The problem has gotten particularly acute with a recent wave of misinformation. And when Francis Collins led the National Institutes of Health, the world’s premier medical research agency, he thought he had a solution: to study health communications broadly. “We basically have seen the accurate medical information overtaken, all too often, by the inaccurate conspiracies and false information on social media. It’s a whole other world out there,” he said in 2021 as part of a farewell media tour.

“I do think we need to understand better how — in the current climate — people make decisions,” he concluded.

But Collins’ hopes appear dashed. In a sudden reversal, the NIH’s acting director, Larry Tabak, has paused — some say killed — the planned initiative, Advancing Health Communication Science and Practice. Its advocates fear the agency has, for political reasons, censored itself — and the science that would’ve sprung out of this funding stream.

The agency has offered shifting and inconsistent explanations, sometimes outright contradicting itself in the space of days. Sources familiar with the project insist that whatever the agency’s official story, it has acted unusually, contrary to its normal procedures in deciding what science to fund.

The officials, both in and outside of NIH, believe the agency is acting in response to political pressures over misinformation and is effectively censoring itself. Efforts to study or push back on inaccurate information have become contentious. The Republican-controlled House of Representatives repeatedly has plunged into the issue by investigating social media firms and government agencies for their efforts to regulate online speech. They’ve even targeted academics who merely study information flows online. Meanwhile, in July, a federal court in Louisiana issued a decision on a long-simmering lawsuit brought by a group of Republican attorneys general and anti-vaccine groups to block government officials from communicating with social media companies, with certain exceptions for national security and criminal matters. That ruling has since been stayed.

Even though the NIH has had to navigate political rapids for decades, including enduring controversy over stem cell research and surveys on the sexual behavior of teens, this is a particularly fraught moment. “It is caught up in a larger debate about who gets to decide what is truthful information these days,” said Alta Charo, a professor emerita of law and bioethics at the University of Wisconsin-Madison who has advised the NIH in the past.

For researchers interested in the topic, however, it’s a major loss. The program was deemed potentially so important that it would be supported through the agency’s Common Fund: a designation for high-priority programs that cut across normal institutional boundaries. In theory, it would study how health communication works, not merely at an individual doctor-to-patient level, but also how mass communication affects Americans’ health. Researchers could examine how, for example, testimonials affect patients’ use of vaccines or other therapies.

Serious money was on the table. The agency was prepared to spend more than $150 million over five years on the endeavor.

For researchers, it’s a necessary complement to the agency’s pioneering work in basic research. The NIH has “done a remarkable job discovering the way cells communicate with each other,” said Dean Schillinger, a researcher at the University of California-San Francisco. “When it comes to how people communicate to each other — doctors to patients, or doctors with each other — the NIH has been missing in action.” Now, he said, the tentative efforts to reverse that are met with a “chilling effect.” (Schillinger co-authored an opinion piece in JAMA on these developments.)

After favorable reports from an agency’s advisory body last fall, advocates were anticipating more encouraging developments. Indeed, the NIH’s budget had touted the concept as recently as March. And participants expected the grant application process would begin toward the end of the year.

Instead, researchers have heard nothing through official channels. “Investigators have been asking, ‘What’s the plan?’” said Schillinger. Officially, “it’s been the sound of silence, really.”

That has been a puzzling anticlimax for a program that seemed to have all the momentum. “Given the urgency of misinformation, you would expect — within a year — a formal announcement,” said Bruce Y. Lee, the executive director of the City University of New York’s Center for Advanced Technology and Communication in Health.

Advocates and sources involved with the process had been pleased with its progress leading up to Tabak’s sudden reversal. After Collins publicly floated the concept in late 2021, the agency took some public steps while defining the project, including holding a workshop in May 2022, keynoted by Collins.

Later that year, the project’s leaders presented the concept to the agency’s Council of Councils, a group of outside researchers who provide feedback on policy initiatives and projects. It got a warm reception.

Edith Mitchell, an oncologist at Thomas Jefferson University Hospital in Philadelphia, said the agency had a “major task, but one that is much needed, one that is innovative.” The council gave the proposal a 19-1 seal of approval.

Researchers were happy. “As far as I was concerned, this program had been funded, accepted, and approved,” Schillinger said. (The agency says that it is “not unusual” for programs not to move forward but that it does not track how frequently programs get affirmative votes from the council and later don’t move forward.)

That smooth sailing continued into the new year. In March, the program was mentioned in the NIH budget as one of the agency’s potential projects for the coming years. Then, say sources in NIH and elsewhere in government, came Tabak’s sudden decision in April, which was not communicated to some researchers until June.

Early that month, Schillinger said, he received a call from an NIH official saying, “The program has been killed.” Program officers were reaching out to academics who had made prior inquiries about the initiative and potential research efforts that could garner grants. Schillinger said researchers were told, “You’re not getting an email” from the agency.

A former White House staffer and two current NIH officials — who were granted anonymity because they didn’t have permission to speak on sensitive matters — said the decision, which came as researchers and agency officials were preparing to open grant applications in the last quarter of the year, was made by Tabak. KFF Health News asked Tabak for an interview but instead got an answer from agency spokespeople.

The agency disputes any final decision about this research funding that has been made. Spokesperson Amanda Fine told KFF Health News the project was “still in concept phase” and is “being paused to consider its scope and aims.”

But the agency lists the health communications proposal on the “former programs” part of its website, and sources inside and outside of government disagree with this company line. They point to political fears on NIH’s part as driving the change, which reflects the growing political controversy over studying anything related to misinformation, even though the proposal was set up to examine health communications broadly, not solely misinformation.

A hint of this reasoning is contained in the rest of Fine’s statement, which notes the “regulatory and legal landscape around communication platforms.” When pressed, the agency later cited unnamed “lawsuits.”

That’s likely a reference to the Louisiana case, which was decided weeks after the agency decided to pause or kill the Common Fund initiative.

Fine later offered a new explanation: budgetary concerns. “We must also balance priorities in view of the current budgetary projections for fiscal years 2024 and 2025,” she wrote.

That explanation wasn’t part of a June 6 note on the program page, and one NIH official confirmed it wasn’t part of previous discussions. When pressed further about the agency’s budgetary position — which analysts with TD Cowen’s Washington Research Group think will be flat — spokesperson Emily Ritter said, “The NIH does not have a budget projection.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

“I would describe this year as hand-to-hand combat. Really, every day,” he said at an academic conference at Stanford in April. It’s a sentiment the FDA commissioner has expressed often.

What’s been getting Califf’s goat? Misinformation, which gets part of the blame for Americans’ stagnating life expectancy. To Califf, the country that invents many of the most advanced drugs and devices is terrible at using those technologies well. And one reason for that is Americans’ misinformed choices, he has suggested. Many don’t use statins, vaccines, or covid-19 therapies. Many choose to smoke cigarettes and eat the wrong food.

Califf and the FDA are fighting misinformation head-on. “The misinformation machine is really causing a lot of death,” he said, in an apparent ad-lib, this spring in a speech at Tufts University. The pandemic, he told KFF Health News, helped “crystallize” his need to tackle misinformation. It was a “blatant case,” in which multiple studies gave evidence about very effective therapeutics against covid. “And a lot of people chose not to do it.” There were “large-scale purveyors of misinformation,” he said, poisoning the well.

Occasionally, though, Califf and the FDA have added to the cacophony of misinformation. And sometimes their misinformation is about misinformation.

Califf hasn’t been able to consistently estimate misinformation’s public health toll. Last June, he said it was the “leading cause of meaningful life-years lost.” In the fall, he told a conference: “I’ve been going around saying that misinformation is the most common cause of death in the United States.” He continued, “There is no way to prove that, but I do believe that it is.”

At other times, as in April, he has called the problem the nation’s “leading cause” of premature death. “I’ll keep working on this to try and get it right,” he said. Later, in May, he said, “Many Americans die or experience serious illness every year due to bad choices driven by false or misleading information.”

Americans’ health is indeed in dire straits. The Centers for Disease Control and Prevention noted the country’s life expectancy has dropped two years in a row — it’s at 76.1 years as of 2021 — a dismal capper to four decades of lagging gains. Countries such as Slovenia, Greece, and Costa Rica outrank the U.S. Their newborn citizens are expected to live more than 80 years, according to the Organization for Economic Co-operation and Development.

Several factors are at the root of those differences. But Americans’ choices, often informed by bad or misleading data, political jeremiads, or profit-seeking advertising, are among the causes. For instance, one 2023 paper estimated that undervaccination against covid — caused in part by misinformation — costs as much as $300 million per day, accounting for both the costs of health care and economic costs, like missed work.

Outside experts are sympathetic. Misinformation is a “huge problem for public health,” said Joshua Sharfstein, a Johns Hopkins University public health professor and former FDA principal deputy commissioner. Having a strategy to combat it is crucial. But, he cautioned, “that’s the easiest part of this.”

The agency, which regulates products that consumers spend 20 cents of each dollar on per year, is putting more muscle behind the effort. It’s begun mentioning the subject of misinformation in its procurement requests, like one discussing the need to monitor social media for misinformation related to cannabis.

The agency launched a “Rumor Control” page seeking to debunk persistent confusion. It also expects to get a report from the Reagan-Udall Foundation, a not-for-profit organization created by Congress to advise the FDA. Califf has said he thinks better regulation — and more authority for the agency — would help.

Califf has noted small victories. Ivermectin, once touted as a covid wonder drug, “eventually” became one such win. But, then again, its use is “not completely gone,” he said. And, despite winning individual battles, his optimism is muted: “I’d say right now the trend in the war is in a negative direction.”

Some of those battles have been quite small, even marginal.

And it’s difficult to know what to take on or respond to, Califf said. “I think we’re just in the early days of being able to do that,” he told KFF Health News. “It’s very hard to be scientific,” he said.

Take the agency’s experience last fall with “NyQuil chicken” — a purportedly viral cooking trend in which users roasted their birds in the over-the-counter cold medicine on social media platforms like TikTok.

