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When Stephanie caught COVID-19 just before Thanksgiving of last year, her daughter Laurie suggested that she get help.
“She was really not feeling well, and I was like, ‘Just go to the doctor,'” Laurie recalls.
But Stephanie, who was 75 at the time, didn’t go. A few years before, she had been sucked into a world of online conspiracy theories — far-fetched ideas like one claiming John F. Kennedy Jr. is still alive. With the pandemic, it got worse. She became deeply distrustful of the medical system.
Laurie remembers what her mother used to tell her about the COVID vaccines: “Everybody who got vaccinated is going to die.” (NPR is only using family members’ first names to protect them from online harassment.)
COVID cases and hospitalizations are once again on the rise, thanks to a new omicron subvariant. Vaccines and certain proven treatments can help prevent the worst outcomes. But for Americans like Stephanie who don’t trust the medical establishment, there’s a network of fringe medical doctors, natural healers and internet personalities ready to push unproven cures for COVID. And a shady black market where you can buy them. Stephanie was plugged into that alternative medical network, and doctors say it ultimately cost her life.
Ivermectin has developed an enormous following over the course of the pandemic – in part because of a small cadre of fringe doctors who promote it as an alternative to COVID vaccines, despite early studies which didn’t support it as a treatment.
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Ivermectin has developed an enormous following over the course of the pandemic – in part because of a small cadre of fringe doctors who promote it as an alternative to COVID vaccines, despite early studies which didn’t support it as a treatment.
Meredith Rizzo/NPR
The array of alternative COVID treatments is vast. Some offer kosher multivitamins, others suggest more radical interventions, such as drinking your own urine.
But one drug in particular has become the center of many alternative therapies: ivermectin. Originally used to treat parasitic worms, ivermectin has developed an enormous following over the course of the pandemic — especially in politically conservative circles. That’s, in part, because of a small cadre of licensed doctors who promote it as an alternative to vaccination against COVID. Among the most prominent is Dr. Pierre Kory, whose group, the Front Line COVID-19 Critical Care Alliance, has become a major force promoting ivermectin.
“Ivermectin is effectively a ‘miracle drug’ against COVID-19,” Kory told a Senate committee in December of 2020.
But rigorous studies show ivermectin is far from miraculous. Ivermectin was studied early in the pandemic as a potential treatment for COVID, but it hasn’t panned out. Large clinical studies show that ivermectin does not lower rates of hospitalization. Meanwhile, some of the early, promising results have been retracted, including one study led by Kory himself. Today, everyone from the American Medical Association to the Food and Drug Administration tells doctors not to prescribe ivermectin to treat COVID.
When Laurie’s mother, Stephanie, fell sick with COVID-19 last fall, she refused to get tested. Instead, Stephanie got swept up in a world of conspiracy theories online that touted alternatives to proven treatments. “I don’t believe she was supposed to die,” Laurie says. “I blame the misinformation.”
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When Laurie’s mother, Stephanie, fell sick with COVID-19 last fall, she refused to get tested. Instead, Stephanie got swept up in a world of conspiracy theories online that touted alternatives to proven treatments. “I don’t believe she was supposed to die,” Laurie says. “I blame the misinformation.”
Meredith Rizzo/NPR
“The non-fraudulent non-messed up clinical trials are all pretty uniformly negative,” says David Gorski, a cancer surgeon and researcher at the Wayne State University School of Medicine in Michigan.
For years before COVID, Gorski tracked doctors who offered alternative cures for cancers. And he sees plenty of parallels between those physicians and doctors like Pierre Kory.
“A lot of these doctors fit the mold of what I used to call back in the day ‘the brave maverick doctor,'” he says.
Gorski says that they play up their persecution by the system, offer scant evidence for their treatments, and deride effective therapies while promoting their own cures. In Kory’s case, he offers personal consultations to sick COVID patients — for $400.
“COVID is no different than quackery going back centuries,” Gorski says.
Kory did not answer NPR’s emailed questions in time for our deadline, but he’s been everywhere on right-wing media promoting ivermectin — and his bravery for prescribing it: “People who’ve used ivermectin, their license have been threatened,” he said on a recent conservative podcast. “I have eight complaints to my medical board; I don’t know what’s going to happen to my license.”
Among those influenced by Kory’s message was Stephanie. In text messages, Stephanie’s friends were passing around an ivermectin-based treatment protocol that he helped develop.
