BY LISA SEDELNIK
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BY LISA SEDELNIK |
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"The problem is that these teens don't feel that they are at risk. This is because they are often healthy, they feel good, and they don't have that capacity to appreciate the consequences of their present actions," says Friedman.
Meanwhile, although many public schools throughout the country now teach AIDS education, such educational efforts don't seem to be working as effectively as once hoped. According to Friedman, in the last youth risk behavior surveillance conducted in 1995 by the Centers for Disease Control (CDC), about 92 percent of Miami-Dade County high school students reported having received HIV/AIDS education in school and another estimated 75 percent of school-age teenagers reported having gotten AIDS information from their parents. Yet, only 54 percent reported using condoms with their last sexual intercourse. "You would hope that the education has come to the point where everyone knows that if you have unsafe sex, you have the potential of getting HIV, but it doesn't seem to be getting through," says Christeen Orfield, a nurse practitioner with the Adolescent Medicine division. "Something has failed, we have failed." Orfield suggests bombarding children with HIV/AIDS education during grade school instead of waiting until the middle or high school level when many teens are already sexually active.
The CDC helped researchers and doctors at UM/JMH identify infected mothers in the late 1980s by conducting a seroprevalence study-where blood samples are not identified. HIV testing was performed on every consecutive birth, revealing a 2.5 percent rate of infected mothers. Once the study was completed, the center continued to offer HIV testing so that infected women and their babies could be identified at birth and both mother and child could obtain early treatment. The findings from those tests were shocking. In 1990, within a six-month period, the obstetrics department identified 25 girls under 21 with HIV. These were teenage girls who had come to Jackson seeking obstetrics care. Their only risk factor for contracting the virus was sexual activity that allowed pregnancy. "They had nothing else to suggest that they might have HIV infection-they weren't prostitutes or drug users," says Friedman. "These were just regular girls from the community, the majority being African-American or from the English or Creole-speaking Caribbean countries."
Surprisingly, noncompliance has not been a problem. The teens who have been introduced to the Adolescent AIDS Clinic have been remarkably receptive to the care offered there. Services include support groups, mental health referrals for depressed teens or for those who need help in coping with their diagnosis, assistance with paying for medications through Medicaid, and instruction on taking medications. Case managers and nurse practitioners are available to answer questions about coping with the disease, dating, and disclosure of the disease to family and friends. They also help patients keep up with their aggressive drug therapies. "At that age, how many people remember to take medications and be so vigilant about it?" asks Carlene Brathwaite, a case manager with the Adolescent HIV/AIDS Program. "Some teens do, but it's not very realistic to think that they're going to always remember to take their medications-especially when they are out with friends."
More importantly, when a teen fails to keep an appointment or stops visiting the clinic for several months, they are not welcomed back with reprimands or yelling, but with genuine concern. "It might be the first time that anybody has said, 'We've been really worried about you,'" says Friedman, "and that sheer interest from doctors, nurses, social workers, and case managers is an inducement for good compliance." Program retention has been so good, that some of the older patients in the clinic-those in the 21-, 22-, even 24-year-old age range-haven't yet "graduated" from the program. Many of these patients, says Friedman, have candidly told the staff that they prefer to stay in the Adolescent Aids Clinic than move to the adult AIDS clinic, known as the Adult Special Immunology Clinic, a place they feel they don't belong. Twenty-two-year-old Coleman Bell, for example, who was diagnosed with HIV when he was 18, still frequents the adolescent clinic. "When I've asked the clinic staff if there is a cut-off point, they tell me 'We're not throwing anybody out. You started here, you're comfortable here, and this is where we think you belong.'"
"We tested for all STDs, because most STDs are usually found in people who are HIV positive," says Alejandro Rodriguez, patient clinical assistant in adolescent medicine and a peer case manager. "It's usually one of the first warning signs."
