Authored by Marta Ribes, Predoctoral Researcher and Co-ordinator of the Noma Echoes project at ISGlobal, Barcelona.
Neglected Tropical Diseases (NTDs) are more than just a collection of illnesses; they are an epidemiological reflection of global health inequities. Unlike other diseases that can be categorised by biological traits, NTDs are primarily linked by the social conditions that allow them to thrive. All of them disproportionally affect impoverished populations, those populations historically without voice and without interest for for-profit markets. In this sense, they could be called diseases of neglected populations, an approach used by organisations such as Drugs for Neglected Diseases initiative (DNDi).
What sets NTDs apart is that they have been largely ignored by global health stakeholders. While significant resources have been directed towards fighting the so-called ‘Big Three’ diseases in global health – malaria, HIV/AIDs and tuberculosis – NTDs have received only a fraction of the attention. According to the 2023 G-Finder report, investment for NTDs stood at about $349 million annually. This represents a 9% decrease since 2010. This has been accepted by academics in a view of a ‘limited budget’, but this justification only perpetuates a double standard of care, leading to believe that such inequities are acceptable. In words of Paul Farmer, a medical anthropologist, ‘The idea that some lives matter less is the root of all that’s wrong with the world’.
The inequities surrounding NTDs manifest in various ways. Take, for example, sleeping sickness, which lacks an adequate treatment. For nearly seventy years, Melarsoprol was the single treatment available, even though it was so toxic that it killed one in 20 patients, until DNDi took the lead to conduct R&D to develop a safe and easy-to-use treatment.
For other NTDs, treatment often exists but fails to reach patients. This is a reality for snakebite envenoming patients in Sub-Saharan Africa, where there are frequent shortages of antivenoms. Pharmaceutical companies, deeming their production unprofitable, have stopped making antivenoms, leaving governments unable to afford the limited supplies.
In the case of noma, a devastating and rapidly progressing oral gangrene, the inequity lies in an outrageous lack of awareness. All too often, this results in a delay in diagnosis and treatment that leads to the death of the patient in 90% of the cases, even though a simple and accessible antibiotic regimen may prevent mortality. Similarly, rabies, a disease that is entirely preventable with an existing human vaccine, claims 59,000 deaths annually.
Be it an absence of treatment or access to it, delay in diagnosis or lack of prevention, the list of unacceptable situations goes on for the 21 diseases officially recognised as NTDs by the World Health Organization, and for the many more diseases that do not even earn the label.
In most cases, we know what to do, but action remains elusive. Global health stakeholders find themselves mired in endless resolutions, declarations and conventions, while academics focus on impact factors; too often forgetting that diseases are suffered by people and that global health research is ultimately intended to help them.
If these diseases exist because the people at risk have no voice, then it is imperative to include patients and those with lived experiences in the decision-making processes. A powerful example of this was the Cange Declaration. AIDS patients treated by Partners in Health in Haiti raised their voices to advocate for access to treatment for all patients, pleading “is not every human being a person?”. For noma, the input of those people who survive the acute phase is key to understand its clinical progression, as it is rare to encounter patients in the acute stage.
By giving a voice to those affected, we will be tackling both the means and the end of inequities that allow these diseases to persist. The fight against NTDs is not just a medical challenge, it is a moral imperative.
Marta Ribes is a PhD student on noma epidemiology at the Barcelona Institute for Global Health. She earned her bachelor’s in Biomedical Sciences from the University of Barcelona, and master’s degrees in Neuroscience from Sorbonne Université and Global Health from the University of Barcelona. In the past, she has been involved in several COVID-19 projects, focusing on its epidemiology and immune response. Additionally, she participated in the implementation of a clinical trial in Mozambique and Kenya which tested a new vector control tool for malaria.
After attending a screening of the documentary “Restoring Dignity”, she decided to shed light on the disease through research and outreach activities. In January 2024, she led the project “Noma Echoes” in Zambezia, Mozambique, which evidenced the presence of noma in the country after decades of neglect. She now devotes herself full-time to noma, and envisions this project as a catalyst for future research and awareness on the disease in Mozambique and beyond
