‘FRAIDS’ to AIDS, monkeypox to ‘mpox’: Why changing the names of diseases became important

The World Health Organization on November 28 decided to rename monkeypox as “mpox”, a change long overdue. This is not the first time that the World Health Organization or governments have had to change the name of the disease.

Leprosy, one of the oldest diseases known to humankind, is a good example. For hundreds of years, leprosy, known by that name, had no cure and no one knew what caused it. It was only in 1873 that Norwegian scientist Gerhard-Henrik Armauer Hansen discovered the slow-growing bacterium, Mycobacterium leprae, that caused leprosy. Much later, governments and institutions decided to refer to it as “Hansen’s disease”.

India, which has the largest number of leprosy patients, replaced the pejorative and loaded term “kodh” with “kusht”, a new and neutral name in the early 1950s. The country’s eradication programme, launched in the 1954-’55, was named Kusht Unmoolan Karyakaram. There is no clear year or date when kodh became kusht (for example, the Hindi media continues to call leprosy, kusht and kodh interchangeably).

The United States refers to its own initiative as the National Hansen’s Disease (Leprosy) Program. The change of name helped destigmatise the disease as well as those suffering from it.

HIV/AIDS, or the human immunodeficiency virus that caused the acquired immunodeficiency syndrome, has an interesting naming history too. In the early 1980s, it was referred to as the “4H disease” by the United States Centers for Disease Control and Prevention. The four Hs stood for Haitians, homosexuals, haemophiliacs and heroin. In 1982, the disease acquired another name, GRID – Gay-related Immunodeficiency. Others called it “FRAIDS”. HIV-AIDS was not only technically appropriate but also less threatening.

Leprosy and AIDS share common characteristics: they are both stigmatising diseases. Both have a long incubation period, their aetiology, or cause, was inexactly understood, and both lead to panic and fear. In both cases, the occurrence of disease is attributed to, among other things, nature’s revenge, divine retribution, or immoral behaviour.

Patients share many common psychosocial characteristics. In both, they face desertion by family, discrimination, the inevitable prospect of physical decline resulting in loss of attractiveness and the possibility of infecting others leading to demands for isolation.

Monkeypox was renamed Mpox for precisely this reason. As the number of cases increased across continents, monkeypox no longer remained a health condition. In some quarters, its emergence in African countries perceived as being backward, resulted in the disease acquiring racist overtones.

In Europe, with several cases being detected among homosexual men, the stigma against patients was accentuated. The advice of the Centers for Disease Control to gay and bisexual men to be careful ended up being misunderstood. Well-meaning experts and others had to clarify that it was not sexual intimacy, but close contact with patients that was responsible for transmission.

The British Association for Sexual Health and HIV also expressed concern about the impact on its sexual health services. According to the American daily Politico, the US administration asked the World Health Organization to change the name or it would unilaterally do so.

A group of scientists wrote in a joint statement published in June: “In the context of the current global outbreak, continued reference to, and nomenclature of this virus being African is not only inaccurate but is also discriminatory and stigmatizing.” Following deliberations, the World Health Organization changed the name to Mpox.

Curbing stigma against patients was one reason for the name change. The other was to disassociate the place of occurrence of the disease from the disease itself. Hence, what was once called Mexican swine flu was changed to H1N1. The Spanish flu bore no relation to Spain, but the name has stuck (the Spaniards called it “French flu”).

Similarly, the virulent Marburg virus bears no relationship to Germany while the West Nile virus is found in countries outside the African continent. Because the two diseases have been closely identified by their name for long, health authorities are hesitant to make changes now.

Similarly, “German measles” is a misnomer. It came to be associated with the country because it was first described as a separate disease in German medical literature (it is now called rubella). However, the US renamed it “liberty measles”, using the disease as a propaganda tool against Germany during World War I.

In 2011, the Middle East Respiratory Syndrome-related Coronavirus, or MERS, was first detected in a Saudi Arabian patient. Saudi Arabian authorities did not want “Middle East” to be associated with the disease. It was then renamed HCoV-EMC for human coronavirus Erasmus MC.

But Saudi leaders were not happy and the disease was finally named MERS-CoV. The World Health Organization approved the name, but added, “WHO generally prefers that virus names do not refer to the region or place of the initial detection.”

More recently, former US President Donald Trump insisted on doing exactly what the World Health Organization advised against by repeatedly calling Covid-19 the “China virus” following the outbreak in December 2019 that spread across the world.

The Covid-19 pandemic led to instances of abuse against the Chinese and others from South East Asia in the United States and other parts of the world. In Pakistan, some referred to Covid-19 as the “Shia virus”, blaming the spread on pilgrims returning from Iran and deepening the rift between the two Muslim communities.

Connecting diseases to people is one of the many ways that conspiracy theories emerge. Instead, naming it SARS-CoV-2 and Covid-19 indicates the genetic similarity to the virus that causes the Severe Acute Respiratory Syndrome, or SARS, and also enables researchers to develop appropriate diagnostics and tests.

India, too, has objected to any disease being called by the country’s name. In 2008, a Swedish man who returned from India was found to be infected by a new drug-resistant bacterial superbug. The enzyme that made the bacteria resistant to a broad range of antibiotics was named New Delhi metallo-lactamase-1, or NDM-1, and its related gene blaNDM-1.

In March 2010, a study in a hospital in Mumbai found that bacteria isolated from patients carried the same novel gene. The same year, The Lancet reported that the gene had originated in India. The bacteria being referred to as New Delhi metallo-lactamase-1, or NDM-1, prompted angry reactions with the health ministry stating that Indian hospitals are safe for treatment. However, NDM-1 continues to be widely used.

In 2015, the World Health Organization issued a new set of guidelines to name diseases without locating the place of their origin. But by this time, the social media revolution had spread and “viral” names created online had become socially acceptable.

Pradeep Krishnatray is former director of Research at Johns Hopkins Center for Communication Programs, India. He currently teaches at IFHE University in Hyderabad.