Encouraged by right-wing doctor groups, desperate patients turn to ivermectin for long Covid

Almost two years have passed since Dean Fritzemeier fell ill with Covid in October 2020. As the rest of the world moves on, shrugging off new variants and traveling with a vengeance, he remains trapped in a life weighed down by the virus. Fritzemeier is always tired, but can’t sleep. The 52-year-old once walked 7 miles a day, but now can only get outside if he’s pushed in a wheelchair.

Along with millions of others, the Michigan resident has long Covid. He’s sought treatment at a rehab hospital and traveled to the Mayo Clinic in Minnesota, one of dozens of U.S. hospitals that have created programs to treat the still-mysterious syndrome. Nothing has helped. Out of desperation, he turned to an unproven remedy. Fritzemeier’s wife, Karen, heard about ivermectin from a cousin. “She said these people have the answers and the government is trying to kill us,” said Karen. “I didn’t believe all that. I just wanted to try something we had heard helped.”

They’re hardly alone. A horse dewormer and treatment for some human parasites, ivermectin was initially promoted, despite the lack of research, as a way to treat or prevent Covid infections. Now it is increasingly being marketed for long Covid, pushed by physicians with ties to political groups spreading anti-vaccine and anti-science messaging. There’s no credible evidence that supports ivermectin’s use for this purpose, and doctors at long-hauler clinics say they frequently see patients who’ve tried the drug without relief. But anecdotes of ivermectin working as a miracle cure swirl around social media, repeatedly referenced on Facebook groups for people suffering from long Covid.

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One patient posted that he started to feel better within two days of taking ivermectin. “Don’t believe all the media lies. It’s been around for many many years,” he wrote, adding that Big Pharma dismissed the drug because it’s cheap. Another patient said it cured her long-hauler symptoms in 24 hours. Though Karen Fritzemeier once worked as a respiratory therapist, is trained to weigh medical evidence, and knows to be skeptical of such anecdotes, she said for patients at a loss for treatment, it’s hard to resist these personal stories.

Two physician-led groups, America’s Frontline Doctors (AFLDS) and Front Line Covid-19 Critical Care Alliance (FLCCC), have been particularly active in promoting the drug, charging a minimum of $90 — and up to $1,650 to meet with the founder of the alliance — for online appointments to get an ivermectin prescription.

Several doctors working at established long Covid clinics said that, in the past few months, there has been an uptick in patients referred to them who had tried ivermectin, most of whom got the drugs through networks of doctors coordinated by AFLDS and FLCCC. The former group declined to comment, while FLCCC did not respond to requests for comment.

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With fears about acute Covid fading, but long Covid becoming an ever-greater problem, there’s tremendous financial incentive for the doctors behind these groups to find new ways to advertise ivermectin, said James Heathers, chief scientific officer at Cipher Skin and a scientific-integrity researcher, who has exposed fraudulent ivermectin studies. “Some are true believers” in the drug’s efficacy, said Heathers, even if the evidence doesn’t stack up. But it’s also good for business. “The last thing you want is for the con to end. You already have all these marks, you need to keep going.” he said. “It’s easy to get addicted to easy money.”

There’s more to this story, however, than mere greed. The leaders of these groups have achieved large followings on social media through ties to established right-wing political organizations, including the Tea Party Patriots, and Trump administration officials. A recording of an April 2020 meeting of the Council for National Policy Action, an influential conservative group, shows political figures talking about the need to assemble groups of doctors as spokespeople early in the pandemic, as a way to push back against lockdowns and public health messaging that was perceived as damaging to Trump’s re-election chances.

These doctors, with the support of political heavyweights, were promoted on right-wing media, including Fox News, Breitbart, and former Trump adviser Steve Bannon’s podcast. They helped create a counter-narrative that encouraged distrust of pharmaceutical companies and health agencies. Ivermectin has become a sword in that fight, said several doctors working to combat misinformation, playing on the same themes of distrust in science-based medicine.

Simone Gold, founder of America’s Frontline Doctors, launched her organization with explicit support from right-wing political figures. She was sentenced to 60 days in prison last month and fined $9,500 for storming the U.S. Capitol in the Jan. 6, 2021, insurrection.