Califf said his agency’s “skeleton crew” — at least relative to Big Tech giants — had picked up on increasing chatter about the meme.

But independent analyses don’t corroborate the claim. It seems much of the interest in it came only after the FDA called attention to it. The day before the agency’s pronouncement, the TikTok app recorded only five searches on the topic, BuzzFeed News found in an analysis of TikTok data. That tally surged to 7,000 the week after the agency’s declaration. Google Trends, which measures changes in the number of searches, shows a similar pattern: Interest peaked on the search engine in the week after the agency announcement.

Califf also claimed “injuries” occurred to participants “directly” due to the social media trend. Now, he said, “the number of injuries is down,” though he couldn’t say whether the agency’s intervention was the cause.

Again, his assertions have fuzzy underpinnings. It’s not clear what, if any, actual damage the NyQuil chicken fad caused. Poison control centers don’t keep that data, said Maggie Maloney, a spokesperson for America’s Poison Centers. And, after multiple requests, agency spokespeople declined to provide the FDA’s data reflecting increased social media traffic or injuries stemming from the meme.

In countering misinformation, FDA also risks coming off as high-handed. In September 2021, the agency tweeted about purported myths and misinformation on mammograms. Among the myths? That they’re painful. Instead, the agency explained that “everyone’s pain threshold is different” and the breast cancer-screening procedure is more often described as “temporary discomfort.”

Statements like these “erode trust,” said Lisa Fitzpatrick, an infectious diseases physician and currently the CEO of Grapevine Health, a startup trying to improve health literacy in underserved communities. Fitzpatrick has previously served as an official with the District of Columbia’s Medicaid program and with the CDC.

“Who are you to judge what’s painful?” she asked, rhetorically. It’s hard to brand subjective impressions as misinformation.

Califf acknowledged the point. Speaking to 340 million Americans is difficult. With mammograms, the average patient might not have a painful experience — but many might. “Getting across that kind of nuance and public communication, I think, is in its early phases.”

Scrutiny over the agency’s role regarding food and nutrition is also mounting. After independent journalist Helena Bottemiller Evich wrote an article criticizing the agency for relying on voluntary reporting standards for baby formula, Califf tweeted to correct a “bit of misinformation,” saying the agency did not have such authority.

An agency communications specialist made a similar intervention with New York University professor Marion Nestle, referring to a “troubling pattern of articles with erroneous information that then get amplified.” The agency was again seeking to rebut arguments that the agency had erred in not seeking mandatory reporting.

“As I see it, the ‘troubling pattern’ here is FDA’s responses to advocates like me who want to support this agency’s role in making sure food companies in general — and infant formula companies in particular — do not produce unsafe food,” Nestle retorted. Notwithstanding the agency’s protests to Evich and Nestle, the agency had only recently asked for such authority.

Efforts to respond to or regulate misinformation are becoming a political problem.

In July, a federal judge issued a sweeping, yet temporary, injunction — at the instigation of Republican attorneys general, multiple right-wing political groups, and prominent anti-vaccine advocate Robert F. Kennedy Jr.’s Children’s Health Defense — barring federal health officials from contacting social media groups to correct information. A large section of the ruling detailed efforts by a CDC official to push back on suspected misinformation on social media networks.

An appeals court later issued its own temporary ruling — this time countering the original, sweeping order — nevertheless underscoring the extent of pushback on government pushback against misinformation. Califf has consistently played down the government’s ability to solve the problem. “One hundred percent of experts agree, government cannot solve this. We have too much distrust in fundamental institutions,” he said last June.

It’s a remarkable change from his previous tenure leading the agency during the Obama administration. “I would describe the Obama years as genteel, intellectual, and a lot of fun,” he has said. Now, however, Califf is bracing for more misinformation. “It’s just something that I think we have to come to grips with,” he told KFF Health News.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Over the course of the pandemic, lawsuits came from every direction, questioning public health policies and hospitals’ authority. Petitioners argued for care to be provided in a different way, they questioned mandates on mask and vaccine use, and they attacked restrictions on gatherings.

Historically, “there’s been nothing but a cascade of supportive deference to public health,” said Lawrence Gostin, a professor specializing in public health law at Georgetown University. That changed during the pandemic. “It’s the opposite. It’s been a torrent.”

Even as covid-19 wanes, lawyers representing the health care sector predict their days in court aren’t about to end soon. A group of litigators and media companies, among others, are eyeing policy changes and even some profits from yet more lawsuits.

Because such groups can reach millions of people, public health advocates like Gostin and Brian Castrucci, president of the de Beaumont Foundation, a public health nonprofit, suggest that the result, beyond creating legal setbacks, could spread more misinformation about their work. The imprimatur of a lawsuit, they think, can help spread vaccine skepticism or other anti-public health beliefs, if only through news coverage. “You know, lawsuits have a galvanizing effect,” Gostin said. “They tend to shape public opinion.”

Lawyers are organizing to promote their theories. Late in March, a group of them gathered in Atlanta for a debut Covid Litigation Conference to swap tips on how to build such cases. “Attention, Atlanta lawyers!” proclaimed an ad promoting the event. “Are you ready to be a part of the fastest-growing field of litigation?”

The conference was sponsored in part by the Vaccine Safety Research Foundation, which was established on vaccine-skeptical views. The gathering promised to share legal strategies for suing federal and state public health agencies over covid policies, as well as hospitals and pharmaceutical firms for alleged malfeasance.

It’s the sort of thing that has people like Gostin paying attention. “It’s very worrisome,” he said. Even if lawsuits don’t succeed, it could make hospitals and public health officials gun-shy, he said. At the height of the pandemic, lawyers were successfully forcing hospitals to administer ivermectin to treat covid — despite many gold-standard, randomized, controlled trials demonstrating it wasn’t particularly useful.

The conference was a good way to meet like-minded advocates, explained Steven Warshawsky, a New York lawyer who attended. “There’s networking and an effort to create a legal community that’s knowledgeable,” he said. And colleagues can also “spread the word about different legal angles.” Indeed, panels covered subjects ranging from licensure to hospital negligence, and allegations of vaccine injuries.

The conference was organized by Steve Kirsch, a wealthy San Francisco Bay Area tech executive, who describes himself as a “truth teller” regarding covid vaccines and policies. He has persistently raised questions about masks and vaccines and other standard public health measures. The conference, he said, is meant to help encourage lawyers to further that stance. He said he hopes that “the lawyers are successful in getting large settlements” because “it will incentivize other lawyers” to bring their own suits against pharmaceutical firms and government agencies alike.

He’s been known to tweet about situations in which he, an unmasked person, encountered masked counterparts. For example, during a flight, he offered $100,000 to an airplane seatmate to remove her mask. (He said he did it to test the level — and potential hypocrisy — of people’s attachment to masks.)

Kirsch’s legal entrepreneurism is on full display in his newsletter: Individuals seeking his comments can check boxes if they are lawyers who would represent him in various lawsuits against the federal government on vaccine-related issues.

Visitors can also book his time in 15-minute increments, at $500 a pop; subscriptions to his newsletter — of which he claims “tens of thousands” — are $50 a year. (He says he donates the subscription income.)

The lawyers’ conference attracted speakers well known in the covid litigation world. One, Robert Malone, did early work on messenger RNA and has now grown skeptical over alleged defects in covid vaccines. (They’ve been approved by the FDA after large trials.) Malone and other plaintiffs threatened Twitter last year with a lawsuit seeking to reverse a ban on spreading misinformation. After taking a media tour, he’s now back on the social media network.

For public health officials, it’s not merely the potential outcome of the courts’ rulings but also the publicizing of the theories that poses a risk.

“Even one win, despite countless losses, for some will provide supposed evidence and vindication that questions need to be answered, liability needs to be assigned, or a wrong needs to be righted,” Castrucci told KFF Health News. “But the decision of any one trial can’t and shouldn’t supplant the findings of clinical trials enrolling nearly 70,000 Americans.”

“I think this is part of a grander destabilization of public health, through the judicial system,” Castrucci said.

Readers wanting to connect favored theories to courtroom drama through the media have no lack of opportunity. Take The Daily Wire, an online publication featuring conservative political commentator Ben Shapiro. The company was a plaintiff in one federal lawsuit, part of a barrage of successful litigation, challenging the Occupational Safety and Health Administration’s policy of giving large businesses an option of either requiring their employees to get vaccinated or test weekly for covid. The regulation was stymied by the Supreme Court and later withdrawn by the agency.

The lawsuit served a second purpose. It provided a continual, evolving theme for Facebook ads promoting the outlet’s fight — and asking viewers to subscribe, sign petitions, or purchase merchandise. In a November 2021 ad, Shapiro asserted there was “no bigger fan” of vaccines than he. But any pro-vaccine claim was not a centerpiece of future ads, which inveighed against mandates, vaccine passports, and the like. The Daily Wire claimed in February 2022 that it was bringing in $100 million in annual revenue.

The publication made covid messaging, particularly around lawsuits or legal matters, a frequent theme of its advertising. One ad, for example, mentioned how police were enforcing vaccine passports in “certain cities” — it didn’t specify which cities. But The Daily Wire published an article about police checking such passports in Paris, not the United States. The media outlet didn’t respond to multiple requests for comment.

In all, KFF Health News found the publication had at least 10 million ad impressions on Meta platforms — Facebook and Instagram — from October 2021 to February 2023 concerning lawsuits, mandates, lab leaks, and other covid-related topics.

Earlier, conservative media groups were happy to contribute by writing amicus briefs in support of certain cases. But there’s now plenty of right-wing voices trying to seize an audience, said A.J. Bauer, an assistant professor of journalism studying conservative media at the University of Alabama. “We’re seeing an oversaturated media space, with a lot of competition,” especially on the right, Bauer said. As such, he said, they need to stand out — even if it means embracing “stunts,” like participating directly in lawsuits.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

And CVS is not the only pharmacy sharing this kind of sensitive data.

