By Liam Knox
The decision comes a month after an open letter from LGBTQ advocates demanded removal of the advertisements, warning they could lead to a public health crisis.
Facebook has disabled some advertisements about the potential side effects of HIV prevention medication Truvada following complaints that they were misleading and a “harm to public health.”
The decision comes less than a month after almost 70 LGBTQ advocacy organizations signed an open letter demanding the social media giant “immediately remove” the “inaccurate advertisements,” which they claimed were targeting gay Facebook and Instagram users.
“After a review, our independent fact-checking partners have determined some of the ads in question mislead people about the effects of Truvada," Facebook spokeswoman Devon Kearns wrote in an email to NBC News. "As a result, we have rejected these ads and they can no longer run on Facebook.”
The advertisements, purchased by personal injury law firms looking to recruit plaintiffs for a class-action suit against pharmaceutical manufacturer Gilead Sciences, claimed that HIV prevention drugs were linked to serious bone and kidney damage. The problem, according to advocates and health experts, is that the side effects listed were only an issue for those who were living with HIV and undergoing long-term treatment — not those who used the drug as a preventative measure.
Health experts and HIV activists began advocating for the advertisements’ removal in September. Some doctors expressed concern that the advertisements were having a “chilling effect” on the use of HIV prevention medication in the LGBTQ community.
“I’ve had my patients coming in to see me saying, ‘Should we be switching me off of Truvada?’” Demetre Daskalakis, deputy commissioner of disease control at the New York City Department of Health and Mental Hygiene, said earlier this month. “It's really frustrating.”
In recent weeks, lawmakers have joined the call for the ads’ removal, including New York Gov. Andrew Cuomo, Sen. Bob Menendez, D-N.J., and Democratic presidential candidate Sen. Elizabeth Warren, D-Mass.
Facebook had initially declined to remove the advertisements, saying they had passed the muster of their independent fact-checking agencies. According to a spokesperson for GLAAD, the LGBTQ advocacy organization that spearheaded the campaign, one of the company’s fact-checking agencies, Science Feedback, emailed the group Friday explaining that they had ruled some of the ads misleading.
According to Facebook’s advertisement library, advertisements with similar language to those deemed misleading have also been removed. But in a statement from GLAAD, the organization said it has found many similar ads still running on Facebook, and called for the company to review its advertisement policies.
“Removing select ads is a strong first step, but the time is now for Facebook to take action on other very similar ads which target at-risk community members with misleading and inaccurate claims about PrEP and HIV prevention,” GLAAD President and CEO Sarah Kate Ellis said in the statement. “The pervasiveness of these ads and the subsequent real world harm should be catalysts for Facebook to further review how misleading and inaccurate ads are allowed to be targeted at LGBTQ and other marginalized communities.”
Peter Staley, a longtime HIV activist and co-founder of PrEP4All, a coalition working to expand access and use of PrEP medications, said that while the action is appreciated, its limited scope and Facebook’s delayed response are concerning.
“It's a messy way to deal with what we've characterized from the get-go as a public health crisis that they are causing,” Staley said. “It's not how you deal with AIDS activists, and it’s not how you deal with a community that you have a formalized relationship with.”
Staley said that he and other advocates are eagerly awaiting a formal response from Facebook, which he said the company has promised to release this week. He was both disappointed and unsurprised, he added, that it took a public outcry to elicit some action from the company.
“[Facebook] acts like a fortress on a hill, and the only way you get their attention is if you create a big enough cannon that punches a hole through one of their walls,” he said. “God help anyone with an equally serious issue who doesn’t have one of those cannons.”
How to spot deceptive drug injury ads like the ones Facebook just disabled
Health Jan 3, 2020 1:50 PM EST
Some ads can be more than misleading – they can put your health at risk.
Last year, ads paid for by law firms and legal referral companies started cropping up on Facebook. Typically, they linked Truvada and other HIV-prevention drugs with severe bone and kidney damage.
But like a lawsuit, these assertions do not always reflect the consensus of the medical community. They also do not take into account the benefit of the drug or how often the side effects occur.
On Dec. 30, Facebook said it disabled some of the ads after more than 50 LGBTQ and HIV/AIDS groups signed an open letter to Facebook condemning them for “scaring away at-risk HIV negative people from the leading drug that blocks HIV infections.”
Based on our research involving televised drug injury ads, advocacy groups are right to raise the alarm about how these ads might affect important health decisions.
Although drug injury ads are selling legal services, that’s rarely obvious, making it harder for consumers to invoke their usual skepticism toward medical information from lawyers.
