destroy Slowly, Not Kill Quickly

Many NTDs don't always cause rapid death like major epidemics. However, they can be slow-acting and leave lasting impacts. Leprosy can cause neurological disorders, disability, recurrent wounds, and social stigma. Filariasis, or elephantiasis, can cause swelling of the limbs, reduce work capacity, and increase the burden of family care. Yaws can affect the skin, bones, and joints, especially in children. Worm infestations can interfere with a child's nutritional status, concentration in school, and growth and development. Rabies can be fatal if not prevented and treated promptly. Dengue can cause outbreaks, strain on health services, and even death.

This is what makes NTDs dangerous. Their impact isn't always seen in a single death, but rather in many forms: children whose schooling is disrupted, adults whose workdays are lost, families whose care costs are burdened, patients whose stigma is felt, and regions whose lives are increasingly left behind by recurring illnesses in the same communities. The accumulation of these impacts, when affecting millions of people, contributes to lost national productivity, increased household health expenditures, and reduced competitiveness in regions still burdened by NTDs.

Therefore, NTDs should not be viewed solely as an infectious disease issue. Neglected tropical diseases are systems issues. They relate to clean water, sanitation, housing, the environment, education, behavior, poverty, access to primary care, surveillance, financing, and cross-sectoral governance.

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Why Are NTDs Often Overlooked?

There are several reasons why this disease is often overlooked. First, victims are underrepresented in policy. Inland communities, small islands, and marginalized communities often lack strong political leverage. Second, the impact is hidden. Disability, stigma, and lost productivity are rarely fully recorded in routine reporting systems. Third, it requires cross-sectoral collaboration. Worm infestation requires sanitation and healthy schools. Rabies requires collaboration between animal health organizations. Dengue requires household participation. If the health sector works alone, results will be insufficient. Fourth, it requires long-term consistency. Elimination is not a one-time project, but rather a complex process of mapping, early detection, treatment, mass drug administration (if necessary), ongoing surveillance, public education, and stable financing.

Thus, addressing the ‘neglected’ nature of NTDs requires a combination of technical and political interventions: ensuring that the voices of affected communities are present in planning, that NTD data are used in budgeting, and that NTD indicators are included in health development performance measures at both the central and regional levels.

Indonesia Has Moved, but Unfinished Work

Indonesia has actually shown significant progress. In 2025, the Ministry of Health awarded certificates of elimination of neglected tropical diseases to several regions. These certificates were awarded to five districts/cities that received leprosy elimination certificates, seven districts/cities that received filariasis elimination certificates, and 89 districts/cities that received yaws-free certificates. These achievements demonstrate that NTD elimination is achievable if the central government, local governments, health workers, cadres, communities, and development partners work together.

However, these achievements should not weaken vigilance. In NTD control, elimination is not the end of the task. Once an area is declared eliminated or free of a particular disease, the next challenge is maintaining that status. Surveillance must continue. New cases must be identified. Vigilance must never cease. Environmental changes, population mobility, urbanization, climate change, and unequal access to services can open the door to the resurgence of transmission.

The Ministry of Health has also emphasized the accelerated elimination of NTDs, particularly leprosy and filariasis, with a target of being free by 2030 through early detection, mass treatment, and cross-sector collaboration in endemic areas. This target is important because it provides a clear policy direction: NTDs cannot be controlled reactively; they must be eliminated gradually, measurably, and sustainably.

Legal Framework: A Foundation That Cannot Be Delayed

One of the most important recent developments is the push to strengthen the legal framework for NTD control in Indonesia. In May 2026, WHO Indonesia highlighted the process towards a stronger legal framework to end neglected tropical diseases. This regulation is aligned with the WHO Roadmap for Neglected Tropical Diseases 2021–2030, which aims to strengthen national leadership, enhance cross-sectoral collaboration, and protect vulnerable communities. WHO Indonesia also emphasized that NTDs continue to impact millions of people in Indonesia, especially the poor, remote, and underserved.

This is a crucial step. Why? Because without a strong legal framework, NTD control easily relies on short-term projects, campaigns, or activities. Yet, these diseases require clear roles, service standards, financing, surveillance systems, cross-sectoral mechanisms, and accountability from the central and regional governments.

A strong legal framework is needed to address these highly operational questions. Who is responsible for mapping endemic areas? What are the responsibilities of local governments in early detection and case response? How are NTDs integrated into primary care, schools, villages, and communities? How are elimination and post-elimination surveillance activities funded? What is the role of non-health sectors such as sanitation, education, public works, the environment, and animal health? How can we ensure that NTD data is not only collected but also used for decision-making?

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Questions like these cannot be answered simply by appeals. Binding policy instruments are needed. Without this clarity, NTD programs risk becoming sporadic, relying on individual initiatives or short-term projects rather than a sustained, systemic mandate.

NTDs are a Health Inequality Issue

NTDs are closely linked to inequality. These diseases are often found in areas with limited basic infrastructure. When clean water is scarce, sanitation is poor, housing is crowded, access to health centers is remote, health literacy is low, and people delay seeking treatment, the risk of disease increases.

In other words, NTDs often indicate that certain groups in society are not yet fully benefiting from health development. If a region still has a high burden of NTDs, this not only indicates the presence of disease but also indicates issues with access to services, the environment, sanitation, and social protection.