We found trackers collecting browsing- and purchase-related data on websites of 12 of the U.S.’ biggest drugstores, including grocery store chains with pharmacies, and sharing the sensitive information with companies like Meta (formerly Facebook); Google, through its advertising and analytics products; and Microsoft, through its search engine, Bing.

The tracking tools, popularly called “pixels,” collect information while a website runs. That information is often sent to social media firms and used to target ads, either to you personally or to groups of people that resemble you in demographics or habits. In previous investigations, The Markup found pixels transmitting information from the Department of Education, prominent hospitals, telehealth startups, and major tax preparation companies.

Pharmacy retailer websites’ pixels send a shopper’s IP address — a sort of mailing address for a person’s computer or household internet — to social media giants and other firms. They also send cookies, a way of storing information in a user’s browser that in this case helps track a user from page to page as the user browses a retailer’s site. Cookies can sometimes also associate individuals on a site with their account on a social media platform. In addition to the IP address and cookies, the pixels often send information about what you’ve clicked or bought, including sensitive items, such as HIV tests.

“HIV testing is the gateway to HIV prevention and treatment services,” said Oni Blackstock, the founder of Health Justice and a former assistant commissioner for the New York City Bureau of HIV/AIDS Prevention and Control, in an interview.

“People living with HIV should have control over whether someone knows their status,” she said.

Many retailers shared other detailed interaction data with advertising platforms as well. Ten of the retailers we examined alerted at least one tech platform when shoppers clicked “add to cart” as they shopped for retail goods, a capacious category that included sensitive products like prenatal vitamins, pregnancy tests, and Plan B emergency contraception.

Supermarket giant Kroger, for instance, informed Meta, Bing, Twitter, Snapchat, and Pinterest when a shopper added Plan B to the cart, and informed Google and Nextdoor, a social media platform on which people from the same neighborhood gather in forums, that a shopper had visited the page for the item. Walmart informed Google’s advertising service when a shopper browsed the page of an HIV test, and Pinterest when that shopper added it to the cart.

A previous investigation from The Markup found that Kroger used loyalty cards to track, analyze, and sell an array of data about customers to advertisers.

Using Chrome DevTools, a tool built into Google’s Chrome browser, The Markup and KFF Health News visited the websites of 12 of the U.S.’ biggest drugstores and examined their network traffic. This monitoring tool allowed us to see what information about shopping habits and, in some cases, prescriptions, were sent to third parties.

Over the course of the investigation, retailers frequently changed their trackers — sometimes activating them, sometimes removing them. Some retailers appeared to be taking steps to limit tracking on sensitive items.

For example, Walgreens’ website prevented some trackers from activating on the pages of some products, which included Plan B and HIV tests. This code didn’t prevent all tracking, though: Walgreens’ site continued sending Pinterest information about those sensitive items a user added to the cart.

Walgreens shared a new policy after learning of The Markup and KFF Health News’ findings. Spokesperson Fraser Engerman said that while the chain already had a “robust privacy program,” it would no longer share browsing data related to reproductive health and HIV testing. Engerman also told us that “Pinterest confirmed that the data will be deleted and that it has not been used for advertising purposes.” Crystal Espinosa, a spokesperson for Pinterest, said the company “can confirm that we will be deleting the data Walgreens requested.”

The Pharmacy vs. the Pharmacy Aisle

In the U.S., drugstores and grocery stores with associated pharmacies are only partially covered by the Health Insurance Portability and Accountability Act, or HIPAA. The prescriptions picked up from the pharmacy counter do have this protection.

But in a separate section, sometimes confusingly called the pharmacy aisle, stores also often sell over-the-counter medications, tests, and other health-related products. Consumers might think such purchases have similar protections to their prescriptions, but HIPAA only covers the pharmacy counter’s clinical operations, such as dispensing prescriptions and answering patients’ questions about medication.

This distinction can be confusing enough inside the brick-and-mortar location of a retailer. But the line can become even harder to make out on a website, which lacks the clarifying delineations of physical space.

What’s more, descriptions about what will happen with retail data are generally in retailers' privacy policies, which can usually be found in a link at the bottom of their webpages. The Markup and KFF Health News found them murky at best, and none of them were specific about the parts of the site that were covered by HIPAA and the parts that weren’t.

In the “Privacy Notice for California Residents” part of its privacy policy, Kroger says it processes “personal information collected and analyzed concerning a consumer’s health.” But, the policy continues, the company does not “sell or share” that information. Other information is sold: According to the policy, in the last 12 months, the company sold or shared “protected classification characteristics” to outside entities like data brokers.

Kroger spokesperson Erin Rolfes said the company strives to be transparent and that, “in many cases, we have provided more information to our customers in our privacy notices than our peers.”

Brokering of general retail data is widespread. Our investigation found, though, that some websites shared sensitive clinical data with third parties even when that information would be protected at a HIPAA-covered pharmacy counter. Users attempting to schedule a vaccine appointment at Rite Aid, for example, must answer a survey first to gauge eligibility.

This investigation found that Rite Aid has sent Facebook responses to questions such as:

• Do you have a neurological disorder such as seizures or other disorders that affect the brain or have had a disorder that resulted from a vaccine?
• Do you have cancer, leukemia, AIDS, or any other immune system problem?
• Are you pregnant or could you become pregnant in the next three months?

The Markup and KFF Health News documented Rite Aid sharing this data with Facebook in December 2022. In February of this year, a proposed class-action lawsuit based on similar findings was filed against the drugstore chain in California, alleging code on Rite Aid’s website sent Facebook the time of an appointment and an identifier for the appointment location, demographic information, and answers to questions about vaccination history and health conditions. Rite Aid has moved to dismiss the suit.

After the lawsuit was filed, The Markup and KFF Health News tested Rite Aid’s website again, and it was no longer sending answers to vaccination questions to Facebook.

Rite Aid isn’t the only company that sent answers to eligibility questionnaires to social media firms. Supermarkets Albertsons, Acme, and Safeway, which are owned by the same parent company, also sent answers to questions in their vaccination intake form — albeit in a format that requires cross-referencing the questionnaire’s source code to reveal the meaning of the data.

Using the Firefox web browser’s Network Monitor tool, and with the help of a patient with an active prescription at Rite Aid, KFF Health News and The Markup also found Rite Aid sending the names of patients’ specific prescriptions to Facebook. Rite Aid kept sharing prescription names even after the company stopped sharing answers to vaccination questions in response to the proposed class action (which did not mention the sharing of prescription information). Rite Aid did not respond to requests for comment, and as of June 23, the pixel was still present and sending the names of prescriptions to Facebook.

Other companies shared data about medications from other parts of their sites. Customers of Sam’s Club and Costco, for example, can search names of prescriptions on each retailer’s website to find the local pharmacy with the cheapest prices. But the two websites also sent the name of the medication the user searched for, along with the user’s IP address, to social media companies.

Many of the retailers The Markup and KFF Health News looked at did not respond to questions or declined to comment, including Costco and Sam’s Club. Albertsons said the company “continually” evaluates its privacy practices. CVS said it was compliant with “applicable laws.”

Kroger’s Rolfes wrote that the company’s “trackers disclose product information, which is not sensitive health information unless one or more inferences are made. Kroger does not make any inferences linking the product information collected or disclosed by trackers to an individual’s health condition.”

A Huge Regulatory Challenge

Pharmacies are just one facet of a huge health care sector. But the industry as a whole has been roiled by disclosures of tracking pixels picking up sensitive clinical data.

After an investigation by The Markup in June 2022 found widespread use of trackers on hospital websites, regulatory and legal attention has homed in on the practice.

In December, the Department of Health and Human Services’ Office for Civil Rights published guidance advising health providers and insurers how pixel trackers’ use can be consistent with HIPAA. “Regulated entities are not permitted to use tracking technologies in a manner that would result in impermissible disclosures” of protected health information to tracking technology or other third-party vendors, according to the official bulletin. If implemented, the guidance would provide a path for the agency to regulate hospitals and other providers and fine those who don’t follow it. In an interview with an industry publication in late April, the director of the Office for Civil Rights said it would be bringing its first enforcement action for pixel use “hopefully soon.”

Lobbying groups are seeking to confine any regulatory fallout: The American Hospital Association, for example, sent a letter on May 22 to the Office for Civil Rights asking that the agency “suspend or amend” its guidance. The office, it claimed, was seeking to protect too much data.

This year the Federal Trade Commission has pursued action against companies like GoodRx, which offers prescription price comparisons, and BetterHelp, which offers online therapy, for alleged misuse of data from questionnaires and searches. The companies settled with the agency.

Health care providers have disclosed to the federal government the potential leakage of nearly 10 million patients’ data to various advertising partners, according to a review by The Markup and KFF Health News of breach notification letters and the Office for Civil Rights’ online database of breaches. That figure could be a low estimate: A new study in the journal Health Affairs found that, as of 2021, almost 99 percent of hospital websites contained tracking technologies.

One prominent law firm, BakerHostetler, is defending hospitals in 26 legal actions related to the use of tracking technologies, lawyer Paul Karlsgodt, a partner at the firm, said during a webinar this year. “We’ve seen an absolute eruption of cases,” he said.

Abortion- and pregnancy-related data is particularly sensitive and driving regulatory scrutiny. In the same webinar, Lynn Sessions, also with BakerHostetler, said the California attorney general’s office had made specific investigative requests to one of the firm’s clients about whether the client was sharing reproductive health data.

It’s unclear whether big tech companies have much interest in helping secure health data. Sessions said BakerHostetler had been trying to get Google and Meta to sign so-called business associate agreements. These agreements would bring the companies under the HIPAA regulatory umbrella, at least when handling data on behalf of hospital clients. “Both of them, at least at this juncture, have not been accommodating in doing that,” Sessions said. Google Analytics’ help page for HIPAA instructs customers to “refrain from using Google Analytics in any way that may create obligations under HIPAA for Google.”

