A Generation of Young Baltimoreans Comes of Age With HIV
It's afterhours at a West Baltimore child-care center, and the last youngster has been picked up. For a few moments, the room is quiet as an aproned caretaker puts toys on their shelves and pushes tiny chairs under tables.
In a whirlwind of noise and motion, four twentysomethings arrive, with five children in tow. The only man among the quartet coos over an infant car seat that cradles a 3-week-old baby girl. Her mother sets the seat down in the center of the table with a sigh and slings a hospital-issued plastic diaper bag onto the floor next to her chair. She scoops the baby up and lifts her to her shoulder.
The child-care worker whisks the other children--each younger than 6--outside to the playground. The heat has broken a bit, so it's perfect weather for a romp on the play equipment that monopolizes a ball court in the shade of the building. The rush of traffic on a busy street nearby is barely noticeable. The center is an oasis in West Baltimore.
It is also a safe place for the four young adults who sit in little chairs around the preschool table. All HIV , they've been coming to the child-care center nearly every Friday night for at least four years. They call themselves "Young and Unique," and their group is sponsored by Light Health and Wellness Comprehensive Services, a local nonprofit organization that helps families affected by HIV and other chronic diseases. Their rowdy teasing and loud laughter makes it clear that they get something out of the meetings--support from being with other HIV young people, information about the virus that has changed their lives, and a secure place to talk about hooking up, having sex, and having babies.
Ashley Rock, a youth services coordinator for Light Health and Wellness and Young and Unique's founder, arrives. The foursome gets down to business. These young adults are also speakers who present information and tell their stories to audiences around the country. They start practicing a round-robin presentation that will be given at the After School Institute Youth Summit in downtown Baltimore the following week.
First up is Anthony (like the other HIV subjects in this article, he is identified by a pseudonym), who stumbles over his words and giggles at his mistakes. His hair is cropped short, and he's wearing jeans and a plaid shirt. Gold-framed aviator sunglasses perch atop his head.
"How would you feel if your mother kicked you out at the age of 14, not wanting to deal with you or your disease?" he asks. "What would you do?"
He passes an imaginary baton to Brianna, a young woman with copper-colored ringlets. Her breasts look like they're about to spill out of a strappy black tank top. Her slight lisp hints at her pierced tongue--a silver bar glitters when she opens her mouth wide to laugh. Her smile is enormous, but she's not grinning when she rushes through her first lines.
"What would you do if your mother died and you didn't have the answers to why? How would you feel?"
The play bounces to her right, where the next young woman picks up. Tia is pregnant, with straight, glossy black hair and very dark skin. A dimple dots her chin. More serious than the others, she quietly and soberly recites her part.
"How would you feel if your family called you a walking disease? How would you feel?"
Corinne, the infant's mother, is next. Easily distracted, she has trouble staying on task. Giant crystal earrings shine at the sides of her face, which is framed by black, wavy hair. She pats her little girl's back with a flat hand. After several stops and starts--and good-natured jeers from around the table--she gets her lines right.
"How would you feel if the first person you had sex with gave you HIV? What would you do?"
The round robin continues, and with each person, the process disintegrates. They lose track of whose turn it is, they forget their lines, they get caught up in details. A pizza delivery arrives. Cell phones ring. The verbal volley between the four continues, concluding in unison.
"What would you do if you had to take 13 pills a day to stay alive? How would you feel?" "How would you feel if you spent most of your childhood in the hospital? What would you do?" "What would you do if you were raped and got HIV? How would you feel?" "How would you feel if your mother told the entire neighborhood that you had HIV? How would you feel?"
"Sad. Angry. Tired. Confused. Suicidal. This is how we feel. How do you feel?"
The rehearsal ends on a grim note, but the mood is not so grave. They're having a great time--reconnecting, teasing each other, goofing off. Although the script comes directly from their own experiences, they're as carefree and energetic as anyone else just entering adulthood.
