Medical Truth and the Fraught Year Ahead

Every summer, leaders of organized medicine convene a forum with trendsetters from academia and industry to discuss the future. For the last six years an existential trend has commanded the collective attention: waning trust in the medical profession. 

Opening this year’s meeting, Richard Baron, CEO of the American Board of Internal Medicine (ABIM) and the ABIM Foundation, made a sobering observation: mistrust is sowing fertile ground for widespread misinformation.   

In healthcare, misinformation is not new. As long as humans have been alive, we’ve been spreading the word—quite often the wrong one—about how to fix what’s broken and heal what hurts. In Ancient Egypt, crocodile feces were said to be effective contraceptives. Thousands of years later, bloodletting—the act of draining blood from the body to try and cure whatever ails it—was preached about and practiced. And well into the 20th century, lobotomies were touted as a fix for a range of psychiatric conditions. 

What may be unique to this moment however are the channels and motives for obscuring medical truth. 

Over the past decade, falsehoods of all types have been on the rise and during the pandemic, they became inescapable. As trust in traditional U.S. media outlets fell to near-record lows, more than half of all American adults reported getting their news from social media networks. Studies showed that those who did were less likely to follow public health guidance and more likely to believe in COVID-related conspiracy theories. 

At the same time, unscrupulous actors became more adept at wielding and even weaponizing new media channels to advance their interests. These capabilities belie an important distinction: misinformation is not necessarily intentional. By contrast, disinformation comes with a motive—typically power, politics, or profit–and it can further erode public trust at a precipitous pace.

Political disinformation is more familiar to most people. Typically used to galvanize an electorate, it can have highly visible, catastrophic consequences. The false claim that the 2020 election was “stolen” spurred an attack against the United States Capitol. In health care, disinformation campaigns are usually less visible and therefore less recognized. But both the tactics and the traction are concerningly similar. 

In 2022 the third biggest advertiser on TikTok after Amazon and HBO was mental health start-up Cerebral, which now faces a Department of Justice investigation for marketing and prescribing Adderall and Xanax indiscriminately. This January, TikTok pulled down Cerebral advertisements that falsely linked ADHD to obesity, but not before addictive medications were prescribed to countless people.

When individuals lie it is one thing but when institutions lie it is quite another. According to my nextdoor neighbor Adam Berinsky who spent the last decade writing a book about this, institutional lying results in a world in which confidently held misinformation becomes shockingly common. Across the political spectrum—including both Democrats and Republicans—Adam found that 70% of us believe at least one of eight political rumors that are demonstrably false. 

Disinformation and Reproductive Health

As the informational chaos of the pandemic laid bare, people who are already in vulnerable positions are disproportionately affected. Some of the most prominent falsehoods about COVID related to sex and reproduction. Multiple instagram stories that attributed the COVID-19 vaccine to infertility went viral. Nicki Minaj claimed in a series of head-scratching tweets that getting vaccinated caused her cousin’s friend to have swollen testicles, and then become impotent, and then get abandoned by his fiance. But as one expert commented, “You can’t fact-check someone’s experience.” 

That may be why misinformation in reproductive health tends to stick. It’s just so personal. And the efforts to spread disinformation seem to be reaching new extremes. 

With the overturn of Roe V Wade, one medical journal referred to the subsequent spread of online falsehoods about abortion as the next “infodemic”. Over the last year, so-called “crisis pregnancy centers” (CPCs) became emboldened in their mission to actively discourage people seeking legal reproductive services. According to the American College of Obstetrics and Gynecology, data from the Center for Countering Digital Hate indicate that 71% of CPCs use deceptive digital marketing to get people in the door. 

Disinformation campaigns pervade other areas of reproductive health as well. Many fertility vendors advertise scientifically dubious supplements and services, selling false hope to acquire customers. I’ll share just a few examples: according to this meta-analysis, a supplement that is frequently hawked at people who are struggling with fertility does not actually improve live birth rates. According to this decade-and-a-half-long cohort study, egg freezing is not valuable for many of the people it is sold to. And a previous Preprint promised to delve deeper into questionable ethical practices in the sperm freezing industry—but New York Magazine did the work for me. 

