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Facebook's 'inaccurate' HIV PrEP ads an 'imminent danger,' LGBTQ groups say

Dozens of LGBTQ and HIV and organizations signed an open letter claiming the ads are “causing significant harm to public health.”
Image: Truvada
HIV prevention drug Truvada.BSIP / Universal Images Group via Getty Images

More than 50 LGBTQ, HIV and public health organizations have signed an open letter calling on Facebook to remove “factually inaccurate” advertisements placed by law firms that “suggest negative health effects” of HIV-prevention medication Truvada, a type of pre-exposure prophylaxis, or PrEP.

“The advertisements are targeting LGBTQ Facebook and Instagram users, and are causing significant harm to public health,” the letter states. “The law firms’ advertisements are scaring away at-risk HIV negative people from the leading drug that blocks HIV infections.”

The ads were bought by various law firms looking to use the platform’s targeted advertising capabilities to recruit gay and bisexual men for a class-action lawsuit against Gilead Sciences, the pharma giant that manufactures Truvada, a once-a-day pill that when taken regularly is 99 percent effective at preventing HIV transmission, according to the Centers for Disease Control and Prevention.

Image: HIV-prevention Facebook ads
Courtesy of GLAAD

The open letter, signed by groups including ACT UP New York, amfAR and University of Chicago Medicine, claim the ads are misleading because they give the impression that PrEP may be generally harmful, when the side effects the ads warn against are primarily an issue with long-term treatment for people already living with HIV.

In a statement emailed to NBC News, a spokesperson for Facebook said the company values its “work with LGBTQ groups” and both welcomes and seeks out their input.

“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,” the spokesperson wrote.

‘Ambulance chasers’

The class-action lawsuit for which the law firms are trying to recruit clients was originally filed in May 2018 and claims patients who experienced certain side effects, including kidney damage and bone density loss, from Truvada could have avoided them had Gilead not intentionally delayed the release of a safer version of the drug, which it shelved in 2004.

Peter Staley, a longtime HIV activist and co-founder of PrEP4All, a coalition working to expand access and use of PrEP medications, said that he began seeing the advertisements on his own social media platforms in September and was immediately concerned.

“For the last six months, they've been targeting gay men on Facebook and Instagram with visuals about PrEP, the word PrEP and the blue pill, which is very iconic now for PrEP users,” Staley said. “They're scaring the s---out of anybody who's seeing them.”

Gay and bisexual men are likely being targeted because men who have sex with men comprise 70 percent of new HIV transmissions in the U.S. annually, according to the CDC.

Staley said the law firms that took up the case last year aren’t to blame for the misleading ads. Instead, he said, it’s the flurry of smaller “ambulance chasers” eager to get in on a potentially big payday.

“We think that they are causing hundreds of HIV infections, based on the reports that we're getting from doctors. The clinics on the front line, they really say that these have a real impact,” he said.

‘A pretty significant chilling effect’

Demetre Daskalakis is the deputy commissioner of disease control at the New York City Department of Health and Mental Hygiene, and he also runs his own practice where he specializes in infectious diseases like HIV/AIDS. He told NBC News that he’s seen the impact of the ads first-hand, and that his colleagues across the country have, too.

Image: HIV-prevention Facebook ads
Courtesy of GLAAD

“We're all seeing and hearing the same thing, which is that this has a pretty significant chilling effect on trying to get folks on to pre-exposure prophylaxis, especially in communities that already have a baseline issue with medical trust,” Daskalakis said. “I’ve had my patients coming in to see me saying, ‘Hey, should we be switching me off of Truvada on to something else?’ It's really frustrating.”

The U.S. is behind in the fight to prevent HIV using PrEP: Only about 18 percent of the 1.2 million Americans who might benefit from the medication actually received a prescription for it last year, according to a recent CDC report.

Staley said the reasons for this gap include the unusually high cost of the medication in the U.S. (about $2,000 for a 30-day supply), the lack of trust in the relatively new medicine and misinformation.

“Our worst nightmare is coming true, because these ads are definitely sending us back,” said Staley, who has been on the front-lines of the movement since the early days of the HIV/AIDS epidemic.

Politicians enter the controversy

Following the release of the open letter Monday, a number of lawmakers have joined the call for Facebook to remove the ads.

On Tuesday, New York Gov. Andrew Cuomo, a Democrat, issued a statement urging Facebook to remove the “deceptive” ads.

“Health officials and federal regulators have been clear that Truvada — or PrEP — is safe and effective,” it reads. “This ad campaign is putting New Yorkers in danger and jeopardizing the great strides our state has made in helping end the AIDS epidemic.”

That same day, presidential candidate Sen. Elizabeth Warren, D-Mass., took to Twitter to condemn the ads.

“Facebook is allowing entities to target misleading and false ads about HIV prevention drugs to LGBTQ+ communities and others. This can have serious public health consequences” she wrote. “Facebook needs to put the safety of its users above its own advertising profits.”

Signatories demand review of Facebook’s ad policies

GLAAD, the national LGBTQ advocacy organization that spearheaded the campaign to remove the controversial ads, is a member of Facebook’s Network of Support, a group of LGBTQ organizations that the social media giant consults on how to improve user experience. Rich Ferraro, GLAAD’s chief communications officer, said his organization initially tried to address the issue directly with Facebook but was met with resistance and an obtuse fact-checking system outsourced to third-party organizations.

“Facebook is clearly hiding behind their third party fact-checking agencies, but those agencies might not ... have expertise in LGBTQ issues,” he said, adding that one of the fact-checking agencies,, is part of The Daily Caller, an online outlet founded by right-wing pundit Ben Shapiro that has published a number of anti-LGBTQ articles and op-eds.

Ferraro said Facebook’s wide reach and targeted advertising capabilities make it even more important for the social media company to carefully vet the ads on its platform.

“This isn't just an ad on a local news station or in a national newspaper,” he said. “The ambulance chasing law firms and the personal injury law firms behind these ads are able to target LGBTQ users and people who might be at risk for contracting HIV and who should be on PrEP.”

In addition to removing the ads, the open letter’s signatories are demanding that Facebook improve transparency with users — and the LGBTQ community in particular — around its policies for reviewing ads that contain potential misinformation. They are also asking the company to commit to a review of their current advertising policies “to prevent false or misleading public health statements from reaching users.”

Ferraro said he’s hopeful that Facebook will agree to the open letter’s demands, but he added that the fact that a public campaign was necessary at all is a troubling sign.

“This is one of the first public actions that GLAAD has taken against a social media company,” he said, noting that the organization’s work typically takes place “behind the scenes.”

“Social media is becoming home to anti-LGBTQ organizations and misinformation, and GLAAD is going to be holding them accountable in very public ways in the future,” he added.

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