Meta says it has tools that attempt to prevent the transfer of sensitive information like health data. In a November 2022 letter to Sen. Mark Warner (D-Va.) obtained by KFF Health News and The Markup, Meta wrote that “the filtering mechanism is designed to prevent that data from being ingested into our ads.” What’s more, the letter noted, the social media giant reaches out to companies transferring potentially sensitive data and asks them to “evaluate their implementation.”

“I remain concerned the company is too passive in allowing individual developers to determine what is considered sensitive health data that should remain private,” Warner told The Markup and KFF Health News.

Meta’s claims in its letter to Warner have been repeatedly questioned. In 2020, the company itself acknowledged to New York state regulators that the filtering system was “not yet operating with complete accuracy.”

To test the filtering system, Sven Carlsson and Sascha Granberg, reporters for SR Ekot in Sweden, set up a dummy pharmacy website in Swedish, which sent fake, but plausible, health data to Facebook to see whether the company’s filtering systems worked as stated. “We weren’t warned” by Facebook, Carlsson said in an interview with KFF Health News and The Markup.

Carlsson and Granberg’s work also found European pharmacies engaged in activities similar to what The Markup and KFF Health News have found. The reporters caught a Swedish state-owned pharmacy sending data to Facebook. And a recent investigation with The Guardian found the U.K.-based pharmacy chain LloydsPharmacy was sending sensitive data — including information about symptoms — to TikTok and Facebook.

In response to questions from KFF Health News and The Markup, Meta spokesperson Emil Vazquez said, “Advertisers should not send sensitive information about people through our Business Tools. Doing so is against our policies and we educate advertisers on properly setting up Business Tools to prevent this from occurring. Our system is designed to filter out potentially sensitive data it is able to detect.”

Meta did not respond to questions about whether it considered any of the information KFF Health News and The Markup found retailers sending to be “sensitive information,” whether any was actually filtered by the system, or whether Meta could provide metrics demonstrating the current accuracy of the system.

In response to our inquiries, Twitter sent a poop emoji, while TikTok and Pinterest said they had policies instructing advertisers not to pass on sensitive information. LinkedIn and Nextdoor did not respond.

Google spokesperson Jackie Berté said the company’s policies “prohibit businesses from using sensitive health information to target and serve ads” and that it worked to prevent such information from being used in advertising, using a “combination of algorithmic and human review” to remedy violations of its policy.

KFF Health News and The Markup presented Google with screenshots of its pixel sending the search company our browsing information when we landed on the retailers’ pages where we could purchase an HIV test and prenatal vitamins, and data showing when we added an HIV test to the cart. In response, Berté said the company had “not uncovered any evidence that the businesses in the screenshots are violating our policies.”

KFF Health News uses the Meta Pixel to collect information. The pixel may be used by third-party websites to measure web traffic and performance data and to target ads on social platforms. KFF Health News collects page usage data from news partners that opt to include our pixel tracker when they republish our articles. This data is not shared with third-party sites or social platforms and users' personally identifiable information is not recorded or tracked, per KFF's privacy policy. The Markup does not use a pixel tracker. You can read its full privacy policy here.

This article was co-published with The Markup, a nonprofit newsroom that investigates how powerful institutions are using technology to change our society. Sign up for The Markup's newsletters.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

“Tearing down all these institutions of power. It gives me glee,” said one of his boosters in tech, Chamath Palihapitiya, a garrulous former Facebook executive, nearly two hours into a May episode of the popular “All-In” podcast he co-hosts with other tech luminaries. The person who might help with the demolition was the show’s guest, Kennedy himself.

“Me too,” responded David Sacks, Palihapitiya’s co-host on the podcast, an early investor in Facebook and Uber. Sacks and Palihapitiya said they would host a fundraiser for Kennedy, which, according to the Puck news outlet, was set for June 15.

Kennedy’s newfound friends in Silicon Valley were mostly loud supporters of vaccines early in the pandemic, but they have proven more than willing to let him expound on his anti-vaccine views and conspiracy theories as he promotes his presidential bid. During a two-hour forum on Twitter, hosted by company owner Elon Musk and Sacks, Kennedy raised a range of themes, but returned to the subject he’s become famous for in recent years: his skepticism about vaccines and the pharmaceutical companies that sell them.

Indeed, on the June 5 appearance, he praised Musk for ending “censorship” on his corner of social media. A promoter of conspiracy theories, Kennedy said various forces are keeping him from discussing his safety concerns over vaccines, like Democratic Rep. Adam Schiff (as part of the intelligence apparatus), Big Pharma, and Roger Ailes (who has been dead for six years).

Kennedy argued an influx of direct-to-consumer advertising from pharmaceutical concerns keep media outlets, like Fox News, from featuring his theories about vaccine safety. Fox didn’t respond to a request for comment.

He then said he supported reversing policies that allow direct-to-consumer ads in media. (Kennedy earlier dubbed himself a “free-speech absolutist” and, later, in a discussion about nuclear power, a “free-market absolutist” and even later a “constitutional absolutist.” Legal scholars doubt the courts, on First Amendment grounds, would be receptive to a ban of direct-to-consumer ads.)

Support for Kennedy in the venture capital and tech communities, which have a big financial stake in the advancement of science and generally reject irrational conspiracy theories, is likely limited. Multiple venture capitalists and technologists contacted by KFF Health News expressed puzzlement over what’s driving the embrace from Musk and others.

“I think he is a lower-intellect, Democratic version of Donald Trump, so he attracts libertarian-leaning, anti-‘woke,’ socially liberal folks as a protest vote,” said Robert Nelsen, a biotech investor with Arch Venture Partners. “I think he is a dangerous conspiracy theorist, who has contributed to many deaths with his anti-vaccine lies.”

But the ones with the megaphones are letting Kennedy talk. Jason Calacanis, another co-host of “All-In” and a pal of Musk’s, said late in the podcast he was pleased the conversation didn’t lead with “sensational” topics — like vaccines. Still, during the podcast, Kennedy was given nearly five uninterrupted minutes to describe his views on shots — a long list of alleged safety problems, ranging from allergies, autism, to autoimmune problems, many of which have been discredited by reputable scientists.

David Friedberg, another Silicon Valley executive and guest on the show, suggested there wasn’t “direct evidence” for those problems. “I don’t think it’s solely the vaccines,” Kennedy conceded. After an interlude touching on the role of chemicals, he was back to injuries caused by diphtheria shots.

While Friedberg, a former Google executive and founder of an agriculture startup sold to Monsanto for a reported $1.1 billion, pushed back against Kennedy, he did so deep into the podcast, after the candidate had left. Kennedy’s views — on nuclear power and vaccines — manifest “as conspiracy theories,” he said. “It doesn’t resonate with me,” he continued, as he “likes to have empirical truth be demonstrated.”

The muted pushback is a bit of a reversal. Early in the rollout of covid-19 vaccines, many tech luminaries had been among the most loudly pro-shot individuals. The “All-In” crew was no exception. Sacks once tweeted, “We’ve got to raise the bar for what we expect from government”; Palihapitiya begged administrators to “stop virtue signaling” with vaccination criteria and simply mass-vaccinate instead.

That was then. Sacks recently retweeted a video of Bill Gates questioning the effectiveness of current covid vaccines and defended Kennedy from charges of being anti-vaccination.

Musk himself has sometimes suggested he has qualms with vaccines, tweeting in January, without evidence, that “I’m pro vaccines in general, but there’s a point where the cure/vaccine is potentially worse, if administered to the whole population, than the disease.”

Musk isn’t the only top tech executive to signal interest in Kennedy’s candidacy. Block CEO and Twitter co-founder Jack Dorsey has tweeted Kennedy “can and will” win the presidency.

In some ways, the Valley’s interest in Kennedy — vaccine skepticism and all — has deep roots. Tech culture grew out of Bay Area counterculture. It has historically embraced individualistic theories of health and wellness. While most have conventional views on health, techies have dabbled in “nootropics,” supplements that purportedly boost mental performance, plus fad diets, microdosing psychedelics, and even quests for immortality.

There’s a “deeply held anti-establishment ethos” among many tech leaders, said University of Washington historian Margaret O’Mara. There’s a “suspicion of authority, disdain for gatekeepers and traditionalists, dislike of bureaucracies of all kinds. This too has its roots in the counterculture era, and the 1960s antiwar movement, in particular.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

“I want to thank you for your attempts at civility,” Makary, a Johns Hopkins Medicine researcher and surgeon, said softly. Then his tone changed. His voice started to rise, blasting the “intellectual dishonesty” and “very bizarre” decisions of public health officials. Much later, he criticized the “cult” of his critics, some of whom “clap like seals” when certain studies are published. Some critics are “public health oligarchs,” he said.

Makary was a marquee witness for this meeting of the Select Subcommittee on the Coronavirus Pandemic. His testimony had the rhythm of a two-step — alternating between an extended hand and a harsh rhetorical slap. It’s a characteristic move of this panel, a Republican-led effort to review the response to the pandemic. Both sides of the aisle join in the dance, as members claim to seek cooperation and productive discussions before attacking their preferred coronavirus villains.

One target of the subcommittee’s Republican members has drawn concern from public health experts: covid-19 vaccines. Because the attacks range from subtle to overt, there’s a fear all vaccines could end up as collateral damage.

During that May 11 hearing, Republican members repeatedly raised questions about coronavirus vaccines. Right-wing star Rep. Marjorie Taylor Greene (R-Ga.) emphasized the vaccines were “experimental” and fellow Georgia Republican Rep. Rich McCormick, an emergency room physician, argued the government was “pushing” FDA-approved boosters “with no evidence and possible real harm.”

Some Republican members, who have been investigating for months various pandemic-related matters, are keen to say they’re supportive of vaccines — just not many of the policies surrounding covid vaccines. Rep. Brad Wenstrup (R-Ohio), who chairs the subcommittee, has said he supports vaccines and claimed he’s worried about declining vaccination rates.

During the May hearing, he also two-stepped, arguing the covid shots were “safe as we know it, to a certain point.” He questioned the government’s safety apparatus, including VAERS, the Vaccine Adverse Event Reporting System, a database that receives reports potentially connected to vaccines. He said the committee would be “looking” at it “to make sure it’s honest and to be trusted.”

