Reaching out to prevent HIV in high-risk youth

• HIV infection is increasing sharply among young people
• They have no knowledge of the ravaging AIDS epidemic of previous decades
• Innovative programs are trying to reverse the trend

CHICAGO — To a pulsating beat, young men jump, gyrate and pirouette as they perform dance routines on a makeshift stage in the lobby of the Social Service Administration Building at the University of Chicago.

About 300 spectators clap their hands over their heads. An emcee leads them in a chant of "Safe Sex, Best Sex!" as a young man passes out condoms from a cardboard box.

But the main event at this Friday night dance-and-costume ball takes place beyond the main stage. At a series of private booths in the building's lower level, partygoers can opt to run a thin cotton swab across their gums. Within 20 minutes, they can learn whether they are infected with HIV.

The ball, sponsored by the University of Chicago Medical Center last month to commemorate World AIDS Day, is one of the more unconventional ways health care providers are trying to reach the group currently most at risk for contracting HIV and AIDS: gay men under age 25.

The rate of HIV increased 22% among gay males ages 13 to 24 from 2008 to 2010, according to the Centers for Disease Control and Prevention in Atlanta. Teens and young adults accounted for more than a quarter of the 47,500 new infections recorded in 2010, the latest year for which statistics are available.

One major reason: They have no knowledge of the AIDS death toll of the 1980s and '90s, and don't regard it as a dangerous disease.

In 2010, the White House Office of National AIDS Policy proposed a multi-pronged strategy to address the persistent spread of HIV, especially in that age group. The federal government spends approximately $20 billion annually on AIDS-related programs. The AIDS office recommended redirecting funding toward prevention education, more widespread testing, earlier treatment and swifter access to care.

The initiative spurred a number of cities across the USA, including New York, San Francisco, Chicago, Washington, Atlanta, Kansas City and St. Louis, to try new and creative approaches to reach young adults. They range from tapping into social media sites young gays use to arrange dates to advertising smartphone apps on public billboards for locating free condom distribution centers.

Chicago, in particular, has been in the vanguard. Three of its largest hospitals, 60 community organizations and a corps of physicians and social workers have teamed up to focus on HIV.

Chicago's programs also target those who are often hardest to reach and most at risk: transgender youths, inner-city African Americans and young Hispanic men. Health care workers and peer advocates — young people already infected with HIV — administer swab tests in street vans, at gay bars and bathhouses, in pharmacies, on college campuses and even at social events like dance balls, which are particularly popular with young African-American gays.

"If you approach a young person and say, 'Who wants to take an HIV test?' I can tell you the answer: no one," says Matt Richards, manager of community programs at the University of Chicago Medicine's Comer Children's Hospital, a sponsor of the World AIDS Month ball. "So we do something fun. We enter their world and try to help them feel comfortable with us."

WAYS TO CONNECT

Forms of outreach are wide and varied. The U of C medical center occasionally offers $25 gift cards as an incentive to get tested. This month, the hospital plans to open a drop-in center on campus where gay teens and young adults can socialize, have a hot meal, get advice and become acquainted informally with medical staff.

The Ann & Robert H. Lurie Children's Hospital of Chicago reaches out to young gays through a popular dating site called Grindr, which includes a "geosocial networking" phone application that allows users to see each other's locations.

"We can send a message saying, 'Hey, we're here, there's free testing going on today,' " says Anne Vulpas, Lurie's coordinator of HIV prevention. "The idea is to break through the stigma and taboo by making this an open thing. It's not a private, hush-hush experience anymore."

One community organization called Night Ministry sends out volunteers in a blue van to hand out sandwiches, bottles of water, soap and other toiletries to homeless teens. But on Tuesday and Thursday, the young people can step inside a Night Ministry van and get tested for HIV.

One drizzly Thursday night on a busy corner in the heart of Chicago's "Boys Town" neighborhood, the van pulls over to a curb amid the taxis pouring out passengers on their way to dinner or the theater. A 20-year-old transgender woman wearing dangling gold earrings steps into the van, telling a Night Ministry worker that she is in a serious relationship and her family wanted her tested. "It's my first love," she says.

The test results she receives are apparently good. She smiles broadly as she steps out of the van about a half-hour later, armed with pamphlets on HIV prevention. If someone tests HIV-positive, the Night Ministry refers them to a clinic where they can be placed immediately on medication.

Chicago is also a leader in an approach to treatment called "linkage to care." Vulpas says she saw the need for this kind of follow-through service, ensuring that those infected get quickly into treatment, when she worked years ago with Night Ministry. "I hated having to tell people, 'You're HIV-positive. Good luck, here's a phone number.' "

Linking people to care focuses on the individual, Vulpas says, and "the specific barriers and challenges he or she faces on a day-to-day basis. We work with these young adults to locate a clinic near their home. We offer them other services if they need them. So if they're homeless, we help them with housing."