Timothy Mackey is a professor at the University of California, San Diego who studies online pharmacies. He says ivermectin promoters have spent months hyping the drug.
“They’re creating demand and this demand is being circulated in all these different online groups,” he says.
Mackey says there’s a whole range of entities trying to make a buck off the underground demand for ivermectin. It’s difficult to track how many people are seeking it out on the black market, but Mackey believes many Americans are affected.
“There’s probably thousands of people, tens of thousands of people that have looked for drugs, tried to buy something…maybe been defrauded and at worst maybe even harmed from these products,” he says.
After she fell ill with COVID, Stephanie went looking for ivermectin. A friend gave her the name of a woman in Jacksonville, Fla., who was willing to sell it to her along with some other unproven COVID drugs. Stephanie’s order totaled $390.
“She was just waiting for the pills and really did not want to do anything else,” Laurie remembers.
Her mom was getting sicker and sicker and refusing to go to the hospital. Laurie was worried that she had invested so much in the mail-order pills.
“I was like, ‘Who’d you buy it from?’ because I had read a lot of stuff about people getting it illegally, and she was like, ‘I got it from a doctor,’ and I said, ‘Are you sure it’s a doctor?’ and she was like, ‘Yeah it’s definitely a doctor.'”
Except it wasn’t a doctor. The woman’s name was Elizabeth Starr Miller. According to her LinkedIn profile, she’s a “quantum healer” who also works as a loan officer. In text messages shared with NPR by Stephanie’s family, Miller repeatedly told Stephanie to be wary of the hospital.
Meanwhile, the drugs weren’t arriving. After a few days, Stephanie worried she might be getting conned.
Stephanie became so ill she had to be rushed to the local hospital. That same day the drugs arrived, stuffed inside a plain brown envelope with Miller’s home address on the return label.
When her daughter, Laurie, looked at them, she found ivermectin pills that aren’t licensed for use in the U.S. They appeared to be made by Indian pharmaceutical companies. Except, when NPR shared the photos of the packets with Mackey, the pharmaceutical researcher, he wasn’t even sure that the Indian company had made them.
“It looks highly suspect the way this pill pack is set up to begin with,” Mackey says. Mackey points to one stamp on the pack that reads “WHO GMP Certified.” It’s a real certification in one Indian state, but he’s also seen it before, on fake pills from overseas.
“Once you see this mark here, you’re pretty much going to throw out this sample,” he says.
The pack of pills that Stephanie received in the mail included blister packs that were labeled as hydroxychloroquine and ivermectin.
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The pack of pills that Stephanie received in the mail included blister packs that were labeled as hydroxychloroquine and ivermectin.
Meredith Rizzo/NPR
When reached by phone, Elizabeth Starr Miller, the woman who sold Stephanie the suspicious drugs, initially told NPR she had nothing to do with the drugs.
“I don’t prescribe the medicine, someone else does,” she said. When pressed about text messages she sent Stephanie that, among other things, included a tracking number for the ivermectin, Miller says she and Stephanie had consulted a licensed doctor. An NPR review of the entire text thread between Stephanie and Miller did not show any evidence of such a meeting, and her family says they are unaware of any appointment taking place. Miller says the doctor has since died of cancer and she has no notes from the consultation.
Miller says she was one of well over a hundred doctors, homeopathic healers and online pharmacists offering ivermectin. She says she believed the drugs would help and that she can’t be blamed for Stephanie’s death.
“This was a grown woman who had made her choice,” she says. “I was just trying to help her, I wasn’t trying to hurt her. I would never hurt anybody.”
Stephanie’s faith in the drugs cost her valuable time. Doctors who treated her at the hospital told NPR they believe she wasted critical days waiting for them. Stephanie grew weaker and eventually succumbed to COVID just a few days after Christmas.
Stephanie’s best chance would have been to be vaccinated before she got sick, says Jai Ballani, a physician with Northwell Health who treated Stephanie at the hospital last year. But even without vaccination, had she quickly sought scientifically tested therapies, she would have fared better. “There might have been a chance that this story might have had a different outcome,” Ballani says.
Laurie and the rest of Stephanie’s family have begun to heal in the months following her death. But Laurie remains angry that both misinformers and profiteers continue to operate, promoting their treatments to the public. “It’s so abusive,” she says. “It’s so bad.”