The University is also one of the original members of a multi-site, NIH study known as Reaching for Excellence in Adolescent Care and Health (REACH), one of the first national studies to examine HIV-infected teenagers in ten major U.S. cities, including Miami. Miami's involvement in the study was crucial, Friedman says, since it is estimated to have the third largest concentration of AIDS cases in the United States, after New York and parts of New Jersey. Although the results of this study are still in the preliminary stages, some of the early findings reveal some interesting facts. One, HIV infection in teenagers seems to resemble how the infection progresses in adults. According to Friedman, this is because most adults and teenagers acquire the virus the same way-through sexual relations. Yet, teenagers tend to physically handle the HIV infection better than their adult counterparts. Reasons may be that teenagers are generally healthier than adults since they have had less exposure to environmental toxins. Also, teenagers do not have to deal with age-related diseases such as cardiovascular disease or hypertension. The study also indicates that teenage women may acquire HIV infection easier than adult women do. The still-growing, immature cells that make up the teenage female cervix and upper vagina, which are undergoing a natural change during puberty, are more susceptible to the virus. As these cells mature into adult-like cells, they become better barriers for infections. The preliminary results also indicate that HIV is geographically
targeted. In other words, someone is more likely to get exposed
to HIV if there is HIV in their community. "This isn't a death sentence," says Bell. "I look at this as one of the most challenging gifts I've ever received because having HIV has taught me how to live my life as a human being and not as someone who is in it for the moment. Don't let this be an end, let it be an expression of beginning." |
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The Changing Face of AIDS
"The face of AIDS has changed," says Gwendolyn Scott, director of the pediatric immunology and infectious diseases division in the Department of Pediatrics. "Whereas in the past our patients were mostly very young infants and children, now you see adolescents who have survived having perinatal AIDS into their teenage years. Our oldest teenager is 19 years old, having been infected at birth."
Since its inception in 1983, the Pediatric HIV/AIDS Clinic has cared for over 1,000 infected children. Part of the reason for this high figure is due to the fact that Florida has the second highest incidence of HIV-infected children in the nation, the majority of whom live in South Florida, Scott explains. Meanwhile, although these statistics are staggering, much has been learned from studying these perinatally infected infants. Children who are infected at birth, for instance, have the potential for much more rapid disease progression than an infected adult does, says Scott. This, she says, may be related to the amount of virus that is transmitted to the baby at birth. Other theories suggest that this phenomenon may be related to the fact that a baby still has a developing immune system that may not be completely competent to "handle" or "control" the virus. "What we have found is that children infected with HIV from birth or in-utero have very high viral loads, much higher than most adults, and that these high viral loads may persist for several months of life," explains Scott. Some infants may also show a very significant drop in their immune system. In other words, they will experience a rapid drop in their T-cell count. This, in turn, can lead to a very immune-depressed patient after having been infected with the virus for only a short period of time. Although many children with HIV infection have normal growth and development, some do not grow appropriately and often weigh well below the average for their age group, explains Scott. Some children may even experience delayed or abnormal development. "They don't walk and they don't talk at the same time
as an uninfected child does," notes Scott. "They also
may be delayed in some of their motor and mental skills."
For perinatally infected infants who reach adolescence, the onset
of puberty may be delayed. The clinic runs three support groups for children, which have helped many patients cope with the disease by providing a forum to talk about various aspects related to the virus and voice medical concerns. Social workers, such as Ana Garcia, an adjunct assistant professor in the Department of Pediatrics, are also there to provide answers. Families with problems paying a utility bill, questions about Medicaid, or in need of referrals to counseling services can call on Garcia for solutions. Garcia even finds time to plan activities for HIV-infected
children such as summer camp or afternoons at the beach as well
as separate outings for their siblings. |
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| Lisa Sedelnik is assistant editor of Miami magazine. Photography by John Zillioux and Ron Chapple/Tony Stone Images. |
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ifteen-year-old
Nicole, a bright, fun-loving teenager, never truly believed it
could happen to her. Until one day it did. During a routine obstetrics
check-up at Jackson Memorial Hospital, when she was just eight
weeks pregnant, Nicole received the devastating news: She was
infected with HIV, the virus that causes AIDS. "I used to
say, 'Oh I am never going to get that, that's nothing, that's
not going to happen to me,' and look where I ended up,"
she says. Fortunately, Nicole has coped with the news well. Today,
several months after the initial diagnosis, this young, single
mother remains remarkably level-headed and optimistic, depicting
the strength and maturity of someone well beyond her years. "I
try not to think about it much, because if I did, I wouldn't
have enough hope and energy to take care of my son. I'd be too
busy crying," she says. What's more, early detection of
the virus has allowed Nicole to get sound medical treatment for
both herself and her baby. She now follows a strict pill-taking
regimen, an aggressive drug therapy that requires her to take
a plateful of pills and medications every day. The effects of
these potential drug combinations, often referred to as drug
"cocktails," often help delay the onset of AIDS and
its symptoms, giving many HIV-infected individuals, like Nicole,
a new lease on life. "I'm pretty healthy. I'm taking a lot
of medications, about 15 pills a day," she says, after pausing
a few seconds to count the exact number aloud. "In fact,
my viral load has gone down so much that if they take a regular
little test it won't show up. But if they take a really sensitive
test, I have HIV, but it's really low."
