Neglected Tropical Diseases or Diseases of Neglected People? By Chinedu Moghalu

A Noma Patient

By Chinedu Moghalu

In a remote village in northern Nigeria, young Amina’s life took a tragic turn when she contracted noma. At just five years old, she faced the devastating effects of this neglected tropical disease, which rapidly destroyed the tissues of her face. Her once bright smile was replaced by pain and disfigurement, a cruel testament to the neglect faced by many in impoverished communities.

On October 26, 2023, Nigeria’s Coordinating Minister of Health and Social Welfare, Muhammad Ali Pate CON, met with the team of Hilfsaktion Noma E.V., who have been committed to working with and providing assistance to noma victims. He expressed deep empathy about the stories of noma victims in Nigeria, especially the indignation to which they’re subjected. That was the first time this writer would hear about NTDs.

Neglected Tropical Diseases: Diseases of Neglected People

Neglected Tropical Diseases (NTDs) represent a significant global health challenge, affecting over a billion people worldwide. These diseases, which include conditions like noma, leprosy, schistosomiasis, lymphatic filariasis, and trachoma, primarily impact the world’s poorest and most marginalized communities. While the term “Neglected Tropical Diseases” is widely used, it may be more accurate to describe these illnesses as “diseases of neglected people.”

NTDs thrive in environments marked by extreme poverty and are inextricably linked to poor living conditions, inadequate sanitation, lack of access to clean water, and insufficient healthcare. These factors create a fertile ground for its spread, demonstrating that the diseases themselves are symptoms of a broader systemic neglect. The prevalence of NTDs is a stark indicator of the deep-seated inequalities that persist in global health and development.

The Cloke of Invisibility

One of the critical challenges in addressing NTDs is their relative invisibility on the global health agenda. Unlike high-profile diseases such as HIV/AIDS, malaria, and tuberculosis, NTDs do not attract the same level of attention or funding. This lack of visibility is partly because NTDs do not typically cause dramatic, newsworthy outbreaks or require huge procurements. Instead, they lead to chronic, debilitating conditions that quietly devastate lives over time. This invisibility perpetuates a cycle of neglect, where the needs of affected populations are consistently overlooked in health policy and funding decisions.

Despite the conditions these diseases consign their victims to, NTDs do not receive much media coverage and public awareness. Worse still, they are often deprioritized in national health budgets and strategies. This neglect has left the victims without dignity and suffering in silence from conditions that could be preventable with attention and social welfare amenities.

The Human and Economic Toll

The real cost of NTDs in human terms is staggering. Victims experience severe suffering, disability, social stigma, and discrimination—often treated like pariahs. For example, lymphatic filariasis can result in painful, disfiguring swelling, leading to social isolation. Trachoma, if left untreated, can cause irreversible blindness. Noma causes orofacial gangrene, and survivors are scarred with facial deformities and societal rejection. Economically, NTDs reinforce cycles of poverty by preventing their victims from normal life pursuits including working, attending school, and even fully participating in community life.

The Life Course Perspective and Sector-Wide Approach

Addressing NTDs requires a multifaceted approach that goes beyond medical treatment. The life course perspective of the Nigeria Health Sector Reform Investment Initiative (NHSRII) emphasizes addressing health needs at every stage of life. This approach is critical for NTDs, which can impact individuals from childhood through adulthood. Integrating NTD programs into broader health systems and development initiatives is crucial. By doing so, we can ensure that the needs of neglected populations are met in a sustainable and holistic manner. This integration also helps to build more resilient health systems that can address multiple health challenges simultaneously.

In Nigeria, successful programs have integrated NTD treatment with other health services, such as immunization campaigns and maternal health initiatives. These integrated approaches have shown promise in increasing coverage and reducing the prevalence of NTDs in targeted communities.

Coordinated Health and WASH Initiatives

Most importantly, a coordinated approach for health and water, sanitation, and hygiene (WASH) is essential. Improving WASH infrastructure is a fundamental component of preventing NTDs. For example, access to clean water and proper sanitation can significantly reduce the transmission of many NTDs. By integrating WASH initiatives with health programs, authorities can create environments that support overall well-being and prevent the spread of these diseases.

Advocacy and Policy Imperatives

Advocacy is vital in bringing attention to NTDs and the neglected populations they affect. Policymakers, health organizations, and community leaders must collaborate to elevate the issue on national and international health agendas. Increased funding and resources are essential for scaling up prevention, treatment, and research efforts. To be most effective, community-led initiatives must be prioritized.

Underscoring the commitment of the Government to fighting NTDs, Minister Pate said, “The so-called ‘neglected tropical diseases’ in real terms are ‘diseases of neglected people’. They represent the ‘face of poverty’ and ‘failure of human development efforts.’ The ‘whole-of-society’ approach we have adopted to improve quality healthcare demands a wholesome coverage for every condition affecting Nigerians. The Renewed Hope agenda is about restoring the dignity of the human person as a right.”

Investing in NTDs is not only a moral obligation but also a strategic move. By tackling these diseases, we can improve health outcomes, reduce poverty, and promote economic development in some of the world’s most vulnerable communities.

Conclusion

NTDs are more than just a collection of diseases; they are a manifestation of the neglect faced by billions of people worldwide. To effectively combat NTDs, we must shift our focus from the diseases themselves to the conditions that allow them to persist. This means addressing poverty, improving living conditions, and ensuring equitable access to resources and care. By doing so, we can work towards a future where no one is neglected, and these diseases are no longer a blight on the world’s most vulnerable populations.

In Nigeria, addressing NTDs requires concerted efforts at all levels of society, from government policies to community-based initiatives. By investing in the health and well-being of the most marginalized, we can break the cycle of neglect and build a healthier, more equitable future for all Nigerians.

Barrister Chinedu Moghalu, Senior Spécial Adviser to the Coordinating Minister of Health and Social Welfare on Strategic Communication, Stakeholder Engagement & Advocy

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