There has always been a huge amount of misinformation surrounding health. From the ancient notion that many diseases were caused by “bad blood,” to traveling medicine shows that employed the same sales tactics used by carnival barkers, humans are eager to improve their wellness and alleviate their illnesses, and there have always been charlatans lining up to take advantage. For example, the term “snake oil” is used to describe any worthless product purported to have immense value by deceptive marketing. But about a hundred years ago, snake oil was big business, according to Dan Hurley:
“American consumers could buy Tex Bailey’s Rattle Snake Oil (made not in Texas but in Troy, N.Y.); Tex Allen’s Rattlesnake Essential Oil Compound, recommended for “rheumatic pains, back pain, strains, sprains, bruises, sores, aching feet, stiff joints, sore muscles, throat irritation, headache, earache, and more” (manufactured in Newark, N.J.); Rattlesnake Bill’s Liniment, “made from the fat of a real diamondback rattlesnake” (manufactured in exotic Belleville, N.J.); the Great Yaquis Snake-Oil Liniment; Blackhawks Indian Liniment Oil; Monster Brand Snake Oil; and Mack Mahon the Rattle Snake Oil King’s Liniment for Rheumatism and Catarrh.”
Tackling the validity of these claims would require a blog post unto itself.
It’s difficult to say whether or not there are more or less options today when it comes to questionable remedies, but one thing is for sure—there is a lot more misinformation
The coronavirus outbreak has brought with it a spread of misinformation that the World Health Organization has coined an “infodemic.” They define this as, “an over-abundance of information—some accurate and some not—that makes is hard for people to find trustworthy sources and reliable guidance when they need it.” It is a timely example of something that happens all too often— scammers exploiting people in a time of need. When we are faced with a disorder, we are often desperate for a cure, and this makes us vulnerable to misinformation.
Fearmongering can be an effective marketing technique. Shortages for items like face masks and hand sanitizer create a lucrative seller’s market. Facebook is closely monitoring deceptive ads and Amazon has pulled more than a million products because the seller was price gouging or falsely advertising the benefits of the product.
“Since January 2020, based on Check Point Threat Intelligence, there have been over 4,000 coronavirus-related domains registered globally. Out of these websites, 3% were found to be malicious and an additional 5% are suspicious. Coronavirus- related domains are 50% more likely to be malicious than other domains registered at the same period.”
The Corona Virus is a perfect storm for this onslaught of misinformation. The virus has spread to over 100 countries and territories and has been deemed a pandemic. Huge populations around the world are absorbing news about the illness. They want to know where it is, how it spreads, how to prevent it, and how to cure it. A lot is being said, but not a lot is being understood. In the course of listening to hours of coverage, you’re bound to hear maybes. In a 24-hour news cycle world, many sources don’t let a lack of concrete information prevent them from reporting on a subject.
People in the rare disease space are no strangers to misinformation. As patients, caregivers, and stakeholders, many of us have dealt with misdiagnosis and the consequences of ignorance. We need to make the most of our experiences by sharing our stories, combating misinformation, sand championing the empirical truth—even when there isn’t much to go around.