And they're not alone in Baltimore City. Since the advent of drugs that suppress, though not eliminate, the HIV virus, testing positive has become a life-altering event, though not a life-ending one, for a rising generation of adolescent and young-adult Baltimoreans. As the health-care professionals who see these young people work to find ways to keep them and their peers healthy, these four, and hundreds of others like them, try to begin their adult lives.
HIV still largely affects an older generation. According to the most recent epidemiological reports from the Maryland AIDS Administration, the largest population of the nearly 16,000 HIV-infected people in Baltimore are in their 40s, and African-American people make up 88.5 percent of all HIV and AIDS cases in the city.
But the epidemic is changing. Since its genesis, the number of newly diagnosed men has fallen from around 90 percent to 63 percent of all new HIV infections. That means that the number of women each year who are diagnosed with HIV is on the rise, up to 37 percent in 2006. In addition, the rate of HIV transmission by heterosexual sex has been increasing for more than a decade.
In 2006, 38 13-19 year olds and 164 20-29 year olds in Baltimore City became infected with HIV. In that same year, 151 teenagers and 1,056 adults in their 20s were living with HIV or AIDS. About half of these teens are female, and 447 of the young adults are women.
While the numbers of adolescents and young adults with HIV are still relatively low, they do represent a difficult group to identify and treat. In a perfect storm of independence and invulnerability, these young people often go untested or without medical care. That's why the state has developed a coordinated effort to serve this group, working with the University of Maryland School of Medicine, Johns Hopkins Department of Pediatrics, Health Education Resource Organization (HERO), Sinai Hospital, and Light Health and Wellness. "The goal is to fund a comprehensive network of services," says Heather Hauck, director of the Maryland AIDS Administration.
"Young African-American women are the fastest-growing group who are being infected with HIV," Ashley Rock of Light Health and Wellness says. "There's a much greater impact on women with heterosexual contact than on men." That is, it's easier for women to contract HIV from sex with a man than it is for men to become infected from sex with a woman.
"In adolescents, HIV is primarily a sexually transmitted infection," says Dr. Ligia Peralta, director of the Adolescent HIV Program at the UM School of Medicine. Over the last 18 years, she has followed more than 600 HIV teens and young adults in Baltimore. Her program was one of the first in the country to focus on ages 12 to 24. "Baltimore has basically been the leading spot in the country" for research on HIV adolescents and young adults, Peralta says.
"One major contrast to the general epidemic in Baltimore is that there's much less IV drug use among teens and young adults" than among HIV adults in the city, says Colin Flynn, chief of the Center for Surveillance and Epidemiology at the Maryland AIDS Administration. (By law, all diagnosed HIV cases must be reported to the administration, and these cases are followed by the state.)
And then there are the adolescents who were infected perinatally, by their mothers, in the last few months of pregnancy, during birth, or just after birth. "They're not a huge part of the epidemic, but they're a significant part," says Vicki Tepper, a pediatric psychologist and director of the Pediatric AIDS Program at the UM School of Medicine. Her program works almost exclusively with this population. Unlike their peers who were infected as teens or young adults, perinatally infected individuals have never known life without HIV. And when they were born in the early '90s, there were virtually no treatments.
No matter how they were infected, young HIV women are balancing some heavy loads. Many are navigating the very difficult years between 12 and 25 with the extra burden of doctors' appointments, questions about disclosure, and the stigma of the disease. But HIV is not the be-all, end-all.
"Being positive is not the biggest thing in their lives," says Kalima Young, director of the University of Maryland's Connect to Protect Baltimore, a community-based research project for HIV and at-risk youth. These young women want to go on dates, hang out with friends, have boyfriends, and have babies.
"It's important to keep these other factors in mind," Hauk says. "It's not just about HIV. It's about other things in their lives."
"The challenge is developing identity, developing autonomy, and making plans for the future," Tepper says. Just like anyone else entering adulthood.
