As the rate of HIV cases among young people rises in Maryland, public health officials are scrambling for new ways to address the problem — or risk undermining years of success.
Among those newly diagnosed with HIV statewide, the proportion of those ages 20 to 29 nearly doubled — from 16 percent in 2003 to 31 percent in 2012, the most recent data available. The proportion of infected teens increased at about the same pace.
The situation in Maryland reflects what is happening around the country, and if the trend is not reversed, it could yield tragic consequences, health officials say. For one thing, the spread will continue. And experts believe many young people don't even know they are infected, delaying treatment that works best in the disease's early stages.
The reasons behind the jump in the spread of the disease are complex, and include factors such as the social pressures young people face and the information, or lack of information, they receive about HIV. Meanwhile, as treatments have advanced in recent years, the fear that the virus and disease once engendered have dissipated.
"We have a situation where we are somewhat victims of our own success with the epidemic," said Dr. Patrick Ryscavage, medical director of the JACQUES Initiative, a program of the Institute of Human Virology at the University of Maryland School of Medicine that focuses on HIV outreach. "HIV has gone from what was seen as a terminal illness to a chronic disease. We tell patients we expect them to live full healthy lives if they come in and seek treatment. It is the yin and yang of the success of HIV treatment."
The greatest increases in infection rates are among black gay men, who may also struggle with low self-esteem, lack of family support, poverty and a health system in which they don't feel comfortable getting care.
Alex, a 25-year-old from Baltimore, is among the young adults driving the trend.
At age 18, he stopped using condoms, his judgment clouded by love and trust in his boyfriend. "I kind of had that feeling of invincibility that it wouldn't happen to me," said Alex, who would not allow his full name to be published because most people don't know about his illness. "I never paid too much attention to HIV, even though I knew what it was."
The virus changed his life forever. While HIV is no longer a death sentence, it is a life sentence — and the daily dose of drugs needed to keep Alex healthy constantly reminds him of the cost of his naivete.
In the 1980s and '90s, an extensive public health campaign helped to curb the AIDS rate. But now those efforts are losing ground among young people like Alex, public health officials said.
Although new HIV diagnoses in Baltimore decreased by 27 percent from 2010 to 2012, there was an increase in the number of cases involving teens.
Anne Arundel County health officials are seeing an increase in cases among young adults, though not among teens. Of the new cases reported in 2012, 20- to 29-year-olds made up almost 38 percent, up from less than 30 percent in 2010.
Officials said the increases were largely among gay men and heterosexual women.
The county is implementing a program in churches and other institutions to help educate youths about HIV. The county Health Department has partnered with Fresh Start Church in Glen Burnie to promote testing during World AIDS Day, and county schools have added programs about HIV and other sexually transmitted diseases to the health curriculum.
In Baltimore County, officials recommend everyone age 13 to 64 be tested. The Health Department offers regular testing and hosts special events, including one on National HIV Testing Day.
HopeSprings, a nonprofit, works with churches in Baltimore and Baltimore County on training to serve people with HIV/AIDS. The group has seen the grim statistics about young people, and realizes they need to be reached. Simply educating them about AIDS isn't enough, said executive director Erin Donovan; it is important to address social issues and basic life needs as well.
"Young people are really lacking solid relationships," she said. "Everything is screen-based."
Experts say risk-taking comes naturally to young people because the prefrontal lobes of their brains aren't fully developed. So they may know intellectually that they should use a condom but choose not to.
"Adolescents can perceive risk but can't always appropriate that risk. They often have an inability to incorporate it into behavior," said Dr. Renata Arrington-Sanders, an assistant professor in the division of general pediatrics and adolescent medicine at the Johns Hopkins School of Medicine. She has researched the spread of HIV in young people.
In-your-face messages about the dire consequences of HIV, which once made young people focus on the risk, are less prevalent than when the epidemic was new.
Back then, a barrage of posters, commercials and public service campaigns once pushed condom use and abstinence, while warning that HIV/AIDS could kill. Victims like Ryan White, who contracted HIV from a blood transfusion at age 13 and died six years later, were reminders of the tragic impact of the disease.
Today, medicines have rendered the disease a chronic condition, and high-profile patients such as basketball star Magic Johnson now live years with it. Overall, the disease has become less visible — students don't hear about it as much in school, and prevention campaigns are less prevalent.
Other factors are at work, too, experts say. Youths in Baltimore's most impoverished neighborhoods are more worried about where their next meal is coming from, or whether they could be shot on the way to school. Young gay men, ostracized by their families, may turn to the sex trade to support themselves or move in with older men whom they feel obligated to please.
"Most of our young people don't expect to make it past 21 or 23, so they are trying to enjoy life as much as they can," said Jamal Hailey, director of programs at STAR TRACK, a program through the University of Maryland School of Medicine that helps connect young people who have HIV to services. "They think they will die from something other than HIV."
In recent years, outreach workers throughout the state have beefed up their efforts and developed atypical ways to reach kids.
Workers with the Baltimore Health Department go into the community to test people at soup kitchens and festivals, or at clubs when they close on Friday and Saturday nights. The department also hosts events where groups compete in dance and performances for cash and trophies. They can also get an HIV test.
On a recent Friday, outreach workers with the city's HIV mobile testing van were reminded once again how hard it is to reach young people. The van parked across from the Old Town Mall in East Baltimore, where kids hang out along the brick courtyard.
"Hey, let me talk to you for a minute," Nathan Fields, community health coordinator with the Bureau of STD/HIV Prevention called out to teens walking down the street, riding bikes or hopping off the bus.
Time and time again the kids offered excuses for not getting a test: They already had been tested. They didn't have time. They were not involved in risky behaviors.
Fields handed out condoms, so at least they would be encouraged to use protection.
Some, like Dondre Grey, 19, were willing to get tested. He said he uses condoms but worries about contracting HIV, so he gets tested as a precaution.
Despite these outreach efforts, some think more can be done, such as making AIDS testing as common as other routine tests.
"We try to do outreach to people who are at risk, but what I think is a major problem is that we haven't integrated HIV into routine medical care," said Jeffrey Hitt, director for the Infectious Disease Prevention and Care Services Bureau at the Maryland Department of Health and Mental Hygiene.
Alex discovered he had AIDS when he accompanied a friend who was being tested. He was stunned when a counselor pulled him into a room to show him a test stick with two lines, indicating he was HIV-positive.
He now counsels young people with HIV. There are days he wishes he didn't have to worry about living with the disease, but he reminds himself that he can help others avoid a similar fate.
During peer group sessions he tells those who have the disease not to let it define them.
He said, "I tell them, 'We have HIV, but we are so much more than HIV.'"