A non-profit offers a drug that can prevent the spread of HIV. Why aren’t there more takers?

FIGHT leader: Tiffany Thompson directs Phila­delphia FIGHT’s Youth Health Empowerment Project. She says, “You’d be surprised at what people don’t know.”
Maria Pouchnikova

The guy lied. Marcus Berry didn’t mince words. Before the two lay down together, he asked, “Do you have HIV?” And the guy, a friend, someone Marcus thought he could trust, just lied. “No.”

Only later, after the pair had had sex, did the truth come out. Berry, now 23, remembered the anger and fear that shot through him. “I said, ‘Why didn’t you tell me and give me a chance to say no?’” said Berry, who lost a cousin to HIV, the virus that causes AIDS. “I got tested. I was OK, but everybody said, ‘You got lucky.’ And yeah, I knew it. I was really, really lucky.”

A short time later, Berry began taking a daily pill that can reduce the chance of being infected with HIV by more than 90 percent when taken regularly. The blue pill, sold under the brand name Truvada, has long been used to treat those who are HIV positive. The Federal Drug Administration approved its use as a pre-exposure prophylaxis, or PrEP, in 2012. Only this year were comprehensive clinical-practice guidelines for PrEP released.

In May, the Centers for Disease Control announced it was monitoring the drug’s use in four cities — Philadelphia, Chicago, Houston and Newark, N.J. That resulted in a burst of news reports about the drug, but not the expected rush of new prescription requests.  

“It’s the history of HIV. It was pushed aside. It was stigmatized. It was something other people had to worry about, so not enough resources went into it,” said Tiffany Thompson, who directs Phila­delphia FIGHT’s Youth Health Empowerment Project (YHEP).

“It’s easy for me and other folks in the bubble who are aware, but go into certain communities in North Philly or South Philly. Go into a bar in Rittenhouse. You’d be surprised at what people don’t know. That’s why we’re still struggling.”

Truvada, which generally has few side effects, is the most effective tool yet developed against HIV, which infects 50,000 Americans each year. Its California-based manufacturer, Gilead, offers financial-assistance programs covering the entire cost of the pills for the uninsured or the co-pays of those with insurance. (Purch­ased outright, the drug can cost as much as $1,000 per month.)

The drug could have a huge impact in Philadelphia, where the HIV infection rate is five times the national average, according to AIDS Fund Philly. And yet two years after the FDA gave the drug the go-ahead, Truvada is still not in wide use here or elsewhere.

The non-profit AIDS service organization, Philadelphia FIGHT, which has been administering a PrEP program since January 2013, estimated that about 50 clients have stuck with the program thus far, regularly picking up medications at the organization’s Center City offices and getting tests every three months to make sure their kidney functions are normal.

And while it’s a good thing that those 50 clients — most of them males between the ages of 13 and 24 — have kept themselves and their partners safe, PrEP advocates say the drug has huge potential to save even more lives if properly promoted.

“There was a lot of initial skepticism about PrEP in the medical community and so it did not have a quick uptake. It’s only now starting to get attention,” said Helen Koenig, a doctor with Philadelphia FIGHT.

For some, it’s already too late. The week before the nonprofit began to administer PrEP, four of its clients learned they were HIV positive.

“That Monday, in each one of these rooms, as you walked down the halls, you could hear a kid crying as they were told their diagnosis,” Koenig said. “We’re trained to care for them and get their HIV under control, but part of you wishes that big conver­sation you’re now having about risk reduction had happened a year earlier or two years earlier. Because that could have changed the course of their lives.”

Though HIV and AIDS were once written off as a disease only gays needed to worry about, it has become a disease of the poor, Koenig said.

“It’s a sign of a forgotten people,” she said. “If someone becomes HIV positive, it’s because that person has been pushed aside.”

The more HIV in a community, the more likely it is that somebody will encounter it, said Robb Reichard, Executive Director of AIDS Fund Philly. Some Philadelphia neighborhoods, including pockets in the north and southwest — have extremely high infection rates. These are usually communities that also have more violence. Being surrounded by so much death and pain can make some feel their destinies are pre-determined.

“We need to make sure they understand that it’s not inevitable and they do have options out there,” Reichard said.

While Jane Shull, executive director of Philadel­phia FIGHT, believes the city’s HIV transmission rate is actually more in line with other large cities, the continued spread of the disease is a problem. Some people who would benefit from PrEP or HIV treatment won’t seek help because they have outstanding arrest warrants and they don’t want to go to jail. They’re afraid their children will be taken away from them. They could lose their jobs.

“The reasons people don’t seek care reflect profound social realities,” Shull said. “You can’t expect an extraordinarily under-funded network of nonprofits to be able to overcome that.”

Backed by funding from the CDC, Philadelphia FIGHT’s I AM program seeks to engage gay or bisexual men of color with HIV or a high risk of getting the disease. Last year, the program provided more than 600 men with HIV testing, then offered them treatment or prevention options.

“I’ve seen a handful of really bad outcomes. Young people who are non-adherent to medical care or non-compliant patients, but those are the medical terms. Underneath all that, many of those engaging in high-risk sex­-ual behavior are just young people in a lot of pain,” said Noel Ram­irez, the program’s coordinator.

Some clients, like Berry, have become Truvada’s ambassadors, spreading news of its possibilities.  
“As word about PrEP gets out, we have local college students and partners of HIV positive folks coming in, doing what they can to stay negative. Our guys talk about PrEP to their friends. It’s a really wide spectrum,” said Caitlin Conyngham, practice coordinator for YHEP’s health clinic. “We really support people engaging in their health in a broad way. We have a run club and groups to talk about other experiences in their lives.”

 Berry was the second person to take part in Philadelphia FIGHT’s PrEP program. The first was Chris “Dash” Hall, 23. He remains free of infection, but he knows many peers living with HIV as well as those who ignore the risks.

“Some people don’t protect themselves.They don’t want to get tested. They’d rather not talk about it,” he said. “A lot of my HIV positive friends say they wished they’d known about PrEP. … Sometimes I feel helpless, but all I can do is offer love.”