How misinformation about pregnancy and covid vaccines became deadly conventional wisdom
Health officials created a void for false claims to spread.
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It took nine months for the Centers for Disease Control and Prevention to officially recommend the approved covid-19 vaccine for those who are pregnant, frustrating doctors who saw evidence months or weeks earlier it was safe and effective.
Obstetricians say the CDC’s lagging guidance created a void for misinformation to flourish. The vaccination rate among pregnant people is now 4 in 10, a dim statistic among a high-risk group. Pregnant women with symptomatic covid are more than twice likely to be admitted to intensive care and more likely to die from covid than other women.
“The messages initially were mixed, and I think this particular vaccine — because there were not strong voices coming forward saying, ‘Get it, get it, get it,’ — it left room for a lot of misinformation that proliferated on the internet,” said Dr. Linda Eckert, a practicing OB-GYN and professor at the University of Washington, who recommended the vaccine right away to her patients.
Dr. Rachael Morris, the obstetric covid director at the University of Mississippi Medical Center, said that during three weeks of the delta variant wave this fall, five mothers died at her hospital. Their babies were all delivered prematurely.
“People just think that [the vaccine]’s not safe and it’s going to harm the baby,” Morris said. “As a physician and as a mother, it’s been tragic.”
Nationwide, more than 250 women have died of covid while pregnant, according to the CDC. Covid carries serious risks for babies, too: Pregnant women with covid are twice as likely to have stillbirths as women without covid, another CDC study found.
In a statement to Grid, the CDC said it “makes recommendations based on the accumulation of scientific evidence. Given that COVID-19 vaccines rolled out in December 2020, safety data looking at the health of pregnant people and babies after vaccinations that were received during the first trimester of pregnancy were not available until late summer 2021.”
A body of observational research has found that vaccination against covid carries no additional risk for miscarriage or other complications. But less than half of women who are pregnant or planning to be pregnant say they are confident in the safety of the covid-19 vaccine, according to a November survey by the Kaiser Family Foundation.
Pregnant people have been bombarded with conflicting information and misinformation since the rollout of vaccines in 2021. Among Black women, who hold a deep mistrust of the healthcare system relative to other racial groups, the problem is acute. They are the least likely of all racial groups to be vaccinated, even after concerted efforts by public health officials to reach them.
As doctors and health officials attempt to convince pregnant patients to get vaccinated, they face the difficult, slow work of building trust among a community that has consumed misinformation that validated existing, even legitimate, fears around medicine and pregnancy. The result is that the majority of vulnerable pregnant patients are heading into a new wave of covid unprotected.
Clinical trials leave out pregnant people
The initial covid vaccine clinical trials did not include pregnant participants, a standard practice in pharmaceutical trials. When vaccines were first approved, leading public health organizations either discouraged, or at least didn’t encourage, getting vaccinated while pregnant until more data was released.
In the months that followed, several large studies examining pregnant women, such as a 35,000-person study by the CDC, indicated the vaccine was safe during pregnancy. Other studies examining fertility and the rates of miscarriage found that people who get vaccinated are as fertile as their unvaccinated counterparts. Still, the CDC didn’t recommend the vaccine for pregnant people until August of 2021, nine months after the Food and Drug Administration first issued emergency approval for the vaccine, frustrating doctors who saw evidence that the vaccine was safe emerging weeks, and even months, earlier.
Advocates hope covid is a turning point for pregnancy and drug trials.
After decades of caution around giving pharmaceuticals to pregnant people, some doctors hope the covid vaccines will spark change.
“There is a fear in general that’s healthy in pregnant individuals of wanting to not put anything in their body that might harm the fetus. And I think that’s a cultural value that’s deeply ingrained and is a good one,” Eckert said.
Eckert and others are urging for that to change. The low vaccination rates and deaths among pregnant women across the country during covid laid bare the serious costs of not testing vaccines and other drugs on pregnant women.
For decades, as clinical trials have grown more regulated and sophisticated, they’ve nearly eliminated pregnant women. Today, an estimated 10 percent of drugs on the market have undergone clinical testing, according to one study.
The practice of excluding pregnant women from research dates back to a global scandal in the early 1960s over thalidomide, a drug developed in Germany that helped treat morning sickness and nausea in pregnant women but caused serious birth defects.
Thalidomide appeared promising based on animal trials, and the drug was brought to market around the world without the highly controlled clinical trials that are standard today. In the U.S., the FDA declined to approve thalidomide, but the manufacturer sent out thousands of samples that doctors prescribed to their patients.