Meanwhile, Pierre Kory, president of Frontline Covid-19 Critical Care Alliance, began touting ivermectin out of desperation to combat the virus, but he has increasingly embraced vaccine skepticism and rejected Big Pharma and conventional medicine. He has found a large online audience and, having resigned as a pulmonary and critical care specialist at Aurora St. Luke’s Medical Center in Milwaukee after he said they infringed on his freedom of speech, has turned to flogging online appointments and access to ivermectin. (Aurora St. Luke’s declined to comment.)

Last month, the American Board of Internal Medicine wrote to Kory, warning it was considering revoking his board certification for promoting misinformation. In response, Kory tweeted he had “massive evidence to support each statement.” Neither he nor Gold responded to requests for comment from STAT. Gold’s attorney in her Capitol trespassing trial, Dickson Young, said he had no comment.

Kory’s advocacy for an unproven drug has effectively pushed him outside the medical industry. “People don’t trust him, he won’t be able to get a job,” at an established hospital, said Siyab Panhwar, a cardiologist at Tulane University and a member of the United Nations’ Team Halo, a group of physicians who combat disinformation on social media. For Kory and Gold, he added, “Covid is the one thing that keeps them relevant.”

Early in the pandemic, physicians were scrambling to try existing drugs on the patients crowding hospitals, desperate to find anything that could help. Ivermectin arose out of that mayhem.

Kory was then a critical care doctor at University of Wisconsin Hospital and Clinics, but was increasingly frustrated with colleagues who wanted more evidence before doling out drugs to the overflowing wards of Covid-19 patients. He advocated for using numerous treatments, including steroids (which have since been proven effective) and intravenous vitamin C (which has not), and after arguing with colleagues about their approach, left for a position at Aurora St. Luke’s in May 2020.

Together with Paul Marik, then chief of pulmonary and critical care medicine at Eastern Virginia Medical School in Norfolk, and a handful of other doctors, he founded FLCCC, and they collectively started advocating for ivermectin as a treatment for acute Covid-19 toward the end of 2020. At the time, the medical community was frantically searching for something that could help, and ivermectin was a cheap and widely available drug that some considered worth trying. Kory’s message, though, was more forceful: Ivermectin was the answer to the pandemic.

His view quickly captured public attention after Wisconsin Sen. Ron Johnson, a Republican, invited him to speak to a Senate committee in December, and his testimony was picked up by Fox News. “Ivermectin is effectively a ‘miracle drug’ against Covid-19,” Kory testified. “The magnitude of the effect is similar to its Nobel Prize-worthy historical impacts against parasitic disease across many parts of the globe.”

He added that ivermectin was a stunningly effective preventive medicine: “It basically obliterates transmission of this virus,” he said. “If you take it, you will not get sick.” A few months later, despite his own ivermectin regimen, Kory fell ill with Covid. This didn’t diminish his belief in the drug; instead, he decided the dose should be increased to achieve maximum effectiveness.

When Kory and his associates started championing ivermectin, there was legitimate scientific debate over whether it might work for patients with active infections. In June 2020, Australian researchers showed ivermectin stopped the coronavirus from replicating — but in cell cultures in lab dishes, not humans.

Two years on, though, more advanced studies that tested ivermectin in humans, which Kory has relied on to advocate for the drug’s use, have been repeatedly found to be biased or outright fabricated. In one major study claiming to show ivermectin’s effectiveness, BuzzFeed News revealed a hospital listed as participating had no record of it taking place. A study from Egyptian researchers was retracted following evidence of plagiarism and major data errors, including using the same medical records for multiple patients. And Kory’s own research on ivermectin was retracted by a medical journal over use of inaccurate hospital mortality data.

Overall, a group of scientists investigating ivermectin evidence, including Heathers, found more than a third of 26 studies of the drug had serious mistakes or potential fraud, while the others did not provide evidence of the drug’s effectiveness. A meta-analysis of randomized controlled trials, published in March, found ivermectin is not a viable Covid-19 treatment, and a large clinical trial of more than 3,500 patients, published in the New England Journal of Medicine in May, supported this finding.