Here are a few deceptive tactics we noticed in the Facebook Truvada ads, which you can also spot in drug injury advertisements more broadly.
Ads in disguise
Advertisements in this genre sometimes masquerade as other types of content, like public service announcements or local news. For example, a series of identical Truvada-related ads sponsored by “Lawsuit Watch” and “Advocate Alliance Group” prominently featured video from a local news story.
This clever but ultimately misleading tactic is known within the marketing literature as an “Omega strategy,” in which the advertiser tries to “redefine the sales interaction” to disguise its pitch. It’s like when insurance companies offer to “assess your personal risk,” when they’re really just trying to sell you insurance.
Facebook yanks misleading HIV lawsuit ads after protest, headlines and fact check
Jan 2, 2020 10:29am
by Beth Snyder Bulik
Facebook yanked ads trolling for HIV drug plaintiffs after LGBTQ, public health and HIV/AIDS prevention advocates argued the law firm promos were not only misleading but also endangering public health.
More than 50 groups co-signed a letter urging the social media giant to pull the ads from its Facebook and Instagram platforms and address the misinformation it was spreading.
The law firm ads encouraged patients using Gilead Science’s Truvada to reduce the risk of contracting HIV—so-called pre-exposure prophylaxis (PrEP)—to join personal injury lawsuits over alleged side effects.
The letter triggered widespread headlines, and Facebook decided to remove some of the ads after an independent fact-checking review found them misleading.
RELATED: Gilead, LGBTQ community ask Facebook to remove misleading PrEP ads
Gilead had applauded the organizations standing up for their communities. “We join calls to have any misleading advertisements related to Gilead’s HIV medications removed from Facebook," Gilead SVP Amy Flood said in a December statement to FiercePharma.
According to the latest news reports, LGBTQ organizations led by GLAAD originally notified Facebook of the problematic ads in September. It wasn't until after an open letter was published in December and more widespread media coverage began that Facebook decided to call in the independent fact-checker, according to the Washington Post.
In an assessment published December 24, Facebook fact-checking partner Science Feedback concluded that the ad overstated the risks in taking Truvada for PrEP.
Independent fact-checkers found “some of the ads in question mislead people about the effects of Truvada,” a Facebook spokeswoman told the Washington Post, and added that “as a result, we have rejected these ads and they can no longer run on Facebook.”
RELATED: Gilead doubles transgender community grant awards to $4.5M
GLAAD said the removal of some of the ads is “a strong first step.” However, the group’s president and CEO Sarah Kate Ellis also called on Facebook to go further and “take action on other very similar ads which target at-risk community members with misleading and inaccurate claims about PrEP and HIV prevention.”
HIV drug Truvada linked to kidney damage and bone density loss, but risks are low and usually outweighed by the drug’s benefits
Several advertisements warning of the potential side effects of taking Truvada, one of two approved antiretroviral medications used to prevent HIV infection, have recently been circulating on Facebook. We reviewed a webpage on which one of these ads was based, posted by “A Case for Women,” an organization that claims to “empower women to change their lives and help others through legal action” and encourages people who believe they were injured by the drug to pursue lawsuits against the manufacturer Gilead Sciences. The webpage claims that Truvada “could cause an increased risk of bone density problems and kidney failure” and has received more than 1.3 million views since July 2019.
Scientists who reviewed the webpage found that although the claim that Truvada can cause kidney damage and decrease bone density in those who take the drug is accurate, and that these side effects are stated in the drug’s prescribing instructions, the webpage overstates the risks for those who take Truvada as a preventative rather than as a treatment. It also ignores the fact that the health benefits of taking Truvada for both HIV prevention and treatment may greatly outweigh the risks.
The claim that “Truvada could cause an increased risk of…kidney failure” is based in part on a 2012 study by researchers at the San Francisco VA Medical Center and the University of California, San Francisco (UCSF). It found a 33% increase in the risk of HIV-positive individuals developing chronic kidney disease, but this represents an increase from 1% of patients not taking Truvada to only around 2% in those taking the drug*. In addition, this study investigated only individuals who were already infected with HIV and therefore does not provide an estimate of the risks to the uninfected individuals targeted in the web page. The page therefore misleadingly and mistakenly applies the severity of the side effects to those who take Truvada to prevent—not treat—infection.
HIV-positive individuals who use Truvada to control their infection are more likely to experience kidney damage and bone density loss than those who take it to prevent HIV infection, as so-called pre-exposure prophylaxis (PrEP). But “no significant health effects have been seen in people who are HIV-negative and have taken PrEP for up to 5 years,” according to the U.S. Department of Health and Human Services. Numerous studies have shown that the risk of HIV-negative Truvada users developing kidney disease is not statistically significantly different from those taking placebo.