Within a few years, an estimated 10,000 babies across the globe were born with serious ailments, some deadly. Other fetuses exposed to thalidomide — many thousands, some experts believe — were miscarried or stillborn.
The thalidomide scandal led Congress to develop new rules around drug trials, and it helped create a standard (but not a formal regulation) that pregnant women were not included in trials because scientists and manufacturers feared the possibility that medications would cross the placenta and harm fetuses.
For half a century, most drugs approved by the FDA did not include women in initial clinical trials. Even a class of drug like antibiotics, which are often prescribed during pregnancy, has surprisingly few clinical trials showing their safety. Still, 90 percent of women are given one or more drugs while they’re pregnant.
Before covid, other diseases that were particularly harmful to pregnant women — like H1N1 and Ebola — had led doctors to revisit questions of how to safely include pregnant women in trials.
Multiple high-profile panels based out of the FDA and at Johns Hopkins University have come up with frameworks for how to safely and ethically test drugs on pregnant women in recent years, but those new standards haven’t yet been widely adopted.
But for now, doctors are trying to explain as best they can that the benefits of the vaccine outweigh the risks. More studies emphasizing the safety of the vaccine keep coming. A January study of more than 40,000 pregnant women found those who had received the vaccine were at no greater risk of preterm births or low-weight babies than unvaccinated pregnant women.
“We know that it’s not a live vaccine. We know that it doesn’t cross the placenta, and that the mRNA that gives you the recipe to make antibodies is gone in seven days,” said Morris, the OB-GYN at the University of Mississippi. “The fear is in the wrong place. People are fearing the vaccine when they need to be fearing the virus itself.”
Fear spread early about the vaccine and reproductive health
Myths around vaccines and pregnancy started early, when the mRNA vaccines produced by Pfizer and Moderna came onto the market, according to Nicole Woitowich, a research assistant professor in the department of medical social sciences at Northwestern University’s Feinberg School of Medicine.
As designed, mRNA vaccines target the spike protein on the covid-19 virus. That style of vaccine had been in development for a decade but appeared novel when it was harnessed to attack the novel coronavirus. So a myth began spreading that such vaccines would confuse the covid-19 spike protein with syncytin-1, a different spike protein found during the development of human placenta.
That’s not true; the two spike proteins are completely different.
But “all it really took was this one seed of misinformation to snowball, and then kind of grow into this big conspiracy that the mRNA vaccines for covid-19 would cause infertility in women,” Woitowich said.
Now, online misinformation about the impact of coronavirus vaccines on reproductive health takes many forms. Memes warn that vaccines can affect both female and male fertility, and that vaccinated men can sterilize unvaccinated women through sex. Other false claims suggest that the vaccine can induce miscarriage, infect both parent and child with covid-19, and even poison breast milk.
Each of these false beliefs belies the truth, which is that the vaccines are not harmful on pregnancies, and that covid-19 itself has been linked to harmful maternal outcomes.
“They are largely just recycling things that scare people about previous vaccines onto these new vaccines, whether or not it makes scientific sense,” Devon Greyson, health communications professor at the University of Massachusetts Amherst, told France24.
The messages are targeting women because “fertility is just one of those things that we react so strongly to, and it’s so personal,” Greyson added. “So if you’re looking for a bogeyman, ‘It will make you infertile’ is a really good one.”
These myths have been pervasive — and persuasive. According to a November 2021 survey conducted by the Kaiser Family Foundation, 64 percent of women who are pregnant or trying to become pregnant have received a shot, compared with 73 percent of women who are not. Only 39 percent of women in that former category express confidence that the vaccine is safe for pregnant women.
It’s become a significant reason why Americans have refused the vaccine. In October, sports reporter Allison Williams left her job at ESPN, citing concerns over the network’s vaccine mandate as she pursued a second pregnancy. She has since taken a job at the Daily Wire, a conservative news outlet that has been outspokenly critical of vaccine mandates.
As explained above, experts say there is no evidence that the vaccines would affect fertility or pregnancies.
But that information can be easily drowned out in the face of emotional and frightening misinformation.
“Lots of individuals want to build families,” Woitowich said. “And if you’re faced with a decision that … you don’t have the data in front of you to say this is safe or not, or you’re hearing from other sources that it is unsafe, you don’t want to take risks.”
Moreover, Woitowich said, some people have reported changes in their menstrual cycles after receiving their vaccines.
But irregular periods may or may not be the fault of the vaccine itself. Woitowich has copublished a report that found that stress may have contributed to longer and heavier periods for some people. The National Institutes of Health recently committed $1.67 million to studying how covid-19 vaccines interact with menstruation. Experts believe these changes may have to do with the immune response triggered by inoculation.