And yet, as the evidence has accumulated to show ivermectin is not effective, Kory has dug in his heels. While firmly embracing ivermectin, he has also shown increasing hostility to Covid-19 vaccines. Whereas FLCCC once heralded the vaccines, and said ivermectin was a “bridge” until shots were available, the website does not currently list vaccines in its section on Covid-19 prevention, but has a whole section devoted to post-vaccine injuries. Last month, an FAQ question “What is your position on vaccines?,” was removed from the website.

When FLCCC launched, the group actively distanced itself from America’s Frontline Doctors. Over the years though, Kory’s rhetoric has gradually shifted, and FLCCC’s and America’s Frontline Doctors’ messaging have become more aligned. Last summer, Kory talked about the purported benefits of ivermectin on comedian Joe Rogan’s podcast, which has become a platform for spreading Covid falsehoods, and suggested pharmaceutical companies didn’t want to investigate its use for Covid because of the limited potential to profit from a generic drug. He has also increasingly minimized the benefits of vaccines, and promoted conspiracy theories about children dying following shots. Gold, meanwhile, has long been explicitly anti-vax, and describes Covid-19 vaccines as “an experimental biological agent deceptively named a vaccine.”

FLCCC and AFLDS’ distrust of mainstream medicine and pharma, combined with vaccine skepticism, provides the foundation for promoting ivermectin as a long Covid treatment. Without well-designed studies, it’s impossible to know whether ivermectin is a valid treatment for long Covid. Given ivermectin’s inability to treat acute Covid, though, several physicians said it’s unlikely to work for long Covid, and the drug shouldn’t be promoted as treatment without strong evidence.

Kory and the FLCCC have always maintained ivermectin was useful for anything Covid-related, but whereas earlier in the pandemic the focus was on prevention and acute care, FLCCC now has a section on its website devoted to long Covid treatments, with ivermectin as the first drug listed in the protocol.

There are clear financial incentives for continuing to sell ivermectin, said Aaron Friedberg, an internal medicine physician at Ohio State University Wexner Medical Center’s Post-COVID Recovery Program. “Financially, if you prescribe it as a long-term therapy, you can keep prescribing it, so keep having visits for it,” he said. “It’s very frustrating.”

FLCCC does not cite specific studies in advocating for ivermectin to treat long Covid, but refers to anecdotal experience: “[I]vermectin is proving to be highly effective at eliminating symptoms based on the rapidly accumulating clinical experiences of the FLCCC and a number of allied experts,” reads the website. It describes ivermectin as “one of the safest drugs known,” and notes its discovery as a treatment for parasitic infections won a Nobel Prize. Evidence around the drug is grounds for its use “for prevention and treatment in all stages of COVID-19,” reads the site. Although ivermectin is relatively safe, it’s far from benign. When taken long term in large doses, it can cause severe rashes, stomach pain, diarrhea, facial or limb swelling, a sudden drop in blood pressure, and liver injury. And even when it doesn’t cause side effects, ivermectin can turn patients away from evidence-based treatments.

The demand for ivermectin has waned as people have become less fearful of acute Covid. From late 2020 until early 2022, ivermectin prescriptions surged to well over 100,000 per month, according to data from IQVIA. That started to slip in February, but dispensing it for long Covid helps maintain prescriptions above pre-pandemic levels: There were 78,723 prescriptions for the drug last month — 23% higher than in June 2019.

Ivermectin is highly lucrative for the doctors who sell it. Members of Front Line Covid-19 Critical Care Alliance and America’s Frontline Doctors offer access to the drug online via telemedicine, for high fees, and often without insurance coverage.

Kory has launched his own “advanced Covid-19 care center,” with a “specialized focus” on long Covid consultations. An online appointment with a member of his team costs $1,250, which includes an initial video visit and two follow-ups, while meeting with Kory himself costs $1,650.