These efforts appear to be working.

Due to more effective medication, better education and earlier detection, HIV no longer means a death sentence. A medication known as PrEP (pre-exposure prophylaxis) is often taken as a safeguard by people who are in a sexual relationship with someone who is infected.

The number of full-blown AIDS cases has decreased dramatically in recent years, according to the Centers for Disease Control and Prevention in Atlanta. Indeed, the overall number of people with HIV remains stable, at about 47,500 new cases each year.

HIV "is turning into chronic illness that can be managed, like heart disease or diabetes," Vulpas says.

However, the infection is increasingly striking younger people. "I'm seeing patients as young as 16," says physician John Schneider, a specialist in infectious diseases who was a dance judge at the University of Chicago's AIDS ball. Other health care providers says teens are getting infected as young as 13.

"In the 1980s, we were dealing with people on the margins of our society — gay men, intravenous drug users, sex workers," says Vulpas. "But now it's our children, and they need us. They need us to tell them it's going to be OK."

"These young people are right in the transition time of life," she adds. "And when they get the news that they're HIV-positive, it makes them feel that they can't do anything with their lives, though that impression is incorrect."

Physician Robert Garafalo, Lurie's chief of adolescent medicine, says the many advances that have occurred in treatment can give young adults a false sense of security. He also fears that budget battles in Washington and fiscal crises in many states will increase competition for funding HIV prevention and care programs.

"There is a crisis, no mistake about it," he says. "There is no magic bullet. What we need is a continued laser-like focus on this high-risk population, these young people who are most in need."

'A LONG, HEALTHY LIFE'

Amid the music and dancing at the World AIDS Day ball, a 24-year-old actor, nattily dressed in red slacks and black shirt, readily accepts the invitation to learn his HIV status.

"Even in the midst of having fun, it's important to still have a moment of seriousness and to check yourself out," says the young man, who asked that his name not be used so as not to disclose his medical condition. He adds: "I love myself, I love my life and I want to live a long, healthy life."

More than half of those testing positive for HIV didn't suspect they were infected, according to the CDC. That makes it more likely they passed on the infection to others without knowing it.

"When I received the test results, I felt like the walls disappeared around me," said a 22-year old from Chicago's West Side, who asked not to be named for the same reason. "I didn't cry, but for some reason, I felt embarrassed. I didn't fear dying so much as being lonely. I asked, 'Who is going to love me?' "

But there is good news, too, for those infected. This young man was able to get tested as soon as he began experiencing chronic fever, sore throat and swollen glands, symptoms often associated with the onset of AIDS. He knew about Lurie Children's Hospital because he previously had participated in a study it conducted on young gays.

The hospital quickly put him in touch with Vulpas, who he says told him, "You are going to be all right. I'm here for you."

After his HIV-positive status was confirmed, Vulpas accompanied him on his first three medical visits. He was placed immediately on Stribild, a one-a-day pill that combines four medications and has few side effects. He now has a full-time case manager who helps him remember to take his medication and shows up for his follow-up appointments.

His viral load has decreased to "undetectable" levels, according to his doctors. He gets retested every three months and says he is otherwise healthy. He plans to quit his current job as a restaurant host to enroll in hairdresser school. And he has hope.

"I feel like being HIV-positive is a little blessing from God," he says. "Now I respect and love myself more than ever before. It's definitely a wake-up call to know I am worth so much more in this life."

A SCOURGE OF YOUTH

Why is HIV hitting the under-25 age group so hard? The reasons are many.

"This generation does not think of HIV as a deadly or severe condition," says David Ernesto Munar, president of the AIDS Foundation of Chicago. "They did not experience the high death rates, the fear and the severe stigma that people did in the '80s and '90s. They think of HIV as a chronic disease that is controlled by medicine and will not affect them for 20 or 30 years."

Many young gays engage in "serial monogamy," says Vulpas. They date one person exclusively for a while, then move on to another.

"These young people aren't always using condoms because they consider themselves in a romantic relationship. It's a case of, 'I trust you. You're my partner,' " she says. That raises the odds they'll eventually have an encounter with someone who is already infected.

Adolescents are of particular concern. Health care officials say that despite an excess of sexual content in movies, cable TV and popular music, many adolescents remain woefully ignorant about HIV, AIDS and other sexually transmitted diseases.

Sex education in the public schools, they say, often focuses on abstinence and pregnancy prevention. Some classes discuss sexually transmitted diseases. But "God help the teacher who starts talking about gay sex in the public schools," says physician Robert Garofalo, chief of adolescent medicine at Lurie.

Another factor is the "hook-up culture" of recreational sex, often between two people who don't know each other well. It has long existed on college campuses and in high schools but is becoming increasingly common with even middle-school-age children, according to educators and sociologists who study sexual activity among the young.

"We are really failing these kids. Infections are starting at the young age of 12, 13 and 14," Munar says. "We need to reach them before they are 12."