It can be tough getting the public to pay attention to a disease, especially when it’s as long as pneumonoultramicroscopicsilicovolcanoconiosis, or as hard to pronounce as onchocerciasis.
In a bid to make the names of diseases more relatable, scientists and — more frequently — the media, get creative, linking the disease to either the place where it was discovered (or at least where it became prominent), or to its common source — sometimes also using abbreviations.
In other instances, scientists name the disease after themselves, or the authorities do that on their behalf.
The practice is effective. Now we know diseases like African sleeping sickness, SARS and malaria, although whether people’s understanding of them is accurate or not is another matter.
African sleeping sickness — or African trypanosomiasis — shouldn’t be taken lightly. It reportedly affects sufferers in 36 sub-Saharan countries, and is difficult to diagnose and treat. Infected patients’ symptoms include a mix of fever, headaches, joint pains and itching. At a later stage, they can experience confusion, behavioral changes, neurological issues and sleep disturbance.
Malaria, meanwhile, is an ancient disease that continues to affect millions and kill thousands of people worldwide, particularly in Africa, where a child dies every minute from the disease, according to the World Health Organization.
Far from its name, however, malaria is not caused by “bad air,” as it suggests in Italian, but by bites of infected Anopheles mosquitoes that breed in shallow waters.
Such misunderstandings can lead to wrong preventative measures or treatments. And sometimes, it can lead to “unintended negative impacts” to people, communities or create economic and social impacts, WHO warned recently.
So the health agency — in collaboration with the World Organization for Animal Health and the U.N. Food and Agriculture Organization and in consultation with experts from the International Classification of Diseases — developed a new best practices guidance in naming future human infectious diseases, recommending that stakeholders avoid linking diseases to places, animal species or food, culture, profession or a specific type of population.
The guidance also suggests veering away from adding fear-inducing adjectives to diseases (for example, pandemic) and in naming diseases after real people. The last bit has been discussed widely in literature, noting some names can be problematic as they can refer to a scientist that participated in medical experimentations in concentration camps during World War II, give credit to the wrong person, or fail to communicate what the disease is all about.
“This may seem like a trivial issue to some, but disease names really do matter to the people who are directly affected. We’ve seen certain disease names provoke a backlash against members of particular religious or ethnic communities, create unjustified barriers to travel, commerce and trade, and trigger needless slaughtering of food animals. This can have serious consequences for people’s lives and livelihoods,” WHO Assistant Director-General for Health Security Dr. Keiji Fukuda said in a statement.
Below, we list some human infectious disease names that produced some form of negative consequences due to stigma. Some are new, while others date back decades:
Not many can relate to influenza H1N1 but call it swine flu, and people would start backing away from pigs.
While the term is descriptive — viruses found are similar to those found in pigs — authorities in public health insist it’s not established that human transmission directly come from pigs. In fact, the 2009 pandemic was a result of human-to-human transmission.
Nevertheless, it led to needless mass slaughtering of pigs, with thousands killed in Egypt. Changes in some consumers’ behaviors out of fear of contracting the virus also led to a decline in pork consumption, and therefore, pork sales. Some countries restricted pork imports, especially those coming from countries known to have reported the virus.
Because of its similarities to the severe acute respiratory syndrome, the virus spreading in the Middle East that is currently under watch by WHO and public health authorities was initially called Saudi SARS, alluding to the place where it was first discovered.
But after further investigations and due to stigma concerns, the Coronavirus Study Group of the International Committee on the Taxonomy of Viruses changed the name to Middle East respiratory syndrome coronavirus or MERS-CoV, after reportedly broad consultations with different stakeholders.
But there remain concerns with the new name; some fear it will have a huge impact on the region’s tourism industry, which is already somewhat hurt by instability and terrorist attacks in some parts of the region. Even WHO, which is using the term, used it as an example in the list of names stakeholders need to avoid in the future.
Today, the prevalence of HIV remains the highest among people who inject drugs, sex workers, transgender individuals, homosexuals and men who have sex with men. Much of the reason is that these populations also have the least access to prevention and treatment.
In some countries, it relates to social stigma, which dates back decades, when knowledge of the disease was so limited and authorities assumed it was exclusive to the homosexual community, referring to it as GRIDS or gay-related immunodeficiency disease or gay cancer.
The name was eventually changed to AIDS in mid-1982, when more cases started coming up, and not all of it are linked to homosexuals. However, to this day, that initial stigma stuck. In some countries, laws supposedly aimed at curbing the spread of AIDS are punishing gay activities.
In 1976, several American veterans that attended an American Legion convention at Bellevue-Stratford Hotel in Philadelphia started getting ill with flu-like symptoms. It was not until a few have died that some of their colleagues took notice, and authorities were alerted.
The disease was not new; in fact, there have been similar outbreaks before of such kind, in other parts of the country and outside United States. But it was the first time the causative agent was properly identified — a rod-shaped bacterium that causes a fatal respiratory disease if left untreated — thus the name Legionnaire’s disease. Later, it was found out that the disease was treatable with simple antibiotic.
But in the six months of the investigations, members of the group suffered stigma. Some members reported instances when people would stay away from them in public places, according to a report in the Milwaukee Journal in 1986. The hotel also shut down even before the mystery was solved, because of low occupancy rate. It later reopened, but closed again in 1986.
It’s actually E. coli contamination found in ground meat. But outbreaks in the United States in the 1980s and 1990s traced the bacterium to undercooked beef patties sold in fast food chains like McDonald’s and Jack in the Box, although it was the latter’s case that really put the safety of hamburgers under the spotlight.
The discovery led to the company recalling all ground beef that was linked to the outbreak. But it also led the U.S. government to impose changes to the process of inspecting meat sold in public. A mandatory system was also put in place in terms of food handling and processing.
While the impact led to better handling of beef products, and conscious efforts of restaurants to properly cook their beef patties, the condition is not limited to burger meat alone. It can be found in items such as those used in salads like lettuce and alfalfa sprouts, and unpasteurized milk.
Do you know of other diseases whose ill-fitting names had repercussions, including stigma? Let us know by leaving a comment below.
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Jenny Lei Ravelo is a Devex senior reporter based in Manila. Since 2011, she has covered a wide range of development and humanitarian aid issues, from leadership and policy changes at DfID to the logistical and security impediments faced by international and local aid responders in disaster-prone and conflict-affected countries in Africa and Asia. Her interests include global health and the analysis of aid challenges and trends in sub-Saharan Africa.
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