Friedman says has been forced to change how he talks to patients when he needs to prescribe hydroxychloroquine. “I’ve now worked into my scripting: ‘Hey, I want to start you on this medicine. You may have heard about it related to covid, that it was being used as a cure and it’s not,’” he says. “It got a lot of negative press. However, in dermatology we’ve been using it for decades for these different things.”
To understand the extent to which this confusion might also be ivermectin’s future, I went to r/Rosacea, the subreddit for advice on dealing with the chronic condition.
Categorically different
People with rosacea know ivermectin not as an unproven covid drug, but as a proven and effective treatment that helps some people with a type of rosacea that causes bumps on the skin. On the subreddit, one user was confused by the sudden influx of attention, asking: “Why are ivermectin memes popping up everywhere right now? And how does the mainstream know what it is?”
For people on the subreddit, ivermectin is a pretty persistent topic of discussion. There’s an expensive topical cream called Soolantra that contains the drug, and a generic version was released this summer. But a subset of those users also knew that the same drug was in horse paste, because some people diagnosed with rosacea have also bought the veterinary form—usually because they can’t otherwise get access to the creams or can’t afford a prescription.
This practice is controversial among people with rosacea, and dermatologists have raised concerns about experimenting with a product that contains an inappropriate dosage or untested ingredients with potentially adverse effects. However, Feinstein says, a person with rosacea turning to horse paste for cost reasons is in a categorically different medical and ethical universe from the one in which people are eating horse paste to “cure” covid. For diagnosed rosacea patients who need ivermectin to control the condition, Feinstein says, “unfortunately, the best medication is the one patients can get.”
People who use Soolantra or the generic version of ivermectin topically are, as of right now, unlikely to be encountering shortages, says Feinstein. There are reports of farm supply stores running short on horse paste, however. In addition to some practical issues of access—while reporting this story, I spoke to one person who had to purchase horse paste from the UK in order to treat mites on his pet rats a few weeks ago—there’s now an added layer of scrutiny and stigma. How do you explain that you use horse paste on yourself, but not like that?
“Attached to this oversimplified idea”
The subreddit’s moderators were already pretty familiar with misinformation about ivermectin.
“We’ve seen some pretty crazy things, like people recommending wearing flea collars or using pesticides on their face.”
Ryan, a moderator on the r/rosacea forum
People use the site, like many online communities, to discuss and trade information based on their experience: for example, discussing the best facial cleansers, asking how to avoid triggering a flare-up, or sharing how their treatment is progressing over time. But they can also incubate and promote misinformation, which moderators have to monitor and remove.
Although there are some Facebook groups that promote horse paste for those with rosacea, the r/Rosacea subreddit neither encourages nor bans discussion of its use. One moderator told me the biggest risk is that people will self-diagnose with rosacea and decide to treat themselves with a DIY version of a medication that, even in a form intended for use by humans, should only be used with the guidance of a physician.
Not all rosacea is the same, however, and the reasons ivermectin might work for some is still a subject of scientific debate.
There is a connection between rosacea and demodex mites, which live in the hair follicles on more or less everyone’s face. in people with any form of rosacea, those mites are there in excess. But the exact relationship isn’t clear. “The question is chicken or egg,” Friedman says. Are people with rosacea ideal environments for demodex mites to live in excess, or “or is it this overgrowth that then exacerbates rosacea?”
That uncertainty has led to some pretty dangerous suggestions online, said Ryan, a Reddit moderator who asked that I withhold his last name.
“People get attracted and attached to this oversimplified idea that if they just kill the mites, their rosacea and their problems will go away,” he said. “We’ve even seen some pretty crazy things, like people recommending wearing flea collars or using pesticides on their face.”
Data voids and poisoned wells
Online peddlers of misinformation often exploit a data void, telling people to search for specific terms that they know will lead to results that promote what they’re trying to say. At worst, as the misinformation researcher Renee DiResta has written in the past, the top results can end up coming entirely from people who believe in and promote the misinformation.