It’s this two-step — at once proclaiming oneself in favor of vaccines, while validating concerns of vaccine-skeptical audiences — that has sparked worries of deeper vaccine hesitancy taking root.

“It seems to me to be implying the government knows the vaccine to be unsafe” and that it’s “covering it up,” said Matt Motta, a political scientist at Boston University specializing in public health and vaccine politics. The implication validates some long-held fringe theories about vaccinations, without completely embracing “conspiracism,” he said.

Vaccine skeptics run the gamut from individuals with scientific credentials who nevertheless oppose public health policies from a libertarian perspective to individuals endorsing theories about widespread adverse events, or arguing against the need for multiple shots. VAERS is a favorite topic among the latter group. When one witness testifying during the May 11 hearing attempted to defend covid vaccination policies, Taylor Greene cited the number of reports to VAERS as evidence of the vaccines’ lack of safety.

That muddles the purpose of the database, Motta said, which gathers unverified and verified reports alike. It’s a signal, not a diagnosis. “It’s more like a smoke alarm,” he said. “It goes off when there’s a fire. But it also goes off when you’ve left an omelet on the stove too long.”

In a March hearing focusing on school reopening policies, Democratic members of the panel and a witness from a school nurses association frequently touted the important role covid vaccines played in enabling schools to reopen. Wenstrup offered generalized skepticism. “I heard we were able to get more vaccines for the children,” he said. “We didn’t know fully if they needed it. A lot of data would show they don’t need to vaccinate.”

Witnesses can eagerly play into vaccine-skeptical narratives. After a question from Taylor Greene premised on the idea that the covid vaccines “are not vaccines at all,” and alleging the government is spreading misinformation about their effectiveness, Makary suggested that while he was not anti-vaccine, it was understandable others were. “I understand why they are angry,” he said, in response. “They’ve been lied to,” he said, before criticizing evidence standards for the newest covid boosters, tailored to combat emerging variants.

The signals aren’t lost on audiences. The subcommittee has, like most congressional panels, posted important moments from its hearings to Twitter. Anti-vaccine activists and other public health skeptics reply frequently.

“It’s hard for me to think of a historical analogue for this — it’s not often that we have a Congressional committee producing content that has its fingers on the pulse of the anti-vaccine community,” Motta wrote in an e-mail, after reviewing many of the subcommittee’s tweets. “The committee isn’t expressly endorsing anti-vaccine positions, beyond opposition to vaccine mandates; but I think it’s quite possible that anti-vaccine activists take this information and run with it.”

Motta’s concern is echoed by the panel’s Democratic members. “I pray this hearing does not add to vaccine hesitancy,” said Rep. Kweisi Mfume (D-Md.), who represents Baltimore.

One witness reiterated that point. Many members “have a lot of skepticism about vaccines and were not afraid to express that,” Tina Tan, a specialist in pediatric infectious diseases at Northwestern University, told KFF Health News. She testified at the hearing on behalf of the minority.

Polling is showing a substantial — and politically driven — level of vaccine skepticism that reaches beyond covid. A slim minority of the country is up to date on vaccinations against the coronavirus, including the bivalent booster. And the share of kindergartners receiving the usual round of required vaccines — the measles, mumps, and rubella, or MMR, inoculation; tetanus; and chickenpox among them — dropped in the 2021-22 school year, according to the Centers for Disease Control and Prevention. Support for leaving vaccination choices to parents, not as school requirements, has risen by 12 percentage points since just before the pandemic, mostly due to a drop among Republicans, according to a recent poll by the Pew Research Center.

And vaccine skepticism is resonating beyond the halls of Congress. Some state governments are considering measures to roll back vaccine mandates for children. As part of a May 18 procedural opinion, Supreme Court Justice Neil Gorsuch cited two vaccination mandates — one in the workplace, and one for service members — and wrote that Americans “may have experienced the greatest intrusions on civil liberties in the peacetime history of this country.” He made this assertion even though American military personnel have routinely been required to get shots for a host of diseases.

“We can’t get to a spot where we’re implicitly or explicitly sowing distrust of vaccines,” cautioned California Rep. Raul Ruiz, the Democratic ranking member of the coronavirus subcommittee.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Cada vez más empresas impulsan la última tecnología de inteligencia artificial (IA), conocida como “IA generativa”: Google y Microsoft quieren usarla para la atención de salud. También las firmas familiares para los profesionales de salud como los gigantes de registros médicos electrónicos Epic y Oracle Cerner.

Y este campo está lleno de nuevas empresas.

Las empresas quieren que sus IA tomen notas para los médicos y ofrezcan una segunda opinión, suponiendo que puedan evitar que la inteligencia “alucine” o divulgue la información privada de los pacientes.

“Hay algo en marcha que es bastante emocionante”, dijo Eric Topol, director del Scripps Research Translational Institute en San Diego. Topol, como muchos otros observadores, se pregunta cuántos problemas podría causar, como filtrar datos de pacientes. “Vamos a averiguarlo”, aseguró.

El espectro de estos problemas inspiró a más de 1,000 líderes tecnológicos a firmar una carta abierta en marzo, instando a las empresas a frenar el desarrollo de sistemas avanzados de IA hasta que “tengamos confianza en que sus efectos serán positivos y sus riesgos serán manejables”. Aún así, algunas están invirtiendo más dinero en empresas de inteligencia artificial.

La tecnología subyacente se basa en sintetizar grandes porciones de texto u otros datos (por ejemplo, algunos modelos médicos se basan en 2 millones de notas de la unidad de cuidados intensivos del Centro Médico Beth Israel Deaconess en Boston) para predecir el texto que seguiría a una consulta determinada. La idea ha existido durante años, pero el frenesí empresarial y mediático es más reciente.

Comenzó en diciembre de 2022 con OpenAI respaldado por Microsoft y su producto insignia, ChatGPT, que responde preguntas con autoridad y estilo. Por ejemplo, puede explicar la genética con un soneto.

OpenAI, que comenzó como una empresa de investigación fundada por élites de Silicon Valley como Sam Altman, Elon Musk y Reid Hoffman, ha llevado el entusiasmo a los bolsillos de los inversores.

La empresa tiene una estructura compleja e híbrida con y sin fines de lucro. Pero una nueva ronda de financiación de $10 mil millones de Microsoft elevó el valor de OpenAI a $29 mil millones, informó The Wall Street Journal.

En este momento, la empresa otorga licencias de su tecnología a compañías como Microsoft y vende suscripciones a los consumidores. Otras nuevas empresas están considerando vender transcripción de IA u otros productos a sistemas hospitalarios o directamente a pacientes.

Los comentarios están en todas partes. Larry Summers, ex secretario del Tesoro, tuiteó recientemente: “Reemplazará lo que hacen los médicos (escuchar síntomas y hacer diagnósticos) antes de que cambie lo que hacen las enfermeras: ayudar a los pacientes a levantarse y manejarse en el hospital”.

Pero solo unas semanas después de que OpenAI recibiera otra gran inyección de efectivo, incluso Altman, su director ejecutivo, desconfía de la fanfarria. “La exageración sobre estos sistemas, incluso si todo lo que esperamos es correcto a largo plazo, está totalmente fuera de control a corto plazo”, dijo para un artículo de marzo en The New York Times.

Pocos en la atención de salud creen que esta última forma de IA esté a punto de reemplazarlos en sus trabajos (aunque algunas compañías están experimentando, de manera controversial, con chatbots que actúan como terapeutas o guías para la atención).

Aquellos que son optimistas en la tecnología piensan que hará que algunas partes de su trabajo sean mucho más fáciles.

Eric Arzubi, psiquiatra de Billings, Montana, solía administrar a colegas psiquiatras para un sistema hospitalario. Una y otra vez, obtenía una lista de proveedores que aún no habían terminado sus notas: sus resúmenes de la condición de un paciente y un plan de tratamiento.

Escribir estas notas es uno de los grandes factores de estrés en el sistema de salud: es una carga administrativa. Pero es necesario desarrollar un registro para los futuros proveedores y, por supuesto, las aseguradoras.

“Cuando la gente está muy atrasada en la documentación, eso crea problemas”, dijo Arzubi. “¿Qué sucede si el paciente ingresa al hospital y hay una nota que no se ha completado y no sabemos lo que le pasa?”

La nueva tecnología podría ayudar a aliviar esas cargas. Arzubi está probando un servicio, llamado Nabla Copilot, que participa en las visitas virtuales de los pacientes y luego las resume automáticamente, organizando en un formato estándar el reclamo, el historial de enfermedades y un plan de tratamiento.

Los resultados son sólidos después de unos 50 pacientes, dijo: “Es el 90% del camino”. Copilot produce resúmenes útiles que Arzubi edita. Los beneficios son significativos: no tiene que preocuparse por tomar notas y, en cambio, puede concentrarse en hablar con los pacientes. Y ahorra tiempo.

“Si tengo un día completo de pacientes, donde podría ver a 15, diría que esto me ahorra una buena hora al final del día”, dijo. (Si la tecnología se adopta ampliamente, espera que los hospitales no aprovechen el tiempo ahorrado simplemente programando más pacientes. “Eso no sería justo”, dijo).

Nabla Copilot no es el único servicio de este tipo; Microsoft está probando el mismo concepto. En la conferencia de abril de la Sociedad de Sistemas de Gestión e Información de Salud, los analistas de inversiones de Evercore destacaron la reducción de la carga administrativa como una de las principales posibilidades para las nuevas tecnologías.

Pero escucharon críticas mixtas: muchos expertos en tecnología y médicos son ambivalentes.

Por ejemplo, si estás desconcertado acerca de un diagnóstico, ingresar los datos del paciente en uno de estos programas “puede proporcionar una segunda opinión, sin duda”, dijo Topol. “Estoy seguro de que los médicos lo están haciendo”. Sin embargo, eso se topa con las limitaciones actuales de la tecnología.

