How Facebook is Harming the Fight Against HIV – James Finn – The Blog

Are you a Facebook user? If you identify as LGBTQ, Facebook algorithms have your number, according to extensive reporting by Wired and ProPublica. If you’re a gay man at risk for HIV, Facebook knows. Your feed is probably full of targeted ads that spread lies about the anti-HIV drug PrEP. You may have formed the (mistaken) conclusion that PrEP, a crucial tool in the fight to end HIV, is dangerous. Many people have.

“Gilead Science and Truvada cause kidney damage and bone loss,” screams one overhyped ad from law firm KBA Attorneys. “If you took Truvada and suffered from side effects, you deserve compensation.”

This issue goes beyond misinformation, as it puts real people’s lives in imminent danger.

I first started noticing this ad early last summer. I saw it, or something very much like it, many times a day as I used Facebook to promote my writing or catch up with friends. Sometimes, I’d see an untruthful anti-Truvada post in every 20 or so items Facebook chose to show me.

Some of them even looked like real posts by individual Facebook users, that is until I investigated further and realized they were “boosted,” Facebook lingo for posts they distribute more heavily in exchange for money.

I tried pushing back, commenting that the information was not just misleading, but irresponsible and factually incorrect. Several times, somebody actually answered my comment with even more misinformation. People were monitoring the ads and engaging (untruthfully) with readers!

I’m not alone. According to Rich Ferraro of GLAAD, the LGBTQ media organization, “There’s a range of personal-injury law firms running [false Truvada ads], and there were millions of views on some of them.”

The Washington Post analyzed data from the Facebook Ad Library and found that six anti-PrEP ads from just two personal injury firms got up to 1.3 million views each.

PrEP, a medication that prevents infection in people exposed to HIV, is available in two Gilead Science formulations, Truvada and Descovy. PrEP is key to highly effective strategies that world health organizations and the US government are executing to strangle viral circulation.

In former epicenters of the HIV epidemic like New York City, London, Amsterdam, and San Francisco, rates of new infections are plummeting, expected to reach near-zero levels soon. Much of the credit is due to PrEP, though much work remains to be done in terms of access, especially among people of color and the uninsured in the United States.

Claims of dangerous bone loss and kidney damage are not just overhyped, they’re objectively untrue. Like all medication, Truvada presents a risk of side effects, but those risks are very small, and proper medical supervision practically eliminates them as a concern.

Jonathan Van Nuys of the San Francisco Aids Foundation explains it this way —

Truvada is known to cause changes to bone mineral density that are not clinically significant. On average, Truvada has been shown to cause a 1% decrease in bone mineral density, a change that reverses once the medication is stopped. We say this change is “not clinically significant” because bones are not more likely to fracture or break despite a small but measurable change in bone mineral density.

Rarely, people may experience decreased kidney function when they start Truvada. Mandatory blood tests catch the problem quickly, and practically nobody experiences permanent damage. Van Nuys explains —

Some people taking Truvada, often those taking other medications, have changes in kidney function. While estimates for how many people experience this vary, one study showed that only 1 in 200 people taking Truvada had a drop in kidney function outside of normal range. If a decrease in kidney filtration rate occurs on Truvada, it is usually reversible after Truvada is stopped. To be safe, providers of PrEP and HIV care monitor the kidney function of everyone taking Truvada. In the PrEP program at San Francisco AIDS Foundation, we have found that it is extremely rare for people taking Truvada to experience kidney issues caused by the medication.

In an open letter from December 9th, signed by more than 50 leading LGBTQ and public health organizations, GLAAD spells out the critical problems Facebook is causing.

The false advertisements “are scaring away at-risk HIV negative people from the leading drug that blocks HIV infections. This is despite numerous studies underscoring the safety of TDF in HIV-negative PrEP users.”

The letter puts Facebook ad policies in hard focus, noting that the fake ads are a matter of life and death. “This issue goes beyond misinformation, as it puts real people’s lives in imminent danger.”

  • Facebook and Instagram immediately remove the advertisements that are harming public health.
  • Facebook and Instagram be transparent with users and the LGBTQ community on their advertising policy around misinformation which states that “in certain circumstances” Facebook prohibits ads that include “claims debunked by organizations with particular expertise.”
  • Facebook commits to a review and potential update of current advertising policies to prevent false or misleading public health statements from reaching users.

Facebook has not removed the ads, nor have they responded to inquiries from the Guardian, The Washington Post, or from GLAAD itself. GLAAD has purchased its own ads to promote the open letter, hoping LGBTQ people and others at risk for HIV will share and promote the story.

According to Out Magazine, at the same time the false anti-Truvada ads were taking Facebook by storm, the company rejected ads to raise awareness of PrEP.

At first, Facebook rejected PrEP awareness ads by claiming they were too sexual. After one medical provider successfully appealed that ruling, Facebook denied the ads again, telling medical providers they weren’t “authorized to run ads about social issues, elections or politics.”

At this very moment, my own Facebook feed is filled with untruthful ads that tell me how dangerous PrEP is. I haven’t been able to find a single post that promotes PrEP awareness or that debunks the false ads.

Whatever policies that Facebook has put in place are not working. Policies that damage public health awareness and erode trust in proven, critical, safe medication necessary to end a life-threatening viral epidemic cannot be good policies.

Policies that run contrary to the recommendations of of every public health agency in the world cannot be good policies.

Oh, and that open letter GLAAD advertised on Facebook? The one they hope to influence people with? I’ve never seen it on Facebook. Not one time. Ever.

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