Another member of Kory’s FLCCC group, Fred Wagshul, advertises an “ivermectin telehealth conference” with a nurse practitioner to determine whether the patient is a candidate for ivermectin. The $211 charge is not billable to insurance. Patients get an initial six-month supply, and then need a $75 consultation to continue the therapy.

“It’s fantastically irresponsible,” to both promote ivermectin as a long-Covid treatment and charge so much for access, said Friedberg.

Until the end of April, patients who contact America’s Frontline Doctors seeking unproven therapies including hydroxychloroquine and ivermectin were referred to a telehealth site, speakwithanmd.com, which connected them to a network of doctors who charge $90 for a prescription. Currently, that referral is no longer active, and a speakwithanmd representative said it’s no longer tied to AFLDS and its website is currently not operational. AFLDS is currently recruiting physicians and pharmacists, with plans to open in-person clinics across the country, and also sells merchandise, including a $30 mug and a book on the exaggerated fear of the coronavirus.

Doctors who offer ivermectin as long-Covid treatment often have no expertise treating pulmonary or chronic diseases. Isabel Bazan, a pulmonologist and critical care specialist at Yale University School of Medicine’s Post COVID Recovery Program, said she saw one patient, a man in his 70s, who had been prescribed ivermectin by a gynecologist. The patient had found this doctor through a friend, who said her gynecologist had the solution to his problems. “This doctor was prescribing this to multiple people as part of a long-Covid cure,” said Bazan.

But this particular patient had never even tested positive for Covid in the first place and, after Bazan examined him, she discovered he had pneumonia and an aggressive bacterial infection. “Covid had nothing to do with it,” she said.

Dean Fritzmeier was recently diagnosed with mild cognitive impairment and has been on disability for close to a year, after he was forced to give up his job training student tutors and teaching math at a Muskegon, Mich., community college. His wife, Karen, said she first got him ivermectin through America’s Frontline Doctors, which referred them to a physician through the group’s telemedicine partner, speakwithanmd.com, which promised to connect patients with “AFLDS-trained physicians.” “They just seem like they’re out to get money,” she said.

Once the first prescription ran out, Dean sought out a different physician, and had a telemedicine appointment with Syed Haider, a doctor listed in a directory on the FLCCC website as a provider who goes to “great lengths to search out the lowest cost pharmacies for ivermectin.” Haider sent out an automated message on his patient portal, which STAT has seen, that asked patients to fill out a form and added: “While waiting for your appointment, I will evaluate the patient questionnaire and if there are no concerning red flags, I will write the prescriptions ASAP without having a visit.”

Fritzemeier saw the doctor and paid $90 for the appointment and got a prescription, and the doctor said they could email for a refill. But, when his prescription ran out, Haider said they couldn’t get a refill without paying for another appointment, according to Karen Fritzemeier. “$90 just for a little phone call,” she said. “At the time, we were so desperate because he might lose his job.”

A representative from Haider’s office said that though patients can email for a refill, this doesn’t imply the refill is without charge. “We’re just letting the patient know that they can request a refill, but a refill is usually considered a “new” prescription that requires a doctor’s fee, and we’re transparent with our patients from the get-go about this by sending them our Fees Notice in our Welcome Messages,” a member of his office wrote in an email.

Fritzemeier ended up ordering ivermectin horse paste online, and a machine to measure out the correct dose. In total, she said, she paid about $1,000 for her husband to get ivermectin. “It felt fairly safe, but here I am giving him horse paste,” she said. It did nothing for her husband.

Ivermectin may help doctors get rich, but it’s not simply about the money. The drug’s appeal is intensely political.

“It taps into existing under-currents. It becomes an act of resistance to what some people see as coercive acts of governments and others call public health,” said Heathers, the scientist who exposes fraudulent research.

Right-wing politicians and doctors pushing unproven treatments have leaned on each other throughout the pandemic. The former have recruited physicians as an authoritative face for their policies and anti-public-health messaging. And the doctors have found a devoted customer base, so much so that Gold raised more than $430,000 through AFLDS’ website for her legal defense fund after being charged with trespassing at the U.S. Capitol. Ivermectin’s popularity is a product of that approach, attracting patients skeptical of vaccines and, increasingly, those dissatisfied by conventional medical responses to long Covid.