Joshua Tamayo-Sarver, médico y ejecutivo de la startup Inflect Health, alimentó en un sistema escenarios ficticios de pacientes basados en su propia práctica en un departamento de emergencias para ver cómo funcionaba. El sistema no se dio cuenta de afecciones que amenazan la vida, dijo. “Eso parece problemático”.

La tecnología también tiende a “alucinar”, o inventar información que suena convincente.

Los estudios formales han encontrado una amplia gama de rendimiento. Un trabajo de investigación preliminar que examinó ChatGPT y los productos de Google utilizando preguntas de examen abiertas de neurocirugía encontró una tasa de alucinaciones del 2%.

Investigadores de Stanford examinaron la calidad de las respuestas de IA en 64 escenarios clínicos y encontraron citas inventadas el 6% de las veces, dijo el coautor Nigam Shah a KFF Health News. Otro artículo preliminar encontró que, en casos complejos de cardiología, ChatGPT estuvo de acuerdo con la opinión de expertos la mitad de las veces.

La privacidad es otra preocupación. No está claro si la información que se introduce en este tipo de sistema basado en IA no se revelará. Los usuarios emprendedores de ChatGPT, por ejemplo, han logrado que la tecnología les diga la receta del napalm, que se puede usar para fabricar bombas químicas.

En teoría, el sistema tiene “vallas” que impiden que se escape información privada. Por ejemplo, cuando KFF Health News le preguntó a ChatGPT su dirección de correo electrónico, el sistema se negó a divulgarlo.

Pero cuando se le pidió que interpretara a un personaje y se le preguntó sobre la dirección de correo electrónico del autor de este artículo, entregó feliz la información. (De hecho, era la dirección de correo electrónico correcta del autor en 2021, cuando finaliza el archivo de ChatGPT).

“No pondría datos de pacientes”, dijo Shah, científico jefe de datos de Stanford Health Care. “No entendemos qué sucede con estos datos una vez que llegan a los servidores de OpenAI”.

Tina Sui, vocera de OpenAI, le dijo a KFF Health News que uno “nunca debe usar nuestros modelos para brindar servicios de diagnóstico o tratamiento para afecciones médicas graves”. No están “afinados para proporcionar información médica”, dijo.

Con la explosión de nuevas investigaciones, “no creo que la comunidad médica tenga una buena idea de lo que está por suceder”, agregó Topol.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Companies pushing the latest AI technology — known as “generative AI” — are piling on: Google and Microsoft want to bring types of so-called large language models to health care. Big firms that are familiar to folks in white coats — but maybe less so to your average Joe and Jane — are equally enthusiastic: Electronic medical records giants Epic and Oracle Cerner aren’t far behind. The space is crowded with startups, too.

The companies want their AI to take notes for physicians and give them second opinions — assuming they can keep the intelligence from “hallucinating” or, for that matter, divulging patients’ private information.

“There’s something afoot that’s pretty exciting,” said Eric Topol, director of the Scripps Research Translational Institute in San Diego. “Its capabilities will ultimately have a big impact.” Topol, like many other observers, wonders how many problems it might cause — like leaking patient data — and how often. “We’re going to find out.”

The specter of such problems inspired more than 1,000 technology leaders to sign an open letter in March urging that companies pause development on advanced AI systems until “we are confident that their effects will be positive and their risks will be manageable.” Even so, some of them are sinking more money into AI ventures.

The underlying technology relies on synthesizing huge chunks of text or other data — for example, some medical models rely on 2 million intensive care unit notes from Beth Israel Deaconess Medical Center in Boston — to predict text that would follow a given query. The idea has been around for years, but the gold rush, and the marketing and media mania surrounding it, are more recent.

The frenzy was kicked off in December 2022 by Microsoft-backed OpenAI and its flagship product, ChatGPT, which answers questions with authority and style. It can explain genetics in a sonnet, for example.

OpenAI, started as a research venture seeded by Silicon Valley elites like Sam Altman, Elon Musk, and Reid Hoffman, has ridden the enthusiasm to investors’ pockets. The venture has a complex, hybrid for- and nonprofit structure. But a new $10 billion round of funding from Microsoft has pushed the value of OpenAI to $29 billion, The Wall Street Journal reported. Right now, the company is licensing its technology to companies like Microsoft and selling subscriptions to consumers. Other startups are considering selling AI transcription or other products to hospital systems or directly to patients.

Hyperbolic quotes are everywhere. Former Treasury Secretary Larry Summers tweeted recently: “It’s going to replace what doctors do — hearing symptoms and making diagnoses — before it changes what nurses do — helping patients get up and handle themselves in the hospital.”

But just weeks after OpenAI took another huge cash infusion, even Altman, its CEO, is wary of the fanfare. “The hype over these systems — even if everything we hope for is right long term — is totally out of control for the short term,” he said for a March article in The New York Times.

Few in health care believe this latest form of AI is about to take their jobs (though some companies are experimenting — controversially — with chatbots that act as therapists or guides to care). Still, those who are bullish on the tech think it’ll make some parts of their work much easier.

Eric Arzubi, a psychiatrist in Billings, Montana, used to manage fellow psychiatrists for a hospital system. Time and again, he’d get a list of providers who hadn’t yet finished their notes — their summaries of a patient’s condition and a plan for treatment.

Writing these notes is one of the big stressors in the health system: In the aggregate, it’s an administrative burden. But it’s necessary to develop a record for future providers and, of course, insurers.

“When people are way behind in documentation, that creates problems,” Arzubi said. “What happens if the patient comes into the hospital and there’s a note that hasn’t been completed and we don’t know what’s been going on?”

The new technology might help lighten those burdens. Arzubi is testing a service, called Nabla Copilot, that sits in on his part of virtual patient visits and then automatically summarizes them, organizing into a standard note format the complaint, the history of illness, and a treatment plan.

Results are solid after about 50 patients, he said: “It’s 90% of the way there.” Copilot produces serviceable summaries that Arzubi typically edits. The summaries don’t necessarily pick up on nonverbal cues or thoughts Arzubi might not want to vocalize. Still, he said, the gains are significant: He doesn’t have to worry about taking notes and can instead focus on speaking with patients. And he saves time.

“If I have a full patient day, where I might see 15 patients, I would say this saves me a good hour at the end of the day,” he said. (If the technology is adopted widely, he hopes hospitals won’t take advantage of the saved time by simply scheduling more patients. “That’s not fair,” he said.)

Nabla Copilot isn’t the only such service; Microsoft is trying out the same concept. At April’s conference of the Healthcare Information and Management Systems Society — an industry confab where health techies swap ideas, make announcements, and sell their wares — investment analysts from Evercore highlighted reducing administrative burden as a top possibility for the new technologies.

But overall? They heard mixed reviews. And that view is common: Many technologists and doctors are ambivalent.

For example, if you’re stumped about a diagnosis, feeding patient data into one of these programs “can provide a second opinion, no question,” Topol said. “I’m sure clinicians are doing it.” However, that runs into the current limitations of the technology.

Joshua Tamayo-Sarver, a clinician and executive with the startup Inflect Health, fed fictionalized patient scenarios based on his own practice in an emergency department into one system to see how it would perform. It missed life-threatening conditions, he said. “That seems problematic.”

The technology also tends to “hallucinate” — that is, make up information that sounds convincing. Formal studies have found a wide range of performance. One preliminary research paper examining ChatGPT and Google products using open-ended board examination questions from neurosurgery found a hallucination rate of 2%. A study by Stanford researchers, examining the quality of AI responses to 64 clinical scenarios, found fabricated or hallucinated citations 6% of the time, co-author Nigam Shah told KFF Health News. Another preliminary paper found, in complex cardiology cases, ChatGPT agreed with expert opinion half the time.

Privacy is another concern. It’s unclear whether the information fed into this type of AI-based system will stay inside. Enterprising users of ChatGPT, for example, have managed to get the technology to tell them the recipe for napalm, which can be used to make chemical bombs.

In theory, the system has guardrails preventing private information from escaping. For example, when KFF Health News asked ChatGPT its email address, the system refused to divulge that private information. But when told to role-play as a character, and asked about the email address of the author of this article, it happily gave up the information. (It was indeed the author’s correct email address in 2021, when ChatGPT’s archive ends.)

“I would not put patient data in,” said Shah, chief data scientist at Stanford Health Care. “We don’t understand what happens with these data once they hit OpenAI servers.”

Tina Sui, a spokesperson for OpenAI, told KFF Health News that one “should never use our models to provide diagnostic or treatment services for serious medical conditions.” They are “not fine-tuned to provide medical information,” she said.

With the explosion of new research, Topol said, “I don’t think the medical community has a really good clue about what’s about to happen.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Zuena, “fundadora/visionaria” de LH Spa & Rejuvenation en Livingston y Madison, New Jersey, ha bajado 30 libras. Su esposo bajó 42 libras.

“Salimos mucho”, dijo Zuena sobre su rutina social. “La gente veía que nos estábamos encogiendo”. Le preguntaban a la pareja cómo lo habían logrado. Su respuesta: recomendar que las personas visiten su spa y prueben un tipo de medicamento relativamente nuevo, los análogos del GLP-1, una clase de fármacos que se ha convertido en un fenómeno para la pérdida de peso.

Pero Zuena no solo difunde este mensaje en persona. También lo está haciendo en Instagram, y no es la única. En las redes sociales, hay un coro de voces que canta alabanzas a estas drogas. El verano pasado, el banco de inversión Morgan Stanley descubrió que las menciones de uno de estos medicamentos en TikTok se habían triplicado. Las personas llegan a los consultorios de sus médicos preguntando sobre estos medicamentos supuestamente “milagrosos”.

Las promesas que estos pacientes han escuchado, dicen los médicos, están basadas en información exagerada e incluso a veces errónea difundida por los llamados influencers, personas influyentes en las redes sociales. “Me piden el lápiz mágico, la inyección para perder peso u Ozempic”, dijo Priya Jaisinghani, endocrinóloga y profesora asistente clínica en la Grossman School of Medicine de la Universidad de Nueva York.