Therefore, NTD elimination should not be read solely as an epidemiological target. NTD elimination is a measure of health equity. If a district is successfully free of yaws, it is not only a success of the infectious disease program. It also demonstrates the collaborative efforts of surveillance, primary care, cadres, local governments, schools, villages, and communities. If a region successfully eliminates filariasis, it is not only a success of mass drug administration but also of social mobilization and program consistency. Conversely, if NTDs persist in an area, it should be interpreted as a signal that the system has not fully reached vulnerable groups.

Primary Care: A Frontline That Must Be Strengthened

NTD control must rely on primary care. Community health centers (Puskesmas), community health posts (Pustu), integrated health posts (Posyandu), community health workers (cadres), schools, villages, and communities are at the forefront of control. Many NTDs require simple symptom-based early detection, active case finding, family education, regular treatment, and long-term monitoring. All of this cannot be achieved by hospitals alone.

However, primary care should not simply be burdened. The momentum of strengthening primary care and integrating primary care can be used to ensure that early detection and management of NTDs are no longer 'add-on' activities, but an integral part of the essential service package at community health centers and their networks. Health workers need practical training. Cadres need simple educational tools. Recording systems must be easy to use. Funding for field activities must be available. Local governments need clear indicators. Communities need to understand that leprosy, filariasis, yaws, worms, scabies, or other tropical diseases are not a disgrace, a curse, or a reason to ostracize sufferers.

Stigma is a major enemy in NTD control. In leprosy, for example, stigma can lead people to hide symptoms and delay seeking treatment. With diseases that appear on the skin or limbs, the social impact is often more severe because physical changes are readily visible. Therefore, public communication must be a core part of the program, not an add-on.

Cannot Rely Only on the Health Sector

NTDs are a clear example that health cannot be addressed by the health sector alone. Worm infections require sanitation, clean water, hand hygiene, healthy latrines, and a healthy school environment. Filariasis requires vector control and community compliance with mass drug administration. Schistosomiasis requires environmental approaches, control of intermediary snails, community behavior, and management of endemic areas. Rabies requires vaccination of animals that transmit rabies, bite management, community education, and animal health coordination. Dengue requires mosquito control, environmental management, health facility preparedness, and household participation.

Therefore, the approach One Health and Health in All Policies is highly relevant. The health sector needs to lead in terms of evidence, technical standards, surveillance, and service delivery. However, success on the ground requires support from other sectors. Village governments help mobilize communities. Schools become gateways to education. Public works departments support sanitation and the environment. The livestock and animal health sectors play a role in rabies and zoonoses. The media helps build awareness and reduce stigma.

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Cross-sector collaboration shouldn't just be a phrase in a document. It must translate into roles, indicators, funding, and evaluation mechanisms.

Policy Agenda That Needs Strengthening

  1. Update endemic area mapping regularly. Old data is insufficient to assess current risks. Environmental changes, population mobility, regional development, and climate change can alter risk patterns. Risk maps should be used to prioritize interventions, not simply as an appendix to reports.
  2. Strengthen the integration of NTDs into primary care. Early detection, treatment, referral, education, and surveillance must be part of the routine work of primary care, especially in endemic areas. Integration of primary care can be a crucial step toward eliminating NTDs as a separate program active only during special events.
  3. Maintain post-elimination surveillance. Areas that have received elimination or disease-free certification still require monitoring. Elimination should not be interpreted as a cessation of vigilance.
  4. Strengthen anti-stigma public communication. Neglected tropical diseases need to be explained as preventable, detectable, and treatable. Communities should be encouraged to seek help early, rather than hiding symptoms for fear of being ostracized.
  5. Clarify the funding scheme. NTD elimination requires funding for surveillance, drugs, training, field visits, education, risk factor control, and cross-sector coordination. If funding is unclear, the program will rely on short-term momentum.
  6. Strengthen implementation research. Indonesia needs evidence on the most effective NTD control models across various regional contexts. Strategies for island, remote, urban/densely populated areas, border regions, and long-endemic areas differ. National policies need to provide strong direction while remaining adaptive to local contexts.

These six agendas are interrelated: robust mapping without integration of primary care services will be ineffective; post-elimination surveillance without clear funding will be difficult to maintain; and public communication without implementation research risks missing the root causes of problems in communities.

Conclusion: The Neglected Must Be Returned to the Center of Attention

Neglected Tropical Diseases is a reminder that the burden of disease doesn't always align with public attention. Some diseases aren't widely discussed, but they continue to diminish quality of life. Some diseases don't always lead to a quick death, but they leave people jobless, lose confidence, experience stigma, and become trapped in poverty (which may seem small in the news, but have a profound impact on the lives of affected families).

Globally, approximately 1,495 billion people still require NTD interventions each year. In Indonesia, approximately 80 million people are affected by NTDs, and 11 of the 21 global NTDs are endemic. These figures are enough to emphasize that NTDs can no longer be marginalized by policy attention.

Indonesia has made significant progress in eliminating several NTDs. But the work is not done. The 2030 target requires more targeted, evidence-based, well-funded, and sustainable work. Strengthening the legal framework is crucial to ensure that NTD control is not fragmented but part of a more equitable, robust, and responsive public health system.

Neglected tropical diseases must not remain neglected. When a disease is left on the sidelines, those most affected are often those with the fewest options. This is where the government needs to intervene to ensure that diseases affecting vulnerable groups are not deprioritized simply because they are not sufficiently publicized.

NTDs are forgotten diseases because they affect our marginalized brothers and sisters. Controlling them means not only curing the disease but also breaking the chain of health inequalities that lock them in such vulnerability.