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From left: Susana Rivera, nurse clinician, Sally Hodder, HIV program director, Christie Lyn Costanza, research coordinator and Shobha Swaminathan, associate HIV program director, discuss HIV prevention methods at Rutgers New Jersey Medical School in Newark.
(Steve Hockstein)
By Heather Boerner
Forty-six-year-old Oshay was making breakfast in her Newark kitchen in May 2013 when her boyfriend came downstairs and dropped a bomb.
“I have HIV,” he told her.
Her first reaction was, “It can’t be.” After all, the couple had been together for a decade.
They’d had sex without condoms lots of times. After the shock wore off, she said she headed to the closest hospital for a rapid HIV test.
The result? Negative.
Oshay, who asked that her full name not be used, said she didn’t understand how it was possible, and said she wasn’t even sure she believed her boyfriend had HIV — he does — but she wanted to stay negative. So when she saw a flier for a clinical trial asking HIV-negative women to take HIV drugs to prevent transmission, she jumped at it.
Oshay is one of 25 women in Newark who so far have participated in research into the prevention approach, called pre-exposure prophylaxis (PrEP). The hope is that it can prevent the HIV-negative people from getting the virus that leads to AIDS as well as — or better — than condoms.
Recent guidelines from the U.S. Centers for Disease Control and Prevention make clear that PrEP is the newest and perhaps best option to prevent the spread of HIV.
And while gay men have been leery of the once-daily pill, straight women are signing up in record numbers — especially in New Jersey, according to Gilead Sciences, the California-based company that makes the HIV drug Truvada.
This is especially important in New Jersey, which ranks among the states with the highest number of HIV-positive women in the country, according to Carolyn Burr, deputy executive director of the Francois-Xavier Bagnoud Center at the Rutgers School of Nursing. New Jersey researchers are responding with cutting-edge research that puts a new spin on this prevention method.
“PrEP is a game changer, especially for women,” said Sally Hodder, vice chair of the Department of Medicine and director of the HIV/AIDS Program at Rutgers New Jersey Medical School. “It gives women, for the first time, the opportunity to control their protection.”
As many as 1,400 people in the United States. will be prescribed Truvada for PrEP this year, according to projections from Gilead. Nationally, nearly half of those people will be women, but in the Northeast, Gilead expects women to outnumber men when it comes to PrEP prescriptions.
Maybe that’s because women in some parts of New Jersey are at higher risk of contracting HIV than women in other parts of the country, Burr said.
Nationally, only 23 percent of people with HIV are women. In Newark, that number is closer to 36 percent, said Burr, at the Francois-Xavier Bagnoud Center where HIV-positive women and their children receive care. It’s even more dire for African-American women, who nationally account for 64 percent of new infections in women, despite being only 12 percent of the population, according to Hodder.
That’s because women in New Jersey, especially in Essex, Union and Bergen counties, live in an HIV hotspot with more people with untreated HIV than those in other parts of the state, according to Hodder. Poverty and race play a role, said Hodder, but so do poor access to health care and stigma about HIV. Fewer people in treatment means more people are likely to be infectious.
And while women can acquire HIV from drug use or sex, it’s more likely that they will acquire it from a steady partner, said James McMahon, an assistant professor of nursing at the University of Rochester. McMahon has studied HIV risk in couples where one partner has HIV.
Women in steady relationships are likely to have sex more and use condoms less than single women, said McMahon. And they may be more likely to have types of sex that increase their risk for HIV, such as anal sex.
And while it might seem odd that Oshay’s boyfriend kept his HIV status a secret for 10 years, McMahon says it’s not uncommon. Some HIV-positive men keep their status secret from their partner for fear of losing them, he said.
Communicating risk
Sometimes such secrecy is a way to approach relationships that put some women at risk of HIV.
Abuse, of course, raises a woman’s risk for HIV, said McMahon. In New Jersey, 1.3 million women experience intimate partner violence every year, according to the National Coalition Against Domestic Violence.
But so does poor communication.
When risk factors go unspoken, like men sleeping with other people or women exchanging sex for drugs or money, women don’t have the facts to protect themselves, McMahon said.
Trust is high in these relationships, said McMahon. But the trust is “I trust you not to bring the virus into our relationship.”
PrEP works by blocking the pathways HIV uses to set up infection. And while the CDC recommends taking Truvada daily, research presented at last month’s International AIDS Conference showed that taking PrEP just four times a week was enough to protect HIV-negative women from contracting the virus.
The CDC’s PrEP guidelines, released in May, don’t address such intermittent use. But they do direct doctors to talk to women in relationships with HIV-positive men about the prevention method.
Under the guidelines, doctors should prescribe a 90-day course of PrEP and regularly check for sexually transmitted infections, pregnancy and HIV infection. Truvada alone is not enough to suppress HIV once it is in the system, so testing is critical.
And while Truvada is the only drug currently approved by the FDA for PrEP, Hodder is investigating whether it’s the best option for women. Among other things, her study, called Next PrEP, tests the safety of HIV drug maraviroc for PrEP.
She’s also preparing to recruit women for a study of a long-acting injectible form of PrEP that would eliminate the need for a daily pill.
“It’s great to have Truvada, but it isn’t for everyone,” Hodder said. “We need to be looking for other options.”
For her part, Oshay said she continued on PrEP after her participation in the PrEP trial ended. And while she plans to stay with her boyfriend, she expects to use PrEP whether he’s in her life or not.
“No matter who you love, what situation you’re going through or who you’re with, it’s always going to be you,” said Oshay, whose sister died of complications to AIDS. “PrEP is excellent for saving your life. It’s saving my life. I believe that.”
Individuals interested in more information about PrEP or PrEP trials can call the
University of Medicine and Dentistry of New Jersey at (973) 972-1133.
Heather Boerner is a former Hopewell resident and health writer. Her book, "Positively Negative: Love, Pregnancy, and Science's Surprising Victory Over HIV," was released in July.