By Jennifer Reich
Washington - The family of Randy Clouse, a 61-year-old Auburn, man who has been on a ventilator for almost four weeks, asked a judge last month to order the hospital caring for Clouse to give him ivermectin, an anti-parasitic drug that has not been shown to help those infected with SARS-CoV-2, the virus that causes Covid-19.
As his attorney told a local TV station, "They've given him remdesivir, they've given steroids. That's their protocol, they're done with the protocol. We've asked the court to allow ivermectin." A different court in Ohio ruled last week that a hospital there had to give the drug to Jeffrey Smith after his wife sued to allow the treatment.
Ivermectin has become the latest ground on which the battle between scientific process and misinformation is being fought.
Despite consensus that there is inadequate evidence that it can cure Covid and may be dangerous to the person taking it, this anti-parasite and deworming medication, like hydroxychloroquine before it, has been embraced by those who are most suspicious of vaccines and Food and Drug Administration-approved remedies.
Doctors who refuse to distribute these unproven medications for the virus - who follow protocols that draw on medications with demonstrated efficacy - are widely viewed with suspicion by believers.
How have unapproved remedies that do not show signs of working and could be harmful instead come to be in high demand among people who reject vaccines and other tested preventive strategies? It's a question of trust and distrust - and of which experts people listen to.
Rogue remedies like ivermectin and hydroxychloroquine are most popular among people who are skeptical of vaccines and other treatments - precisely because those treatments haven't gone through the same process of scientific and expert review that they distrust.
For people who are suspicious of mainstream scientific thought, information that appears to come from other sources often seems independent, insightful and brave.
These skeptics insist that they can evaluate health information themselves, and contested claims from nonofficial sources let them feel like they're doing so, which can paradoxically make those claims seem truer and therefore more appealing than the mainstream ones.
In my research on vaccine hesitancy before the pandemic, I often heard parents explain that they didn't trust childhood vaccines because of the many relationships between for-profit pharmaceutical companies, the government agencies that regulate them and the physicians who administer them.
"Doctors and nurses are so overloaded with so much information, much of it drug information, that they don't have the time in their schedule - they're scheduled to work 12-hour days, they don't have the energy to actually find these things out on their own," one mother told me. "And they're taught that if they aren't good little soldiers and distribute this stuff the way the companies are telling them to do this, they aren't being good doctors. And it all comes down, in my opinion, to the dollar. . . . These companies are making millions, getting governments to require these vaccines at an increased frequency; it's just like - it's overwhelming."
Others insist that responsibility for health lies with individuals, who must gather their own information, which many call research. "I don't trust pharmaceutical companies, absolutely not," another parent told me. "We live in a society where we listen to our doctor. We assume that they're God when it comes to health, and we don't do the research ourselves. And we've been raised that way and programmed that way."
Doing "your own research" sounds compelling. People commonly "research" appliances, new restaurants or consumer products. This kind of "research" is a process of gathering information, reading others' personal experiences and impressions and evaluating their relevance.
However, none of that is actually what science involves. Science is the pursuit and application of knowledge using systematic methodologies based on evidence. Science is slow and methodical, and it aims to create knowledge that is generalizable, beyond the individual interpreting it.
For people who largely trust government agencies, expert panels that review research and make recommendations, and peer-review processes, "follow the science" seems like a clear mandate. The idea is that expert knowledge, derived from rigorous methods, should guide policy and practice.
Vaccines against the coronavirus, for example, were systematically tested in tens of thousands of volunteers, and they're trustworthy because of the processes by which they were evaluated.
Some clinical trials of vaccines failed to show efficacy, making the ones that succeeded compelling. All are continually monitored with ongoing data analysis of vaccine safety and efficacy. For those who trust science, the systems work.
In the case of ivermectin, scientists found that the medication could kill the SARS-CoV-2 virus in a laboratory setting. But to be useful in practice, this finding had to be studied in actual people and with methods that allow for a causal relationship between the drug and the improvement in the people who take it to be measured.
Although there were initial positive reports that ivermectin could help, those studies did not adhere to the methodological expectations of good science, and some have been found to have had issues with the data.
Overwhelmingly, there is consensus among scientists that ivermectin does not cure Covid. "Following the science" leads to the conclusion that the drug should not be taken to treat Covid.
For those who do not trust the agencies and scientists who decide what standard should be used in research, though, the conclusion that ivermectin should not be used to treat covid feels untrue. Some are reading online accounts of individuals who took ivermectin and recovered - anecdotal evidence that is devalued in clinical trials and outcomes research but is nonetheless compelling to readers. Others listen to medical practitioners who speak out against mainstream science and medicine, seeing them as a kind of scientific whistleblower, speaking truth to power.
For example, Pierre Kory, an American physician who testified before Congress in December 2020 that ivermectin is a "miracle drug" for treating Covid, insists that the lack of support for the medicine as a covid treatment is financially and politically motivated.
Why, he and others suggest, would companies support repurposing existing drugs when they could develop new, more expensive drugs and increase profits? Many label Kory's statements misinformation, to which he responds, "It's because I'm providing information that is not supported by the establishment, right?
So anything that doesn't agree with them is misinformation, but what they do is disinformation. . . . The science around ivermectin is up against one of the largest and most powerful disinformation campaigns, I think almost ever."
The people who believe Kory over more mainstream experts are turning to DIY medical treatment in many cases, which carries risks. Physicians are hesitant to prescribe ivermectin for people without parasites, but many believers have turned to veterinary formulations, which can provide toxic doses to humans, resulting in increasing calls to poison centres and hospitalizations.
Even Merck, a large manufacturer of ivermectin that does not have a vaccine against Covid and which seemingly could profit from the treatment's growing demand, issued a statement denouncing its use for covid.
But that statement, which cuts against the drugmaker's profit motives, doesn't seem to have dampened the desire for its product. Nor does the fact that many marginalized expert voices have their own profits at stake, too. For example, Joe Mercola, a physician and longtime opponent of vaccines, has amassed millions selling purported alternatives to vaccines.
Subscriptions to sites that promise information to avoid covid, telemedicine visits that promise access to ivermectin or hydroxychloroquine, or templates and tools for vaccine and mask exemptions are big business. And the business model is predicated on furthering distrust of science rather than dialogue about it.
Science, by definition, requires skepticism. But it also requires transparency, rigorous methods and peer evaluation. It is reasonable for all of us to ask about possible conflicts of interest that could affect scientific discovery, to understand funding and processes.
Sometimes recommendations change as new information becomes available, as happened with hormone replacement for menopause, medications like Vioxx or the schedule for the measles vaccine. Sometimes, the cost of this new information is high - with new knowledge coming from individual illness, suffering, even death. Often it is slow, leading to desperation, which can promote purported miracle cures that have escaped the same scientific scrutiny.
As Randy Clouse's wife reminds us of her fight to get ivermectin to her husband: "Let's just face it. When you're on death's door, and you have no other options, you'll grasp at whatever you can get."
Desperation to save a loved one is understandable, as is a desire to find solutions that seem novel and miraculous.
A purported miracle drug sounds better than the alternative: accepting that following the science is often messy and slow. But that slow process is what provides the best path to finding new answers to complicated questions - and ultimately, it's worth trusting.
Jennifer Reich is professor of sociology at the University of Colorado Denver and author of "Calling the Shots: Why Parents Reject Vaccines."
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