July 22, 1998: Gizmo will never forget that day. She had had a rough few years. Her family moved to Park Heights when she was in middle school. She joined a gang and started partying. This was a huge change for the A student, who was a member of the safety team and captain of the cheerleading squad at her previous school.
"I wanted to experience bad stuff, because I had never experienced it," she says. In the ninth grade, she started dating a guy who was seven years older than she was. He found out that he had gonorrhea and contacted her. They decided to get tested for HIV.
"We went to go get tested together," she says. "We actually went back to get the results together. His was negative. Of course, I thought I was fine, too. But my result wasn't negative."
Her first thought was to call her mother. She was shaking so hard that the counselor wouldn't let her: "My partner just held me and told me he wasn't going nowhere."
They went home to talk to her mother. "I had to sit down and tell my mom what was going on," she says--not only that she had become sexually active at 13 years old, but that she was HIV . Her mother prayed with her.
Gizmo, now 24, had been infected the year before by Stuart, a man who was eight years her senior. He showered her with gifts, she says, and she fell for him. Soon after having sex with him, she lost a lot of weight and felt like she had the flu. She had a seizure, and her mother took her to a local hospital, but she wasn't tested for HIV. Because of her age, the medical staff assumed that she wasn't sexually active.
She now believes that her symptoms were early signs of HIV infection. And since she was having sex with Stuart at the time, she knew he had infected her.
Gizmo went back to school in the fall, enrolling in Junior ROTC and becoming an athlete. By graduation, she had competed in state championships twice for the long jump and 400-meter relay. She also pitched in the state championship softball game when she was a sophomore.
But sports weren't her only extracurricular activity. Gizmo was leading a double life. She was still a gang member and partying pretty hard. In the 11th grade, she says, she missed 75 straight days of school. She ended up in summer school that year, and then again after her senior year.
Like many kids, Gizmo felt lost. Her mother had to work several jobs to support them, so she didn't have time to attend Gizmo's games or meets. Teens with a weak support systems or who are involved in dangerous activities are also more likely to have high-risk sex. Plus, there's the age difference of her sex partners to consider.
Peralta's research in Baltimore revealed a startling result: The men who have infected the young women are an average of 10 to 15 years older than their partners. These men have a long sexual history and may have been incarcerated, both of which may mean a high risk of HIV infection.
And because many don't practice safe sex, older men are more likely to be infected with a resistant strain of HIV. "What we are finding out is that as many as 18 percent of [HIV adolescents and young adults] are infected with a virus that is already resistant" to current medications, Peralta says. This means that it is harder for health-care providers to find an effective drug regimen for these patients.
"They're attracted to men who are in their 30s," says Debbie Rock, Ashley's mother, and the executive director and founder of Light Health and Wellness. "And this is not always helping the equation. These girls get all googly-eyed and starry-eyed. They're just looking for love."
What they find instead is that they're doing things they're not ready for--and some become HIV .
Corinne had no doubt that her test result would be negative. After all, at 16, she had only had sex with her boyfriend, who was a year older. But she followed the guidance from health class and went to the clinic at her high school run by the Baltimore City Department of Health, where they drew blood. Weeks later, she got the shocking results: She was HIV .
"I was sad and hurt and very upset," Corinne recalls. "The first guy I had sex with gave it to me." She kept the news to herself, she says, staying in her room for about three months. Her mother was worried about her, but she didn't tell anyone until five months later. "She was sad--she was hurt," Corinne says about her mother when she broke the news. It was a very lonely time. She dropped out of school and got pregnant.
Corinne was no different from many of the girls her age. Being HIV didn't lower her libido. And she still doesn't insist on safe sex. That may seem shocking, but to her it is no big deal. She and the other young adults at the Friday night support meeting talk a good talk when they're together, but when they get out in the real world, they often make very different decisions.
Her advice is simple: "Use protection all the time." Yet, she acknowledges that she doesn't always follow that rule herself. "I need to start practicing safe sex," she says during the Friday night meeting.