Much of this political sentiment is shared online — through posts on Twitter or in long-Covid Facebook groups from leading conservative voices and other people who took ivermectin and say they dramatically recovered. Bret Weinstein, host of the “DarkHorse Podcast,” tweeted that ivermectin was a “near-perfect COVID prophylactic,” and told Tucker Carlson the drug meant vaccines weren’t necessary. Rogan created an Instagram video after he got Covid, telling his followers he was taking ivermectin to get better.

Kory spreads his message through a Substack newsletter, where he has thousands of paying subscribers and many more who subscribe to his free updates, and where he recently shared a conversation he had with another physician, who proudly called Kory “the medical Joe Rogan.”

“It has that cult-like status now,” said Tulane’s Panhwar. “It’s a crusade against Big Pharma. … Anti-establishment, we’re going against mainstream doctors that are paid off by big government energy.”

The crusade’s origin was carefully coordinated, rather than springing from the grassroots. The Council for National Policy (CNP), a secretive organization formed in 1981 to promote Christian fundamental ideas, with funding from fossil fuel interests, first discussed the importance of physicians as figureheads of political messaging soon after the pandemic started. A leaked recording from the April 2020 meeting of CNP Action, an affiliate of CNP, shared with Associated Press by the Center for Media & Democracy, showed participants discussing the importance of physician-led groups to combat the prospect of lockdowns, which were seen as damaging to the economy and Trump’s campaign.

Doctors “have a 92 percent trust rate with the American people according to polling,” conservative activist Nancy Schulze said during the call. “There is a coalition of doctors, doctors’ coalition, who are extremely pro-Trump, that have been preparing and coming together for the war ahead in the campaign on health care, and these doctors could be activated for this conversation now for reopening.”

CNP, which holds closed-door meetings, does not have much public recognition. But membership in recent years has included former Trump adviser Kellyanne Conway, former Vice President Mike Pence, Bannon, National Rifle Association CEO Wayne LaPierre, President Trump’s deputy campaign manager David Bossie, and Jenny Beth Martin, founding director of the Tea Party Patriots. “[I]f the lights in front of me were not quite so bright, I could probably go to every table and name heroes of the conservative movement,” Pence said in a speech to CNP members in November 2020.

Days after CNP Action’s April 2020 meeting, a newly created group, Save Our Country Coalition, started promoting hydroxychloroquine on right-wing media. AFLDS founder Gold, an emergency room physician who had a concierge medicine private practice based in Los Angeles, was a leading member, as was Martin, whose Tea Party Patriots is a conservative activist offshoot of the tea party movement. In July 2020, Martin helped organize a press conference for Gold and other physicians to encourage the reopening. It was live-streamed on Breitbart News, tweeted by President Trump and his son Donald Trump Jr., and was the second-most-engaged post on Facebook within hours, with 14 million views.

The ties between CNP and physicians who reject evidence-based Covid responses are getting stronger. As of this year, Gold is now a member of CNP, according to a membership list leaked by Documented, while Jay Bhattacharya, a Stanford professor who wrote the Great Barrington Declaration that argued against lockdowns and other public health measures, spoke at their February meeting. Anne Nelson, professor of international and public affairs at Columbia University and author of a book on the CNP, said she’s noticed a significant uptick in CNP members who are physicians.

“We’ve seen this relentless assault on the CDC, [Anthony] Fauci, efforts to sow doubt in poorly informed people. It’s been extremely successful. Based on the evidence I’ve seen, I believe it’s an attempt to destabilize the government,” she said.

As physicians promoting ivermectin and other medical disinformation have become more vocal, many of the more prominent leaders, including Kory, have left jobs at hospitals. Cast out by the medical establishment, several have doubled down on their political messaging, encouraged and funded by their online followers. And the online disinformation battle is getting increasingly hostile.

