Many of the people most at risk of contracting HIV in Baltimore know nothing about a drug that is 92 percent effective in preventing the infection, according to new research from the Johns Hopkins Bloomberg School of Public Health.
Only about 40 percent of gay and bisexual men with no HIV diagnosis had heard of pre-exposure prophylaxis medication, or PrEP, according to findings published this month in the American Journal of Preventive Medicine.
Even men who had recently visited a doctor or been tested for a sexually transmitted disease were not told about the PrEP drug, a daily pill recommended by the Centers for Disease Control and Prevention for people at high risk of contracting HIV.
Use of the drug is seen by many public health officials as key to significantly reducing, and maybe one day even stopping, the spread of HIV, which has no cure. The pill, sold under the brand name Truvada, is a mix of two medicines used to treat HIV. It was approved by the FDA in July 2012 for pre-exposure protection against the virus that causes AIDS.
"PrEP is really the first new tool since the condom that prevents HIV effectively," said study leader Julia R.G. Raifman, a postdoctoral fellow in the Bloomberg School's Department of Epidemiology. "I just think the word has not gotten out there that much."
Baltimore is not the only place where the message is not reaching people. Since PrEP came onto the market in 2012, just 5 percent of high-risk people have used it nationally, according to CDC data.
The groups the CDC urges to take PrEP include people with HIV-infected partners and those who use intravenous drugs and share needles or have been in treatment programs for injection drug use.
Heterosexual men or women who don't always use condoms with potentially infected partners and gay or bisexual men who have sex without a condom, or are not in mutually exclusive relationships with partners testing HIV-negative, are also considered high-risk and should use PrEP, the CDC said.
The Johns Hopkins researchers say it's important to get the word out to gay and bisexual men because their rates of the disease are higher than among other groups, increasing their likelihood of HIV infection. Nationally, about 18 percent of gay and bisexual men were HIV-positive in 2011. In Baltimore, about 31 percent lived with the virus.
Raifman said awareness about the availability of PrEP is probably not spreading quickly because the drug companies aren't marketing it heavily. The research also found that doctors, particularly primary care physicians who aren't as knowledgeable about the drug as doctors who regularly treat gay and bisexual patients or those with HIV, aren't telling their patients about the drug. Most of the men included in the research study had been to a doctor in the past 12 months.
Another possible contributing factor was the initial disagreement over the drug. Some people considered it a "party drug" that gave users license to be sexually promiscuous — even though PrEP must be used consistently to be most effective. They worried it also contradicted the promotion of regular condom use as the best way to prevent infection.
The CDC says when PrEP is combined with condoms and other prevention methods it "provides even greater protection than when used alone."
The researchers took their data from the 2014 Baltimore MSM National HIV Behavioral Surveillance, a CDC-funded project conducted in 21 cities in the United States, including Baltimore. The survey collects data about HIV prevalence, risk behavior, testing behavior and exposure to prevention services over time with a focus on people at high risk for infection
Of the 401 HIV-negative people who took the survey, 168, or 42 percent, knew about PrEP. While people who had been tested for HIV in the previous year were more likely to know about the drug, those who had been to a doctor for other purposes, including getting tested for other sexually transmitted diseases, in many cases were not told about it.
"There have been missed opportunities to have this conversation about preventing HIV," Raifman said.
The Hopkins findings come as no surprise to doctors and health workers who treat and counsel people with HIV or who are at risk of infection. The Baltimore Health Department is using a large part of $20 million in federal funding it received last year to market PrEP. The effort includes counseling and support to help patients take the medication as prescribed.
Chase Brexton Health Services has created what it calls the Power Clinic, where anyone can come to its Baltimore headquarters twice a week and get information and treatment for HIV prevention. A large focus is on PrEP. Chase Brexton has prescribed the drug to 411 patients since it came to market.
While health workers there said spreading the word about the drug can be difficult, they note that more people know about it now than when it first came to market. They have figured out that using outreach workers who know and come from the community Chase Brexton serves works best at reaching hard-to-reach groups.
"Initially, it was like a one-size-fits-all marketing and outreach approach, which we know doesn't really work," said Emily Stiles, manager of the Power Project.
Annie Lee, a nurse practitioner and medical director of the Power Clinic, said some people may not realize they are at high-risk, whether because they are in denial or just misinformed.
"It is important for people to know about PrEP," she said. "It gives patients the power to be proactive about their health.
Sinai Hospital first began offering the drug when it came on the market in 2012. Dr. John Cmar, the hospital's director of the division of infectious diseases, treats patients who are HIV-positive and has found many of their sexual partners do not know about PrEP. He has made it part of his job to try to get the partners on the medication.
"I am taking all of these people on as my patients because they are at risk for getting the virus," Cmar said.
Raifman believes educating doctors at seminars, conference meetings and other professional development events about the use of PrEP could help expand its use. She believes it is not on the radar of many primary care physicians and that doctors who don't treat HIV regularly may not feel comfortable with prescribing the drug and managing follow-up care.
"They haven't prescribed HIV medication in the past and they often feel intimidated by it," Raifman said. "They don't necessarily know what the side effects are or the follow-up regiment."
People on PrEP must come for follow-up visits every three months to make sure they are following the drug regimen. Not taking the drug every day lowers its effectiveness.
In general, high-risk populations such as gay teens and transgender people are also hard for health workers to reach because such people often feel marginalized and are estranged from their families and communities.
"We really need to do all that we can to reach the people who need it the most," Raifman said.