This story was edited by Brett Neely, Meredith Rizzo and Carmel Wroth of NPR. Design and development by Connie Hanzhang Jin of NPR.
Starting July 16, people in mental health crisis will have a new three-digit number, 988, through which to reach trained counselors. Jenny Kane/AP hide caption toggle caption Jenny Kane/AP Starting July 16, people in mental health crisis will have a new three-digit number, 988, through …
Jeni Rae Peters and daughter embrace at their home in Rapid City, S.D. In 2020, Peters was diagnosed with stage 2 breast cancer. After treatment, Peters estimates that her medical bills exceeded $30,000. Dawnee LeBeau for NPR hide caption toggle caption Dawnee LeBeau for NPR …
Steve Bova (center) traveled from Maryland to Los Angeles with the “People’s Convoy” to protest covid-19 restrictions. Despite using a phrase that originated with the abortion rights movement, he opposes abortion.
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Steve Bova (center) traveled from Maryland to Los Angeles with the “People’s Convoy” to protest covid-19 restrictions. Despite using a phrase that originated with the abortion rights movement, he opposes abortion.
Rachel Bluth/Kaiser Health News
In the shadow of L.A.’s art deco City Hall, musicians jammed onstage, kids got their faces painted, and families picnicked on lawn chairs. Amid the festivity, people waved flags, sported T-shirts and sold buttons — all emblazoned with a familiar slogan: “My Body, My Choice.”
This wasn’t an abortion rights rally. It wasn’t a protest against the recent U.S. Supreme Court ruling that gutted Roe v. Wade. It was the “Defeat the Mandates Rally,” a jubilant gathering of anti-vaccine activists in April to protest the few remaining COVID-19 guidelines, such as mask mandates on mass transit and vaccination requirements for health care workers.
Similar scenes have played out across the country during the pandemic. Armed with the language of the abortion rights movement, anti-vaccine forces have converged with right-leaning causes to protest COVID precautions.
And they’re succeeding. Vaccine opponents have appropriated “My Body, My Choice,” a slogan that has been inextricably linked to reproductive rights for nearly half a century, to fight mask and vaccine mandates across the country — including in California, where lawmakers had vowed to adopt the toughest vaccine requirements in the U.S.
As the anti-vaccine contingent has notched successes, the abortion rights movement has taken hit after hit, culminating in the June 24 Supreme Court decision that ended the federal constitutional right to abortion. The ruling leaves it up to states to decide, and up to 26 states are expected to ban or severely limit abortion in the coming months.
Now that anti-vaccination groups have laid claim to “My Body, My Choice,” abortion rights groups are distancing themselves from it — marking a stunning annexation of political messaging.
“It’s a really savvy co-option of reproductive rights and the movement’s framing of the issue,” said Lisa Ikemoto, a law professor at the University of California-Davis Feminist Research Institute. “It strengthens the meaning of choice in the anti-vaccine space and detracts from the meaning of that word in the reproductive rights space.”
Framing the decision to vaccinate as a singularly personal one also obscures its public health consequences, Ikemoto said, because vaccines are used to protect not just one person but a community of people by stopping the spread of a disease to those who can’t protect themselves.
Celinda Lake, a Democratic strategist and pollster based in Washington, D.C., said “My Body, My Choice” is no longer polling well with Democrats because they associate it with anti-vaccination sentiment.
The phrase “My Body, My Choice” was ubiquitous at an April rally against vaccine mandates in Los Angeles. The slogan started as an abortion rights catchphrase, but has become a favorite of vaccine skeptics.
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The phrase “My Body, My Choice” was ubiquitous at an April rally against vaccine mandates in Los Angeles. The slogan started as an abortion rights catchphrase, but has become a favorite of vaccine skeptics.
Rachel Bluth/Kaiser Health News
“What’s really unique about this is that you don’t usually see one side’s base adopting the message of the other side’s base — and succeeding,” she said. “That’s what makes this so fascinating.”
Jodi Hicks, president of Planned Parenthood Affiliates of California, acknowledged that the appropriation of abortion rights terminology has worked against the reproductive rights movement. “In this moment, to co-opt that messaging and distract from the work that we’re doing, and using it to spread misinformation, is frustrating and it’s disappointing,” Hicks said.
