Why Disease Names Matter: Balancing Science with Social Impact

Protecting the public health of communities from the threats and risks of disease has always been an important function of the Environmental Health profession and is increasingly a risk managed by Risk and Health and Safety professionals inside organisations. We were at the very centre of this in different ways during the pandemic in 2020. The news is currently covering stories in respect of “Mpox” previously identified as “Monkeypox” . This got me thinking about how diseases are named and to consider does the name matter?

The Shift from "Monkeypox" to "Mpox"

Mpox or monkeypox is a zoonotic virus which can spread between animals and humans. It was first identified in monkeys back in the 1950s. As time has gone on, the name "monkeypox" began causing issues. It contributed to the stigmatization of certain communities, especially in Africa, and created a misconception the disease was only linked to monkeys, despite many other animals being potential carriers.

In response to these issues, the WHO and public health experts pushed for the renaming of the disease to "Mpox" in 2022. The goal was to reduce the stigma and misinformation surrounding the disease. The UK Labour government supported this move, acknowledging that the name "monkeypox" had become a source of unnecessary fear and discrimination. By renaming the disease to "Mpox," the focus shifted from the misleading animal association to a more neutral, scientifically accurate term.

When it comes to naming diseases, it's more than just a scientific label—it's about shaping how the world sees, understands, and reacts to an illness. The name of a disease can stir up fear, stigma, or even confusion, affecting not only how people respond to it but also how they interact with those affected and comply with public health measures. In our hyper-connected world, where news and information spreads like wildfire across social media, the impact of a disease name is amplified. Once a name sticks in the public's mind, it can be tough to change, even if it's misleading or harmful.

The Importance of Thoughtful Disease Naming

The World Health Organization (WHO) understands how crucial it is to name diseases carefully. In 2015, they released guidelines to ensure that disease names are not just scientifically accurate but also socially responsible. This is vital because the words we use and how we communicate can influence how society treats individuals, communities, or even entire regions associated with a disease.

Take, for example, names like "Spanish flu" or "Middle East Respiratory Syndrome (MERS)." These labels can lead to prejudice and discrimination against people from those areas. Similarly, calling H1N1 "swine flu" caused unnecessary panic around pigs and pork products, damaging the farming industry. These examples highlight why it's so essential to choose names that are neutral and descriptive rather than emotionally charged or potentially misleading.

Principles for Naming Diseases: Getting It Right

To avoid the pitfalls of miscommunication and disinformation, WHO’s guidelines offer a set of principles for naming diseases:

1. Generic Descriptive Terms: Early in a disease's discovery, when information is limited, it's best to use broad terms like "respiratory disease" or "neurologic syndrome." These are unlikely to change as more is learned about the disease, preventing the premature attachment of a specific, potentially misleading name.
2. Specific Descriptive Terms: As more is understood about the disease, more specific terms should be used, but they should remain clear and accessible. Terms like "progressive" or "severe" are helpful without being overly technical.
3. Inclusion of the Causative Pathogen: When the cause of the disease is known, it should be included in the name, along with descriptors. For example, "novel coronavirus respiratory syndrome" clearly identifies both the pathogen and the illness without confusing the issue.
4. Short and Pronounceable Names: Names should be concise and easy to say. This helps with communication and prevents the creation of stigmatizing or misleading nicknames. Names like "rabies" or "polio" are effective because they are both short and widely understood.
5. Careful Evaluation of Acronyms: Since longer names are often shortened into acronyms, these need to be checked for any potential negative meanings or associations.
6. Consistency with International Standards: Disease names should align with the International Classification of Diseases (ICD) guidelines, ensuring that they’re recognized and understood globally.

How the Final Name is Decided

The final name for any new human disease is assigned by the International Classification of Diseases (ICD), which is managed by WHO. The ICD is a globally recognized system used by doctors, nurses, researchers, health information managers, policymakers, and others to classify diseases and health problems in a standardized way. This system is crucial for recording health information on medical records and death certificates, ensuring consistent data collection and reporting worldwide.

The ICD’s standardized approach also allows WHO Member States to compile national mortality and morbidity statistics, which are essential for tracking public health trends and making informed decisions about resource allocation. Moreover, the ICD system is used for reimbursement processes and resource allocation decisions by countries, making it a key tool in global health management.

This thorough process ensures that the disease name is not only scientifically accurate but also in line with global health standards, facilitating clear communication and effective disease management across borders.

The Role of Media and Public Health Professionals

In today’s fast-paced information age, the role of media and public health professionals in naming diseases is more important than ever. Those who first report on a newly identified disease have a significant influence on how it will be perceived. It is crucial they follow WHO’s guidelines to ensure the name is both scientifically accurate and socially responsible.

The consequences of careless or sensational naming can be significant. A name that incites fear or promotes discrimination can derail public health efforts, as seen in past outbreaks where certain communities were unfairly stigmatized. Conversely, a well-considered name will help communicate risks effectively and encourage the public to adopt the positive health behaviours.

Real-World Impacts: Lessons from the Past

The real-world consequences of disease naming are well-documented. During the H1N1 influenza outbreak in 2009, the name "swine flu" caused a massive drop in pork sales, even though the virus was not transmitted through eating pork. As reported by the BBC, this led to significant economic losses for pig farmers and widespread public confusion.

Similarly, during the Ebola outbreak, the name alone sparked fear and stigma, particularly against African communities. The BBC highlighted an incident where a passenger with a nosebleed was avoided on a London bus simply because of the association with Ebola, despite there being no real risk. These examples highlight the importance of names which will not cause unnecessary fear or harm. Names should inform and educate, not mislead or stigmatize.

The UK Government’s Response to Mpox

Regarding MPox, the UK government, through the UK Health Security Agency (UKHSA), took a proactive approach in managing the public health response while carefully considering the implications of the disease’s name. Dr. Meera Chand, Deputy Director at UKHSA, emphasized the importance of preparedness and clear communication, stating:

"The risk to the UK population is currently considered low. However, planning is underway to prepare for any cases we might see in the UK. This includes ensuring clinicians are aware and able to recognize cases promptly, that rapid testing is available, and protocols are developed for the safe clinical care of people who have the infection and the prevention of onward transmission."

This approach highlights the UK government’s commitment to maintaining public trust and minimizing fear, while ensuring that healthcare systems are ready to respond effectively. The decision to rename the disease to "Mpox" reflects a dedication to managing public perception responsibly and preventing unnecessary stigma.

Conclusion: Why a Name Matters

Naming diseases is a delicate task that requires balancing scientific accuracy with social sensitivity. Once a disease name becomes part of everyday language, it shapes how people perceive and respond to the illness, often in ways that are hard to reverse. That’s why it’s crucial for those responsible for naming diseases—whether scientists, public health officials, or journalists—to carefully consider the potential impacts.

By following WHO’s 2015 guidelines and the comprehensive processes established by the ICD, we can ensure that disease names are both scientifically sound and socially acceptable, reducing the risks of miscommunication and disinformation. In an age where misinformation can spread as fast as a virus, the importance of thoughtful and responsible disease naming cannot be overstated.

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