Amitava Banerjee: At what point does a disease become neglected and who decides?

My first global health experience was an elective in South Africa during medical school in 2001, at a time when antiretroviral therapy was not available to the vast majority of HIV-infected individuals worldwide. Although diseases such as HIV, TB and malaria had proven treatments, they were neglected, whether in terms of attention or political will, with gaping inequalities between countries, populations, and individuals. While I was an intern at the World Health Organization in 2005, the Global Burden of Disease (GBD) Study showed that low-income settings faced a “dual burden” of infectious and non-communicable diseases (NCDs). However, as access to antiretroviral drugs improved, access to drugs for NCDs lagged behind. Misconceptions led to neglect of individuals with NCDs by policymakers and the press in the least developed nations.

On the 20th anniversary of the GBD Study, I was struck by how far we have come in monitoring and surveillance of disease epidemiology within and across countries, yet the yardstick of “neglect” still seems relative and changeable. The term, “neglected tropical diseases” (NTDs), has undoubtedly focused attention, but the gains from disease-specific, vertical programmes have been fragmented. In every country, difficult decisions must be made when resources are limited. At what point does a disease become neglected and who decides?

Neglect of health issues occurs at various levels. There is lack of attention and/or awareness, whether by the public, health professionals, or politicians. Patients may ignore their own condition. Funding for research or health services for certain diseases may be inadequate. Funded researchers may not address the most pressing healthcare challenges. And available treatment options may be overlooked. Neglect at any of these levels has a negative impact on individuals and populations. HIV/AIDS was considered an NTD and early in the epidemic, neglect was occurring at several levels. Development of its own dedicated specialised arm of the United Nations (UNAIDS), billions spent by public and private sectors, and improvements in translational research and health outcomes mean it is no longer an NTD. What is the level of attention and resource below which diseases are “neglected”?  

The frameworks of evidence-based medicine, value-based healthcare and global health are all striving to place individuals with disease at their heart (“patient-centred”) rather than their diseases, which allows for more nuanced assessment of neglect. GBD data reflect actual mortality or morbidity and, in combination with funding and healthcare utilisation, could provide the best estimates of neglect. In the end, it is the individuals or groups of individuals who are neglected and whose voice must be heard above disease-centred voices, if clinicians and policymakers are to use resources effectively. The need and the neglect vary by country and within country.

Cardiovascular disease (CVD) has high rates of research funding, but not in poorer countries. Even after data from the GBD study showed conclusively that the “diseases of affluence” paradigm is flawed and that NCDs cause more morbidity and mortality than communicable diseases in almost every country in the world, prior assumptions and prejudices have persisted. There is a widespread belief that NCDs are well served by funding for research or healthcare, even though barely any of this funding has historically been spent on the countries where the need is greatest. The important question is whether individuals with or at risk of disease are neglected, which avoids the conflict of interest of researchers, healthcare professionals, and politicians.

The human right to health is embodied in several international treaties. Human rights arguments have been used successfully in HIV/AIDS and maternal health to support access to treatment, but all individuals have the right to basic healthcare and no disease should trump another from an ethical point of view. A more standardised definition of “neglect” is required in healthcare with better tracking of resources and effects of funding and intervention, so that clinicians and researchers can optimise use of strained resources. If we are to stay focused on “neglected diseases” then there needs to be appreciation that diseases can become more or less neglected over time, and philosophically, the most neglected people and diseases are those that we do not know about or hear about (“unknown unknowns”). Most importantly, in addition to the legal and scientific constructs, an emphasis on neglected individuals rather than diseases may be the most powerful vehicle to enact system change.

Amitava Banerjee is senior clinical lecturer in Clinical Data Science and Honorary Consultant Cardiologist at University College London. He is particularly interested the application of health informatics to improving patient care and is active in research, teaching and clinical practice.

Competing interests: None declared.