La competencia para hacerse con un mercado que podría valer $100.000 millones al año, solo para los fabricantes de medicamentos, ha desencadenado una ola de publicidad que preocupa a las autoridades sanitarias  y médicos de todo el mundo. Pero sus herramientas para controlar estos anuncios desenfranados son limitadas, especialmente cuando se trata de las redes sociales. Al sistema regulatorio le interesa más lo que dicen las empresas farmacéuticas, no tanto lo que difunden los médicos o sus pacientes entusiasmados.

Pocas drogas de este tipo están aprobadas por la Administración de Alimentos y Medicamentos de Estados Unidos (FDA) para bajar de peso; entre ellas está Wegovy, de Novo Nordisk.

Pero cuando la escasez de este medicamento hizo que fuera más difícil de obtener, muchos pacientes recurrieron a otros fármacos, como Ozempic, de Novo Nordisk, y Mounjaro, de Eli Lilly, que están aprobados solo para la diabetes tipo 2. Estas drogas se suelen utilizar “fuera de receta”, es decir, para un uso distinto del uso que está indicado, aunque pocos influencers en las redes sociales mencionan este aspecto.

Los medicamentos han demostrado resultados clínicos prometedores, dicen Jaisinghani y sus colegas. Los pacientes pueden perder hasta 15% de su peso corporal. Novo Nordisk está financiando una investigación para determinar si Wegovy reduce la tasa de ataques cardíacos en pacientes con obesidad.

Pero los medicamentos son caros. Para los pacientes que pagan en efectivo en Washington, DC, Wegovy cuesta por lo menos $1,305 al mes, según una búsqueda de GoodRx a fines de marzo.

Las aseguradoras cubren el costo solo en algunos casos. Y cuando dejan de usar la droga, los pacientes suelen recuperar gran parte del peso que perdieron.

El sensacionalismo impulsa la demanda

Muchos de los pacientes que llegan a los consultorios médicos pidiendo estas drogas no lo hacen por la ciencia sino por lo que vieron en TikTok, como videos de Chelsea Handler y otros famosos hablando de sus inyecciones. Se preguntan “¿por qué ella puede usarlo y yo no?”, dijo Juliana Simonetti, médica y codirectora del programa integral de control de peso de la Universidad de Utah.

El nivel de entusiasmo, que preocupa a los médicos ya que puede hacer que algunos pacientes usen estos medicamentos de manera inapropiada, también proviene de los intereses comerciales. Estos incluyen médicos que promocionan sus nuevas empresas de capital de riesgo. Otros son spas pregonando todo tipo de servicios, desde tratamientos para las arrugas y rellenos inyectables para los labios hasta los supuestos beneficios para la pérdida de peso de la semaglutida, el principio activo de Wegovy y Ozempic.

Los precios que ofrecen, a menudo alrededor de cientos de dólares, son mucho más bajos que los que cobran las farmacias por los mismos medicamentos.

En los Estados Unidos, la FDA monitorea las publicidades de la industria farmacéutica, que está obligada a mencionar los riesgos y los efectos secundarios de los medicamentos. Pero los anuncios difundidos por los individuos que recetan estas drogas no necesariamente están sujetos a las mismas reglas. La FDA regula los anuncios de personas que recetan drogas cuando trabajan para una entidad regulada, como un fabricante o distribuidor farmacéutico.

“La FDA también se compromete a colaborar con agencias externas, como la Comisión Federal de Comercio, para abordar las preocupaciones sobre la comercialización de medicamentos recetados que hacen empresas de telesalud en varias plataformas, incluyendo las redes sociales”, dijo Jeremy Kahn, vocero de la agencia, en un email a KFF Health News.

Las empresas farmacéuticas realizan campañas para educar a los profesionales de salud o “concientizar”, muchas veces promocionando medicamentos de forma indirecta. Novo Nordisk tiene una campaña en Internet para redefinir y desestigmatizar la obesidad en Estados Unidos. Aunque no lo dicen explícitamente, esta campaña también “desestigmatiza” los medicamentos que se usan para tratar la obesidad.

KFF Health News también descubrió que al menos dos entidades estaban promocionando productos de Novo Nordisk en el Reino Unido.

A principios de marzo, los entes reguladores australianos ya habían eliminado casi 1,900 anuncios que promocionaban los análogos del GLP-1, dijo un vocero de la agencia a KFF Health News. Novo Nordisk dice que no colocó los anuncios, la mayoría de los cuales eran para Ozempic, una de sus drogas. Los entes reguladores se negaron a identificar a las personas involucradas.

Los médicos también advierten de los peligros de estas publicidades. Piensan que los pacientes usarán estos medicamentos de forma no autorizada u obtendrán formas poco confiables de las drogas, y temen que estas exacerben otras afecciones de salud, como los trastornos alimentarios.

Los medicamentos actúan en parte como inhibidores del apetito, y existe el riesgo de que los pacientes reduzcan peligrosamente su consumo de calorías cuando las drogas no están combinadas con un plan nutricional.

Elizabeth Wassenaar, directora médica regional del Eating Recovery Center, cree que los medicamentos y los anuncios que los promueven inadvertidamente provocarán trastornos alimentarios. KFF Health News encontró publicidades que mostraban a pacientes delgados midiéndose con una cinta métrica y pesándose en una balanza, con subtítulos alentando a la audiencia a usar los GLP-1.

“Se están comercializando muy, muy deliberadamente a grupos que son vulnerables a experimentar insatisfacción por su imagen corporal”, dijo.

Remi Bader, modelo curvilíneay creadora de TikTok que se especializa en documentar sus compras de ropa “práctica y funcional”, habló en un podcast sobre su experiencia saliendo de “unos meses” de tratamiento con Ozempic. Dijo que recuperó el doble del peso que había perdido y que su trastorno por comer compulsivamente “empeoró muchísimo”.

Un estudio publicado en la revista Diabetes, Obesity and Metabolism observó que los pacientes recuperan dos tercios del peso perdido después de dejar la semaglutida.

Pero los usuarios en las redes sociales y los influencers, ya sea los que usan batas blancas o los pacientes comunes y corrientes, están compartiendo sus experiencias positivas de pérdida de peso en todas las plataformas. Algunos, por ejemplo, se sometieron a una cirugía de bypass gástrico que no funcionó y ahora recurren a TikTok en busca de orientación, apoyo y esperanza para su tratamiento con drogas de GLP-1. Incluso hay un grupo de Facebook donde los usuarios discuten un tema un poco tabú: el efecto de estos medicamentos en sus evacuaciones intestinales.

Fórmulas magistrales y comercialización causan entusiasmo y preocupación

Algunos están tan encantados con su pérdida de peso asistida por medicamentos que se han convertido en “embajadores” de las compañías. Samantha Klecyngier ha bajado al menos 58 libras desde que comenzó su tratamiento con Mounjaro. Descubrió la droga y el programa de pérdida de peso de telemedicina Sequence en TikTok.

Como muchas otras personas que han perdido una cantidad notable de peso con el tratamiento señala el efecto positivo de estas drogas y cómo ha mejorado su calidad de vida. Ahora, Klecyngier promueve a la empresa de forma oficial en la aplicación.

Aunque Klecyngier, que vive en Chicago y tiene dos hijos, no es diabética, usa Mounjaro. Cuando ella era niña, sus padres sufrían de diabetes tipo 2 y otras enfermedades crónicas que los llevaron a ambos a tener cirugías cardíacas. Su padre murió por complicaciones de la diabetes, y ella quiere evitar ese destino.

El caso de Klecyngier, que combina su experiencia personal con una entidad lucrativa, refleja otra tendencia en las redes sociales: el comercialismo. Hay una oleada de nuevas empresas tratando de invertir en medicamentos que dan dinero combinados con programas de apoyo. (Sequence, la compañía que promueve Klecyngier, acaba de ser adquirida por WW, la empresa conocida como Weightwatchers).

Algunos médicos usan las redes sociales para educar a la gente sobre estos medicamentos. Michael Albert, director médico del servicio de telesalud Accomplish Health, dice que ofrecer información a sus más de 250,000 seguidores ha ayudado a orientar a los pacientes hacia su consultorio médico. Ha recibido miles de consultas, muchas más de lo que la clínica puede abordar.

Compañías como Accomplish, empresas nuevas con médicos acreditados, representan el lado profesional de esta explosión en las redes sociales.

Pero hay otros, entre ellos spas y centros de pérdida de peso, que en muchos casos ofrecen los medicamentos sin apoyo médico y en conjunto con servicios como Botox y rellenos dérmicos. A los médicos especializados en obesidad les preocupa que este tipo de marketing esté generando expectativas poco realistas.

Algunos spas y servicios de telemedicina ofrecen fórmulas magistrales de la semaglutida. Pero los médicos advierten que esta práctica, que se refiere a cuando las farmacias y no los fabricantes preparan un medicamento, es arriesgada. “Los riesgos son enormes”, dijo Simonetti, advirtiendo sobre la posible contaminación por malas prácticas de preparación de las drogas. “Riesgos de contraer bacterias”, continuó, “que incluyen la muerte”.

Muchas clínicas de pérdida de peso también promueven la adición de compuestos no convencionales a la semaglutida, como la vitamina B12 y los aminoácidos. Algunos pacientes creen incorrectamente que la vitamina B12 ayuda con las náuseas, dijo Jaisinghani. Otras clínicas prometen una mayor pérdida de peso.

Allison Schneider, vocera de Novo Nordisk, dijo a KFF Health News en un correo electrónico que la compañía comparte las preocupaciones de los médicos sobre las formulas magistrales y que ha empezado a enviar cartas a “ciertos proveedores de atención médica” advirtiendo de los riesgos relacionados.

