The world of pharmaceutical marketing has unique insight into how words impact that world. Many months and large sums of money are spent creating and perfecting the right words for a new drug. Words that speak to doctors and patients while remaining within the promotional barrier.
But language goes beyond branding. In the world of health, it matters how the media, doctors, and patients name diseases, symptoms, and disorders. Its importance was not always recognized, but is now being recognized.
One of the more recent examples was in 2022 during an outbreak of the infectious disease then called monkeypox. This infection primarily affects the LGBTQ+ community and causes a painful, purulent rash that can lead to death.
The virus that causes the disease was first discovered in captive monkeys in 1958, and human monkeypox was given its name in 1970. That was well before 2015, when the World Health Organization (WHO) published best practices for naming diseases, with the aim of minimizing unnecessary negative impacts of names on animal welfare and avoiding offending ethnic, social, national or regional groups.
The problem with the name monkeypox was twofold. First, it strengthened the xenophobic relationship between West and Central Africa, where the disease has long been endemic, even though the outbreak is not confined to one region and can spread globally. The name also gave rise to misleading and racist images, and there was public debate linking the virus to monkeys and African countries in a way that fueled more condemnation than understanding.
Second, during the 2022 outbreak, the disease disproportionately affected men who have sex with men. That meant the name carried a second-tier stigma. The name became associated not only with the region, but also with communities already subject to discrimination. Public health officials feared the combination could discourage people from seeking testing, treatment and vaccination.
The WHO changed the name from monkeypox to mpox in 2022 after concerns that the original name promoted racist and derogatory language. The name change was part of a broader effort to reduce barriers to testing, treatment and vaccination.
Reinventing outdated terminology
One area of continued debate in the language of disease is obesity, particularly the use of body mass index (BMI) as a standard measurement tool to “define” disease parameters.
In an interview with Fierce Pharma Marketing, Dr. Sommer Bazlo, chief medical officer at Omnicom Health, said that obesity is a complex and multifaceted condition that is often accompanied by comorbidities, and that simply evaluating it as a BMI number does not capture its context.
“This requires a major overhaul, not just a name change,” she explained, referring to obesity’s status as a “weight category” as defined by BMI. “Rather, we need to move towards the idea that obesity is a biologically complex chronic disease. Diagnosis and treatment need to look at the overall health impact, rather than just considering the physical condition.”
There’s also a growing discussion of “clinical obesity” and, more recently, “preclinical obesity,” Bazuro said. These terms go beyond just BMI and take into account factors such as health impacts.
“So if we look at the old framework that obesity is based on weight and BMI, we risk overdiagnosing some people and underdiagnosing others. But the new framework aims to better discover who has the disease, who is at risk, and who needs immediate treatment.”
The idea is also to reduce the stigma and stigma surrounding the disease, which can exacerbate the mental health problems associated with obesity and prevent people from seeking diagnosis and treatment, Buzzro said.
Pharmaceutical companies are at the forefront of this language shift. “(The pharmaceutical industry) doesn’t want its drugs to be called ‘slimming drugs,'” Buzzro said, noting that many media outlets are using the term for new GLP-1 obesity drugs.
“And the pharmaceutical industry also faces incredible access hurdles. So when you frame something as self-inflicted rather than a disease, it’s essentially the patient’s fault and it’s easy to avoid reporting. But when you frame it as a disease, the entire healthcare ecosystem has to approach it that way.”
A similar debate recently came to the fore with the renaming of polycystic ovary syndrome (PCOS), also known as polyendocrine metabolic ovary syndrome (PMOS).
When this change occurred in May, it received far more media attention than usual for a change of this kind.
“The main reason for this change is that the previous name was misleading,” Bazuro said. “People thought the condition was defined by ovarian cysts, but that’s not necessary for diagnosis. Although the old name focuses on the ovaries, the condition has implications for other areas, such as fertility issues and mental health issues.”
She said the old framework recognized only one area of the disease and could lead to “fragmented care”.
fitzpatrick scale
A big problem with language is that even outdated terms and reference points can become incorporated into accepted science.
This is the case with the Fitzpatrick scale, a numerical classification system first created in 1975 to estimate how different human skin types react to UV radiation. This scale was specifically developed to assess the risk of burns and sunburn.
“It was never intended to classify skin color, race, ethnicity, or pigmentation ranges,” Bazuro said, “but it has become used as a proxy for all of these things in dermatology, and even in clinical trials, medical education, and even AI datasets.”
This has “significant limitations,” she says. “There are six categories, and at the extremes there is white skin and dark skin, but there is no such thing in science. These are sociological terms that we use colloquially.”
He said the scale has also been used as a proxy for race and ethnicity, “compressing the use of black skin into a smaller category and treating the skin of people of color as a broad umbrella. There are many people in the world who have darker skin tones but don’t consider themselves ‘black’ in the colloquial sense. This confuses things in so many ways.”
A new scale is proposed to address these limitations by expanding and more scientifically defining skin tone to create a more useful and accurate pigmentation language.
This is important because the risk of skin cancer can vary greatly depending on where and how the skin cancer occurs. The same is true for skin conditions such as psoriasis and eczema, where symptoms may differ for darker and lighter skin. “They don’t look the same,” Bazullo said, which can lead to delays in diagnosis.