In terms of bone mass density, a clinical trial of HIV-negative individuals found small decreases of 0.4% to 1% on average compared with individuals taking a placebo. But bone mass density returned to pre-exposure levels after patients stopped taking the drug. “The bone density drops are on the order of a few percent and therefore carry very low risk of fracture. Alcohol and smoking has greater impact. Prednisone is much worse,” said Dr. David Wohl**, a professor of medicine at the University of North Carolina School of Medicine who reviewed this claim for Health Feedback.
Truvada used as PrEP has been extremely effective in preventing the spread of HIV. ”Studies have shown that PrEP reduces the risk of getting HIV from sex by about 99% when taken daily,” according to the U.S. Centers for Disease Control and Prevention. Truvada appears on the World Health Organization’s List of Essential Medicines, which is “a list of minimum medicine needs for a basic health-care system, listing the most efficacious, safe and cost–effective medicines for priority conditions.”
But as a result of ad claims such as the one reviewed here, many clinicians, including Dr. Wohl, have described increasing concern on the part of their patients about the risks of bone fractures and kidney disease that may result from taking Truvada. This, they say, could jeopardize the advances made in HIV prevention and treatment since the drug’s approval in 2004.
As with any drug, clinicians recommend that patients discuss potential side effects with their doctor and weigh the risks and benefits of continued use. A press release issued by UCSF about the 2012 study quotes the study’s principal investigator, Michael Shlipak, as saying, “for an otherwise healthy patient, the benefits of tenofovir [the primary component of Truvada linked to kidney damage] are likely to exceed the risks, but for a patient with a combination of risk factors for kidney disease, tenofovir may not be the right medication.” It further paraphrases Shlipak as saying that “HIV, itself, increases the risk of kidney damage, while modern antiretroviral treatments clearly reduce that overall risk.”
Gilead itself does not recommend Truvada for use by individuals with kidney impairments, as measured by creatinine clearance levels below 60 or 30 milliliters per minute, depending on their HIV status, which estimate the kidneys’ ability to remove waste products from the blood. And for those with a history of osteoporosis, bone loss, or an unusually high rate of bone fractures, Gilead recommends consulting with a doctor about the risks and benefits before taking Truvada.
UPDATE (27 Dec. 2019): *After this review was published, Dr. Michael Shlipak noted an error in our description of his 2012 study. This study did not compare patients taking a placebo to those taking Truvada. Instead, it compared patients taking Truvada to those not taking the drug. The original sentence read: “It found a 33% increase in the risk of HIV-positive individuals developing chronic kidney disease, but this represents an increase from 1% of patients taking the placebo to only around 2% in those taking Truvada.”
Christina Wyatt, Associate Professor of Medicine, Duke University School of Medicine: Tenofovir disoproxil fumarate (TDF) has been associated with higher rates of bone mineral density (BMD) decline and glomerular filtration rate (GFR) decline in randomized controlled trials, and with higher odds of kidney disease in observational studies. They are probably overstating it a bit with “kidney failure”, which was not the endpoint in any of those studies (most of the studies considered estimated GFR or creatinine clearance levels lower than 60 mL/min).
David Wohl, Professor of Medicine, University of North Carolina School of Medicine: **Disclaimer: Dr. Wohl receives partial funding for his HIV research at UNC from Gilead Sciences, as well as honoraria from Gilead, ViiV, and Merck for the development of non-commercial/non-promotional HIV education programs. He also participates in advisory boards for ViiV, Janssen, and Merck.
This statement is true. The package insert (prescribing information) for Truvada states as much.
I don’t agree with the underlying argument of the site. But it has been well known that Truvada can reduce bone density and that some people can experience kidney problems on the drug.
Here’s the deal: there was never a secret that Truvada had bone and kidney effects. This was well-appreciated early on. The bone density drops are on the order of a few percent and therefore carry very low risk of fracture. Alcohol and smoking has greater impact. Prednisone is much worse. The kidney toxicity is pretty rare and clinicians monitor closely. Motrin and Alleve, [two common NSAID pain relievers, are] worse.
Truvada has saved innumerable lives. It is so much better than the HIV meds that came before it and as a preventative it has worked so well that it is partially responsible for the decline in new HIV diagnoses in the U.S.
So the beef here [on the website that posted this claim] is that Gilead did not bring out a better version sooner. Sure they should have, but it was not like Truvada was so awful or that a company is obligated to make a new and improved version available.
