By Kate Thayer / Chicago Tribune
HIV prevention advocates say widespread social media advertisements that misrepresent side effects of a preventative drug could do serious harm in the fight to eliminate the disease, especially among those most at risk who also might not trust the medical community.
“It’s causing undue duress and alarm and frankly could result in people exposing themselves to HIV unknowingly,” said David Ernesto Munar, chief executive officer at Howard Brown Health in Chicago.
The organization is among several that signed an open letter to Facebook this week, urging the company to remove ads circulating on its platforms about class action lawsuits over Truvada PrEP (Pre-Exposure Prophylaxis), a medication used to prevent HIV. The ads are from law firms targeting the LGBTQ community and seek plaintiffs who use the drug and have experienced side effects affecting kidney function and bone density.
“This is not rooted in science,” said Kristin Keglovitz Baker, chief operating officer and physician’s assistant at Howard Brown Health.
Facebook has not removed the ads from its site, or Instagram, which it also owns, and released the following statement: “We value our work with LGBTQ groups and constantly seek 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.”
Baker said she’s had numerous patients come to her, worried after seeing the ads, and they’re typically those most at risk for HIV, including men of color and trans women.
“Also when you look at the communities most impacted by HIV, those are the very same communities who have mistrust with the medical community,” she added.
Baker said she’s changed her strategy from answering patients’ questions after they see the ads and instead brings it up, herself, to assure them PreEP is safe and side effects are rare, and to make sure they know what the studies actually show.
“But I also want to bring it up because I want to engage in that conversation so they know there’s no conspiracy,” she said. “I’m talking about this proactively.”
Dr. John Schneider, associate professor of medicine and epidemiology at the University of Chicago and director of the University of Chicago Center for HIV Elimination, also treats patients at Howard Brown. He said he’s rarely seen the side effects described in the ads.
The ads worry him because young adult men — prime candidates for the drug — are already hesitant to take a daily pill and regularly see a physician.
“I’ve spent the majority of the last five to seven years developing public health campaigns and ways to promote PrEP, and it’s really hard,” Schneider said. “These are young people who have many other priorities. Many are just trying to get by.”
The Centers for Disease Control and Prevention issued a report recently that showed about 18% of the 1.2 million people who could benefit from PrEP have a prescription; it also showed that use is especially low among young people, African Americans and Latinos.
Public health officials have said use of PrEP is a vital part of a federal initiative aimed at eliminating the spread of HIV by the year 2030.
“If we’re really going to end an epidemic in Chicago, those rates (of PrEP users) need to be much, much higher,” Schneider said. “Getting this medicine out there and getting people interested … we’re struggling with that. And on top of that, there’s a new misinformation campaign? It’s definitely not helpful, and in fact it’s harmful.”
Erica Gafford, data specialist manager of the HIV services program at the Center on Halsted, said the social media ads are furthering stigmas and misrepresentation surrounding HIV, the LGBTQ community and PrEP. She said that, when the drug was introduced, people assumed it would increase risky sexual behaviors, similar to historical outrage over the birth control pill.
The misinformation campaign is the latest obstacle to the work of public health advocates trying to educate those who are at risk and anxious about contracting HIV.
“PrEP is provided so people do not have to live with this paralyzing fear,” she said. “We are actively trying to combat misinformation by providing people with actual facts.”