Mary Talley Bowden, an ear, nose, and throat doctor who was suspended and then resigned from her job at Houston Methodist Hospital, after she tweeted she wouldn’t accept any new vaccinated patients, has repeatedly tweeted in recent months about pharmacies, and specific pharmacists, who have refused to fill patients’ ivermectin prescriptions. Bowden is a member of FLCCC and, in May, left a comment on a Substack post that she was also a member of AFLDS; she later denied being a member of the latter in a text message to STAT, and said her comment was a typo, as she’d meant to write “AAPS,” for the Association of American Physicians and Surgeons.

Pharmacists have a legal right to reject prescriptions if they believe the medication will not be put to proper medical use. “Pharmacists have a responsibility to practice responsibly. It’s the law,” said Savannah Sparks, a lactation consultant and pharmacist in Biloxi, Miss.

Many of the pharmacists that Bowden tweeted about in the past few months were Asian American, Sparks told STAT. A review of Bowden’s posts found seven of 12 pharmacists she called out had Asian American names. “She was posting their work information and telephone numbers and they were getting a ton of harassment,” Sparks said.

Sparks tweeted about and posted on TikTok about Bowden’s actions, accusing her of harassing Asian American pharmacists, and Bowden responded in May by sending a letter via her lawyer Steven Biss (who also represented former Republican Congressman Devin Nunes in a series of unsuccessful defamation lawsuits, and was sanctioned for a “frivolous” lawsuit against CNN). The letter listed comments she considered defamatory and demanded Sparks issue retractions and public apologies, and compensate her. Last month, Bowden tweeted that she hoped Sparks’ daughter “doesn’t die in her sleep,” in response to Sparks saying her daughter would be vaccinated against Covid, which made Sparks worried for her daughter’s safety.

Bowden said she’d kept more than 4,000 people with Covid out of the hospital and without complications, nearly always prescribing ivermectin to her patients. “Pharmacists are interfering with the doctor-patient relationship by refusing to dispense life-saving medications used to treat Covid-19,” she told STAT. Her tweet about Sparks’ daughter was based on genuine worries about Covid vaccine side effects, she added: “I am honestly concerned that young children will die in their sleep after the shot.”

Sparks said her address has been posted online, and she’s had to buy added security cameras as protection following countless rape and death threats. She’s also been the victim of “swatting,” where police were sent to her house after someone emailed Biloxi City Council members, pretending to be Sparks announcing plans to go on a shooting spree.

“I’ve limited my outdoor trips. I get groceries delivered,” said Sparks. “It sucks, but I truly believe what I’m doing is right and just. As this pandemic became political and public health became a political talking point and science became a weapon for certain individuals to seed doubt, we started seeing health care professionals perpetuating this stuff.”

Not everyone who turns to ivermectin believes the conspiratorial packaging sold alongside it. Karen Fritzemeier didn’t buy into her cousin’s rhetoric about the government and Big Pharma trying to hide the truth. But she and her husband were at a loss, and had nothing else to try.

“It feels like it’s up to the patients to figure it out. It’s so new to the doctors, they don’t know what to do,” she said about long Covid. Her husband, Dean, said he’s in no place to evaluate treatment options while struggling with the virus. “She [Karen] normally looks into things on my behalf, because of my brain fog. She’s more medically orientated than I am,” he said.

His family physician refused to prescribe ivermectin, and both Karen and Dean say they appreciate his honesty and support. When he and other doctors had little else to offer, though, they felt they had to try the alternative approach.

“Medicine as an organized human endeavor has done particularly poorly with illnesses that are similar to long Covid, like Lyme disease and chronic fatigue,” said Heathers. “We’ve done a rancid job of making sure people are taken care of over time.”

As more people are affected by long Covid, and established, evidence-based medicine struggles to respond, the false promise of ivermectin holds undeniable allure for patients struggling to recover.

Covid specialists are still searching for answers, said Ohio State’s Friedberg. Some treatments seem to work for some patients with specific symptoms, but others are less easily resolved. The biochemical mechanisms underlying long Covid are still uncertain, and there are likely several different conditions currently being lumped together as one.

“There are a lot of things I’m trying to find out … and there’s a lot I don’t know,” said Friedberg. Patients who have been suffering for months are understandably drawn to doctors who instead promise certainty. “What’s the better story?” he said.