The site paints a distorted picture of risk versus benefit. Many of my patients come to me asking about this, thinking [that] Gilead hid data or risks. That is untrue.
Facebook disables some misleading ads on HIV prevention drugs, responding to growing outcry
Dec. 30, 2019 at 3:11 p.m. EST
The ads, first reported by The Washington Post, threatened to create a public health crisis, LGBT groups had said.
Facebook users have been bombarded with misleading ads about medication meant to prevent the transmission of HIV, according to lesbian, gay, bisexual and transgender advocates, who say the tech giant’s refusal to remove the content has created a public-health crisis.
The ads have been viewed millions of times in recent months, Facebook’s archive reveals, and LGBT organizations argue they’ve had a dire effect: They’ve scared patients, potentially those who may be most at risk of contracting HIV, out of taking preventative drugs, known as PrEP, even though health officials and federal regulators have said they are safe.
Many of the ads appear to have been purchased by personal-injury lawyers and entities affiliated with them. They allege in lawsuits that HIV medications, such as Truvada, actually threaten patients with serious side effects. But groups led by GLAAD, which regularly advises Facebook on LGBT issues, say the ads are “false” and have urged Facebook for months to take them down — to no avail.
In response, GLAAD plans to step up its efforts on Monday, joining the Human Rights Campaign, The Trevor Project and 49 other prominent LGBT groups in publicly calling out the tech giant for a policy that puts “real people’s lives in imminent danger.”
The ads also have worried some health professionals, like Demetre Daskalakis, the deputy commissioner for the Division of Disease Control at the New York City Department of Health and Mental Hygiene. He said the ads, which he has seen on his own Facebook feed, threaten to undo years of work to promote a drug that can cut down on the transmission of HIV and potentially save lives.
“I still see patients,” Daskalakis said. “Four of my seven PrEP patients came in and said, ‘How could you be putting me on this medication that’s so unsafe? My Instagram ads say so.’”
Facebook, meanwhile, says the ads do not violate its policies.
“We value our work with LGBTQ groups and constantly seek their input,” spokeswoman Devon Kearns said in a statement. “While these ads do not violate our ad policies nor have they been rated false by third-party fact-checkers, we’re always examining ways to improve and help these key groups better understand how we apply our policies."
Gilead delayed safer HIV drug to extend monopoly profits, advocates allege
For Facebook, the dispute surrounding its approach to Truvada and other HIV medications reflects its continuing struggle over what to do about false, ambiguous or controversial ads in the age of the Internet, where social-media platforms easily can become conduits for misinformation — with unprecedented influence and reach far beyond its print, radio and television predecessors.
The issue has commanded rare public attention recently because of the 2020 election, given the falsehoods peddled by President Trump’s campaign that Facebook has refused to take down. But political ads next year are expected to generate less than 1 percent of the company’s revenue, reflecting the enormity and complexity of Facebook’s task — as a site that serves more than 2 billion users globally — to protect people from a wide array of harm.
Determining what is true and false often is difficult, and the content the company allows or rejects can have vast consequences for free speech, civic discourse and even public health. Personal-injury lawyers representing thousands of HIV patients, for example, say the data actually are on their side — and that they have a role in informing patients about the risks in medication.
“These Facebook ads provide a service to let them know there are options available for them now,” said Robert Jenner, the co-lead counsel in the consolidated lawsuit.
or paid speech that isn’t purchased by candidates, Facebook’s fact-checkers do vet some dubious claims, and the company takes action against ads that could harm users in real life. Facebook also has specific policies around ads that touch on sensitive health issues such as vaccines. The social-networking giant began clamping down on anti-vaccine groups this February after months of criticism that it had allowed malicious actors to spread falsehoods about such preventative care.
For LGBT activists, the concern is that Facebook has become a conduit for false or misleading information about HIV prevention medication. They pointed to ads run by Facebook pages under names such as "Lawsuit Watch" and "Advocate Alliance Group" in October that encouraged people who may have "suffered kidney or bone damage after Truvada/PrEP" to reach out for possible "financial compensation."
“Almost immediately we started hearing reports from front-line PrEP prescribers, clinics and public health officials around the country, saying we’re beginning to hear from potential clients that they’re scared of trying Truvada because they’re seeing all these ads on their Facebook and Instagram feeds,” said Peter Staley, a long-time AIDS activist who works with the PrEP4All Collaboration. “We realized we had a major problem on our hands.”
To LGBT groups, the trouble with ads about Truvada is a critical distinction involving the way the drug is administered. It can be taken as a form of treatment by those who have HIV, and it can be taken as a form of prevention by those who do not.