Tia has a similar experience. "I tell my partners upfront, from the day I meet them," she says in an interview. "Then we talk about the condom issue. Most of the time, we start out protecting ourselves, but over time we start saying, `Oh well, whatever.'"
Most of the young women in Rock's program have children. "They don't stop having sex, and they don't always have protected sex, and they don't always disclose," she says matter-of-factly. She encourages everyone to tell their partners that they're HIV , but life isn't that simple. When some women are vulnerable and without resources, they take chances. And so do their partners. Corinne's partner of several years knows full well that she's HIV but would prefer not to use a condom.
"A lot of our young women are in marginalized situations," says Dr. Renata Arrington-Sanders, an attending physician at the Harriet Lane Clinic at the Hopkins Children's Center, where Corinne receives medical care. Many of these teens grow up poor, sometimes in downright dangerous neighborhoods. "For a lot of women in general, they may not have the locus of control. Power dynamics is a very key component in feeling that you're able to use a condom."
Peralta sees similar situations. "They're so vulnerable because of all the things that have happened in their lives," she says. "They tend to be traumatized."
Janine Best-Ross, a social worker at the University of Maryland adolescent program says that she's only met one parent of a client. "I ask [my clients] to identify their support system--there is none," she says. About 60 percent of the adolescents and young adults in Peralta's program drop out of high school.
And that's not all. "Sexual abuse is a big issue," Peralta says. "It has been kind of hard to study." She estimates that more than 70 percent of her patients have been sexually abused.
Rock reports a smaller but still substantial incidence of abuse among the members of her program. "Most of them have experienced sexual or physical abuse," she says. "They have a lot of family issues." And even if they didn't contract HIV from abuse, the abuse itself affects their self-esteem and confidence. That, in turn, affects their ability to say no or demand that their partners use a condom. For victims of sexual abuse, a lack of control may become a central part of sex and intimacy.
These problems also prevent young women from getting tested and receiving good medical care. "The challenge we have is that people aren't getting tested on a regular basis," Arrington-Sanders says. Recent research suggests that about 25 percent of people who have HIV aren't aware of it, she continues. "If we can get people tested, we can get them into care, and there's good evidence that when they are tested, they change their behavior." Still, many women like Corinne and Tia fall between the cracks.
At 21 years old, Corinne has only recently told all of her friends, who she says were supportive. "I'm their friend, and we grew up together," she says. "I can't say why they didn't judge me."
Corinne's viral load is low and her T-cell count is still high, so she doesn't need medications--as long as she's not pregnant. None of her three children have HIV. That's thanks to a regimen of medications that keeps a baby of an HIV mother healthy during pregnancy. She hasn't breast-fed any of her children, since breast milk is a body fluid that can easily transmit the virus.
Peralta says that most young women adhere to medical treatment when they're pregnant. The medications are expensive, but most minors in the region can be enrolled in a managed-care program. "That baby becomes No. 1 in their lives," Peralta says. "The problem is when they finish the pregnancy the rate of adherence falls."
For now, Corinne doesn't have to worry about following a drug regimen. Still, it's not as if she can forget that she is HIV . Her viral load can go up at any time, and then she'd become prone to opportunistic infections that could be deadly. "I have to be more cautious than other people," she says. "My life is different than before I was positive. I think about it every day."
"Who can tell me what we talked about last week?" Angela Jackson asks. After practicing their presentation, Corinne, Tia, Brianna, and Anthony have moved to another classroom at the child-care center. It's the second week of "Phenomenal Women," a five-week HIV-education program that zeros in on "ethnic and gender pride." Jackson is leading the discussion, and Anthony is sitting in.
"Something about chicken," Corinne says, biting into a piece of pizza.
"No, cheeking," Jackson corrects. She reminds them that "cheeking" is putting a condom on their partner's penis without his knowing it. "Unwrap the condom and put it inside your cheek," she says. "Then you can put it on with your mouth."