Aun así, algunos lugares defienden el uso de las fórmulas magistrales, que en muchos casos son más baratas. LH Spa & Rejuvenation, fundado por Zuena, ofrece una fórmula de semaglutida de QRx Weight Loss que cuesta $500 por cuatro semanas. El spa se enteró del tratamiento a través de un médico. “Lo estoy comprando”, dijo Zuena. “Llega por vía aérea al día siguiente en frascos legítimos con números de lote y fechas de vencimiento”. Las inyecciones y las dosis administradas a los pacientes son monitoreadas por personal médico en el lugar.

La mayoría de los operadores que participan en esta industria floreciente enfatizan la alta calidad de sus productos o las buenas intenciones de su empresa, al tiempo que buscan ganar dinero. Ro, una empresa de telesalud que ofrece los GLP-1, dijo que su campaña de publicidad en el transporte público de Nueva York “tiene como objetivo iniciar una conversación importante y difícil sobre la desestigmatización de la obesidad como afección”.

Esta táctica enloquece a los críticos de la industria farmacéutica. “Hablan de desestigmatizar la obesidad al mismo tiempo que hablan de perder peso. Están corrompiendo el concepto”, dijo Judy Butler, investigadora en PharmedOut, un proyecto del Georgetown University Medical Center que se enfoca en prácticas para medicamentos basadas en evidencia. “Están tratando de vender un medicamento para bajar de peso”.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).

Zuena, the “founder/visionary” of LH Spa & Rejuvenation in Livingston and Madison, New Jersey, has dropped 30 pounds. Her husband has lost 42 pounds.

“We go out a lot,” Zuena said of the pair’s social routine. “People saw us basically shrinking.” They would ask how the couple did it. Her response: Point people to her spa and a relatively new type of medication — GLP-1 agonists, a class of drug that’s become a weight loss phenomenon.

But she’s not just spreading her message in person. She’s also doing it on Instagram. And she’s not alone. A chorus of voices is singing these drugs’ praises. Last summer, investment bank Morgan Stanley found mentions of one of these drugs on TikTok had tripled. People are streaming into doctors’ office to inquire about what they’ve heard are miracle drugs.

What these patients have heard, doctors said, is nonstop hype, even misinformation, from social media influencers. “I’ll catch people asking for the skinny pen, the weight loss shot, or Ozempic,” said Priya Jaisinghani, an endocrinologist and clinical assistant professor at New York University’s Grossman School of Medicine.

Competition to claim a market that could be worth $100 billion a year for drugmakers alone has triggered a wave of advertising that has provoked the concern of regulators and doctors worldwide. But their tools for curbing the ads that go too far are limited — especially when it comes to social media. Regulatory systems are most interested in pharma’s claims, not necessarily those of doctors or their enthused patients.

Few drugs of this type are approved by the FDA for weight loss — they include Novo Nordisk’s Wegovy. But after shortages made that treatment harder to get, patients turned to other pharmaceuticals — like Novo Nordisk’s Ozempic and Eli Lilly’s Mounjaro — that are approved only for Type 2 diabetes. Those are often used off-label — though you wouldn’t hear that from many of their online boosters.

The drugs have shown promising clinical results, Jaisinghani and her peers emphasize. Patients can lose as much as 15% of their body weight. Novo Nordisk is sponsoring research to examine whether Wegovy causes reductions in the rate of heart attacks for patients with obesity.

The medications, though, come at a high price. Wegovy runs patients paying cash at least $1,305 a month in the Washington, D.C., area, according to a GoodRx search in late March. Insurers only sometimes cover the cost. And patients typically regain much of their lost weight after they stop taking it.

Hype Is Driving Demand

But patients are not necessarily coming to doctors’ offices now because of the science. They are citing things they saw on TikTok, like Chelsea Handler and other celebrities talking about their injections. It leads to the questions “how come she can get it” and “why can I not,” said Juliana Simonetti, a physician and co-director of the comprehensive weight management program at the University of Utah.

The excitement — which doctors worry may cause some patients to use medications inappropriately — is coming also from business interests. Some are doctors promoting their venture-capital-backed startups. Others are spas hawking everything from wrinkle-smoothing and lip-plumping to, yes, weight loss benefits of semaglutide, the active ingredient in Wegovy and Ozempic; their prices, often in the hundreds of dollars, are well below what consumers would pay if picking up the prescription at a pharmacy.

In the U.S., the FDA has oversight over ads from the pharmaceutical industry, which must acknowledge risks and side effects of drugs. But ads from people who write prescriptions don’t necessarily have the same restrictions. FDA regulations apply if the prescriber is working on behalf of a regulated entity, like a pharmaceutical manufacturer or distributor.

“The FDA is also committed to working with external partners, including the Federal Trade Commission (FTC), to address concerns with prescription drug marketing practices of telehealth companies on various platforms, including social media,” agency spokesperson Jeremy Kahn emailed KFF Health News.

Pharma firms run campaigns to educate health care professionals or raise “awareness” that may indirectly tout drugs. Novo Nordisk has an ongoing internet campaign to redefine and destigmatize how Americans think of obesity — and, left unmentioned, the drugs that treat it.

KFF Health News also found that, beyond the industry group’s examination, at least two other entities were promoting Novo Nordisk products in the United Kingdom.

Australian regulators have taken down nearly 1,900 ads as of early March for improperly plugging various GLP-1 agonists, an agency spokesperson told KFF Health News. Novo Nordisk says it didn’t put up the ads, the majority of which were for their product Ozempic. The regulators are declining to say who’s involved.

Doctors are also sounding alarms about the publicity. They believe patients will be driven to use these medications off-label, obtain unreliable forms of these drugs, or exacerbate other health conditions, like eating disorders. The drugs act in part as an appetite suppressant, which can dramatically reduce calorie intake to a concerning degree when not paired with nutritional guidance.

Elizabeth Wassenaar, a regional medical director for the Eating Recovery Center, believes the drugs and associated advertising buildup will inadvertently trigger eating disorders. KFF Health News found ads showing thin patients measuring themselves with a tape measure and stepping on the scale, with accompanying captions goading viewers into going on GLP-1s.

“They’re being marketed very, very pointedly to groups that are vulnerable to experiencing body image dissatisfaction,” she said.

Remi Bader, a curve model and TikTok creator specializing in documenting her “realistic” clothing buys, told one podcast her story of coming off a “few months” on Ozempic. She said she gained twice the weight back and that her binge eating disorder got “so much worse.” One study, published in the journal Diabetes, Obesity and Metabolism, found two-thirds of lost weight came back after discontinuation of semaglutide.

But social media users and influencers — whether with white coats or ordinary patients — are hopping on every platform to spread news of positive weight loss outcomes. There are those, for instance, who had gastric bypass surgery that didn’t work and are now turning to TikTok for guidance, support, and hope as they begin taking a GLP-1. There’s even a poop-centric Facebook group in which people discuss the sometimes fraught topic of the drugs’ effect on their bowel movements.

Commercialism and Compounding Spark Excitement and Concern

Some have been so delighted by their medication-assisted weight loss they have become brand ambassadors. Samantha Klecyngier has dropped at least 58 pounds since she started on Mounjaro. She heard of the drug and her telemedicine weight loss program, Sequence, on TikTok. She and many others who have experienced considerable weight loss since starting the medication regimen point to its positive impact and their improved quality of life. Now she officially promotes the company on the app.

Though Klecyngier, a mother of two from the Chicago area, is not diabetic, she uses Mounjaro. When she was growing up, her parents had Type 2 diabetes and other chronic diseases that led them both to have open-heart surgery. Her father lost his life to complications of diabetes. She wants to avoid that fate.

But Klecyngier’s story — combining a personal journey with a profit-making entity — is symbolic of another trend on social media: commercialism. There’s a spate of startups eyeing big money matching pharmaceuticals and related support with patients. (Sequence, the company Klecyngier pitches, just got acquired by WW, also known as WeightWatchers.)

Some doctors use social media to educate viewers about the drugs. Michael Albert, chief medical officer of telehealth practice Accomplish Health, says offering information to his more than 250,000 followers has helped point patients to the medical practice. It’s received thousands of patient inquiries, more than the clinic can take on.

Companies like Accomplish — startups with well-credentialed doctors — are the glossy side of this social media boom.

But there are others — like many spas and weight loss centers — that offer the drugs, sometimes without much medical support, often alongside Botox and dermal fillers. Obesity doctors worry such marketing is creating unrealistic expectations.

Some spas and telemedicine operators claim to have “compounded” semaglutide. But compounding — when pharmacies, rather than drug manufacturers, prepare a drug — is a risky proposition, doctors caution. “The risks are enormous,” Simonetti said, warning of potential contamination from poor compounding practices. “The risks of getting bacteria,” she warned, “the risks include death.”

Weight loss clinics also frequently tout unconventional additions to semaglutide, including vitamin B12 and amino acids. Some patients incorrectly believe the former helps with nausea, Jaisinghani said; other clinics tout greater weight loss.

Novo Nordisk spokesperson Allison Schneider told KFF Health News in an email that the company shares doctors’ concerns about compounding and that it’s begun sending letters warning “certain Health Care Providers” about the related risks.

Some operations defend their use of often-cheaper compounded drugs. LH Spa & Rejuvenation, founded by Zuena, offers a compounded semaglutide formulation from QRx Weight Loss for $500 over four weeks. The spa learned about the regimen from a doctor. “I’m purchasing it,” Zuena said. “It comes next-day air in legitimate vials with lot numbers, expirations.” Patients’ injections and dosages are overseen by on-site medical staff.

Most operators in this burgeoning industry are keen to emphasize their products’ high quality or their company’s good works, as they seek money. Ro, a telehealth firm offering GLP-1s, said its marketing campaign in the New York City subway “aims to start an important, sometimes difficult, conversation focused on de-stigmatizing obesity as a condition.”

This widespread tactic is nothing short of maddening for pharma industry critics. “They talk about trying to destigmatize obesity at the same time they’re talking about losing weight. They’re co-opting the concept,” said Judy Butler, a research fellow at PharmedOut, a Georgetown University Medical Center project focusing on evidence-based practices for drugs. “They’re trying to sell a weight loss drug.”

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.

USE OUR CONTENT

This story can be republished for free (details).