The pharma marketing world has unique insight into how words play into their world: Many months and many dollars are spent sculpting and perfecting the right word for a new drug, one that speaks to doctors and patients while remaining within the confines of promotional barriers.
But language goes beyond the brand. In the world of health, how the media, doctors and patients name a disease, condition or disorder matters. That importance was not always recognized, but awareness is now on the rise.
One of the more recent examples was during the 2022 outbreak of what was then called monkeypox, an infectious disease that predominantly impacted the LGBTQ+ community and could cause painful, pus-filled rashes and, in some cases, prove fatal.
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 long before 2015, when the World Health Organization (WHO) published best practices in naming diseases, which aim to minimize the unnecessary negative impact of names on animal welfare and avoid offending any ethnic, social, national and regional groups, among other goals.
There was a twofold problem with the name monkeypox. First, it reinforced a xenophobic association with West and Central Africa, where the disease has long been endemic, despite the fact that outbreaks can spread globally and are not limited to one region. The name also invited misleading and racist imagery, with some public discussion tying the virus to monkeys or African countries in ways that fueled blame rather than understanding.
Second, during the 2022 outbreak, the disease disproportionately affected men who have sex with men. That meant the name carried a second layer of stigma: It became attached not only to a region, but also to a community already subject to discrimination. Public health officials worried that the combination could discourage people from seeking testing, treatment or vaccination.
The WHO changed the name from monkeypox to mpox in 2022, after concerns that the original name was fueling racist and stigmatizing language. The renaming was one part of a broader effort to reduce barriers to testing, treatment and vaccination.
Reframing outdated terminology
One area of continuing debate in the language of disease is obesity, specifically the use of body mass index, or BMI, as a standard measurement tool that “defines” the parameters of the disease.
Speaking to Fierce Pharma Marketing, Sommer Bazuro, Ph.D., chief medical officer at Omnicom Health, said obesity is a complex, multifaceted condition often accompanied by comorbidities, and assessing it simply as a BMI number fails to capture that context.
“This doesn’t need just a name change, but a major reframing,” she explained, referring to obesity’s status as a BMI-defined “weight category.” “Rather, we need to move toward obesity being a chronic, biologically complex disease. Diagnosis and treatment need to be seen as a full picture of health impact, not just on body state alone.”
There is also growing discussion of “clinical obesity” and, more recently, “preclinical obesity,” Bazuro said. Those terms take into account elements such as health impact, moving beyond BMI alone.
“So, if you look at the old framing as obesity being weight and BMI-based, you risk overdiagnosing some people and underdiagnosing others. But with the new framing, it aims to better find who has a disease, and who is at risk and who would need treatment right now.”
The idea, Bazuro said, is also to reduce stigma and blame around the disease, which can exacerbate the mental health challenges associated with obesity and keep people from seeking diagnosis and treatment.
Pharma is at the forefront of this language shift. “[The pharma industry] does not want their medicines to be referred to as a ‘skinny pill,’” Bazuro said, referencing many media outlets’ use of the term for new GLP-1 obesity drugs.
“And pharma also faces incredible access hurdles. So, if you frame something as a non-disease but rather as a self-infliction; essentially, patient blaming, then it’s easy to shirk coverage. But when you frame it for what it is, a disease, then the whole healthcare ecosystem must approach it in that way.”
A similar debate came into the spotlight with the recent name change for polycystic ovary syndrome, or PCOS, which is now known as polyendocrine metabolic ovarian syndrome, or PMOS.
The change garnered significant media attention when it happened in May, much more than is typical for these types of changes.
“The main reason for this change is because the former name was misleading,” Bazuro said. “People thought the condition was defined by ovarian cysts, but that is not required for diagnosis. The older name is centered on the ovaries, but the condition involves other areas, including fertility issues and mental health issues.”
She said the old framing recognizes only one area of the disease and can lead to “fragmented care.”
Fitzpatrick scale
A major problem with language is that it can become embedded in accepted science, even when the terms and points of reference are outdated.
That is the case with the Fitzpatrick scale, a numerical classification system first created in 1975 to estimate how different human skin types respond to ultraviolet, or UV, light. The scale was developed specifically to assess burning and tanning risk.
“It was never meant to classify skin color, race, ethnicity or the range of pigmentation,” Bazuro said, but it “has become used as a proxy for all those things in dermatology and even in clinical trials, medical education and even AI datasets.”
This has “major limitations,” she said, as “you have six categories and at the polar ends you have white skin and black skin—which in science there is no such thing. Those are sociological terms that we use in our colloquial language.”
She said the scale is also used as a proxy for race and ethnicity and it “compresses the use of black skin into smaller categories and it treats skin of color as a broad catch-all. There are many people in the world who have a darker skin color but would not consider themselves 'black' as we describe it colloquially. This makes things confusing in so many ways.”
New scales are being proposed to address those limitations by broadening and more scientifically defining skin tones to create pigmentation language that is more useful and accurate.
That matters because skin cancer risk can vary widely, as can where and how skin cancer appears. The same is true for dermatological conditions such as psoriasis or eczema, which can present differently on darker skin than on lighter skin. “It does not look the same,” Bazuro said, and that can lead to delayed diagnoses.