But without affirmative data, people experiencing irregularities in cycles, heavier bleeding and spotting, including among people who had already been through menopause — or others hearing anecdotes about such experiences — may opt out of vaccination or follow-up boosters.
“Here’s part of the issue where women and people who menstruate are really understudied and under-researched,” Woitowich said. “I really sympathize with these individuals, because we didn’t collect the data in order to give people a heads up to say, ‘You might experience this.’ And while it’s not medically threatening, it really is not comfortable, or can be scary.”
Because misinformation grows in a void, Woitowich advocates for more robust research that accounts for biological and hormonal differences across the gender spectrum, including women and people undergoing hormone replacement. It must account for side effects that cause emotional, if not medical, harm, such as disrupted periods.
“Had we included pregnant women and people in the original studies, maybe there wouldn’t have been as much hesitation — if we had data to point to as the Emergency Use Authorizations came out,” she said. “So much of what we know, and how we practice research and conduct our studies, are focused … from this male-centric perspective.”
There is also a need for one-on-one communication between patients and doctors. Woitowich, who was pregnant with her third child at the time she was interviewed, said that she is eager to share her experience receiving a booster shot — on top of the full vaccination she received earlier — to demonstrate her confidence, as both a pregnant person and a clinician, in the vaccine’s safety.
The long history of medical abuse against Black women
The racial gap between Black and brown communities and other racial groups has narrowed since the early stages of the vaccine rollout, but the disparity has persisted among pregnant people of color.
As of Jan. 1, 25.5 percent of Black pregnant people had received at least one shot, compared with 37.0 percent of Hispanic pregnant people and 42.5 percent of white pregnant people. Only 41.5 percent of pregnant people of all races had received at least one vaccination.
Advocates in the medical community say that historical mistrust of the system is the root cause of vaccine skepticism in the Black community, particularly among women when it comes to their reproductive health. A survey conducted by the Kaiser Family Foundation with the Undefeated and released October 2020 found that 25 percent of Black women polled say they were treated unfairly while getting medical treatment due to their race; 37 percent of Black women with children said the same.
Black women served as the non-consenting subjects for Dr. James Marion Sims’s groundbreaking research in the mid-19th century. Sims, considered the “father of modern gynecology,” performed experiments on about 10 enslaved women. Three women, Betsy, Lucy, and Anarcha, endured dozens of experimental procedures.
“These three had surgeries performed on them with no consent, no anesthesia, for us to be able to enjoy the benefits of a Pap smear today,” said Ndidiamaka Amutah-Onukagha, associate professor of public health and community medicine at Tufts University School of Medicine. “How we know what techniques to use, how we know how to make incisions and heal women’s bodies is all on the backs of these Black women.”
Between the 1920s and 1980s, residents at teaching hospitals across the South practiced their craft by performing unnecessary hysterectomies on poor Black women, according to legal scholar Dorothy Roberts’s book on the history of medical abuse on Black women, “Killing the Black Body: Race, Reproduction, and the Meaning of Liberty.”
The Black community has been subjected to other forms of reproductive harm. Between 1929 and 1973, the North Carolina Eugenics Board targeted minorities for forced sterilization. Black people made up 39 percent of those targeted until the 1960s, when the rate shot up to 60 percent.
Today, Black women are three to four times more likely than white women to die from a pregnancy-related cause, according to the American Medical Association.
“Black women are more likely to be discriminated against, or to have their pain systems ignored or under-treated,” said Amutah-Onukagha. “Obviously what people like to call implicit bias is more likely to play out when Black people enter the healthcare system around labor and delivery.”
That statistic made headlines when Serena Williams shared with Vogue her postnatal experience of fighting with medical staff for treatment of blood clots, which can be deadly.
Doctors, public health researchers and misinformation specialists who were interviewed for this story coalesced around one way to convince pregnant people to get the vaccine: One-on-one conversations between them and people they trust, ideally their doctors.
“I’ll do anything — explain to them what we’ve seen, what we know, how bad covid is. I’ll hear what they’re thinking about. Why they won’t take it,” said Morris, the OB-GYN in Mississippi. “It takes a long time, and you still can’t convince some patients.”
Black vaccination rates improved this summer when vaccine information was shared through trusted community sources, like Black-led churches, Black-owned barbershops and other communities being proactive in dispelling myths about the vaccines.
“People receive information better from people that they know and trust,” Amutah-Onukagha said.
This story has been updated to include a statement from the Centers for Disease Control and Prevention.