When taken as HIV treatment, the drug — and others that share a key ingredient, a form of the antiretroviral tenofovir — may cause serious side-effects, potentially in combination with some other medications. Some patients have brought lawsuits in response, alleging that manufacturers, such as Gilead, caused people undue harm by keeping better, less harmful drugs off the market for years. When taken as HIV prevention, however, PrEP is considered safe and not life threatening, according to experts, including the Centers for Disease Control and Prevention, which says that “no serious side effects have been observed.” Lawyers in pending litigation contest this claim.
Some of the Facebook ads unearthed by LGBT leaders lack nuance, they say. The ads attribute serious kidney and bone side-effects to PrEP, which activists argue is incorrect. And they use images of pills that might lead a person to think they’re taking something dangerous for them, even though the research says otherwise, said Daskalakis, a top health official in New York City.
Adding to activists and experts’ fears, it is unclear how personal-injury lawyers and other advertisers are targeting their ads. Facebook does not disclose what characteristic, such as one’s personal interests or traits, determines if people see an ad. Instead, its public ad archive reveals only general characteristics and the number, in ranges, of people who ultimately viewed it
The six ads purchased in October by Lawsuit Watch and Advocate Alliance Group, for example, had as many as 1.3 million views on Facebook, a Post analysis of Facebook records shows. That reflects only a small fraction of the total PrEP-related ads that have given activists pause. Contacted over Facebook, the operators of those pages did not respond to a request for comment.
Another page called “A Case For Women,” which appears to connect potential plaintiffs with law firms, ran a series of five ads in August and September that said “Truvada and other HIV prevention medications have been linked to serious bone and kidney problems,” according to Facebook’s archive. The series of ads had been viewed up to 500,000 times, company records show.
The leader of the organization, Susan Jones Knape, initially said in an email to The Post that her group was “not running Facebook ads related to Truvada.” Presented with an example, she clarified that her group had run ads for six weeks.
Jenner, the personal-injury lawyer helping to lead the litigation, described ads about Truvada and PrEP as essential and appropriate. “The claim that somehow this is dangerous to a certain group of people who have HIV, but is not dangerous to people who do not have HIV, is misplaced,” he said.
LGBT groups first took action in September, reaching out to contacts at Facebook in a bid to get the problematic PrEP ads removed. GLAAD, in particular, sought to leverage its position in Facebook’s “Network of Support,” a collection of six organizations that long have formally guided the tech giant’s work on LGBT issues. After weeks of silence, Facebook referred GLAAD to its “public-facing page that lists Facebook ad policies” and its third-party fact-checking process, said Rich Ferraro, GLAAD’s communications officer.
Since then, GLAAD has contacted Facebook’s independent fact-checkers, including the Associated Press, but has received only a short response from the AP acknowledging it had received the note. Since then, no labels have been appended to any of the ads. Facebook declined to explain to The Post how the ads fit with their policies, and the AP did not respond to a request for comment.
“Facebook’s refusal to take action on ads that target at-risk community members with false medical information points to a much larger problem for Facebook users and an urgent need for LGBTQ safety to be prioritized across their products,” said Sarah Kate Ellis, the leader of GLAAD.
With the ads still active — six months after initially discovering them — GLAAD and its peers are publicly sounding the alarm. In a new open letter to Zuckerberg, they pointed to the Facebook executive’s own, prior statements on Capitol Hill. Responding to a question from Rep. Alexandria Ocasio-Cortez (D-N.Y.), Zuckerberg pledged at a congressional hearing that the company in cases of “imminent physical harm” would always “take that content down.”
The 52 LGBT organizations say Facebook has failed to live up to Zuckerberg’s pledge. “By allowing these advertisements to persist on their platforms, Facebook and Instagram are convincing at-risk individuals to avoid PrEP, invariably leading to avoidable HIV infections,” they wrote. “You are harming public health.”
To be sure, some LGBT advocates said that Facebook — the place many people turn for information — isn’t wrong to allow lawyers to reach out to users about serious health issues. And they didn’t take issue with some of the claims levied as part of patients’ lawsuits.
Instead, they said the problem is the language and photos that some lawyers have used in their ads, and Facebook’s refusal to engage with them on improving policies that directly affect patient care, which have out-matched their ability to inform people at scale on the social network.
"Facebook, when we confronted them with all this, acted like the god-like institution they are," said Staley, the long-time AIDS activist, lamenting the company’s slow response.
“They refused to budge even though we said that’s not how it played out in the real world,” he continued, adding of Facebook’s behavior: “You’re feeding the crisis.”