The eyes of Damon Jacobs were slowly filling up with tears.
It was a warm and busy day in late June, and at a national HIV conference in Philadelphia, Jacobs was talking about the time that he first learned about AIDS. He was 14, and Rock Hudson, a movie star known for his all-American good looks and sense of humor, had contracted the disease.
“There was lots of media coverage contrasting this healthy 1950s heartthrob image with a very ill, very thin and sick man,” says Jacobs. That portrayal made Jacobs and his fellow gay friends afraid that if they came out of the closet, they might someday end up unhealthy and frail like Hudson. From the summer of 1985 until 2011, Jacobs says, he carried that fear on his shoulders.
After 26 years, pre-exposure prophylaxis, or PrEP, lifted that burden—but only briefly. Better known as Truvada, PrEP is a pill that can prevent HIV if taken once a day. When Jacobs first read about it after seeing dozens of friends die from AIDS, he was sure that people would flood the streets with joy. But the opposite happened: “Nobody was talking about it,” he says.
Jacobs is now a family therapist who works in AIDS research in Manhattan. He says he regularly sees young men in his practice who have tested positive for HIV, but who have never heard of PrEP. Jacobs blames this on primary care physicians and government agencies alike. “I encourage us all to think about how to get information to the people who need it the most,” he says.
According to the most recent statistics, there are more than 17,000 people living with HIV in Philadelphia, 12,000 of whom have full-blown AIDS. There is no data tracking exactly how many people use PrEP in the city. But national statistics are troubling: A study by the American Society of Microbiology found that white people, who make up 27 percent of new HIV cases in America, account for 75 percent of PrEP’s user base. Conversely, African-Americans, who make up 44 percent of new HIV cases in the nation, only constitute 10 percent of PrEP’s users; Hispanics, who make up 23 percent of new HIV cases, represent 12 percent of users.
In a majority-minority city with a HIV high rate, that’s a major cause for concern. And at least two measures show that PrEP is being underutilized in Philly: Philadelphia FIGHT, the city’s largest AIDS service organization, counts just 250 active PrEP users on its rolls. Meanwhile, only 170 people are taking advantage of the Philadelphia Department of Public Health’s free PrEP program, though nearly 700 have been referred to it.
The cost of PrEP doesn’t explain its lack of success in Philadelphia, health experts say.
Truvada retails for about $1,500 monthly, but there are assistance programs for both insured and uninsured people that enable them to purchase it for little to nothing. For example, the Gilead Advancing Access Program provides the drug for free to low-income patients without insurance who meet certain guidelines. And regardless of your income, PrEP is accessible at all of Philadelphia FIGHT’s health centers across the city.
It’s marketing PrEP—the most significant HIV prevention breakthrough in modern history—that has been most difficult. At a June summit held by Philadelphia FIGHT at the Pennsylvania Convention Center, Jacobs and other doctors said they thought the drug would market itself. They believed the blue pill manufactured by Gilead would go viral and that everyone, regardless of their race, class or sexual orientation, would learn about it.
But PrEP hasn’t become mainstream. Its visibility among out gay men is relatively strong: The pill is not only advertised on male-for-male dating websites, such as Grindr, Manhunt and Jack’d, but there is also an option on these platforms for users to identify themselves as being on PrEP. However, experts say that those who don’t identify as LGTBQ are much less likely to know about it. To make matters worse, PrEP is sometimes stigmatized like birth control once was—critics say it gives individuals the freedom to have sex without condoms.
Further complicating matters is the fact that Gilead, according to numerous physicians and AIDS activists, does not advertise the product. The company did not respond to repeated requests for comment over the course of several weeks. An employee at the company’s front desk did confirm with Philadelphia magazine that it does not have a marketing team, however—only a public affairs team.
“I’m critical of Gilead because I want them to do marketing,” says Jacobs. “It’s been almost four years since it was approved and they still haven’t marketed PrEP in a nationwide way.”
Jacobs credits Gilead for distributing funds to service providers such as Philadelphia FIGHT to spread the word. But he says the company should continue doing that and market the drug itself. “There is logic to giving local organization funds for them to tailor their message … using the language, the imagery, the representation to populations most at risk,” he says. “But I happen to think you don’t have to choose between those two. You can do both, and I wish they’d do both.”
Abdul-Ali Muhammad, an activist in the Black and Brown Workers’ Collective, argues that the majority of groups that receive advertising funds from Gilead are focused on gay men only—white gay men in particular. This means that other demographic groups that are at risk, such as heterosexual black women, often never learn about PrEP, he claims. Chip Alfred, a spokesman for Philadelphia FIGHT, says the misperception that many have of HIV/AIDS—that “it’s still seen as a gay disease”—makes it even harder for the drug to get attention outside of LGBTQ communities.
A study on family planning providers published this May in the medial journal Contraception found that only 38 percent of potential PrEP prescribers could define it, and only 37 percent could state its efficacy. Even more concerning is the fact only 36 percent of family planning providers had ever seen any PrEP guidelines.
“If we’re going to end HIV in this next decade, PrEP needs to be accessible and used by everyone who wants to use it and who could be at risk for HIV,” says Jacobs.
There is some good news: A handful of government agencies and local organizations have started to try to end the disparity in the usage of PrEP between whites and people of color.
Dr. Shannon Criniti, vice president of the Philadelphia-based reproductive health group AccessMatters, says the U.S. Department of Health and Human Services is developing an algorithm for family planning providers to better screen for and administer PrEP. The goal of the project is three-fold: increase client awareness of PrEP, boost provider knowledge of the drug, and reduce HIV transmissions.
In 2014, the Centers for Disease Control and Prevention issued the first clinical guidelines on the use of PrEP among heterosexual men and women, including women who are pregnant or trying to conceive. This is especially important for Philadelphia: Almost one-third of residents with new HIV diagnoses in the city are women, and there are more Black women living with HIV/AIDS today than white or Latino men, according to Dr. Helen Kwakwa, who runs the city’s Strawberry Mansion Health Center, where in 2015 approximately 50 patients were using PrEP.
Using its own staff and dollars, Philadelphia FIGHT also rolled out a PrEP education program in 2013 targeting gay and bisexual youth. The organization says Black and Latino men under the age of 30 make up the majority of participants. And in Washington, D.C., where Black women represent the second-highest demographic of new HIV infections, officials launched the first citywide program this June to encourage Black women get on PrEP using marketing and outreach with health care providers; the MAC Aids Fund has dedicated $1 million to the plan over two years.
Another good sign is that, although there are only 170 residents taking advantage of the city’s PrEP program, 80 percent are people of color. One-third are women.
But these efforts, while laudable, clearly aren’t enough. The fact that PrEP exists and that it works is a huge victory. But that only means that a battle — not the war — has been won. To emerge victorious in the war on AIDS, prevention and outreach must be more inclusive, PrEP must be more ubiquitous in traditional mainstream media as well as sexual education literature, and the stigma of HIV/AIDS must finally end.
Christopher “Flood the Drummer” Norris is an award-winning journalist, online content producer and professional drummer currently serving as the CEO of Techbook Online, a news and event company. Follow him on Twitter @floodthedrummer.