"That doesn't sound sanitary," Corinne says, wrinkling up her nose.
"You're going to put your mouth down there anyway!" Tia scolds.
Explicit doesn't begin describe the conversations these women need to have. When their partners are not willing to wear condoms, they have to pull out all the stops to stay safe. Even Anthony gets into the discussion, launching into an explanation of how some gay men put a female condom on a dildo, insert the dildo into their anus, and then remove the dildo--leaving the female condom. That way there are no worries if hook-ups refuse to have protected sex. He doesn't say if he's done that himself, though.
Candid discussions about sex are necessary if attempts to promote safe sex are going to stick. "Behavior is a fluid process," Arrington-Sanders says. "It's like any other behavior that you're trying to change. It takes time."
And sometimes when young people are coping with grown-up problems, adults set the bar too high, even with an infectious, life-threatening illness. "Adults expect teens to be able to see the bigger picture," Young says. "And I think that's why a lot of programs fail."
Telling people about their HIV status--whether they're family members or doctors or sex partners--is another daunting process.
"It is very difficult for a young person to disclose their HIV status," Peralta says. "It may take up to a year or more." This is a concern both socially and medically. If adolescents don't disclose their status to their caregivers, they may not get medical treatment. And if they're not telling their sex partners that they're positive, they could be spreading the virus.
People in this age range have big concerns about disclosure, however. "This is not like having cancer," Peralta says. "This is really an infection that the reaction is stigma and rejection."
Even the clinics themselves take this into consideration. Confidentiality is, of course, the name of the game. One attraction of the Harriet Lane Clinic and University of Maryland's Penn Street Clinic is that they are not exclusively for HIV clients. When patients go there, no one knows why they've come.
"At that point in your life, you don't necessarily want to take on a label," Young says.
But getting them into treatment early is critical. "The focus of the treatment of adolescents is working on preparation--preparing them to take medications," Young says. If they're identified early, they most likely won't need medication. But their wild sense of independence and a lack of support at home and in their neighborhoods is bad news.
"When you have that combination, you have almost a model for disaster, but they need a lot of support," Peralta says. That's why her program includes Prevention for Positives, a group that offers education and support for HIV teens and young adults. The hope is that they'll adhere to medical treatment if it becomes necessary and that they'll think twice before getting into risky situations, like unprotected sex and drug abuse.
In other words, Peralta and her team--along with other programs in the city--are trying to provide emotional and practical support for these lost teens and young adults, filling in where parents, older siblings and other adults have failed them.
When Free was 3-and-a-half, she had a run-in with a bike and went to the emergency room for stitches. Now 20, she says she still remembers overhearing the nurse and doctor making rude comments about her. That was how she found out she was HIV .
Her mother didn't know until after Free was born, after her daughter had an unusual reaction to her immunizations that prompted an HIV test. Free had been infected perinatally by her mother, who had gotten the virus from Free's father. Today, Free is taking medications but healthy.
"It was a typical childhood," she says. "It wasn't too crazy." Free is used to talking to people about her status. Her mother speaks openly about HIV and AIDS and taught Free to do the same. She's comfortable disclosing when the situation is right, and she always asks if the other person has questions. Mostly they want to know how she got HIV, and if she's OK.
Not all perinatally infected young women are like Free, though. "They are more angry," Ashley Rock says of the majority of the teens and young adults in her program who were infected this way. And in many ways, they have reason to be. About half of them lost one or both parents to the disease, and many of them grew up in foster care. Free's father died of AIDS when she was almost 10 years old.
"That makes it real, that motivates me," she says. "Before he died, he told me that he didn't want me to go down the road he took." She has taken good care of herself, staying on her medications and avoiding risky behaviors. She's also had the positive support of her mother, friends, and faith. "If I have those bad moments, I read my Bible," Free says.