It’s not just new entrants to the reproductive health market that are culpable. Well-established brands and institutions are responsible too. A trusted provider of at-home pregnancy and fertility tests for decades in 2023 made a hasty foray into Menopause with a product that stretches credibility—or at least clinical utility—by claiming to indicate a person’s “likely stage” of menopause. 2023 is also the year that the FDA pulled approval for Makena, the only medication for preterm birth prevention on the market. Its effectiveness was always questionable but mounting evidence led to the withdrawal only after its manufacturer had earned hundreds of millions of dollars.

Disinformation and Medical Responsibility

Clinical training requires a command of scientific facts. But for many clinicians used to standing on solid ground, the last few years have felt like sinking in quicksand. How is it, I’m often asked, that as science and medicine continue to advance our knowledge, our means of deploying that knowledge seem to be deteriorating?

My answer, paraphrased from Atul Gawande’s excellent BBC 4 Reith lecture: we’ve gotten so good at understanding the human body at the molecular level that we’ve obscured our central challenge—to put the pieces back together again in a way that allows us to affirm, to empathize, to humanize those we are caring for. This implies a strong element of medical responsibility.

For entire swaths of the population—women, people of color, and especially women of color—their pain is minimized, their symptoms are dismissed, their care is inaccessible or unaffordable (and often a source of debilitating debt), their doctors don’t look like them, even the illnesses they suffer from disproportionately remain under-researched. 

No wonder so many seek information outside the House of Medicine. No wonder they turn to alternative sources of truth. No wonder they believe the influencer on TikTok who claims to see them and speaks to them, when the credentialed healthcare professionals they’ve been seen by for their entire lives have largely spoken down to or over them. 

In reproductive health, it can be comforting to think we left the worst of misinformation behind in the last century—when cocaine was an ingredient in tampons, radiation was used in treatments to remove unwanted hair, and lysol was marketed for “feminine hygiene.” But in some cases we may have traded old forms of snake oil for new ones.

Addressing disinformation is complicated and I don’t pretend to have the solution. Amid a divisive election year and uncertain economy, I fear the challenges will only become starker. In future Preprints we’ll continue to explore what it means to be an honest broker. I’ll interview and aim to learn from those who do this well–suggestions are welcome!

I will say this: it seems a good start to try and understand why people seek out alternate sources of truth in the first place, especially when they’ve been let down by medical professionals in the past. If we fail to acknowledge that truth, we risk peddling misinformation ourselves—and we lose the battle against it before it’s begun. 

Summer Roundup

It’s been a minute since the last Preprint! Here’s a sampling of what my team has been reading, considering and building against:

• ICYMI, in June Olympian Allyson Felix penned a powerful byline in Time, following the death of her teammate Tori Bowie of complications related to childbirth. Three gold medalists from that 4 x 100m relay race in Rio are mothers–all three suffered serious complications.

• Aftershock, a film on the Black maternal mortality crisis that I am so proud to be part of, won the Peabody Award and has been nominated for an Emmy! 

• My former colleague Lauren Spigel, now a PhD candidate at the University of North Carolina, Chapel Hill, tracked her experience during the first year of parenting: all the interrupted sleep, all of the time she spent nursing, pumping, or missing work due to childcare. The graph from her last week of maternity leave is remarkable. 

• Katherine Wu wrote in the Atlantic about how the human fertility calendar is changing. Most species have a seasonal pattern in birth timing. Until recently humans did too (potentially with biological advantages like avoiding predators and viruses). But a complex mix of environmental changes, social constructs, and technology may make seasonal birth among humans a relic of the past.

• Just this weekend, the New York Times reported on an unfortunate, regressive policy in Alabama that shuttered a birthing center where many had sought refuge. We were proud of our MPact for Families grantee Chocolate Milk Mommies who were mentioned in the article for their leadership on the ground.

• Lastly, this is a HUGE deal: through the Veterans Administration, maternity coordinators will now be available to moms who served for the full year after they deliver their baby.