She said the movement was already gravitating away from the phrase. Even where abortion is legal, she said, some women can’t “choose” to get one because of financial or other barriers. The movement is now focusing more heavily on access to health care, using catchphrases such as “Bans Off Our Bodies” and “Say Abortion,” Hicks said.
Vaccination hasn’t always been this political, said Jennifer Reich, a sociology professor at the University of Colorado-Denver, who has written a book about why parents refuse vaccines for their kids. Opposition to vaccines grew in the 1980s among parents concerned about school vaccine requirements. Those parents said they didn’t have enough information about vaccines’ potential harmful effects, but it wasn’t partisan at the time, Reich said.
The issue exploded onto the political scene after a measles outbreak tied to Disneyland sickened at least 140 people in 2014 and 2015. When California lawmakers moved to prohibit parents from claiming personal belief exemptions for required childhood vaccines, opponents organized around the idea of “medical choice” and “medical freedom.” Those opponents spanned the political spectrum, Reich said.
Then came COVID. The Trump administration politicized the pandemic from the outset, starting with masks and stay-at-home orders. Republican leaders and white evangelicals implemented that strategy on the ground, Reich said, arguing against vaccine mandates when COVID vaccines were still only theoretical — scaring people with rhetoric about the loss of personal choice and images of vaccine passports.
They gained traction despite an obvious inconsistency, she said: Often, the same people who oppose vaccine requirements — arguing that it’s a matter of choice — are against abortion rights.
“What’s really changed is that in the last two or so years, it’s become highly partisan,” Reich said.
Joshua Coleman leads V is for Vaccine, a group that opposes vaccine mandates. He said he deploys the phrase strategically depending on what state he’s working in.
“In a state or a city that is more pro-life, they’re not going to connect with that messaging, they don’t believe in full bodily autonomy,” Coleman said.
But in places like California, he takes his “My Body, My Choice” rhetoric where he thinks it will be effective, like the annual Women’s March, where he says he can sometimes get feminists to consider his perspective.
Perception of the word “choice” has changed over time, said Alyssa Wulf, a cognitive linguist based in Oakland, Calif. The word now evokes an image of an isolated decision that doesn’t affect the broader community, she said. It can frame an abortion seeker as self-centered, and a vaccine rejector as an individual making a personal health choice, Wulf said.
Beyond linguistics, anti-vaccination activists are playing politics, intentionally trolling the abortion rights groups by using their words against them, Wulf said. “I really believe there’s a little bit of an ‘eff you’ in that,” Wulf said. “We’re going to take your phrase.”
Tom Blodget, a retired Spanish-language instructor from Chico, Calif., sported a “My Body, My Choice” shirt — complete with an image of a cartoon syringe — at the Defeat the Mandates Rally in Los Angeles. It was “an ironic thing,” he said, meant to expose what he sees as the hypocrisy of Democrats who support both abortion and vaccine mandates. Blodget said he is “pro-life” and believes that COVID vaccines are not immunizations but a form of gene therapy, which is not true.
For Blodget, and many other anti-vaccination activists, there is no inconsistency in this position. Abortion is not a personal health decision akin to getting a shot, they say: It is simply murder.
“Women say they can have an abortion because it’s their body,” Blodget said. “If that’s a valid thing for a lot of people, why should I have to take an injection of some concoction?”
About a week later and nearly 400 miles to the north in Sacramento, state lawmakers heard testimony on bills about abortion and COVID vaccines. Two protests, one against abortion and one against vaccine mandates, converged. Truckers from the “People’s Convoy,” a group that opposes COVID mandates that had been touring the country with its message of “medical freedom,” testified against a bill that would stop police from investigating miscarriages or stillbirths as murders. Anti-abortion activists lined up to oppose a bill that would update reporting requirements to the state’s vaccine registry.
“My Body, My Choice” was ubiquitous: Kids petting police horses in front of the Capitol wore T-shirts with the slogan, and truckers watching a sword dance toted signs above their heads.
At the time, two tough legislative proposals to mandate COVID vaccines for schoolchildren and most workers had already been shelved without a vote. One controversial vaccination proposal remained: a bill to allow children 12 and older to get COVID vaccines without parental consent.
Lawmakers have since watered down the measure, raising the minimum age to 15, and it awaits crucial votes. They have shifted their attention to the latest political earthquake: abortion.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. It is an editorially independent operating program of KFF (Kaiser Family Foundation).