"These young people were born with HIV, so they don't have a before," Tepper notes, and many were diagnosed in the early '90s: "Back then, we didn't expect them to live. There was no reason to think they would." The medications available hadn't been approved for children, and treatment for pregnant women did not exist.
Except for a few periods, Free has been on medications her entire life. Even though she is healthy, she doesn't expect to be without them. Still, she has a normal life. She will graduate with a degree in biology from Mount St. Mary's University next spring, with plans to become a nurse practitioner. She wants to get married and have children of her own. "One of my main goals is to be happy and healthy," she says.
"It's been only 25 years" since AIDS was discovered, Tepper says. "It's still discouraging that we can't cure it or have a vaccine, but it's been an incredible march. There's nothing about this that is easy, but right now it's very hopeful."
No one knows how a lifetime of these medications will affect people who were infected perinatally. Just like any other medications, there are side effects associated with HIV treatments. Depending on the drug, patients may be at risk for pancreatitis, hepatitis, diabetes, loss of bone density, and heart disease. Because current treatments have only been around for about a decade, there has been no time to complete long-term studies. There are big unanswered questions for HIV adolescents and young adults.
"What people don't know is that we still have an epidemic of new HIV infections" in Baltimore, Arrington-Sanders says. Obviously there's room for more research--study that will help protect youths from getting infected and keep them healthy when they are positive.
Peralta's team is looking at how teens and young adults prefer to be tested for the virus: with a rapid test that provides nearly immediate results or with the traditional test that requires a two-week wait. Medical professionals were concerned that if teens got a positive result from rapid-results testing, they might decompensate, even commit suicide, she says. Peralta's study showed that teens actually prefer the rapid test: They may change their behavior more quickl or get into treatment sooner.
Peralta has also discovered that adolescents with HIV have an exceptional immune reaction to the virus. As people age, the thymus--an organ located in the chest that contributes to the effectiveness of the immune system--shrinks and becomes less active. Remarkably, the thymus of HIV young people stays the same size and remains active, despite their status. This gives them an additional weapon in their immune arsenal and helps protects them from opportunistic infections that are deadly to HIV patients. "An adolescent with HIV has a unique protection," Peralta says.
Many teens and young adults also have a false sense of protection because of a feeling of invulnerability that comes with their age. Plus, good treatment has created a backlash against prevention.
"Unfortunately, we do hear that youth believe they're going to get HIV anyway," says Charlene Brown, assistant commissioner of clinical services at the city Health Department. "We really, really wish to work to change that perception, because HIV is a preventable disease. There's a lot of concern about the perception that because HIV is treatable, there's no reason to prevent the disease."
Tia talks about this with other young people whenever she can: "I like to tell them, they have to really respect themselves. I want to let a lot of people know that [HIV] is not something that they have to get. And a lot of people think it's just something they're going to get."
Young adults and adolescents naturally cling to magical thinking. It's that stage of their lives when anything can happen, good or bad, but they don't expect the worst to happen to them. "I think the only way to tackle that epidemic is to get people tested and arm people with the skills they need to prevent not only HIV but STDs in general," Arrington-Sanders says.
Gizmo is proud to be part of the larger solution. Not only is she a patient of Dr. Peralta's program but she's also on staff as a youth advocate. Two years ago she had a son, and motherhood changed everything for her. She's making life work as a single parent--perhaps because she is able to follow her passion for working with HIV youth and young adults. She doesn't feel the need to disclose her status to everyone she meets, but she can't pretend that she's not HIV either. She's found the necessarily balance that allows her to get through daily life.
"[HIV] status has been put on a back burner," she says. "I'm more focused on getting my son in private school." Her immune system is functioning better now, too. She's been off meds since January. "My body has been fighting on its own."
Gizmo offers something unique to HIV young people she sees as part of her job that others can't: She's been there. "One thing we all have in common is that we are HIV ," she says, adding. "I'm finally on the right track." H
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