icole is
just one of the growing number of teenagers infected with the
HIV virus during adolescence every year-a number that has been
steadily increasing since the 1980s. Today teenagers are highest
at risk for contracting the virus because they are generally
more sexually active and often practice unsafe sex. According
to Lawrence Friedman, director of the Division of Adolescent
Medicine in the Department of Pediatrics at the School of Medicine,
this incidence is due to adolescents' unrealistic, and often
naive, outlook on getting this potentially fatal disease.
In fact,
the greatest number of new AIDS cases in the United States falls
in the 20- to 24-year-old age group. "Since the early 1980s
(when AIDS was first defined and HIV was not yet a reportable
condition) there were only a few people in the 13- to 19-year-old
age group that had AIDS," notes Friedman. "Today, it
is estimated that 50 percent of all new HIV infection in the
U.S. occurs in individuals under the age of 25, and it is estimated
that every hour another teenager under 20 is infected with HIV."
o handle
the growing number of HIV-infected teenagers in the community,
doctors and faculty at the University of Miami/Jackson Memorial
Hospital and Clinics (UM/JMH) created the Adolescent AIDS Clinic
in 1991. The clinic was a byproduct of the many referrals from
other doctors and nurses on the medical campus who had identified
HIV-infected adolescents among their patients.
Besides
the increase in the number of HIV-infected teenagers, another
worrisome trend was the growth in the number of infants being
born HIV-positive at UM/JMH, contracting the virus from infected
mothers either in-utero or during the birthing process. (See
sidebar.) In response, the clinic's staff decided that it was
not only critical to find these infected babies, but to find
their mothers and offer them services.
nce these
teens were identified, the question remained whether these individuals
would indeed be receptive to such a clinic. Many doctors and
staff members, in fact, were skeptical that an HIV clinic for
teens would be successful. "Many thought that clinic would
fail due to noncompliance by the teens," recalls Friedman.
"Many believed these teens wouldn't come to their clinic
appointment or that they would be hard to handle."
This
special guidance and nurturing that the clinic's staff provides
has proven to be a positive experience for many teens. Often,
it is the first time these adolescents have had any consistency
in their lives. Once enrolled in the clinic, for example, teens
must come in for routine appointments, regular medical check-ups,
and scheduled counseling sessions. This strict schedule, combined
with the clinic's caring staff, creates a stable environment
for many teenage clients-so that many keep coming back.
esides
providing medical and support services to teenagers with HIV,
the Division of Adolescent Medicine has also conducted its own
research through its Teen Outreach Project. Funded by the Health
Resources and Services Administration (HRSA) for a Special Project
of National Significance Grant, the project sought to identify
HIV-infected teenagers of ages 13 to 18. Once identified, these
teens were then offered free testing for HIV and several sexually
transmitted diseases (STDs) including gonorrhea, syphilis, and
chlamydia.
The
teenagers later consulted with a psychologist, saw a medical
doctor, and then were asked to return to the University in two
weeks for results.
octors,
nurses, and case managers at the Pediatric HIV/AIDS Clinic have
their hands full. Not only has the number of children infected
with the HIV virus grown alarmingly in recent years, remarkably
enough, many babies perinatally infected with the HIV virus are
now living longer. Some have even lived to celebrate their 19th
birthday-thanks in part to the aggressive drug therapies and
other treatments now available to treat the disease.
Many
factors have contributed to the prolonged survival of children
with HIV, says Scott. For one thing, there are many more prevention
strategies available. Infected infants can now be placed on various
drug treatments to try to prevent certain types of diseases from
developing, especially during the crucial first few months of
life. If certain diseases can be prevented during this time-diseases
that can have debilitating affects on a baby infected with HIV-an
infant's chance to survive into adolescence is significantly
enhanced.